Cancer Diary 2015

DIARY 2015

Got an email to say my ‘23andme’ DNA sample has arrived in Denmark, and I should hear from them in 4 – 6 weeks.  I can’t wait!!!

Thu 15 Jan

St Thomas’s blood test

Did a second coat of paint on the bedroom floor.  Then got bloods done at St Thomas’s.  A fat nurse stuck the needle in three times, each one more painful.  She really seemed to be enjoying it.  Then she had to call her Polish boss to find out how I could get my result before next Tuesday (for the appointment with Dr M). 

Called Dr M’s secretary, to find out whether my Ca125 is over 70 yet, but she wasn’t there.  Left a message on her answerphone.

Tue 20 Jan

Dr M’s secretary phoned.  They had done the wrong test at St Thomas’s (the fat, sadistic nurse must have ordered the wrong one) but Dr M asked them to re-do it urgently.  After R left for work, the secretary phoned back and said my Ca125 is now over 70 (she couldn’t tell me the actual number) and that I should come in this Thursday.  I didn’t text R, as I couldn’t bear to have him react and be sad.  Got back under the duvet for a couple of hours more sleep.  Feeling crushed that it’s back, there’s not even a faint hope that it’s something else, and there’s more chemo on the cards.  It’s been so enjoyable having abundant hair.  I hate the thought that it will get all thin and horrid on Carbogem and Avastin.  Also, should I get my teeth fixed or is that a stupid plan now?  Avastin makes your gums bleed ... would the braces and implants be done before chemo starts?  Probably doubtful.   Also, I think the lymphoedema has taken a turn for the worse.  My leg has been sore for about two months.  Thinking about calling the bitches at the Lymphoedema Clinic, but it’s a daunting thought as they always seemed so determined not to help.  Sometimes I think it would be nice to just die now, and get it over with.

Thu 22 Jan

Royal Surrey Hospital

My Ca125 is 130.  I was kind of hoping it would have miraculously gone down, but it hasn’t.  Dr M prodded me a bit, and couldn’t detect anything.   She wants me to come in for a CT within two weeks, to see what’s what.  They will also test a bit of the original tumour (how gross.  I hope St Thomas’s kept it) and they will start the trial if my cancer cells have the 5T4 protein (most OC does).  I wish this was a stage III trial.  I might only get the placebo.  It seems so cruel.

Now my priorities are different it seems insane to spend time on this flat.  I read that the average survival after OC recurrence is about two years.  About a third make it to five years and about 4% drop dead within the first few months.   Nothing can be planned.  Everything is uncertain.  I guess I’m most likely fucked, as I don’t see how immunotherapy can advance enough before it’s too late.  It’s like being on death row.

I might die soon so why do I waste so much time!  I find any excuse to avoid writing.  I would really like to finish the autobiography and the novel at least ... and then go travelling. 

I also want to learn to drive, so I can have a driving holiday.  And get my teeth fixed.  Could dental work still be feasible?  If my next CT was clear, maybe.  I know I should keep the money for a holiday, but my gappy teeth are lifelong unfinished business.  Interesting fact: women with OC are eight times more likely to have congenitally missing teeth.

Pains and twinges

Pain in the right side.  It might be connected to taking aspirin or Ibuprofen, which I’ve been doing very infrequently.  It was quite achy again last night, but today I tried an Omeprazole, and the pain disappeared.  Been getting it on and off for a month or two.  Also, chest pain which went away after a month or two, so it was probably just tendonitis or something.  Sore leg:  my right leg is sore – inner calf, knee and thigh.  I suppose the lymphoedema has taken a turn for the worse?  I haven’t been wearing the stretchy tights for months, but I’m wearing them now.

Fri 30 Jan

Ankle swelling

In the bath I noticed with horror that my leg was visibly bigger above the right ankle.  This is new and depressing.  I didn’t wear the stretchy tights today, but I will obviously have to wear the bastards all the time.  Dreading summer.

Sat 31 Jan

The ankle swelling mostly went down over night, thank frack.

Mon 2 Feb

Had stomach/guts-ache, maybe due to the vodka and popcorn and chicken curry yesterday, so didn’t achieve much.  I feel like I don’t have enough time to do all the writing I want to do.  I could become too ill at any time.  Read up on the Ariel2 trial, which is a PARP inhibitor trial for non-BRCA people.  Maybe I should be on that instead of this placebo/vaccine one?

Made a GP appointment to ask for a referral to dermatology.  I have a tiny lumpy area at the top of my cheek that I want to get checked out.  It’s probably nothing but it’s been lurking there for weeks now.  The GP appointment isn’t for 10 days.

Wed 4 Feb

CT at Royal Surrey Hospital (Drink lots of fluid.  Can have light snack) then blood test.  Long, cold, gruelling day.

Mon 9 Feb

Lisa phoned from Guildford – my Haemoglobin level is too low so I can’t take part in the trial.  Last week it was only 9.8 and it needs to be at least 11.  She seemed to be saying that I can’t take part ever, but when I said could I apply to UCL and start again, she said yes (????)

Went to St Thomas’s for a repeat blood test, after downing a tin of steak chunks, a multivitamin, an extra B complex, a vitamin C and zinc and a swig of iron tonic.

Tue 10 Feb

Lisa called again – my Hb has now gone down to 9.3!  I can’t start the trial, but I still have to go to Guildford on Thursday, so Dr M can tell me my CT result.  Will I live long enough to write my novel?  Will I be too anaemic and/or too ill to function?  Thinking about jumping off a tall building, to get it over with.

Right ankle looked bigger when I woke up today.  Usually these things normalise over-night.  Maybe wearing the corrugated tights yesterday was a bad thing.

Thu 12 Feb

Guildford Hospital for CT result

Dr M said there is still nothing to be seen on the scan, which makes me feel wildly relieved, even though I know the cancer must be there, only too small to be seen.  She gave me a prescription for iron tablets, to take for a month, as she says I have no stores of ferritin in my body at all, and my red blood cells are small and pale.  She says I can apply to start the trial at UCLH, if my Hb goes up enough.

Thu 12 Feb

Went to see GP McC about the flaky mole thing on my cheek.  She referred me to St John’s Dermatology as a fast-track patient, although she said she didn’t think it was cancerous (but she would have to say that ...) I said I would also like to find out why I have iron deficiency, but she said that would be another appointment.  I said I had an oncology appointment in two weeks and agreed to ask them.  She said I could always make another GP appointment if I wanted to.

Fri 20 Feb

Dermatology, Guy’s

I thought they would do Mohs micrographic surgery, but in the event, the surgeon just cut a hole in my cheek!  Apparently Mohs is for other situations.  They said they were 90% sure it was a seborrheic  keratosis and that I should wait and see what it does.  I told them I have OC and I’m sick of wait and see, so they agreed to ‘scrape’ it.  I have to wash it and put Vaseline and a plaster on it every day until it heals.  I didn’t want a small crater on my face, but it’s better than worrying about the niggling 10% chance that it might be cancerous.

Wed 25 Feb

Got will in post.  Now I have to get two people together to sign it, who are not family or beneficiaries.

Thu 26 Feb

Dr M's clinic, Guy’s

She cancelled it because Dr M (male) is following me up.  I got a letter saying to ring appointments, which I did, and I told them I’d wanted to ask about why I have iron deficiency.  The woman said she would email Ma, which she did, and Ma called me.  She said she would ask Dr M for advice.  I said, “Oh, don’t bother Dr M” (remembering Dr M’s previous tirade about me complaining too much) but she had already emailed her.  Soon after that, Maxine phoned again and said Dr M had said there could be any number of reasons, and that the blood test I’d had wasn’t diagnostic of iron deficiency (eh?) and that the iron tablets would mask ... something ... and to just keep taking the tablets.  I thanked Ma effusively, even though I was none the wiser, and left it at that.  Maybe I’ll go back to the GP, after I finish the tablets.

I read online that iron deficiency can be because of taking NSAIDS (I’ve taken them very intermittently) or because of cancer in the digestive tract (possible), or coeliac disease (could I be allergic to wheat, rye and barley gluten and not know it?  I plan to avoid it for now, to see if I feel any healthier).  I also read that too much iron can cause Alzheimers – just what I need!

Fri 27 Feb

Lymph Clinic, Guy’s

I got the nicest nurse this time (whose name I’ve forgotten again) and she gave me a prescription to take to the GP: I’m getting two pairs of black tights and one pair of petite black stockings.  Not sure how I ended up with this, as I wanted one pair of black tights and one pair of sand stockings.  She said Medi petite stockings don’t come in sand – odd, I thought they did – I will ring Medi and check.  Summer is going to be total misery if I have to wear fucking tights.  I told her I’m dreading summer.

I told her the waist bands on the tights are horribly tight and uncomfortable and that I have to cut them off.  She said Medi only makes made-to-measure in thicker fabric, but I don’t want that, so she has ordered a pair of vile putrid-beige-coloured tights from a new company they are trying, to see if they fit me better.  If they do, I think she said she will get them in a better colour (but why didn’t she just order the right colour straight off???)  She said they will fade in the wash, and I guffawed.  I said I could never wear that colour in public.

When she measured my legs, the right one is 6% bigger this time (up from 3%).  She said I’m doing well (because?) I’m slim.  Most of her patients are fat.  I asked her if the lymphoedema will slowly get worse as time goes by, and she said not if I wear the garments all the time.

I told her I am going to ask the GP to refer me for LVA, because it only works in the early stages of lymphedema, and her response was the same as all the others there: total lack of enthusiasm.  I said, “Do lots of people ask about it?” and she said no-one did.  I said, “They’re happy with the tights then?” and she said, “No, I don’t think they’re happy with them.” 

She is giving me an appointment for three months time, so I can get what I need before the summer.  I thought she had also agreed to order knee-high socks for me, but then she seemed to back-track, saying I needed compression on the whole leg.  Lymphedema is too depressing.  In a way it’s worse than knowing the cancer is back.

Sun 8 Mar

R here.  I have his cold, which was very brief thanks to vitamin C and zinc tablets, but has turned into a throat-racking cough now.  We carried on watching Twin Peaks on DVD.

Tue 10 Mar

Blood test at Guildford.  It costs me nearly £25 every time I come here, and so far it’s been for nothing!

Thu 12 Mar

Dr M appointment

My Hb is still only 9.8.  (I just noticed my WBC and RBC are down slightly too.  That can’t be good.  WBC is now below normal).  I have to take iron for another month.  Dr M will write to UCLH so I can go there if they have started their trial by then, and if my Hb has gone up enough.    I think she said it has to be over 10.  Hope I heard that right.  I had thought it had to be over 11.  Suffering with constipation today.  Unexpected, as I stopped taking iron yesterday.  Dr M said chemo damages bone marrow so it can’t make blood cells as efficiently as before (it can also muck up thinking, memory and concentration for years, according to Google).

Wed 25 Mar

Phoned R P at Ovacome.  She advised me to call CNS at STH and establish whose care I am under, if I have symptoms.  She also advised me to see the GP to investigate my anaemia.  I called Marie Smith, CNS at STH.  She said I’m under Dr M and Dr M probably won’t want to interfere.  She said I can still phone the STH CNS and I can come back to STH after the trial is finished.

Tue 31 Mar

Doc McC/Blood test at St Thomas’s

Took copies of blood results as requested.  She requested an ultrasound of my liver area.  The hospital will contact me.  She gave me a request form for a blood test at St Thomas’s, so I went there in the afternoon.  I have to call Doc McC for the blood results in a week

Phoned Medi

Ordered closed-toe Elegance stockings in Sand - £80.  (Nothing else more hypo-allergenic.)

To be delivered here, in 1 -2 weeks (rec’d 14/4).

They told me that, if Elegance stockings are ordered via the GP, I can only get black or beige.

Open-toe Elegance stockings in Sand are made to order - cost - £101.

Elegance range = round knit.  Flat knit is more rigid with a seam. 

Hospital can prescribe made-to-measure, round knit, Elegance tights (fuckers always tell me they can’t!)  GP can only prescribe made-to-measure in flat knit.

Tue 7 Apr

Called Oxford Lymphoedema Practice to ask how to get referred to them for LVA.  Their PA (another Jenny – wife of Dominic Furniss?) will email me the info.

Wed 8 Apr

Blood result

Called Doc McC for blood result: Hb down to 9.5, ferritin 24, B12 and folate normal, iron low, protein level normal? Size of red cells normal at 85 (lower limit is 80).  The life cycle of red blood cells is three months, so 6 weeks is a bit early to tell.  She prescribed different ferritin tablets: ferrous fumerate, take one, twice a day.  I said I was running out of time, and she said I wouldn’t get a blood transfusion, but maybe an iron transfusion.  I asked about occult blood stool test and she said that’s not appropriate ... they would go straight to endoscopy ... or something??  From what I can figure out online, GI bleeding is quite a likely cause of my anaemia, so I would have thought that should be investigated.  Maybe they have to try the iron tablets first, to see if that fixes it.

