Cancer Diary 2013

CANCER DIARY 2013

Thu 3 Jan

Water-soluble enema

I arrived at the Radiology Dept at St Thomas’s with trepidation, as I used to work there and was afraid of bumping into people I knew.  There was someone there, in reception that I recognised – SG, one of the managers, who I used to like a lot, but I didn’t want to talk, so I laid low under my wig, and hovered behind R. 

I was also nervous about the procedure, fearing it would be really painful, as nothing has been in or out of my arse since the surgery, in September.  In the event, it was a breeze: I didn’t have to prepare beforehand in any way, except to put on a robe.  The tube they put in my anus was very thin, and I couldn’t really feel the water and air going in at all.  They took some x-rays while I lay on my side, then on my back, and that was it.  The radiologist said the x-rays looked good – no leaks!  They have to be checked by the consultant, Mr G I presume.  I had to waddle to the toilet clutching a mat under my bum, in case anything leaked out.  Not very dignified.  On the toilet, some water gushed out.

Later, in Starbucks with R, I felt kind of uncomfortable, and when I got home and sat on the loo again, some actual poo came out!  It was very satisfying, but made me wonder if my colon is being damaged by having old poo stuck in it for four months – won’t it give me colon cancer!?  I think the pains in my rectal area have been a lot less since the poo came out.  I’ll be SO glad when I can finally be connected up and do a proper poo.  I wonder if it will hurt ...

Wed 9 Jan

Dr W’s clinic

They let me come to clinic again early, to investigate the lump – this replaces the appointment I had for 24 Jan, so I won’t get seen again until March, after another CT. I saw C, the Registrar, again.  She felt my abdomen, and couldn’t feel the lump!  I had a feel too, and couldn’t feel it either.  I was so relieved.  She even did a vaginal exam and said it seemed fine too.  Phew.  She also said my Ca125 was down to 10!  I had been afraid to ask about it, so it was a huge relief.  I asked her if I could consider myself to be in remission and she said yes!

I asked her if I had been referred to the Menopause clinic and for a DXA scan, as M had said she would ask, but it seems both are out of the question: she thinks the Menopause clinic (run by Miss R) is only for ‘early menopause’, and Dr M has vetoed the DXA because it’s too expensive!  It seems they have no interest in my future quality of life now that the chemo and surgery is over.  C said I could ask my GP if they would pay for a DXA scan and said she would make some more enquiries about the menopause clinic, and I could ask the GP about that too.  I also moaned about waiting for the reversal, and she said she would tactfully chase Mr G.

Dr C’s clinic letter:

(Dated 12.2.13)

I reviewed Miss T as an addition to the clinic today.  She recently felt a mass in her right iliac fossa and was examined by Dr D.

Review of her latest CT scan showed no obvious mass.  I am pleased to report that her recent Ca125 was normal (10 in December.  She remains well with her energy improving.

On examination there is no palpable mass in her right iliac fossa.  On vaginal examination today there are no detectable abnormalities.

Miss T’s weight is stable.  She has noted stiffness affecting both her hands in the morning, which she attributes to a lack of oestrogen.  She remains keen to have HRT and again I repeated that we would not usually recommend this in the context of ovarian carcinoma, but at the request of our CNS, I will ask if Prof R would consider seeing her in the menopause clinic at Guy’s to discuss these concerns with her.

She is also anxiously awaiting reversal of her stoma under the care of Mr G and would be very grateful if a date could be set for this.

For our part we plan to review her again with a CT scan in March this year.  Her Ca125, measured today, was 9 (yippee!).  All her other blood tests were satisfactory.

Thu 10 Jan

I phoned the Stoma Clinic receptionist and asked if she knew how long I would have to wait for the reversal.  She said I would have to wait until my appointment on the 30^th, and ask then. I said I felt like waiting for the 30^th was just dead time.  I don’t even have a date for the surgery yet.  I thought the 30th was supposed to be just to keep me ‘in the loop’ with the stoma nurses in case the enema test was bad news. I said the bag was affecting my quality of life and I might only have a couple of years of life left. She said she would email Mr G.

R pointed out that something could go wrong to prevent the reversal while I’m waiting, so the sooner it’s done the better.  He thinks I should write directly to Mr G, but I don’t want to in case I bug him - I would rather nag his subordinates.

Fri 18 Jan

I’m going insane waiting for the reversal.  Tried phoning Mr G’s secretary today, then M, but got nowhere.  Started working on a letter to Mr G, but I won’t send it:

Dear Mr G

I am writing to ask if you can give me an estimate of when I will be able to have my ileostomy reversed.  When I spoke to MN on the phone on 24^th January, she said you would do it as soon as possible, depending on your schedule.  I would really appreciate it if you could give me a rough idea of what this means, even if it is just to say whether we are talking about days, weeks or (hopefully not) months. 

As you have probably gathered, I am desperate to get rid of the stoma, partly because I am worried that if too much time goes by, something might happen (e.g. a return of the cancer) to prevent the reversal being done.

There are also practical issues, for example, my HR department is asking when I can go back to work.

The ileostomy prevents me from eating an optimum immune system boosting/anti-inflammatory diet.  It also prevents me from going to the gym or running or even doing yoga at home, and this is detrimental to my mental and physical health as not only does it mean I am no longer fit, but I am unable to use physical exercise to reduce help reduce stress.  I feel these factors must reduce my chances of preventing a rapid recurrence and surviving the cancer.

For information: the contrast enema was done on 3^rd January, and it showed no leaks or problems.  My last chemo was nearly 10 weeks ago, on 12^th November 2012.

Just as I was thinking of actually sending the letter, I got a phone call from Appointments, to say my reversal will be on Friday 8^th February!  Yay!!

Thu 31 Jan

Pre-op assessment clinic

This was in Gassiot House, at STH.  They have the place set up like an airport, with lots of waiting around and waiting for your name to come up on big screens.  I was in there for four and a half hours, answering medical questionnaires, ‘swabs and obs’ (MRSA swabs, blood pressure and pulse, height and weight, and an ECG, which only takes a minute), giving consent and bloods, but mostly reading my book: ‘Reincarnation – A Critical Examination’.  I had some quality time with a colorectal nurse (Marie something) who gave me actual information about colorectal issues.  She asked if I had seen Mr G on the ward, and I said no, only for a few minutes during a stoma clinic, so she called Mr G on her mobile, right there, and made an appointment for me to come and see him in clinic next Wednesday, to ask questions.  When I said, “I only need to ask one quick question,” She said, “You’re entitled to ask questions – you don’t have to justify yourself.” What I want to ask is: can he fix all the bulging and sagging, and exactly how much rectum/colon did he remove.  She told me I wouldn’t have to wear ‘nappies’ after the op, which is reassuring, but she said it is a major op, and I will be wiped out afterwards.  She said the scar is usually horizontal and will have puckered ends, but they should flatten out over time (hm). She said, I won’t need an epidural, and won’t need to have a central line in my neck, unless there is problem putting one in my arm.  She said I could ‘carb up’ before the op with Complan, instead of Fortisip and I can wash normally – no need for the yukky disinfectant wipes.  Also, I will only have to wear the surgical socks and have blood thinners while I’m in hospital (three to five days).  This is much better than last time!  I have to stay in hospital while they make sure I can poo properly.  I have to start sitting up and walking around asap after the surgery, and I have to do deep breaths and coughs to make sure I don’t get a chest infection and I have to have enough pain killer so that coughing doesn’t hurt.

Wed 6 Feb

Mr G clinic

Took two diagrams to Mr G’s clinic: a diagram of the rectum and a photo of my stomach with stoma and bulgy places displayed.  He marked on the diagram how much rectum had been removed – basically all of it, including the sigmoid colon.  My descending colon is stapled directly onto the rectal stump, like a drainpipe.  He reiterated the warning about it taking two years for bowel habits to normalise.  On the photo of my abdomen, he retracted what he said before about tidying up any hernias, saying he would have a look at the bulge in my right groin in eight weeks, when I see him again in clinic.  He said he couldn’t fix a hernia during the reversal because the reversal is a ‘dirty’ operation and he wouldn’t want an infection to get in the mesh used in the hernia repair. He said the bulge under the stoma and the wonky bellybutton would have to be fixed by a plastic surgeon (if the cancer doesn’t come back).  I asked him why he used metal staples and he said that’s what they always do. He said again that they can come away when I poo - really!?