Received info from Oxford Lymphoedema Practice.  It costs £300 + £350 for initial consultation and scan, then £15,000 for procedure under local anaesthetic.  She said some people get the scan done with them, then get the procedure elsewhere (abroad).

Mon 13 Apr

LVA enquiry

Phoned K R’s secretary at the Royal Marsden, to find out whether he was still doing his trial for lymphaticovenous anastomosis (LVA).  She was quite unfriendly and uninformative, and said it wasn’t a trial and he wasn’t seeing NHS patients anymore, just private ones, and that his existing NHS patients’ treatment was now going in ‘a different direction’ - whatever that means.  However, she gave me a number for their Lymphoedema Team and they were very helpful.  The woman said I could be referred to Mr R by my GP or by Dr M, and that I didn’t even need to be a patient at the Royal Marsden, so we’ll see who’s right.

Tue 14 Apr

Doc McC

I took a memory stick with LVA info on it and gave it to her.  She looked a bit grim at the thought of having to read a load of stuff.  I went on at length about how awful compression tights are, and how the clinic never give me anything that fits, and asked if she could refer me to K R for LVA assessment.  She said she would.  She seemed quite up for it, and agreed that there should be funding from the NHS for some of the cost of treatment in Europe.

Wed 15 Apr

Ultrasound at Guys

No solid food for six hours beforehand but black tea and coffee is ok.  The ultrasonographer, a young, slim black woman, asked me if I wanted her to tell me what she saw, and I surprised myself by saying, “I’m not sure that I do.”  Somehow I couldn’t handle it.  As I lay there being scanned, I imagined her scanning big tumours in my liver and thinking, ‘She’ll be dead soon.’ I thought of how there was no time to write my novel before the chemo starts again and befuddles my brain for another couple of years.  She scanned for ages and went over and over the sore places on my ribs.  I thought, if I don’t ask what she can see, I won’t have the information I need to see Dr M, so I should ask, but then I thought of how depressed I was going to feel tomorrow when I see Andy, and what terrible company I would be.  Suddenly, the ultrasonographer said, “I can’t see anything here.”  I said, “Wow!  Really?” and burst into tears.  She said, “It’s ok, you can cry,” as I apologised and put my hands over my face.  I couldn’t take it in. I said, “So, you can’t see any tumours?”  She said she couldn’t. She had checked my liver, kidneys and pancreas.  I asked if there was any sludge in my gall bladder and she let me look at it on the screen.  It was just a black space.  She said it was full of bile but there was nothing else in it.  I said, “I wonder why I have a pain there then?”  I asked if the scan could show adhesions or an ulcer, but apparently it can’t.  She said sometimes enlarged lymph nodes show up but not always.  I felt overjoyed.  I said, “I don’t care if it’s a mystery, I’m just so relieved it’s not a big tumour!”  I thanked her profusely as I left.  I thought what a nice person, to tell me it was ok so I wouldn’t worry.

Tue 21 Apr

Dr M

L, the research nurse, was supposed to have posted a blood form to me, but I didn’t receive it and when I got to the Royal Surrey, it was there, sitting in my notes, forgotten.  I got the test done after seeing Dr M.  She said someone will call me with the result.  She is referring me to Dr K at UCH, as their trial has finally started – yippee!  No more treks to Guildford.

Thu 23 Apr

Terrible stomach pains and all night – hard to sleep.  Must have been the gin.

Mon 27 Apr

Phoned Dr M’s sec for blood result 01483 571122 Ext 2064 – left msg asking her to text result to me. 

Tue 28 Apr

Dr K, UCLH

Dr K seems quite cool and business-like, unlike the warm and friendly Dr M.  I told her about the pain in my side, but played it down, as I want to get on the trial.  At the end of our meeting I wanted to ask for reassurance about my watch and wait situation, but somehow I couldn’t, as she seemed done with the appointment.  She was very decisive though: she is going to book me a CT and, if that isn’t bad, then I can have an actual blood transfusion (yippee - young blood!) so I can actually get on the trial.  She said I would get an appointment to see her again in two weeks, then changed her mind and said three weeks (it occurred to me later that this was because she remembered nothing happens over Bank holiday).

Fri 1 May – Tue 5 May

The pain in my side is really bothering me as it reminds me that the cancer is spreading all over the place.  Won’t the tumours get too big to succumb to chemo?  

Wed 6 May

R here, except when he left to go to the dentist.  While R was out I phoned Dr K’s secretary, V, and said I would like some advice if possible, as the pain in my side is getting worse, and I am wondering whether I need to be on chemo soon.  I said I hadn’t heard about the CT yet and she said there was nothing booked yet!  She said she would talk to Dr K “now” and call me back.  That was about 11:30am, but no-one has called back.  These trial doctors seem useless, or at least their staff do.  It’s like they couldn’t give a fuck.

Thu 7 May

Called Imaging at UCH and still no-one has requested a CT for me!  Phoned V again (Dr K’s PA) and told her my symptoms were getting unmanageable.  She said she would chase imaging but I told her I had already called them, they hadn’t received any request and they are booked up until June (my appointment with Dr K is on the 19^th May ...)  She said she knew someone in imaging and would sort it out and call me back, but once again she didn’t bother to call me back.  Getting angry.

Sun 10 May

CT Scan

UCH main building, 2nd floor – no food 3 hrs prior/no water 1 hour prior.  Scan should be reported in 7-10 days.

UCHL CT report

10 May 2015

Indication: Assess disease status – has advanced ovarian cancer.  Ca125 rising – is there any measurable evidence of disease.

Findings: Comparison is made with a previous external study from 4 Feb 2015.

There is a prominment left supraclavicular fossa node measuring 8mm in short axis diameter which was barely perceptible on the previous study.  Pretracheal lymph nodes within the mediastinum measuring up to 9mm in short axis diameter have also increased in size (up to 4mm previously).  There is a 7mm paraoesophageal node which measured 3mm previously.

There are no suspicious lung lesions and no pleural effusion.

There is diffuse plaque-like subdiaphragmatic disease, which has progressed significantly since the previous study.  Progression is also demonstrated in the peritoneal soft tissue deposits which are identified within the left upper quadrant, left paracolic gutter and retroperitoneum, anterior abdomen, left pararectal space and pouch of Douglas.  Scattered mesenteric nodules may represent enlarged lymph nodes.  Small volume ascites is new.  

No GI obstruction.

A 13mm portacaval lymph node has increased in size from 10mm previously.  There are no other pathologically enlarged retroperitoneal lymph nodes.  Bilateral pelvic sidewall nodes are also increased in size.  For example, a 17mm right obturator node has increased from 12mm previously.

No bony destruction.

Impression: There is evidence of progressive subdiaphragmatic disease with suspected early nodal involvement above the diaphragm as described.

It sounds like all these nodes and nodules and deposits were already there in February – so why did the February report say ‘no evidence of disease’!?

Phoned Royal Marsden Help Centre to chase lymphoedema and oncology referrals, and they told me: a) The lymphoedema team didn’t receive any referral from Dr McC, b) KR isn’t taking on any more patients for LVA;  c) My GP can refuse to refer me to the Marsden for Oncology because it’s more expensive than STH;  d) The Marsden can refuse to see me because I can get the same treatment at STH.  However, they might consider it if my relationship has broken down with the STH Oncologist.

Tue 12 May

GP walk-in clinic

Luckily got to see Doc McC, who says she will refer me to the Marsden.  Have to call her on Tuesday to chase referral and to tell her CT result.

Tue 19 May

Dr K – CT result

My Ca125 is now over 600 and the CT shows disease everywhere, so I can’t go on the trial. There is even an enlarged lymph node in my neck, which I hadn’t noticed, but it’s right there to see.  I didn’t react much, just rolled with the punches, but I’m afraid I have let things progress too far.  Maybe the tumours are now too big and too widespread to be destroyed by chemo.  Angry with Dr M for not giving me a blood transfusion months ago, and with Dr M for washing her hands of me.  Trying to get on the trial may have been a huge mistake.

Told Dr K I’ve asked GP to refer me to the Royal Marsden. She will write to Dr M and cc GP and Dr M.

Called Doc McC and told her CT result.  She will get referral faxed.  It was not sent yet because they thought I was going to ring to give them the fax number (yet when I offered to do that at my appointment with Doc MacC, she said, “Oh no, you don’t have to do that, they will sort all that out”).

Called MS – she will try to get me in Dr M’ clinic for this Thursday.

Called Medi:

She told me ‘sand’ is better colour for light skin than beige or caramel.  She said to wash them in non-bio detergent and no fabric conditioner.

She said the hospital could order made-to-measure tights in elegance fabric, but panty sizes I to III are a standard size for waists up to 95cm, and as I am ‘only’ 71cm (77cm with ascites) made to measure would be even tighter than the ones I have now!!  The other alternative is the ‘maxi-panty’ (£130), which would be elegance tights in size II, class I but with larger panty section (stock size, not made-to-measure).  I said I would see if the clinic would order these, and if not I will buy direct. 

I ordered:

1. Black socks, petite, size II, class I - £50 (will be sent directly, also VAT exemption form)
2. Black stockings with sensitive tops, size II, class I, petite - £101 (will be sent in 1-2 weeks)
3. Sand stockings with sensitive tops, open-toe, size II, class I, petite - £122 (will be sent in 1-2 weeks).

I could also try stockings without a top band (to wear with suspenders) – I will order them if sensitive tops don’t work.

Thu 21 May

Dr M’s clinic, Guy’s/blood test

Embarrassing having to crawl back to Dr M after trying to escape.  She shook my hand as usual when I arrived.  I said it had been a long time since I last saw her (I haven’t seen her in person since she ranted at me, in September 2013) and she said something about having heard from Dr K (I think).  I then said, “I hope you’re not still angry with me!” and she said, “I am never angry with my patients,” and that seemed to be that dealt with.

She was very obliging and went through everything.  She even did an internal examination when I said I thought I could feel a hard lump to the left of my vagina.  She said she couldn’t feel anything (phew). 

I noticed that she didn’t shake my hand when I left.  I couldn’t help thinking she had been placating me because she had been afraid I would complain or something.

Phoned GP reception and asked them not to bother sending the referral to the Royal Marsden, as I am back under Dr M now and it’s too late (got angry again – oh dear).

Dr M’s Clinic letter

21 May 2015

Mrs ## was in the process of being assessed for a clinical trial, initially at Guildford and later at the University College London, for asymptomatic Ca125 elevation.  Initially, she did not qualify for the treatment because of insufficient marker elevation and then because of anaemia.  Recently she has had a restaging scan that has shown disease progression and she has been referred back for consideration of treatment.

Her current symptoms are pain in the upper abdomen especially under the ribs on the right side, a sensation of fullness after a meal, swollen abdomen, constipation and a runny nose.  She has not lost weight.  She takes Ibuprofen and Ranitidine and occasionally Fybogel.  She has a performance status of 0.

On examination, there is a palpable left supraclavicular fossa node measuring 1.5cm tender to touch, the chest is clear, the abdomen is distended and slightly tender with no palpable masses and no ascites.  Vaginal examination is correct. The Ca125 is elevated at 830.

On CT scan there is progressive disease with plaque-like subdiaphragmatic disease affecting the liver capsule, peritoneal nodules, mesenteric nodules, bilateral pelvic lymph nodes as well as mediastinal and supraclavicular lymph nodes.  The clinical impression is that of relapsed disease.  We have discussed possible management options.  She had neurological toxicity with Carboplatin and Paclitaxel and would not like to lose her hair so I have recommended the combination of Carboplatin and Liposomal/Doxorubicin.  In view of the long platinum-free interval, we expect that this treatment would be effective in treating the disease, although she understands that this option is palliative.

We have requested an EDTA and an ECG.  I have done a referral for genetic testing.  We will commence her treatment in the next seven days, and review her in clinic after cycle 1.

Dr AM

Consultant Medical Oncologist

The final copy of my will arrived!  So satisfying to finally get that done.

Wed 26 May

Kidney function test, Nuclear Medicine, St Thomas’s

Feeling bloated, depressed and in pain.  R came with me, which was nice because it was a long day.  When the guy tried to stick a line in my arm, to inject me with radioactive stuff I yelled with pain and started crying.  I apologised, saying the pain in my side was wearing me down and the extra pain of the needle was too much.  He gave up with the line, and just injected my wrist.   I had to come back to give blood two, three and four hours after the injection, so they could test that my kidneys were flushing the stuff out of my blood ok.

R and I wandered off to Starbucks afterwards, and my wrist swelled up, so R got me some crushed ice to hold over it.  When we went back to Nuclear Medicine, the nurse strapped a bandage round it.