Mr G’s clinic letter

7.2.13

I met up with this lady prior to the reversal of her ileostomy.  She raised some concerns about the asymmetry of her abdomen and a lump in the right groin.

On examination she does have asymmetry to the anterior abdominal wall and possibly a right inguinal hernia.  I have explained that at this stage the priority is to restore her bowel continuity and these other issues can be dealt with after this.

I have been over the risks of surgery with her today and have explained that it may take anything up to two years for her bowel function to reach its best.

Tue 5 Feb?

Visit to GP

Dr C signed a new sick note up to 1 April 2013. I asked him about possible treatments for peripheral neuropathy, which seem to be limited to taking antidepressants.  I asked him about taking L-acetyl carnitine for it, which I’d read about online.  He didn’t seem impressed and said he wouldn’t recommend ordering anything online. 

He agreed to refer me for a DXA scan.  I also asked about aches and stiffness, and he said I could have blood test (for rheumatoid arthritis I presume??).  Not sure what I am supposed to do about arranging this blood test.  Reception don’t know - have to ask him again, next time.

Fri 8 Feb

Reversal

R and I got to the Admissions Lounge at 11:40. The wait was a lot shorter than last time and I went in for the operation at about 1.30 I think.  I saw Mr G again just before and asked him if he could make the scar horizontal, as maybe it would help lift up the wonky, bulgy bits.  He said he would have to decide when he did the op (in the event, he did make it horizontal J).

Woke up from the op not long after, and reassured myself that the bag was gone.  I thought I would have been delirious with joy, but I felt strangely ordinary.  Had a nice surprise of a private en-suite room, with a view onto the Thames and Houses of Parliament. I was in there until Sunday at midday, when they moved a very sick Muslim lady in there (she died that night).  

I was moved to a bay with four beds in it.  I had the space vacated by the Muslim lady. There were two patients with acrelasia, which means you can’t swallow properly and food comes back up.  The younger woman, C, was at an early stage, but the other lady, T, had suffered with it for 21 years, ever since she was pregnant with her son, and she was the most complex patient with the disease.  She was very strong and positive and very stoical about having to transport a bag of ‘feed’ around in a rucksack, which feeds into her side through a permanent plastic tube.  There was another patient, J, who had had most of her pancreas, her gall bladder and part of her stomach removed, and now had a blockage due to surgical adhesions.  Her surgeon had a bit of a dilemma, as she needed an operation, but it was a very dangerous one to do.  I didn’t really bond with them, as I’m not their type, but they were nice enough.  The younger woman, G, seemed a bit like a big baby to me, and a bit manipulative, and after she was discharged, T and J and the nurses all swapped stories of her strange behaviour.  It sounded like she was schizophrenic maybe.  She’d done things like sit beside T or J’s bed during the night, while they were asleep, and she told conflicting dramatic stories to different people about her life.  Her bed was filled by A, who had a growth on her bowel, which she went in to theatre to have removed on Monday.

I was really tired today, could hardly keep my eyes open for five minutes, and every time I tried to read, I would fall asleep.  I hadn’t done a poo for three days, and was beginning to feel very bloated and uncomfortable, as well as slightly sick.  At 3.30 on Monday morning I woke up with spasmodic, burning pain in my anus, which kept me running to the loo for the rest of the night with no result, and  Iwas afraid that I had a leak.  I had a Movicol last night, which didn’t seem to work, but at lunchtime I had an apple (peeled) and - bingo – two rounds of projectile diarrhoea!  I felt 100% better afterwards, although the burning pains did creep back a bit, later on.

Sitting here now, waiting for night, bored, not very comfortable with my roomies.  I’m really glad I’m going home tomorrow.  A dietician told me that I should keep up the ileostomy diet for about a month, then I can ease fibre back in.  The colorectal specialist nurse, #, also came in for a chat, and basically repeated what Mr G said about things taking a long time to settle and that I would have good days and bad days.  Hm, I was hoping for just good ones after my successful poo today.

I had a chat with an older woman, who has had her rectum removed because of bowel cancer.  She doesn’t know yet how much the surgeon removed.  She told me that she’d had a flood of completely uncontrollable diarrhoea, while sitting in the ward, with no warning whatsoever!  I really empathised with her, as it reminded me of my humiliating bag leak on the gynae ward.  The poor woman was having to wear incontinence pants and her confidence must be shot to bits.  How unlucky to have that experience right at the beginning, worrying too, that it could happen with no warning.  I really hope it doesn’t happen to me.

Ready to go on Tuesday morning, but I had to wait until R could come and get me after work, as there is a lot to carry.  He couldn’t make it until 8pm, so I had to wait around on a bench for two hours after they gave my bed to a new patient.  We got the bus back to Brixton without any mishaps.  I don’t need to inject any Klexane this time, thankfully, and only have to wear the socks if I’m inactive, and only for a week (in the event, I didn’t wear them at all). The scar healed very fast, and I didn’t have to put the dressing back on, after taking it off in hospital because it itched.

Mon 18 Feb?

GP nurse to get stitches out

Ouch!  It hurt.  It was over very quickly though.  The stitches were very tight.  They were like thick wires which stuck out through my t-shirts.  They reminded me of the insect hairs coming out of Jeff Goldblum’s back in The Fly. I think there might still be a tiny piece of a stitch left in there (every flipping time) but I’m so glad to get rid of one more bit of surgical gruesomeness – another tiny step towards getting back to normal and getting my life back.

Mon 25 Feb

DXA scan

No preparation required. I turned up at Guy’s Osteoporosis Clinic and got scanned straight away.  You can keep all your clothes on if there is no metal in them, and the x-ray dose is so low, that the Radiographer can stay in the room the whole time.  The machine is open and makes no noise.  They scan your back and left hip.  Coincidentally, I had a random pain in my left hip today, and the thought that it might be a bone met kept running through my head.  I still remember what my reflexology teacher said, about 20 years ago, that I would have a problem with my left hip.  It just shows how these prophesies of doom get stuck in the mind. Results are ready in two weeks.

Thu 28 Feb

Update on life after stoma reversal

I’m keeping a poo diary, as the colorectal people will want to know how things progress, as do I.  The idea is to monitor whether I visit the loo fewer times each day as time goes on (this seems to be happening) and what effects different foods have.  At first, I seemed to be in pain all the time (a cross between pain and the feeling that I urgently needed to poo) where my rectum used to be, but now I rarely feel any pain.  The worst symptom lately is evil wind.  Maybe I have to avoid things like onions in future – at least on days when I’m around other people.  The specialist colorectal nurse told me to avoid fresh fruit and veg altogether for (I think) about four weeks, but I’ve been ignoring that lately, and eating strawberries, nuts and other things that were banned with the stoma, like celery, peppers, beans, onions etc. and nothing bad has happened, except for the evil wind.  It’s a big relief to think I can start a proper ‘anti-cancer’ diet now, instead of being forced to eat refined rubbish with the ileostomy.

The reversal scar is healed and not especially sore, but the big bulge underneath the stoma site is just the same and is pronounced enough to show through clothes, my belly button is still slanted and the inguinal hernia (if that’s what it is) is still there.

I’m so glad I had the reversal done.  It’s wonderful to be able to do a poo like a normal person, and not have to constantly mess around with the damn bags or to stink out the flat with a smell like drains (as R described it).  It’s also great not having to worry about the bag showing through clothes or falling off.  I feel a lot less repulsive.

It was pretty exhausting at first after the reversal – I went 19 times on the first day back from hospital, not to mention constantly feeling like I needed to go – but slowly it’s getting down to about 10 – 12 times a day, without the constant urge and pain in between.  The worst part so far has been trying to hold in wind for an hour on the tube, for fear of antisocial smells or ‘accidents’.  As Jack Nicholson said in ‘The Bucket List’, “Never trust a fart”. At this rate, I will end up with bum cheeks of steel.

Tue 12 Mar

Appointment with J and HR

Urrrgh, I hated having to see J again.  She wanted me to come up to the M##, and run the gauntlet, but I went to HR and called her and said I didn’t want to do that.  She took it ok, and came down with P, the HR woman who is dealing with me.  I basically hinted that I would like to try and get ‘ill-health retirement’ so they are going to arrange an appointment for me with Occupational Health to assess this.  I told them about having ‘accidents’ and awaiting the CT result.