ECG

We went to St Thomas’s ECG before my kidney function test, to see if I could get my ECG done there, even though Dr M had requested it at Guys.  It should be no problem as everything is on a joint computer system.  However the dozy woman at the reception seemed unable to help, as it hadn’t printed into their tray.  She phoned the manager at Guys and it hadn’t printed there either.  After my kidney function test was over, I phoned Marie Smith, the oncology CNS, to see if she could help, and she sorted it out.  When we went back up to ECG the print-out was there and I got it done.  I asked for the report, because Dr M wanted me to give it to the pre-chemo nurse.  It said ‘borderline’, but I Googled it, and that doesn’t seem to be a big deal – it can just be because they haven’t stuck the pads on very well.

Marsden referral – call from Dr McC

She said the referral to the Royal Marsden has been re-sent on Friday!  I told her I had asked the surgery to not send it.  She said the problem had been that they don’t accept GP referrals, only inter-hospital ones, then went on about ‘joint care’ between the two hospitals, which sounds horrifyingly confusing all round, so I said could we just forget about the Marsden referral until my chemo is over, and she agreed.  I said I will call the Royal Marsden and ask them to disregard the referral.

Phoned Royal Marsden Central Referrals and asked them to disregard any request for a referral for me because I am back at St Thomas’s after all.  She said if a referral turns up she will shred it, and will leave a note by the fax for someone else to shred it if she’s not around.

Fri 29 May

After all my phone calls telling them to forget it, I just got an oncology appointment from the Royal Marsden in the post - how NHS.   And it’s for Sutton, which is miles away, instead of Chelsea.  Maybe I should go along and try to set things up for when chemo finishes at STH ...

Pre-chemo appointment, Guys

The usual run-through of horrifying side-effects and giving consent to being poisoned.

The three-day fast

Having read extensively online about Valter Longo’s research, I decided to try fasting for three days before chemo.  It is supposed to protect healthy cells by putting them into repair mode and to make cancer cells more susceptible to chemo by starving them of glucose.

It was really hard.  I actually ended up doing a modified fast, just celery, green beans and peanut butter/butter balls.  Also a bit of avocado with lemon.  No idea what I’m doing really.  It was hard because it gave me terrible heartburn and made me feel weak.

Mon 1 Jun

First Carbo/Caelyx

Felt very nervous that my bloods counts from before the fast would be too low to start and a re-do would reveal them to be even lower, but they were actually fine.  Then worried that my blood pressure would be too low.  When Dr M’s research assistant came to take blood for a research trial, I said I wanted to back out, because I thought if they took more blood, my blood pressure might be too low.  In the event, my blood pressure was fine (actually a bit above my normal range) so I got Ronnie to track down the researcher and bring her back.  She came back with a doctor in tow, to reassure the crazy patient I suppose, so I told her that I had been worried about my blood pressure precluding me from starting chemo, but it was ok, so I was happy to go ahead.

There was no-one chatty in the chemo lounge.  R brought me ice and milk, to cool my mouth and throat with.  I also ate some cheese and tomato, as I didn’t want to get sick.  The caelyx is a lurid orange colour, which is supposed to make your pee turn orange within the following 48 hours.  The session passed without event.  We had a lovely Polish nurse, who put the IV in perfectly.

Watched ‘Extraterrestrial’ on DVD.  It was pretty crap really.  Forgotten it already.

Ascites

Dr M’s clinic letter says ‘no ascites’, but the CT report from UCLH says I have ascites.  I don’t think the report had been sent to Dr M.  It’s appeared and got worse over the last few weeks and now it’s really uncomfortable.  When I eat it’s so uncomfortable/painful I can’t get any relief, lying down, standing or sitting, so I have to only eat tiny amounts.  My stomach looks huge, like I’m pregnant.

Carbo/Caelyx symptoms

Tue 2 Jun

Feeling sick in the morning until the chemo nurse rang to check on me and said I should take an Ondansetron (anti-sickness pills that cause constipation).  I’m already very constipated but I had to take the Ondansetron anyway.  Constipation on top of ascites is hell.

Wed 3 Jun

Nausea at times.  Did a latex-glove and Vaseline excavation to get rid of some poo this afternoon.  In the evening managed some normal evacuation, but really hard work.  Took Domperidone a bit late, so feeling a bit sick as I write this, but wanting to avoid taking another Ondansetron.  Will probably cave in fairly soon ... uunnnng.  No other symptoms yet, but it’s only day two.  Face looks flushed from steroids (I took the full four tablets, yesterday and today). 

Oh wait, how could I forget?  Disgusting taste/sensation in my mouth now.  Can’t compare it to anything I know of.  Sweet food is intolerable, so is coffee.  Had some green tea to try to get bowels moving, but of course that gives me heartburn and increases my nausea.  It’s a dilemma.  Buttered Ryvita (dark rye) dipped in humous tastes nice.  Had a mini-meal of cabbage, a mashed carrot and two tiny lamb chops for dinner.  The meat tasted good, carrot tolerable, but couldn’t finish the cabbage.  Also had a papaya – didn’t enjoy it.  Milk and almond milk is ok.  Had muesli and almond milk by the bed yesterday and today, because it quells the nausea, and gives me a bit longer before I have to crawl out of bed and take an anti-sickness pill.  Been drinking mostly water with lemon juice in it, as plain water makes me feel sick, trouble is the lemon makes my teeth feel furry.

By the way, I was promised bright orange urine in the first 48 hours, but it didn’t happen.  Read a post on Ovacome where lots of women say it didn’t happen.  They should say that in hospital as it worries people – they wonder where all the chemo went.

Sun 7 Jun

Was in a kind of suicidal fog for a few days.  Horrible constipation, burning throat, swollen abdomen and a vile taste in my mouth.  R has been doing the shopping (don’t know how I would have survived otherwise).  The constipation has almost subsided today, after a Laxido on Friday and Saturday.  Bad taste is better today too, but the throat pain is still miserable.  Also feeling achy and very aware of the swollen lymph nodes in my neck.  My stomach is still swollen, but maybe a bit less?  Not sure. 

On the plus side, I managed a couple of nights of really good sleep (about 10 hours last night).  Before the chemo, I was regularly waking up every two hours.  I think the pains in my side and back and under my ribs are a lot better too. 

Not sure what to do about the throat pain.  It doesn’t seem to be heartburn, as antacid products don’t seem to help.  It must be mucositis, which is a predicted side effect.  I tried Difflam throat gargle, which helps, but I hate the burning strong mint effect.  Also tried gargling with aspirin, which is more tolerable and might have helped, not sure.  I’m wondering if Ibuprofen would be a good idea, or would it interfere with the chemo?  Also would it cause heartburn and make things worse?  Dr M said it was ok to take it ...  Maybe I should because inflammation in my throat seems quite dangerous considering there are cancerous lymph nodes next to my oesophagus and trachea.

Made cauliflower cheese today, which was delicious, but bad because it’s full of inflammatory milk and cheddar.  It’s progress that I was able to enjoy it though.  Right now my throat is the worst symptom.  Other nice food is apples; plain cottage cheese; Ryvita with butter and humous; oat crackers with peanut butter and banana; hard-boiled egg and mayonnaise.  Sick of muesli, as it seems sickly now.  There’s a load of lentil soup in the fridge, that I got because of the constipation, but I’ve gone off acidic tomato based things now because they hurt.

I know one is supposed to be positive, because survival is all about having a positive spirit, but to tell the truth, I hate living like this.  Dr M emphasised at the last clinic that my treatment is now palliative, not curative.  She thinks the chemo will probably put me in remission again, but I know that if it does it will only be for a while, then there will be more chemo.  I don’t know how I can even face this lot – there are another five to eight sessions to go, and I feel like I can’t endure another week like this last week.  I don’t know yet how long the sore throat lasts between chemos – will it be all the time??  If the ascites would only go down, maybe I will feel a bit better.  And if my hair doesn’t fall out.

Wed 10 Jun

Royal Marsden, Sutton – oncology appointment. 

Phoned to cancel as I feel too ill to go out.  They will rebook at Fulham

Thu 11 Jun

Lymphedema clinic

My leg and groin look perfectly normal today, no doubt because I have been religiously wearing the tights.  We did the measurements, but I don’t know what the percentage was this time.

She (forget who I saw this time) ordered two items: Size 2, CCL1 black tights with maxi-panty (because the normal waist bands are too tight for me).  She said maxi-panty means maternity tights.  She also ordered black, Size 1, CCL1 stockings with sensitive top bands (because the size 2 stockings with sensitive top bands fall down).

Tue 23 Jun

Royal Marsden, Fulham (Nada, PA to Prof G and Dr B: 020 7811 8575)

Saw a registrar first, who said his name was ‘Alex’.  He didn’t think I could become a patient at the Royal Marsden, because I can get the same treatment at STH.  Then Dr AO came in (who I later discovered online was just made a locum consultant four months ago).  I used my powers of persuasion to their utmost (which is still a pitiful amount) and to my amazement, she said I could indeed transfer to the Royal Marsden if I did their vaccine trial.  It is a trial of something called PankoMab-GEX which is a monoclonal antibody that targets the TA-MUC1 tumour marker (I think ...)  It’s another placebo trial (70/30 drug/placebo).  I asked to go on it as there shouldn’t be any bad side effects.  They also offered a PARP trial, but the side-effects sound too unpleasant.   She will contact Dr M for a tumour sample and a CT report.  I think she said I have to get a blood test done at my next appointment at the Royal Marsden, on 18 August 2015.  I got the vague impression that Alex was a bit peeved because I went over his head.  Maybe I imagined that, but maybe I should be very respectful and grovelling if I see him again.

Thu 25 Jun

Dr M’s clinic, Guy’s

Saw a registrar this time.  Told her about all the terrible side effects and she said she wanted to get some more chemo into me before considering reducing the dose, which I guess is the right thing to do.  I found out that I can actually get my blood test done right there in the Tabbard Annex.  I always assumed that the blood test queue was for the DVT people, who share the Oncology waiting room.

I feel so stupid!  Since 2012 I have been having terrible problems trying to get them to do the blood test in the main blood test department - they would say they didn’t have the request on the system and I would have to wait for a manager to sort it out for me.  This must be a classic example of me not communicating properly with people and living on another planet!

M’s Clinic letter:

25^th June 2015

It was a pleasure to review Ms T in the oncology clinic today.  Since her last clinic review she has had her 1^st cycle of Carbo/Caelyx chemotherapy.  She tolerated this relatively well.  Her toxicities include: G1 constipation requiring laxatives, G1 mucositis of her throat particularly in the first week following chemotherapy.  She was able to eat and drink but clearly this was painful.  There are no infective symptoms to report.

Ms T tells me that since her last review she has also gone for a 2^nd opinion to the Royal Marsden hospital and been seen by Dr O who has advised that if she progress after this line of treatment there are further options available.  Dr O plans to write to Dr M about a clinical trial that may be of interest.

Provided her blood results are satisfactory we will proceed with her 2^nd cycle of chemotherapy.  I have added sucralfate to her TTOs.  I note that her baseline scan performed at UCL is not on our system and have requested for these images to be transferred across.

Dr SI

Clinical Lecturer in Medical Oncology

Addendum Hb 7.7.  Blood transfusion organised on CDU

Thu 25 Jun

Stretchy tights

Took the tights Medi sent me back to the Lymph clinic (they sent Class 1, Size 1, petite instead of Class 1, Size 2, petite with maxi panty – they insist they followed the order).  I’m keeping the Class 1, Size 1 stockings with sensitive tops because they are what I asked for, although having tried them once, the top band seems really tight – leaves a deep indentation of the bobbly pattern in my skin. 

A replacement for the wrong order had arrived for me: this time is was Class 1, Size 1 tights with maxi-panty, instead of Size 2.  This was really irritating, but I tried them on anyway, in one of the empty rooms.  However, the maxi-panty was ludicrous – the panty section came right up to my chest, plus being really baggy.  I gave them back to Jackie and said the body came up too high, so I couldn’t wear them after all.

M was busy in the clinic, so J said she would phone me later.  She duly phoned and we had a very frustrating conversation where she insisted she had ordered the correct tights and I insisted it wasn’t what I asked for.  She spoke in the tightly controlled tone a shop manager would use, when talking to an unreasonable complaining shopper.  I remained absolutely calm, even when she suggested I try Marks and Spencers support tights, as she had nothing to offer me (is she fucking kidding?)  She said my lymphedema is very mild and had reduced.  I said, Yes, it has reduced, because I‘ve been wearing the tights every day.  (Am I supposed to NOT wear them, and let my leg swell up, before these bitches will do their job!)  After the call I went back to bed and briefly imagined slicing her head off with a chain saw, then cutting her body into slices.  I won’t think about it anymore though, as I can’t get stressed about this shit.

Fri 26 Jun

Wig appointment, STH

Two women standing over me, one was the owner of the service or the wig company or something.  One brought different wigs from the shelves and the other stuck them on my head to see if I liked them.  I tried to get into girly mode, but of course I have no idea how to do that.  I think it went ok though.  I ended up with a compromise: it will be the right colour and a rare curly wig, which is great, however it will have a side-parting which I’m not sure I will be able to get used to.  I thanked them and they said I would get a text when they have one in the colour I want, in a couple of weeks.