P said I should remind the benefits people when I have been on ESA for 13 weeks, because they might up my payments by £25 or £35 or something.  Amazingly, next day, I got a letter from the benefits people saying it’s gone up by £50!

Wed 13 Mar

Mr G clinic

Saw a registrar (an Indian doctor) rather than Mr G.  He wants me to take Loperamide (Imodium) every day, but I told him I don’t like taking drugs.  I said if I took all the drugs the hospital have given me, I would have a carrier bag full with me today, and he said he knew where I was coming from, but still thought it would be good to slow down gut transit.  I told him I was being plagued by evil wind and that I had become socially unacceptable.  I said I was concerned that slowing my gut down might make the wind worse.  I asked him if he had any suggestions to deal with the wind, but he didn’t.  He prodded my abdomen a bit, and said he didn’t think the groin bulge was a hernia, but just where the flesh has been pushed down by the surgery.  I asked for a referral to plastic surgery, but he can’t do it because I don’t have my CT result yet (of course I don’t, so why didn’t they time this appointment for after the CT!)  He agreed that I could ask Dr M to refer me on Thursday, or even my GP (but he didn’t seem to want me to ask the GP).  He said I would be seen again in three months.

Clinic letter from Dr IS, registrar to Mr G:

13.03.13

I reviewed this lady in Mr G’s clinic this afternoon.  Since the operation she is opening her bowel anywhere from three to four times in a day (I actually told him it was 9-10 times on average and could be up to 19 times).  It is not diarrhoea it is formed stools and she has not tried any medications.  Her weight is steady, she is waiting for a CT scan to be performed next week before seeing the gynae oncologist.

On examination her abdomen was soft, the previous laparotomy as well ileostomy scar seemed to have healed nicely.  There is no obvious palpable groin lymph adenopathy and the digital rectal examination showed anastomosis, admitting the finger and proctoscopy did not show any obvious abnormality and apart from some internal haemorrhoids.

Ms T seems to be a quite anxious lady given her past history of metastatic cancer.  I have advised her to take Loperamide tablets to slow down her bowels but she does not want to try any medications as she believes that the medications are harmful, nevertheless I have recommended taking Loperamide tablet in order to reduce the frequency of bowels and she can increase the dose as required.  She has reassured me that she would try them.  Also she had some concerns on the anterior abdominal wall scars.  She mentioned to me that Mr G previously suggested that he could refer her to plastic surgeons once it was established that she does not have recurrent malignancy.  So I have suggested that we wait for the CT scan to rule out any evidence of recurrence.  If that is normal in her next visit within three months time we will consider whether she needs a referral to the plastic surgeons.

Thu 14 Mar

CT scan

Same procedure as usual – a jug of vile aniseed water to drink, a cannula in the arm and an injection of dye while lying on the CT slab.  The difference this time was that I wanted to use the loo the whole time I was waiting.  After the scan was done and the cannula taken out, when I was getting my coat on, blood gushed out of the vein.  Another nurse cleaned it up and asked if I was on a blood thinner (I’m not).  I wonder if I’m short of vitamin K if my gut isn’t working properly?

Thu 21 Mar

Dr M clinic

My scan result was fine! I was going to post the following update on Ovacome, but I think I will hold off until I get my blood test result:

I went to find out the result of my three-month follow up scan today, and was overjoyed to find there is no visible disease.  I was so relieved that I made a total idiot of myself and burst into tears in front of the poor consultant.  I had been terrified of an early recurrence after the brutal and gloomy predictions of certain registrars and because during the five months that I had an ileostomy I couldn’t eat the healthy diet I would have liked (it was more pork pies and chocolate).  Now I feel like I have a second chance and plan to ignore all but the most positive medical predictions and live on flaxseeds, organic fruit and veg and every anti-cancer supplement Holland and Barrett has to offer!  The consultant says I won’t be getting any more routine scans, just a Ca125 check in three months time.