Mon 29 Jun

Second chemo

Can’t remember much of note.  I didn’t attempt to fast before this one.  Didn’t chat to anyone in the chemo lounge.  I think this was the time when a man with gross ulcerated legs and yellow skin was in the lounger across from me.  Last time must have been when I was next to a man with brown discoloured patches on his arms and face.  The nurse couldn’t get the needle into my forearm veins (she tried both, leaving them feeling bruised) and I ended up with it in the elbow bend of my left arm, which was a pain because I had to keep my arm out straight the whole time (very difficult to pull up knickers after wheeling everything out to the toilet for a pee).  R was there, being a trooper, bringing me Hula Hoops and milk and ice and falling asleep on the hard chair.

Wed 1 Jul

The steroids woke me up before 6am, got up about 7am.  Couldn’t lie there in the chemo stink anyway.  Brushed my teeth first of all, to try to get rid of the taste, then had a bath and washed my hair.  Feels great to wash off the smell, but it will be back.  I think it’s takes a week or two to dissipate. The poison is fed into my veins, and my circulation takes it all around my body: organs, muscles, bones, brain, skin.  It seeps out through my pores and my skin stinks of it – a sickening smell that gets all over my skin and clothes and hair and bedsheets.  The strange thing is, R says he can’t small anything.  The chemo seems to drastically enhance my sense of smell.  I can smell everything, and everything smells gross.  Took off the sheet and pillow cases and washed them.  Put big massage towels on the bed and sofa, so I could lie down again.

I hate the steroids.  They cause depression and suicidal thoughts, which probably explains my week of depression and suicidal thoughts after the last chemo.  They also cause osteoporosis and all kinds of other shit.  Dr M’s registrar said I could reduce to 4, 3 and 3 this time.  Maybe I could even try 4, 3 and 2?

The sore throat hasn’t kicked in yet.  Just feeling vaguely nauseous.  They gave me some ‘Antacid  and Oxetacaine Oral Suspension’ for my throat.  It’s an antacid plus a substance that coats the throat and anaesthetises it, but I looked at the ingredients and it contains aluminium oxide (as hydroxide).  Isn’t aluminium very bad??  I thought it was linked to dementia and Alzheimers?  I think I won’t take it until I know more.  Piriton has also been linked to Alzheimer’s, and they load me up with that too, before the chemo.

It’s supposed to be the hottest July day for nine years today: 36^oC (97^oF).  Got all the windows wide open, shades down, and not even attempting to wear the stretchy tights.

Thu 2 Jul

Constipation.  Nausea.  Misery!  Fucking unbearable.  I stink too, of the chemo stink.  Trying to hold off on the Ondansetron because it will make the constipation worse.  Did some manual evacuation, but hasn’t really dented the backlog.  Too nauseous to do anything but lay on the bed or shuffle up and down the flat.  Read a bit of Machiavelli.

Fri 3 Jul

R was here and gallantly went to Borough Market to get me some prune and chocolate torte as a constipation cure.  Ate half a slice and after 2¹/₂ hours it worked like a miracle.

Sun 5 Jul

I can’t wait to have my blood transfusion tomorrow morning.  I feel starved of oxygen.  Otherwise not feeling as bad as I did after the last chemo.  I don’t think my throat is as sore as last time, and the ascites seems to have gone right down – unless that’s just an illusion because I lost 3lbs.  However, I still feel nauseous all the time and there is still a constant burning sensation in my throat, except when I’m eating.  Water makes it worse, so it’s hard to find something I can drink.  I’m keeping a slice of prune torte in reserve, in case of constipation (didn’t go at all yesterday, but functioned very well today). 

There is no pleasure in life when I feel physically wretched, except that I can forget for a while when I’m reading a book.  I’m reading my Paul Strathern philosopher series (I’ve read Confusius, Plato, Aristotle, Machiavelli, Descartes, Locke and Rousseau so far).  They are so interesting and entertaining. 

Just typed out Dr M’s last clinic letter above, which reminded me that I’m doomed and will be dying horribly and miserably in the near future.  At what point would I have the courage to kill myself?  Will I ever?  It would be such a gift to die by accident, say under a bus.  I feel depressed and physically wretched.  Just fucked really.

Later: dancing around makes me feel better.

Mon 6 Jul

Blood transfusion

Haematology Day Unit Reception, 4^th Floor, Southwark Wing, Guy’s, 9am.  Each bag of blood is one unit, and each unit makes my haemoglobin go up by one point.  This was very disappointing and put me in a bad mood.  Not only is the effect minimal, but it takes two hours for each bag to empty into my vein and the effect starts to diminish after two weeks!  It hardly seems worth it, but it has to be done so that I can have chemo and it might need to be done several times before the chemo course is done.  I thought blood didn’t bother me, but it’s actually quite freaky to have someone else’s blood put into my body.  It was just the red cells, separated out, and looks thick, like jam.  It came from just one person (I wonder who it was, and whether it was a man or a woman).  When it was over, I didn’t really feel any different.  My hopes of miraculous rejuvenation were just a hollow dream!

Thu 9 Jul

Still got ‘heartburn’ (mucositis) from the chemo.  Still exhausted.  Stomach seems to have got flatter now.  Still got swollen lymph node in neck.  Not sure if it’s got any smaller.

Thu 23 Jul

Dr M’s clinic, Guys

Saw a different, frostier registrar this time.  Felt like she had read the ‘very anxious’ warning in my notes or been briefed that I was a horrible patient by Dr M, but maybe I was being paranoid.  Anyway, I lived up to my reputation, questioning why I had to have CTs rather than MRIs all the time.  She said CTs produce a better image, but I know that’s not true if they use contrast with the MRI.  I read online that the reason is actually costs and staffing.  I didn’t argue though.  She said, “Do you not want a CT?” which is ridiculous of course, because I have to have the scan to see if the chemo is working – I have no choice.  I asked why my Royal Surrey CT report from February said NED, when it seemed that all the tumours on the May CT were actually already there in February.  She said they didn’t have that CT on the system, so I said I would phone Dr M’s secretary and ask her to send it over.  By the time I left, I felt she couldn’t wait to see the back of me.

M’s Clinic letter

Clinic date: 23.07.15

It was a pleasure to review Ms T in the oncology clinic today.   She has been feeling generally well but has been experiencing fatigue.  She recently had a 2 unit blood transfusion but did not notice a significant improvement in her symptoms.  She is also experiencing some nausea and constipation but these are relieved with antiemetics, laxatives and modifications to her diet.  She does not have any mucositis.  Examination was unremarkable she has a performance status of 0-1.

I have prescribed Ms T some Docusate Sodium today.  She will proceed to her 3^rd cycle of chemotherapy pending bloods today and we will see her again in 4 weeks with a CT scan.

Dr EJ

SpR in Medical Oncology

Mon 27 Jul

Third chemo

Can’t remember much about this now, all the chemos are merging into one.  The under-eye swelling happened again, and once again they gave me Piriton. I pointed out that Piriton is now known to cause dementia but the nurse said that is only when it’s taken long-term.   I asked if I could take my own Clarityn before the next chemo, and she seemed to think I could.  Have to ask at the next oncology clinic.

Wed 5 Aug

Wig trim appointment

This appointment was a waste of time, as my hair is still too big to fit the wig over.  We decided that I would come back and get the wig trimmed when/if I went bald.  I called in to the hospital hairdressers’ to get some advice on whether to have it layered or not.  The woman was different to the nice manager I saw last time.  I got the impression she thought I was a neurotic twit and was humouring me.  When I asked for an appointment she offered August 12^th, then I (luckily) remembered it was the day of my CT, so I said I would check the time at home and call her back.  When I got home I was glad I could just leave it.  I did some food shopping on the way back and by the time I got home I was totally exhausted.  I felt I could barely drag myself (and the shopping) up the stairs.  I’ve never known fatigue like this.

Thu 6 Aug

Seagulls wake me up at seven every morning now, squawking as they circle above Loughborough Estate, and all the little garden songbirds seem to have disappeared.  There’s just a blackbird and a couple of pigeons left.  Is that normal for August? Even the crows seem to have disappeared.  I heard that the urban gull population has increased fourfold.

Feeling so tired all the time, it’s hard to do any writing, even this journal.  This is day 11, so expecting to start perking up from tomorrow onwards.  I’ve had a slight burning throat again this week, but nothing like as bad as after the first round of chemo.  The nausea tailed off a couple of days ago.  It’s depressing to note that the enlarged lymph node in my neck is still there and still visible.  I also have two in my right groin.  I would like to imagine they are to do with lymphoedema, but I know they’re not.  I wonder if this chemo is still working.  Feeling a bit more bloated again, whereas my stomach felt flat up to a few days ago.

Fri 7 Aug

Feeling better today as predicted.  Found myself whistling over the washing up.  Gave a flurry of replies on Ovacome and one post.  Later: got a twinge in my back – please don’t let it mean anything!  Also heartburn, as a result of eating jam on homemade bread.

Wed 12 Aug

CT at St Thomas’s

I don’t really mind long waits in hospital waiting rooms anymore as long as I have a good book to read, as that’s what I would be doing anyway.  The only drag is having to get washed and dressed and go outside.

I asked the Radiologist why people were given CTs instead of MRIs.  He admitted that CTs are given because of the greater costs and staffing needed for MRI.  I asked him how many CTs he would allow himself to have in a year (this is my third this year) and he said, “Honestly, I would have as many as my condition required.”  I felt slightly paranoid under the scanner after having grilled them, in case they ‘accidentally’ zapped my head with a huge dose to shut me up.

12.08.15

CT Thorax & abdo & pelvis with contrast:

Comparison is made with the previous outside hospital scan of 10.05.15.

No supraclavicular, axillary or size significant mediastinal lymph node enlargement.  There is a tiny calcified granuloma within the right lobe with benign appearances.  No other parenchymal pulmonary or pleural nodule.  No pleural effusion.

The small volume ascites noted previously has resolved.  There is a persistent right subphrenic disease and scalloping of the right lobe of the liver which is unchanged.  Their are capsular deposits indenting the liver parenchyma is seen adjacent to the right lobe, related to the falciform ligament and in the region of Morrisons’s pouch.  The deposits related to the falciform ligament have reduced in size and density in keeping with response to treatment.  There are however a number of new, ill-defined low-density lesions which appear intra-parenchymal within the left lobe of the liver (series 3/image 136), segment 6 (series 3/image 137) and more peripherally within sepment 7 (series 3/image 22).  There is an ill-defined low-density lesion at the splenic hilum measuring 1.9 cm which has increased in size (previously 0 cm and likely represents a capsular splenic deposits.

The pancreas, gallbladder, adrenal glands and kidneys are unremarkable in appearance.  The bowel is not obstructed.

There are multiple peritoneal deposits in the left upper quadrant extending into the left flank, lateral to the left kidney.  The largest deposit here measures 4cm x 2.8cm (series 3/image 147) and is unchanged in size.  There is peritoneal thickening along the left pelvic sidewall which is unchanged.  There are bilateral enhancing anterior external iliac nodes which have reduced in size.  The largest on the left currently measures 1.4cm long axis (previously 2cm).  No pelvic side wall, iliac chain or para-aortic lymphadenopathy.  Evidence of previous para-aortic and pelvic lymph node dissection is noted.  Previous hysterectomy noted.

Conclusion:

Mixed response.  The ascites has resolved and the anterior external iliac nodes are smaller.  Many of the disease sites in the upper abdomen however are unchanged and there are definite new capsular or parenchymal liver lesions and an enlarging splenic hilar lesion.  Appearances are suspicious for disease progression on chemotherapy.  We discuss in the MDM please?

AJ

Tue 18 Aug

Royal Marsden

Saw a young, female registrar, who told me my CT result.  She said there were areas in my liver now, and she kept saying “I’m so sorry,” like this is the end for me.  It quite annoyed me, as I don’t feel about to die yet.  The CT report also said there was no disease in the supraclavicular lymph nodes, which must be wrong because there is still a big one which can easily be seen and felt.  The registrar agreed with me that it was definitely there.  She said maybe they hadn’t scanned that far up (but then why report that there is no disease there!?)

She thought it was likely that Doc M would suggest weekly Taxol now, as I seem to be resistant to Carboplatin – i.e. I have had disease progression during chemo.

After the registrar left, a research nurse came in and told me about another trial I might be eligible for (I’m not eligible for the PankoMab one now).  It’s another monoclonal antibody trial, of MEDI4736.  I said I would like to be considered for it, but later, when I read the horrifying list of side effects, I changed my mind.  Also, you have to have a biopsy first, to see if you have the right mutation for the trial, and that takes two to four weeks to come back from America.  I asked the nurse a few questions about the trial, but she didn’t seem to know anything and actually didn’t seem very bright.  At the end, she gave me her extension and said to ring if I had any questions, or if there were any long words I didn’t understand in the information handout (sigh).