I had bloods done after seeing Dr M and she says not to worry if my Ca125 turns out to be raised because this can happen after surgery (the reversal was six weeks ago though ...)  She says she will phone? me if it looks too high, but if not she will just report it in her clinic letter.  She says next time I should get the blood test done two days before the clinic, so I can get the result when I see her, and not have to worry.

We looked at my CT together and the lumpy area on my stomach is just skin, not muscle, and there is no sign of a hernia.  She was surprised I wanted more surgery, and doesn’t know which plastic surgeon to refer me to, so she says she will ask Mr G, then refer me.

Tue 9 Apr

St Thomas’s A&E

I missed the appointment with Prof R, as I had to go to A&E instead.  The previous day I started getting stomach pains which got progressively worse and kept me awake all night.  In the morning I phoned the GP surgery and got to talk to Dr AC (I like the way he calls people ‘luv’ – very friendly and Northern!).  He said he would see me, so I walked to the surgery.  He listened to my gut and said there were faint bowel sounds, so he wasn’t worried about it being an obstruction, even though I hadn’t had a poo since yesterday morning – not even any wind!  He said I could wait until 3.30pm, when he would be back for his afternoon shift, and see if it got better in the meantime, or he could call me an ambulance right now, to go to A&E.  I agreed to wait, but after another hour at home, I couldn’t take the pain and decided to get a taxi to A&E.  I waited there for five hours, punctuated by having blood pressure taken and giving them a urine sample.  While I was waiting for a blood test, I suddenly got diarrhoea, and after two trips to the toilet, I felt fine.  They still did the blood test and took everything seriously, given my history.  I have to let M know what happened, for the record.  I have to ask Dr AC to re-refer me for the Menopause clinic now -drat.

Occupational Health appointment

Got off to a good start with the OH lady, who was sympathetic and seemed to think I deserved a break, but the OH medic was a bit more formal.  I told him I wanted ill-health retirement, and when he asked me what I knew about it, I stupidly went on about how much extra NHS pension I would get (an extra six years on top of the four I have) if I was deemed too ill for work.  If I am just deemed too ill to work in my present job, I would get the four years but no extra.  I sounded so mercenary.  They said their job is to collect medical information and I filled in a form to request a medical report from the GP.  I have 21 days to ask to see the report and request any changes.

I got my clinic letter from Mr G’s registrar, which says I have three or four poos a day, but I told him it could be anything up to 19.  I phoned Mr G’s secretary and she said the registrar has now left, but she would get my notes and ask Mr G to change the letter, to say that the average was 8–10, and it could be up to 19.

Update, June 2013: GP, Dr C put an addendum about the corrections in another letter, and I sent the same info in a letter to Dr G at OH.  Now the GPs are just waiting for OH to pay them a £75 fee and they will send them the report.  I have to chase OH for an appointment two weeks after they get it. What a palaver.

Tue 16 April

Big Pants

Last week I had phoned M, the colorectal nurse, to ask advice about big pants for my trip to Ireland They told me about three websites to order things from but two didn’t exist and the other was no good, so I ordered some from Arelle.  They arrived and they’re like big baby nappies.  I won’t be using them!

Plastic surgery saga

I also mentioned about wanting a plastic surgery referral.  M said she would email Mr G.  Today, she called to say she had heard back from him and he says to wait until my next follow up in June, so that’s that for now.

Fri 19 April

Toni and Guy haircut

The Manager, Charlie, cut it as she is the ‘Strength in Style’ person, trained to work with chemo patients.  The cut was ok – there wasn’t really much she could have done with it, considering how short it is.  It cost £54.  Got flustered when paying, and didn’t tip her or the shampoo/head massage girl.

Mon 20 May

GP appointment

Saw Dr C about various things, including re-referral to Prof R’s menopause clinic (checked 17/6 – he hasn’t done it – have to chase him).  He agreed to add a paragraph to his OH medical report, to say that I had actually had my whole rectum removed, not part of it, and that I have an average of nine bowel movements a day, up to maximum of 18 times.  Forgot to ask him if I could get the left-over piece of stitch removed from my scar. 

Thu 13 June

Over 40’s health check

Got blood taken at the GP surgery, by the Phlebotomist, and found out that I should have fasted beforehand because it can skew the lipids result.  She took the blood anyway.

Tue 18 Jun

Bloods: Ca125, full blood count, kidney and liver function.

More blood taken, this time at STH, where they have moved the blood test department to a temporary shed while building work goes on.  As usual, there was nothing requested on the system.  After they called oncology and half an hour of waiting around, it got put on the system.  They said I should phone oncology myself next time and make sure the request is on the system before I come in.  Threw up when I got home, probably because I’m so terrified of hearing bad news on Thursday.

Thu 20 Jun

Dr M Clinic

Saw Dr S X-X, one of the registrars.  She was very nice.  She told me my Ca125 straight off: 10, which is down from 13 in March.  I had forgotten that I never got told the March result (Dr M had said she would only call me if it was worrying).  I’m really pleased because this means the trend is down, not up.  It was 9 in January, and I think the rise in March may have been because of the reversal surgery in February.  Anyway, it’s gone down!  I’m overjoyed by that. 

I asked Dr X the question OH had asked me to find out: ie does a 10% chance of survival mean I have a 10% chance of being cured for good, or a 10% chance of surviving for five years, and apparently it’s the latter.  She said that recurrence usually happens within two years.  She said I shouldn’t focus on the statistics though.

She asked about bowel movement frequency, and suggested I talk to the colorectal nurse specialist, as the surgeons don’t take much interest in what happens after the surgery. I said my main problem was smelly wind and that the colorectal registrar had no advice about that.  I said they will only try to get me to eat white bread and take Imodium, and that Imodium causes drowsiness, but Dr X didn’t think it would (it says so on the side effects list) and that they couldn’t help if I wouldn’t take advice. I said I would rather see what happens naturally.  She thought the colorectal nurse could refer me to a clinic where they specialise in long-term bowel issues.

We also had a chat about diet and exercise, and she said there is no evidence it makes any difference, but she totally understood that I wanted to do everything I could to help myself.  I asked if she had read ‘Anticancer’ and she said she knows David Servan-Schreiber’s son!  Also, her sister is a Reiki therapist and their dad says it’s the only thing that can fix his migraines (and he’s a doctor).  I said I am very sceptical about Reiki and she said she is too.

When I mentioned the shenanigans at the blood department, she assured me she would put the request on the system now, ready for my September follow up.

Dr S P’s clinic letter:

24.06.13

I am pleased to be able to say that there was no evidence of recurrence of ovarian cancer in clinic today.  Ms Thomas’ Ca125 was 10 today and she is not showing any signs of recurrent disease.  She continues to be troubled by disruption to her bowel function as a consequence of the reversal of her ileostomy.  She will be seeing Mr G’s team again to discuss this in the near future.

Dr SP, Specialist Registrar in Medical Oncology.

Fri 21 Jun

Statistical angst

R came over yesterday, to be supportive.  I didn’t really feel like company though and this morning, as he was going, I blubbed a bit about my paltry 10% chance of survival, and how the women on Ovacome keep dying.  It always comes unexpectedly, as they appear to be so positive, then they go quiet for a few weeks and suddenly their husband or relative is posting to say they’re dead.  R wondered why I even looked on there, and I said it’s nice to go on there, where other people know how it feels.  Statistically, I only have five years at the most, and I might be feeling ill later on.  I said if there was a way of going on holiday for free, to India say, I would want to do it while I still could, regardless of whether R can come with me or not.  I don’t want to just moulder away in Brixton, and waste my last bit of money decorating the flat – for what?  It’s not important.  I’m craving for animals and a garden.  At least I have the time now to write if I want to – I just have to get on and do it.

Over 40’s health check result

The nurse said it was OK that I hadn’t fasted, as it would only raise the result slightly.  My total cholesterol is too high: 5.8.  In 2008 it was 5.6, then in 2009 it was down to 5.3, now it’s gone up again.  She thinks it must be because I haven’t done any exercise since the operations.  The only thing I can do is exercise more, as I’ve already cut out diary and red meat almost entirely, since reading ‘Anticancer’.   I still eat butter, but I don’t know what to replace it with.  The nurse suggests Flora, but I don’t know if I’m convinced.  Doesn’t it turn into trans-fat when you heat it??  I’m still confused, no matter how much I read on line.  She said my HDL (good cholesterol) was quite high - enough to protect me from heart disease.  We filled in the questionnaire, and my chance of dying from a heart attack in the next 10 years is 3% - which is supposed to be good!  This also includes strokes (both types?).