RM Clinic letter:

Clinic 18.08.15

Ms T attended the Out-Patient Clinic today having completed three cycles of second line chemotherapy with Carboplatin and Caelyx.  She is due to see Dr M next week for the results of her CT scan.  Currently she is asymptomatic from her disease and has tolerated chemotherapy well.

Unfortunately, the CT scan has demonstrated new hepatic metastases.  There has been resolution of the ascites and a slight reduction in the anterior external iliac nodes however appearances are suspicious for disease progression.

I have explained to Ms T that as she has platinum-resistant disease we would recommend weekly Paclitaxel on symptomatic progression.  Another option would be to consider clinical trials such as the Medimmune study.  JJ our Research Specialist Nurse has met with G today and provided a patient information sheet.  I have explained that we would require a biopsy to determine eligibility of this study.

She is due to see Dr M next week and will let us know if she wishes to proceed with screening for this trial.

Dr EY

Specialist Registrar to Professor G/Dr B

Thu 20 Aug

Doc M’s Clinic

I saw the same registrar as last time: she seemed to be in a jollier mood this time.  I was probably jollier too, as I’d had two days to get used to my death sentence from the Marsden.  She had some good news: the MDT meeting had come to the conclusion that the spots in my liver could have appeared between the UCL scan on May 10^th and starting chemo on June 1^st, so I may not actually be resistant to platinum.  It would be great if that is true.  I said I had Googled liver mets and all I could find out was that it was a dreadful prognosis.  I asked her if she could give me any glimmer of hope, but she just said, “Well, it’s not good.”  But we are hoping the Carboplatin will stall it.  She said if my Ca125 test today is down, then I can continue on Carbo-Caelyx, but if it goes up, then they will have to decide what to do.  I have to ring M, CNS, tomorrow afternoon to find out the Ca125 result.

I asked her if they would tell me about any trials that came up, and she said definitely.  I asked if this included trials at other hospitals too and she said yes.

I asked her if I could take Clarytyn instead of letting them give me Piriton during chemo, and she said that would be ok.  She said I should take one the day before chemo, one on the day of chemo (as long as they didn’t give me Piriton) and one the day after.

M’s Clinic letter

Clinic date: 20.08.15

It was a pleasure to review Ms T in the oncology clinic today.  She had a CT scan on 12^th August which has shown a mixed response to treatment.  Of note, there are new liver lesions and a large splenic hilar lesion.  Ms T had already been told the result of her CT scan when she went to her appointment at the Royal Marsden hospital.  I note, however, that this scan was compared to a baseline scan from UCH which was performed on 10^th May 2015.  Ms T only started chemotherapy on 1^st June so her baseline scan was almost 1 month prior to actually starting chemotherapy.  In the context of her marker responding (Ca125 was 781 in July compared to 922 in June), we have recommended that she continues with chemotherapy if her bloods today are satisfactory.

Ms T is feeling generally well and has no new side effects from treatment.  She continues to experience grade 1 fatigue, nausea and constipation.

Ms T will proceed to cycle 4 of chemotherapy pending bloods today and we will see her again in 4 weeks

Dr EJ

SpR in Medical Oncology

Fri 21 Aug

The registrar I saw yesterday called me, so I didn’t have to call M after all.  She said my Ca125 has gone down to 688 (I think), so I will be able to stay on Caelyx.  She said I would get another CT after the sixth chemo.  I feel I have been reprieved, despite the fact that I have to suffer more Caelyx on Monday.  At least I won’t have to lose my hair.

Mon 24 Aug

Chemo no.4

Saga today with the Piriton.  I tried to avoid taking it as I had taken Clarityn beforehand, but somehow the nurse (L, the Irish nurse) ended up giving me IV Piriton anyway, after the Caelyx and before the Carboplatin.  Next time – next time I will definitely insist.  Lorna stuck the needle in really painfully – I’m sure she did it on purpose because I was fussing about the Piriton.

Fri 28 Aug

Day 5.  Sigh.  Feeling Queasy all day and listless.  Watched shit telly all day.  Yesterday was awful, lying in bed all day with horrible nausea and bum pain.  I think the pain might have been due to the Dioctyl laxative I took.  Today wasn’t as bad, just nausea, burping, hurting skin (around face, neck and chest) bad taste in mouth, heightened awareness of bad smells and headache. 

The slightest exertion makes my heart race and pound, and if I lay on my back it feels like my heart is going to explode.  How can it survive this punishment?  Caelyx is known to damage the heart.

The lymph node in my neck freaks me out - it’s so obvious the chemo can’t be working.  Is it spreading in my liver too?  I don’t know how I can cheer up L.

Sat 29 Aug

Day 6.  Terrible night last night, waking up every two hours feeling nauseous.  Managed to keep it at bay with almond milk with raw oats sprinkled in it.  I can’t do this!!

It’s now 2.34pm and I’m getting ready for a run to the garage for supplies.  Feeling fragile and nauseous and SO bored with being ill.

Sun 30 Aug

Day 7.  Feeling suicidal today and actually for the last few days.  Maybe the drugs make me feel like this.  I need a counsellor or something, or maybe a support group.  Thinking I don’t trust Dr M.  How can they let me carry on with Caelyx for another three months before scanning?  The tumours might have engulfed my liver and spleen by then.  Should I ask for a scan after one month instead of three?  Can I have two CTs in a month?  Would they let me have an MRI instead?  I will ask at my next clinic appointment.  Also, the Caelyx is unbearable torture.  Should I ask them to lower the dose?  Or would that make it ineffective?  Why isn’t there technology to identify which chemo will work?  Is there a trial for this?  Are there any trials with no toxic side effects?

Tue 1 Sep

Day 9.  Got better night’s sleep last night, 6 hours + 2 + 1.5.  Still got the shit taste in my mouth, although ‘taste’ doesn’t exactly describe it, it’s more ‘unpleasant sensation’.  Still got ‘heartburn’ which is actually an inflamed throat – a miserable feeling.  Stomach also feels inflamed, but not as bad as yesterday – yesterday it felt like there was a rock in my stomach.   I wonder if that’s what they mean by indigestion?  Not as burpy today either.  Managed a little jog up and down the flat, also feel more mentally alert.  However, the enlarged lymph node in my neck continues to horrify me.

Thu 3 Sep

Day 11. Hard to sleep last night, with uncomfortable feeling of lumpy discomfort in chest and stomach area.  Are the tumours still growing?  Today I still have a slightly inflamed throat but other symptoms have receded.

Fri 4 Sep

Day 12.

Still slightly queasy, slightly throaty, with slightly upset bowels, and it’s day 12 now, but I do have more energy.  Heart still racing and pounding at the slightest exertion.

Sat 5 Sep

Day 13. Deadly chicken farts today, which were alarmingly difficult to suppress when I went out food shopping, but otherwise feeling better. 

Mon 7 Sep

Blood transfusion no.2

They just gave me one unit of red cells, as my Hb was up to 8.3 today (from 7.7 two weeks ago).

Thu 17 Sep

Doc M’s Clinic, Guy’s

I was surprised (and a bit alarmed) to find Dr M herself waiting for me this time.  She wanted to discuss things because I suppose they are at a bit of a crucial point, with the last CT showing new disease etc.  She said it’s rare for some tumours to respond and others not.  Things seemed to go smoothly enough.  I told her about all the side effects of Caelyx I’ve been having.  I told her that I spend the first couple of weeks thinking about ways of killing myself, and when she said don’t do that, I said it wouldn’t happen as I’m too ill to get out of bed.  I said that it wears off after the first two weeks and that today I feel happy.  She seemed to do a double-take when I said that (like she thought I shouldn’t be feeling happy, or that I’m nuts). 

She showed me my last CT on the screen, and there was no sign of the lymph node in my neck, although we could both see and feel it very clearly.  How strange that the CT doesn’t show it.  It doesn’t inspire much confidence in CTs.  I asked if my CT from February had arrived yet from the Royal Surrey, but it still hasn’t.  She said she would ask her secretary to chase it.

I told her I only received one unit of blood at my last transfusion, and she said she had just found out about some sort of toxicity from blood transfusions, which she didn’t know about before.  I have no idea what she meant.  I said it seems mean to just keep me bumping along at the bottom and she seemed to agree, saying it was inevitably going to drop again after chemo.

Apparently if six rounds of Carbo/Caelyx are not enough, I will need nine (of both drugs).  I said that was really daunting and she said I don’t have to have them.  I said I don’t have a choice as I don’t want to die (not yet).  How can she say I don’t have to have chemo – does she want me to just let myself die?

M’s Clinic letter

17.8.15

Ms T has completed four cycles of Carboplatin, Liposomal and Doxorubicin.  She does not tolerate the treatment very well for the first 12 days where she has persistent nausea and fatigue.  She also has grade 1 mucositis.  Her constipation is chronic and she takes laxatives.  Her presenting symptoms of pain in the right hypochondrium and ascites have resolved.

Her performance status is 1.  On examination, there is a left supraclavicular node of 1cm and two right inguinal lymph nodes of 1.5 and 1 cm.  There is no ascites and no other abnormalities.  Her Ca125 has increased slightly following a previous response and is now 716.  Her bloods are otherwise correct for treatment.

In view of the symptomatic response, our plan is to continue with cycle 5 and add in Aprepitant to her treatment to see if we can improve her anti-emitic cover.  We will re-check her Ca125 marker prior to next cycle and re-image if it shows any further increase.

We will review her again in clinic in 4 weeks.

Dr AM LMS, PhD

Consultant Medical Oncologist

Mon 21 Sep

5^th chemo

Didn’t take the Clarityn this time, as they insist on Piriton anyway.  Moaned to them about the possibility of my eye swelling, but in the event I was proved wrong and it didn’t swell.  L, the Irish nurse was vicious again with her IV needle, and I ended up with tears all over my face and L complaining that I kept pulling away.  Ronnie demanded that another nurse come and do it, so another nurse came and managed it with no problem.

Before I left I asked a nurse for my blood results, and she said she couldn’t tell me the Ca125, but my Hb is an amazing 9.9!!

Tue 22 Sep

Phoned M to find out my Ca125 – it has gone up to 717 from 626.  I said I was surprised that I had been given more chemo, since it doesn’t seem to be working.  She said she will email Dr Ms.

Fri 25 Sep

Emailed M to ask if she had heard back from Dr M.  She called back and said Dr M hadn’t said much but M thinks we will wait to see whether my Ca125 goes up again in three weeks, as they base treatment decisions more on symptoms than on Ca125.  We agreed that it would be a good idea if I got a blood test two days before my next clinic appointment.

Sun 27 Sep

Day 7.  Friday night and Saturday was awful.  Feeling much better today, except for ‘heartburn’ and mild nausea.  It’s a burst of late summer fine weather this weekend and next week, but I don’t feel like going out so far.

Mon 28 Sep

Can’t stop burping.  R came round for a few hours, so I made the effort to wash and dress etc.  R and I went and did a big Tesco shop also, then he had to leave to go to a Benedict Cumberbum party at the Barbican, BC wanted to thank the staff who have been collecting for Syrian refugees for him.

Tue 29 Sep

R phoned, very chuffed about how he had a 10-minute conversation with Benedict Cumberbum and another actor at the party last night, which included R telling BC things he didn’t know about Marvel comics (BC is going to be a Marvel character in some film or something).

Still burping, but not as much.  Got a miserable burning throat today.  I think all the starchy, processed goodies yesterday may have aggravated it.

Wed 30 Sep

Horrible burning throat last night, as I was trying to sleep.  Sipping soluble aspirin seemed to make it worse, but finally calmed it down with my trusty almond milk with oats sprinkled in it.

Tue 13 Oct

Tabbard Clinic to get bloods done for Thursday.  R came over.

Thu 15 Oct

CT scan / Dr M’s Clinic

Just as I was about to leave the house, M the CNS phoned and said I could have a CT at 11am today, before seeing Dr M, because there had been a cancellation.  When I got to the Tabbard clinic, a nurse put a cannula in my arm, right in the bend.  It was too painful to bend my arm, but I let it go as I didn’t want her to do it again.  Up in CT I couldn’t use my arm to fill in their form or go to the loo, and started to feel very pissed off.  The nurse said I didn’t need to drink water, then half an hour later decided I did.  I asked her to move the cannula, because it hurt and she said I would have to go back to the Tabbard clinic, which I did.  When I got there the nurse (a different, more senior one) said it shouldn’t hurt as it was just a plastic tube, not metal, and that I could move my arm if I wanted to.  I still protested, so she moved the canula.  Then I burst into tears and she said did I want to come into a room and talk about what was upsetting me, so we did and I spilled everything (anger at big pharma not really wanting to find cures, and getting stabbed with needles and poisoned all the time and the elastic tights not fitting properly).  Afterwards I felt much better and went back up to CT.

After the CT, I was seen by Dr M. She didn’t just shake my hand this time, but held it for a moment, which made me think she definitely expects me to die very soon.  She showed me my CT on the screen, including the new splodges in my liver (there are some on the left and the right) and the node in my neck which, for some reason, is now visible on the scan.  She did a physical exam, and said she thought the nodes in my groin might be smaller (I don’t think they are).  I asked if there was a trial or something to identify which chemo works for which patients, but she said there isn’t.

My Ca125 has gone up again - I think she said to eight hundred and something - so I’m not getting any more Carbocaelyx.  She suggested I go on the Tax-torc trial, which is weekly Taxol and an mTor inhibitor.  The trial doctor happened to be in the clinic, so she brought her in and I agreed to an appointment with the trial people on Tuesday.

CT report

15.10.15

No pulmonary embolus is seen.

No parenchymal lung metastases identified.

Extensive metastatic liver disease is seen.  The metastases have progressed.  A lesion in segment IVb (image 107/series 4) measures 21 mm, previously 10 mm.  The disease in the lateral segment left lobe has also progressed with a marker lesion now measuring 2.3 cm (Image 133/series 4), previously 1.4 cm.

The focal splenic lesions are stable.  Normal kidneys.  Normal pancreas.  No para-aortic lymphadenopathy is identified.

The pararectal soft tissue mass is stable.  No bone metastases are seen.

Opinion.  There is evidence of disease progression the past 2 months.

G R

Tue 20 Oct

TAX-TORC Trial

Clinical Research Facility Outpatients, Floor 15, Tower Wing, Guys.  Saw and a Greek doctor called Dr LZ, who had big, Greek eyes.  I decided to be straight with him, and told him that when I asked people about other trials, they would tell me they knew nothing about them, so how could I know I was getting the best trial?  Did people have my interests in mind or just getting people for their trial?  We discussed various things and I told him I had read on CRUK that combined vaccine and checkpoint inhibitor trials offered the most promise.  He mentioned that immunotherapy has had amazing results for melanoma in recent years and then he said if he had to choose between maintenance chemo or having a month to live but with the chance of a cure, he would choose the latter!  

I told him I had been offered the MEDI4736 trial at the Marsden, which is immunotherapy.  We had a long discussion about the choice and in the end he brought in his boss, an Indian doctor, to help me decide.  The Indian doctor said I should phone the Marsden today to see if they are still recruiting.  I have a week to mull things over before I have to sign the consent form.

Then I was shown into their chemo lounge, which only holds two loungers.  There was a woman having chemo into a port thing in her chest.  It was very quiet in there, much more tense than the Day Care Unit.  A nurse (or was she a registrar?) called D came and told me about everything, then a trainee (a black guy with afro hair, called V) came and took a blood sample.  He was incredibly attentive and conscientious, which actually makes me feel tense, but he did take the most painless blood sample I ever had!  It was like being bitten unawares by a mosquito in my sleep.

I signed up for a separate trial they are doing, which only involves giving a bit of blood and agreeing to them testing my tumour sample.  The trial is called: ‘Quantitative detection of circulating biomarkers and tumour genetic profiling in cancer patients’.  Apparently, if they find anything that might help inform my treatment, the research doctor will tell me and discuss the options.

Later: phoned the Marsden – they are not recruiting for the MEDI4736 trial anymore.  Jenny, the person I spoke to, said she will email SB to see if there is anything else on offer, and call me back.  She said there is an immune study coming up in Dec/Jan for Novolomab +/- Ipilimumab (Ipilimumab is the one that worked so well for melanoma).

Wed 21 Oct

Research Nurse? Jenny called back re Marsden trials.  Dr B told her there is nothing else available at the moment and the Tax-torc trial is my best option.  There are new immunotherapy trials due to start in the New Year.  She said to keep my appointment with them on Nov 17^th to update them.

Fri 23 Oct

Phoned the Care Oncology Clinic (C.O.C. – unfortunate acronym), and made an appointment for next Friday.  I have to get my recent blood tests and scan reports to show them.

Mon 26 Oct

Supposed to be going to Lordship Lane Carpets, but didn’t go because of constipation, despite two Movicols and a Dioctyl.  Made some irritable calls to Dr M’s Secretaries to try to get my February CT downloaded.  I know it’s irrelevant now, but it bugs me that it still isn’t available. I think the Royal Surrey may have misreported it.  I also requested blood and CT reports (for the Care Oncology Clinic next Friday).

Tue 27 Oct

TAX-TORC trial

Up to 15^th floor, Tower Wing again (Phase 1 Team) this time to sign the consent forms for the trial.  Quick visit, but seemed long because I forgot my glasses and couldn’t pass time by reading.  Saw the Greek doctor again.  He seemed scornful when my only question was “Do you have a cold cap here?” obviously thinking I was very shallow and vain.

Fri 30 Oct

Care Oncology Clinic

Arrived for my appointment at just after 3pm and greeted by a nurse who gave me a form to fill in: very brief medical history and lots of quality of life questions.  I ticked ‘no’ to them communicating with my GP and Oncologist.  I gave her my diagnosis letter and a couple of recent CTs and blood tests, so she could photocopy them.  After a 15 minute wait, the nurse did my weight, blood pressure and a blood sugar thumb-prick test.  She said she moved to Brixton last year, from Clapham, and her family has lived in Brixton for 45 years.  She loves Brixton (she’s West Indian).  

Into the consulting room with a 60-ish man with a foreign accent, maybe eastern European, called  Dr RS. He spoke very fast and was hard to understand.  I asked if he minded if I took some notes so I didn’t forget and he said he didn’t mind.  I let him talk himself out about mostly stuff I already knew, like what the drugs were.  After about 30 minutes, he had said his piece and I attempted some questions, but he was the worst listener, and kept speaking over me in a tetchy sort of way.  I was thinking, “This is terrible!” and had an urge to get out of there, but I wanted to stay and get my £400 worth.   It was hard to get any intelligible answers to my questions, which were:

How did you arrive at this combination of drugs?

His reply was quite vague, but it seems they started with about a hundred drugs and narrowed it down to four, based on three epidemiological studies (and some other studies?).  He is a haematological, oncological, surgical something or other.  He told me some story about finding a piece of lichen on a beach, then something about a lab ... I couldn’t make head or tail of it.

What outcome would we be aiming for?    Can it lead to remission for OC?

They have no results yet.

Have you treated other OC patients?  What outcomes have they had?

They have a few OC patients.  Some are stable, some have had shrinkage of their disease and some have progressed.  He couldn’t tell me how many OC patients there were and I couldn’t work out whether he was talking about patients taking the four drugs on their own or with chemo.  He had no statistics, but mentioned a few anecdotal cases, which I thought very unscientific.

If the regime worked, how long would I stay on it?

Another vague answer.  I think he was saying I would stay on it if or as long as it kept working.  He mentioned 2-3 years??  He said if new drugs came up in future then the regime would change.

Isn’t it very bad to be on antibiotics long term (esp for gut bacteria)?

He explained that the antibiotic is alternated with the worming med, each for one month then switch.  You stay on the Metformin and the statin continuously.  He mentioned probiotic yoghurt which seems a lame answer.

What’s the success rate compared to chemo for OC recurrence, say Carbo/Caelyx (63%) or weekly Taxol (20%-62%)?

I didn’t even attempt to ask this, as they obviously have no statistics yet.

How bad are side-effects compared to chemo?  

He gave me a hand-out on the drugs and their side-effects.  Also an explanation of the treatment regime.

Are the drugs only effective if you take all four?

I think the answer is yes to this, but not totally sure.  It sounds like Metformin is very important.

Can you take it alongside, say, weekly Taxol?  I assume I couldn’t take it while I’m on a trial.

He suggested I ask the trial people if I can take it.  I said I doubted they would allow it, as it might skew their results.  I said I would ask.  I showed him my list of drugs that I’m not allowed to take, that George gave me at Guy’s.  Dr S pointed out that the four drugs in the regime are not on the list.  He then took the list away to photocopy.  He seemed quite interested in it.

I explained that I was about to start the TAX-TORC trial, and said I had wanted to come here as a back-up in case I didn’t get on the trial but that I now think I probably will qualify for it.  I said if it doesn’t work, I will think again about what to do.  I said if I decide I would like to do their regime I will pop in and sign the consent form.  He agreed and said I wouldn’t have to pay the £400 again, but I could come along at the end of the clinic and see them (I think).

Back to the nurse, to pay my money by card, but we were interrupted by another doctor, who suggested I could take the consent form home with me and just sign it and post it to them if I decided to do their regime.  He had filled in their part of it.  I agreed that was a good idea.  Then he started explaining why I should do the regime.  He was easy to understand, which was like clear blue sky after the dense fog of Dr Saso.  However, I felt he was corralling me for a sale.  He said that Metformin is the best mTOR available, and that the other drugs can’t compete.  He said most of their patients are taking a long list of alternative drugs without telling their oncologists.  He didn’t think the trial doctors would allow me to take them, and said I should take them without telling them!  I said wouldn’t that be immoral, since it invalidates their trial.  He seemed to think trials were useless anyway, seeing them as just a means of enriching big pharmaceutical companies.  He thought most people on trials were taking other stuff, so all the trials are invalid anyway.  He said patients with diabetes had to be allowed to continue taking their metformin and patients with high cholesterol had to be allowed to carry on with their statins, so these drugs are allowed, but if I was to ask to take Metformin without being diabetic, they would say no.  This is why I should take them without telling them.  He makes a reasonable point.

He said it was always better to take a combination of drugs for the best effect.  He said the ‘step-wise’ approach of conventional treatment doesn’t work.  He said if the trial doesn’t work, I would probably be ‘thrown off’ after the first round, and then I wouldn’t get the chance to take the Care Oncology regime and enhance the effect of the Taxol.  It was a hard sell!  I said I needed to think about it, as there is a lot to take in. 

He explained how metformin works against cancer, which went over my head.  I asked him if it was true that eating sugar fed the cancer, as oncologists say that cancer cells will find sugar regardless of what you eat.  He said it is bad to eat sugar.  I asked him about the ketogenic diet, and mentioned my pre-chemo fast and how ill it made me feel.  He said that was too extreme, and that a long-term dietary change was better (I think).  He said carbs, fruit and alcohol were the worst offenders.  You should eat protein food and leafy veg.

I said oncologists warned against taking antioxidants, in case they protected the cancer cells.  He explained in detail how they were actually a good thing (which again went over my head) and that oncologists were not well informed.  His explanation sounded very plausible and scientific, something about the chemo produces tons of free radicals that damage the cancer cells and the antioxidants only have a tiny effect against that ... or something.  It almost convinced me but still I had a vague suspicion he was telling me what he thought I wanted to hear, it was like, us against the nasty oncologists, who are just the pawns of big pharma.  He said they don’t care about individuals, just about their trial data.

When he left, the nurse carried on with my payment.  She seemed quite unsure of herself the whole time, as if she was new to the job.  I asked her how long this place has been running, and she said about two years.  I asked the names the two doctors and she said Dr S, and the second was a scientist called G.

After I went to the loo, the nurse pointed me to the way out.  I found myself in a corridor looking at a big slobby guy sitting in a little room in front of a computer.  I said, “I’m looking for the exit.”  He said, “That is exit,” so I carried on and found myself going up some fire escape steps to the street, my head exploding with more impossible, implausible decisions.

Later: read all of their website (why didn’t I do that before I went to the appointment!?) and was impressed by the big, proper oncologists that are running the thing.  It doesn’t seem to be about profits.  Now I want to take their cocktail.  

Discussed it all with R on the phone, and he thinks I have three options: a) take their cocktail and lie to the trial docs as they advised  b) don’t do the trial and ask Dr M if I can have weekly Taxol (or even Carboplatin??) with the cocktail  c) do the trial and as soon as it looks like it isn’t working, come off it and then ask Dr M if I can take the cocktail with a standard chemo as in option a).  The trouble with lying to the trial docs is what if I have bad side effects, and they want to reduce the trial drugs and I can’t tell them it might be down to the cocktail drugs.  Also it’s unethical to mess up their trial results.  The trouble with b) and c) is that Dr M might not agree.  My gut preference at the moment is a) lie to them, but I will have to sleep on it (how the hell am I going to sleep though!)

Mon 2 Nov

Phoned the C.O.C., I don’t remember which day, and asked ‘Rafael’ some questions.  A day or so later someone called back (Rafael or Gregory or Robin?)  He said if I had liver or kidney function side effects, they would reduce the doses, but they wouldn’t be expected if my liver and kidneys are working properly.  He thought they would be the only side effects the trial people could notice?  He said Metformin probably works on a different pathway to AZD2014.  He said Metformin has been given with everolimus (an mTOR inhibitor used for breast cancer) and had not interfered with the effect.  Everolimus is a derivative of rapamycin.  I said I would like to go ahead and get the drugs delivered, but would go by my gut feeling to decide when to start taking them. They want me to send them my blood results as I get them (it’s hard to get copies from the hospital though). 

Tue 3 Nov

TAX-TORC screening tests

Up to 15^th floor for another chat with Greek doctor, G.  Grilled him about what the AZD2014 drug actually is, and he printed off a Wikipedia page on mTOR for me: ‘The discovery of mTOR was made a few decades ago while investigating the mechanism of action of its inhibitor, rapamycin.  Rapamycin was first discovered in 1975 in a soil sample from Easter Island ... establishment of rapamycin as an immunosuppressant ... rapamycin was also found to have anticancer activity ... mTOR inhibition has been a growing branch in science and has promising results.’’

mTOR = mammalian target of rapamycin.  AZD2014 is a rapamycin analogue.  It is an mTOR inhibitor.  Metformin is also an mTOR inhibitor, but it works differently – it is not a rapamycin analogue.  Metformin works by suppressing glucose production by the liver (it also helps reduce LDL cholesterol and triglycerides).

Saw the nurses again for a blood sample (done painlessly again by V – his name is Latin for ‘life giver’) plus an ECG done by a nurse with an incredibly posh drawl, and a urine test.  Another nurse said it might not be possible to get me a cold cap on Tuesday, but she would ‘try her best.’ Grrrrr

Then down to 1^st floor Southwark Wing for an echocardiogram.  A strange experience: lying on a couch with the top half of my body naked, leaning against the woman’s thigh in the semi-darkness as she looked at my heart with ultrasound.  Sometimes the machine plays the heart sounds aloud, all kinds of pulsing, whooshing, squelching sounds, some like the sounds in Invasion of the Body Snatchers, as Donald Sutherland sleeps on his balcony and his alien replica is growing in the pod beside him.  Come to think of it, I suppose they are also the sounds heard in the womb.  In fact the whole experience is probably like being in the womb.  They should offer it as a soothing therapy!

I was supposed to start fasting from midnight, for my blood sugar test tomorrow, but I lost track of time, so I risked eating a pitta and humous at 12:45 – what a rebel!

Dr S’s Clinic letter

3 Nov 2015

It was a pleasure to review Miss T in the phase 1 oncology clinic this morning.  She consented to the phase 1 clinical trial TAX-TORC last week and has now commenced screening.  She remains well in herself with her baseline symptoms including grade 1 abdominal bloating ad grade 1 intermittent bilateral hypochondrial pain.  In addition she tells me that she started taking a homeopathic medicine recently and I have advised her that unfortunately she will have to stop this prior to entering into the trial.

Her performance status remains 0 and clinical examination today was unremarkable apart from a 2cm left supraclavicular fossa lymph node and a 1cm right inguinal lymph node.

She will continue with screening including blood tests and an echo and we will see her again in one week’s time

Dr DJ

Oncology Registrar

Fri 6 Nov

Haematology, 4^th floor, Swk Wing for blood transfusion

The nurse from the Phase 1 team came and took blood samples for the trial (fasting blood sugar etc.) then I had to wait an hour to start the transfusion.  Felt very bored, and The New Scientist didn’t entertain me.  My nurse was very friendly and cheerful, as she is going to Bali tonight to see if she wants to emigrate there with her boyfriend.  Afterwards, with a different nurse, problems getting blood sample and lots of painful prodding of my arm to get some blood out of the vein.  They only gave me one unit.  My Hb was 8.7 before the transfusion and it has to go up to 10 to start the trial – will it make it?

Sat 7 Nov

Call from ‘Pharmacy To You’, which is the NHS approved online pharmacy that C.O.C. uses.  Gave them my credit card details and they are going to send the first batch of cocktail drugs for £69.35.  I have to speak to C.O.C. and make sure they don’t automatically order repeat prescriptions, as I don’t know when/if I am going to start taking the drugs.  My current plan is to play it by ear and start them if the TAX-TORC begins to not work as well as I would like.

Tue 10 Nov

Bloods and doc

I forget if I saw G or Dr J.  Afterwards saw the nurses: S did an ECG (embarrassing having to sit there in just knickers!) vital signs and bloods.

Wed 11 Nov

Taxol no. 1

I was supposed to go to the 15^th floor for a chemo chat at 8:15, but the tubes were too full for me to get on.  We checked out buses and taxis but they would have taken too long with the gridlock on the roads, so we ended up taking a scenic route on the tube to avoid the Northern Line.  We arrived at the hospital at 9:15. 

We went straight to the 10^th floor CDU for my Taxol.  The trial nurse, N came down to do the chemo chat.  I got upset when she told me I had to fast for two hours before the AZD2014 tablets and for one hour afterwards.  I said I get heartburn and the only way to resolve it is to constantly nibble at food.  Also, tablets get stuck in my throat, and I usually get them down by eating something, but she said I won’t be allowed to do that, I would have to drink lots of water instead.  I said drinking water makes me feel sick.  I asked if I could take Clarityn instead of Piriton and she said I would have to ask the doc next Tuesday but she would probably say I had to follow the trial protocol.  She said I didn’t have to do the trial, which upset me even more.  I said I assume Doc M has chosen the best possible treatment for me, so I really have no choice, as I don’t want to die before I have to.  She must think I’m an insufferable neurotic - I just couldn’t put on a compliant front today - too stressed.

The Taxol got lost because it was sent to the 15^th floor, so I had to wait hours to start treatment.  Difficult getting the line into my arm again, they succeeded on the second try.  Began with the cold cap, but then needed to frequent the toilet and it became impracticable, so I gave up (and had another cry).  All in all, a horrible day!

Fri 13 Nov

Side effects

Friday night: horrible side-effect of intense pain around my liver.  Could barely sleep at all and had to lay on my back.  However, I only had to take one anti-sickness pill, and that was due to heartburn.

Tue 17 Nov

Bloods & doc 9:30am

Seen by Doc J and told her about the side-effects: not bad except for Friday night liver pain, which faded on Saturday.  I said I only had to take one anti-sickness tablet.  I mentioned having a slightly dry mouth, which was no big deal.  Also heartburn: she said I could take a Ranitidine in the mornings, two hours before the AZD tablet.  I said the side-effects were a “relief” after the Caelyx.

I told her at length my reasons for wanting to take Clarytin instead of Piriton and she agreed to ask the trial people.  I don’t see how it could affect the trial result, but they will probably say no. She was hopeful that my side-effects wouldn’t get worse.  She confirmed  there is another group on a two-day tablet regime but said if she had to reduce my dose it would be by cutting it from 50mg to 25mg tablets, not by reducing the number of days I take them.

At some point, I found myself getting snuffly again, which I so didn’t want to do. I think it was when I had to explain why I gave up on the cold cap. Then I said I had been hoping to be in remission after the Caelyx, and it was hard having to go straight onto another regime.  Doc Josephs looked uncomfortable – she’s not very good with weepy patients I don’t think.

She said I don’t have to do the trial, and I said, “Why do people keep saying that to me?  Do you not have faith in the trial.”  She said she did have faith in the trial, she was just saying it’s voluntary.  I said, “If I was your relative, would you advise me to do it?” and she said yes.

Afterwards I saw the nurses for ECG, vital signs and bloods.  The posh nurse, E, did them this time (she’s charmingly inept). She had to take five tubes of blood today – I’m going to get so anaemic.

Dr S’s Clinic letter:

17 Nov 2015

I reviewed Miss T in the Early Phase Clinical Trials Unit this morning.  She has now completed her first week on the TAX-TORC Clinical Trial of weekly paclitaxel and investigational drug.  I was pleased to hear that she tolerated the treatment well with minimal toxicities. The toxicities that she does describe include grade 1 dyspepsia, grade 1 sensory neuropathy of her hands, grade 1 dry mouth and grade 1 constipation.  In addition, she had a single episode of grade 2 right upper quadrant pain which resolved after a day.

In view of her dyspepsia, which was most likely exacerbated by the fasting episodes prior to taking the drug, I have recommended that she start ranitidine 150 mg BD.

Pending satisfactory blood results today, she will proceed with Cycle 1, Week 2, Day 1 and we will see her again in clinic in one week’s time.

Dr DJ

SpR in Medical Oncology

Wed 18 Nov

Taxol no. 2

Appointment at 10am on 15^th floor.  Trauma getting the line into my vein but eventually a guy called G got one into my left hand, after they’d had about five abortive goes on my arms.   I had forgotten my AZD tablet, so Ronnie dashed back to Brixton for it.  Meanwhile, as they tortured me with needles, I told S and N all about my agoraphobia.  They want me to have a ‘port’ in my chest or a ‘PICC line’ in my arm, and I was trying to explain my phobia of foreign objects in my body.

The treatment went OK.  Had to have Piriton again of course, as Dr Josephs hasn’t got an answer from the trial people yet.  There was a burly, tattooed ex-builder called K there today, who has lung cancer, and R obliged by chatting to him about celebrities etc.  His last chemo has made his teeth loose.  He said he could pull them out if he wanted to.  He misses eating steak.

Sat 21 Nov

Didn’t have the intense pain this time.  Side effects seem very mild compared to the misery of Caelyx.  I think my right foot feels a bit cold today.  Dry mouth.  Food doesn’t seem to taste of anything.  Had trouble taking my pill last night (4am) as it seemed stuck in my throat.  Drank fizzy water and an hour later had diarrhoea.  I wonder if the tablet will have gone straight through?

Dreading my hair falling out. 

Tue 24 Nov

Bloods & doc (+ Ca125).

Saw Dr W

Dr S’s Clinic letter:

24 Nov 2015

I reviewed G in clinic today.  She continues to do well on our clinical trial with very few side effects.  Examination in clinic today was largely unchanged from last week.  As she is tolerating trial drug well, we will proceed with a further cycle and I will review her again in one week’s time.

Dr Y

Clinical Fellow in Medical Oncology

Wed 25 Nov

Taxol no. 3

Arrived 9:15 for repeat FBC as it got lost at the lab yesterday [I think this happened this week, or could have been no.4].  Took the scenic route to avoid the rush hour on the Northern Line.

Thu 26 Nov

MS, Psychotherapist

Ground floor, Borough Wing, Guy’s- Dimbleby: 020 7188 5918/5926 (direct line: 020 7188 4741)

Talked at her non-stop for my 45 minutes, trying to fill her in on my back story re ‘autistic traits’ and how this can affect getting good medical treatment (e.g. Dr M falling out with me).

Tue 1 Dec

Bloods & doc

Didn’t write up in diary.

Wed 2 Dec

Taxol no.4

Didn’t write this up.

Thu 3 Dec

STH hairdressers for pixie-cut

I planned to go into girly-mode and chat with the hairdresser like other people do, but it all went horribly wrong due to R’s request that I keep a lock of hair for him.  I asked her if she could cut a few separate curls so I could keep them, as my boyfriend had asked me to, but she said she could only cut all the hair off in one chunk.  Then she wanted to comb the damp hair with a small-toothed comb and she was tugging at it.  As it’s falling out steadily at the moment and I wanted to keep it for another couple of weeks if I can, I was hanging on to it at the roots with my hands, while she yanked at it with the comb.  By now I think she had me down as a nutter and as she asked me how I wanted it cut, she adopted the annoyed tone of someone dealing with a very troublesome client.  There was stony silence as she cut my hair, which I found very depressing.

When she finished, I tried to repair relations by telling her it looked really great and thanking her profusely.  It only cost £20 or £30 and when I gave her a £5 tip she seemed to finally thaw out and she wished me luck with my chemo.

Sun 6 Dec

My leg swelled up worse than ever, it’s obvious to see.  In the tights it feels sore up and down the back of it, especially behind the knee.  Walking to the shops I had to struggle not to limp.

Tue 8 Dec

Bloods & doc

Saw the Greek doc again. He said my leg actually looked swollen this time.  He said it could be a sign the treatment isn’t working.  Also the ‘period pain’ type abdominal ache I’ve been having.  I pointed out that my liver function levels had improved, so he looked them up on the computer and agreed that they had.  He said it might be a good sign or not mean anything.  I told him the lymph node in my neck felt smaller and he said that was a good sign.  Then he said I might be getting a mixed response and we will only know when I have a CT.

I asked him if I could take three steroid tablets instead of four as I have osteopenia and he went off and asked the trial people, but they said I shouldn’t worry about the steroids as I was only taking them for one day, once a week and that wasn’t enough to affect my bones ...

E (the posh nurse) did my observations.  We always have a chuckle when she does the ECG, when she uses my fingers to hold the wires in place.  I like her despite her being a slob – like today she said she would re-take my temperature as it was a bit high, but she never did.

Royal Marsden called back this week – my appointment is cancelled for now.  B has said I can be re-referred to them for 2^nd opinion if Tax-Torc fails

Wed 9 Dec

Taxol no. 5

Arrive 9:30am.  Leg swollen.  Didn’t write this up again and all these chemo sessions have merged together in my head.  R has been taking every Wednesday off work, to accompany me on chemo days, which is really great because he chats to the nurses and keeps everything jolly.  Had lots of trouble getting the cannula into my veins every week, but I’m resisting the PICC line because I don’t want something in my arm that they will probably want to leave in forever.

K the ex-builder disappeared (I wonder if he’s still alive?) and now we chat with a middle-aged woman called D, in a smart, short blonde wig.  She said her hair never grew back after carbotaxol.  She has a woman to do her wigs for her.  She fixes it on with double-sided tape and you would never know it was a wig. 

She comes to chemo with her daughter, who is enormously fat and has her hair cut very short.  The daughter joked that she gets mistaken for the cancer patient, because of her hair (why does she cut it so short??  It’s as if they have definite roles: the mother has to be glamorous while the daughter keeps herself dowdy).  The daughter said her knees hurt her a lot and keep popping out of their sockets (ouch!)  No-one mentioned the obvious, which is that she needs to lose a lot of weight.

D lost the lower part of her left leg (I don’t know if it was because of the cancer or some other reason), but she seems very sanguine about it and about everything else.  Her daughter joked that visitors to her house are taken aback when they see a row of wigs on one side of the room and a row of artificial legs on the other.  She said when she goes with her mother to try on shoes, she has to hammer the left one on to her foot, which alarms other customers.  D uses a motorised buggy for shopping because the stump gets sore if she walks on it too much.

They gave me a pep-talk about being positive, which began to get on my nerves, although they are very sweet people.  I find it hard to believe that D kept up her serene smile and Dunkirk spirit when they chopped her leg off, but perhaps she did.

Thu 10 Dec

Lymphedema Clinic

Behaved in my most docile manner during this appointment, despite provocation, as I need their help.  Esta measured my legs and found the right one is now 16% bigger than the left one, up from 5%. 

I told her that my leg had been feeling sore all up and down the back.  She said, “lymphoedema doesn’t hurt – I know that for a fact.  It must have been muscle or joint pain.”  So now she is telling me what my body feels!  As if I don’t know what muscle or joint pain is!

I was very surprised to discover that the Juzo tights I’ve been wearing since last time are Class 2!  I said nothing though, mainly because the implications hadn’t sunk in – ie that I’ve been wearing unnecessarily strong tights all this time and inadvertently switching between class 1 and class 2. Why did they give me class 2 last time, while at the same time Martine was telling me that my lymphedema is so minimal that I should just go to M&S and buy some support tights?

E said to disregard all my old tights and class 1 tights.  She is ordering me another pair of Class 2 Juzo (but that’s what I’ve already been wearing  - unknowingly - and my leg is swollen).  She said meanwhile I should wear one of my old class 1 stockings under some old class 1 tights.  Tried this when I got home but it’s impossible, they just ruck up, so I ordered some class 2 stockings from Medi, by phone.  Angry at having to fork out another £80 when I should be getting these on prescription.

Tue 15 Dec

Bloods and doc

Take Clarityn, get to 15^th floor at 10:30am for bloods (including Ca125).

Wed 16 Dec

Taxol no.6

Woke up with a splitting headache this morning.  Had to drag myself to my appointment.  When the nurse took my temperature, she said, “Did you know your temperature is 38.7?”  I said, “No, but I’m relieved this isn’t normality.”  Dr S wanted to go ahead with the chemo, but everyone else seemed to think that was a bad idea.  I was sent for a chest x-ray, and it showed some sort of infection in the left lower lobe.  I was prescribed two types of antibiotics: Co-Amoxyclav and Doxycycline, and sent home.

Fri 18 Dec

Phoned the acute oncology line and spoke to Dr J I think.  Told her my temperature was still up and I still had a splitting headache.  She said I had to go to A&E, but I said I couldn’t face it on one of the worst Friday nights of the year, with all the drunks.

Fri 18 Dec

MS Psychotherapist left a message to cancel because I’m ill, and asked if we could rearrange for another time.

Sat 19 Dec

Went to A&E at about 2pm and got processed very quickly because I’m a cancer patient.  Taken to Hedley Atkins oncology ward at Guy’s, by ambulance.

Sun 20 Dec

Still on the ward.  The woman in the next bed wailed and called for the nurses for no apparent reason all night, so nobody could get any sleep.  Today, all her relatives appeared and she went quiet.  In the afternoon she died and was taken away. 

Chatted to the woman opposite, who was called J.  She has an intestinal blockage from ovarian cancer, and has a tube into her stomach through her nose, which drains bile out of her stomach into a disgustingly see-through bag.  The poor woman has to carry the bag around and can’t eat or drink anything.  Her mouth gets very dry.  She came and sat on my bed, and we swapped stories.  A woman in the bed next to her has a tube in her nose also, and swollen legs.  She was very happy today because she has been taking some kind of diuretic medication and the swelling is going down.  She kept saying that now she can actually see some definition in her legs.

I had two young Irish nurses, who alternated shifts.  Having suffered from Irish spite in the past, I determined to be the epitome of friendly, chatty compliance.  Mostly I think I did quite well.  My only wobble was when one of them said I had to continue having IV antibiotics even though I had completed the course.

I thought there would be the usual trouble getting the cannula in, but a young, black nurse called S managed to put it into an almost invisible vein on my forearm and I could barely feel it, it was so comfortable.  She must be some kind of genius savant.

Mon 21 Dec

Echocardiogram - 10am, Cardiothoracic Centre, 1^st floor, Swk Wing, Guy’s / CT - 3:15pm, Guy’s . 

Still on the ward.  Missed my echo because the nurse (G) wasn’t on the ball, but they rearranged it and I got it done a few hours later.  Made it to CT OK this afternoon.  Had to have a big painful cannula put in for the CT, which they could only manage near the crook of my arm.  Horribly uncomfortable and couldn’t move my arm. [CT Report – see under 29.12.15]

In the afternoon, G came and told me my throat swab had shown Influenza A and I had to be taken to an isolation room right now.  She told me to pack up my stuff.  I asked if she would remove the CT cannula before I left and she said yes but she was busy right now.  I was determined to get rid of it though and said it would be hard to pack my stuff when I couldn’t move my arm, and in the end she had to remove it.

I was taken to a side room on Samaritan Ward, just across the corridor from Hedley Atkins.  I was told I was not allowed to leave the room for any reason, which immediately made me feel claustrophobic and upset. I told them about my agoraphobia, no doubt casting myself as a nut case in their eyes.

They said when R visits me, he has to wear a mask, apron and plastic gloves.  If he isn’t wearing the mask, then I have to be wearing one.  The masks are very hot and stuffy, and make it hard to breathe, so I found them impossible to wear for more than a few seconds as I can hardly breathe anyway.

Texted R to let him know my new location and later he came to visit.  He had just been having a meal with S, H and A at Tibits, and he brought me a take-away salad buffet.  I tried to eat some, but didn’t have the appetite to finish it.  Felt very trapped in the small, dirty room after R left.  Not even allowed to go out to the trolley in the corridor to make a coffee.

Tue22 Dec

The nurse was very friendly.  She told me she had been born and had grown up in a mental hospital because her parents worked there.  She had been trying to persuade me to take Tamiflu last night, but R called H to look it up on the internet, and we found that it is only effective if taken within the first 48 hours, so what would be the point?  Also, it can have psychological effects and R says his friend took it and had the most horrible nightmares. 

They sent a young woman pharmacist to come and persuade me to take the Tamiflu and I told her I was concerned that it can have psychological effects because I used to have panic attacks for 13 years and I never wanted to go back to those days.  While I was explaining this, I suddenly found I couldn’t breathe – not at all – in or out.  It was terrifying.  My chest tried to move in and out but no air could get in because my throat was completely locked shut.  The Pharmacist was freaked out and began pressing buttons on the wall.  I staggered to the door and held it open to try to get air.  The Pharmacist called up the corridor for help and two or three people came running to help.  In the back of my mind, I thought even if I pass out, I’m in a hospital and they won’t let me die.  A woman doctor stood in front of me and said, “Just relax ... relax” and it worked, a thread of air got through.  I hunched on the bed, wheezing for a minute or two and everyone went back to their business.  I told the Pharmacist I would take the Tamiflu.

Sometime later, Mr S himself turned up and I again agreed to take the Tamiflu.  I told him I couldn’t breathe earlier and could have died right then.  He suggested I take a sedative but I refused.  I suddenly felt like an unwilling inmate in a mental hospital.  Then he said I could go home – just like that.  He wasn’t wearing a mask or gloves or anything, nor had the Pharmacist earlier.  They all seemed to have dropped the whole contagion protocol.

I texted R and told him not to bother bringing more of my things over, as I was leaving.

Back at Brixton I read up on Tamiflu and decided not to take it, as I don’t want vomiting and stomach pain for five days over Christmas, and no-one has actually explained the point of taking it when every source of information online says it’s only effective if taken within the first 48 hours.

Guy’s Discharge Summary

22.12.15

Samaritan ward, Guys

Consultant: Anna Winship

Admission: 19.12.15

Clinical Summary:

Metastatic high grade serous ovarian cancer.  Admitted with G2 flu like symptoms and G1 fever.  On TAXTORC clinical trial.  Influenza A detected.  CT – CAP.  Bilateral GGO consistent with influenza.  Stable disease by RECIST criteria.  Home with 5/7 tamiflu and PRN ventolin.  Follow up in clinic.

Discharge medicines:

Oseltamivir capsules 75 mgs orally twice a day.  To complete a course of 5 days.

Salbutamol 100 mcg aerosol inhaler 2 puffs inhaled four times a day when required.  To continue, from GP.  For breathlessness.

GP information:

Explained to patient about importance of taking oseltamivir in view of being an ‘at risk’ patient and how the risks of having flu outweigh the risks of taking tamiflu.  Ms T became very anxious about taking the drug but did agree to take and complete the course. 

Clare Szlumper (pharmacist).

Tue 29 Dec

Bloods and doc

Seen by Dr W.  I admitted I hadn’t taken the Tamiflu and explained why.

He was quite annoying, answering his bleep twice while R and I just sat there.  I must have had about five minutes to actually speak to him.  I asked for a print-out of my CT report and he said the nurses could do it.  He said it showed stable disease – nothing has shrunk or grown.  The liver mets might seem like they’ve grown, but that’s just margin of error, a millimetre or so either way, as the images may not be in exactly the same plane.

In the event there were ridiculous hurdles when I asked E for a print-out of my CT report, but I dug in my heels and wouldn’t leave until I had it.  This is what it said:

Chest/Abdo/Pelvis 21/12/2015 given by Dr. YW

CT Thorax & abdo & pelvis with contrast : Clinical History :

Requested by: JS

Clinical Details: Ovarian Ca, Taxtorc trial end of C1 review.  Please compare results to baseline scan 15/10/2015.  Please report using RECIST

No pulmonary embolus is seen.

There is extensive parenchymal lung disease which has a ground glass morphology with some more dense consolidation in the lingula. The appearances have progressed over the past 2 months and are more likely to represent infection or drug reaction than metastatic disease.

There are small hilar nodes.

Extensive metastatic liver disease is seen.  The metastases have progressed marginally.  Non marker lesion in segment 1 measures 25 mm, prev 12 mm.

The focal splenic lesions are stable.  Normal kidneys.  Normal pancreas.  No para-aortic lymphadenopathy is identified.

The pararectal soft tissue mass is stable.  No bone metastases are seen.

Measureable disease:

Target lesion 1 – segment IVb hepatic lesion – 2.0 cm im 124/ se 4, prev 2.1 cm (1126/s4)

Target lesion 2 – segment III hepatic lesion – 3.1 cm, im 118/ se 4, prev 2.4 cm (1123/s4)

Target lesion 3 – left pararectal mass – 2 cm, prev 2.1 cm (1203/s4)

Recist 1.1 – 7.1, prev 6.6, Stable disease

Non-target lesions:

Numerous other hepatic lesions, some larger.  peritoneal lesions, splenic lesions and iliac chain nodes.

NEW lung changes- ? infectious or drug reaction.alert box, lung changes

GILES ROTTENBERG / C3278185

Obviously the liver mets are still growing, for instance one of them has doubled in size, despite what Dr Wu would have me believe.  I don’t trust him, or Dr S.

About 5pm, I got a message to call Dr W, and he persuaded me to take the Tamiflu.  My x-ray shows I still have inflammation in both lungs.  He said the Tamiflu stops the virus shedding into the lungs and gives my immune system a chance to work.  He still didn’t explain how it can work after 48 hours, but as I can hardly breathe I agreed to take it.

Wed 30 Dec

Third week without chemo.  One of the nodes in my groin is bigger and feels quite sore.  Tamiflu makes me nauseous.