I wanted to ask her to print out all the blood tests for me, but somehow I couldn’t ask, as I felt I had already grilled her too much.

Wed 26 Jun

Mr G clinic

I asked to see Mr G himself, as I needed to ask for a plastics referral.  He was quite happy to do that, which was a relief, as I thought I might have to argue my case.  There was a young male student there, which was embarrassing when I had to show my abdomen and groin to Mr G, and explain about my problem with uncontrollable wind.  Mr G scared me by saying that the plastics guy might have to completely unzip me again, and that there would be a risk of bowel injury – he said he might have to be there in case I needed another bag!  I said surely that must be a very small risk?  In any case, I will never sign a consent form for another bag.  Mr G will request an MRI for me, to see what is going on in the soft tissues.

Wed 17 Jul

MRI pelvis

Took my wax earplugs in preparation for the ‘road drill’ noise, and managed ok, after a 30 second panic attack at the beginning.  It was a bit hard to hear the radiographer’s voice through the headphones though.  I think I was in the scanner for about 20 minutes.

LW

Phoned L back, as I missed his last two calls.  He’s got liver cancer.  He says he has to stay alive until he can get a transplant.  He isn’t keen on a transplant - he would rather have the tumour removed and keep his own liver.  He found out just after the last time I saw him, about two months ago.  I said I will see him in ’heaven’ and he said ‘what makes you think you’re going there?’  He said it hasn’t sunk in yet.  He is having chemoembolization, where they put a tube into his liver via the artery in his groin and pump chemo directly into his liver.

Tue 30 Jul

Prof R’s Menopause Clinic

It was at the McNair Centre, at Guy’s, where JT works, but there was no sign of her this time.  I got to see a Registrar and I asked her about vaginal dryness and osteopenia.  She went off to confer with Prof R about whether I could use vaginal oestrogen cream, and apparently I can because it is low dose and not systemic, but I said I would be afraid to, as the vaginal vault is just the area that the cancer would be likely to come back (there was still viable tumour in the Pouch of Douglas, when Mr L did surgery).  I said I thought HRT was the reason I had got OC, but she thought that was unlikely to be the cause.  We had a long, inconclusive debate about whether my tumour was oestrogen sensitive or not (she thought it would be in my notes, but it wasn’t – how annoying).  I asked if oestrogen sensitive was anything to do with the BRCA anomaly, but her reply was totally confusing.  I don’t think she 

knew.

As I wasn’t convinced re the oestrogen cream, she recommended Sylk lubricant (looked on line later, and it seems to have better ingredients than Sensilube) and Balance Activ Menopause Gel , which seems to have better ingredients than Replens.  Wonder if I could get them on prescription.  I just worked out that, after bills, I only have £84 a week to live on.

Mon 5 Aug

Mr R’s clinic

The clinic was in Gassiott House, at STH.  Mr R had a student with him, a tall Indian doctor.  I had to suffer the embarrassment of peeling down my knickers to show the student my lumpy stomach.  Mr R guided him through the diagnosis:

‘What would you do?’

‘I would use lipo here and here and here.  The skin seems to be elastic enough.’

As soon as I heard them talking about lipo, I felt I was being fobbed off.  Mr G, the colorectal surgeon, had spoken of me being unzipped and reassembled.  He had even warned about needing to be on hand himself, in case of potential bowel damage, so what was this talk of lipo?

I told Mr R that I didn’t think lipo was the answer, as my flesh is all pushed down and off to one side (my belly button is nearly a centimetre over to the left) and worst of all, my right groin is all puffy and lopsided.  I told him my sex life is non-existent now, because I don’t want R to see what it looks like.   He said if he operated, it could all drop down again afterwards, and then he would have put me through an operation for nothing.  He said it was very difficult to move a belly button a short distance  – it would be a lot easier to move it a long distance.  He said I shouldn’t expect to have everything ‘perfect’ (as if I would!)

I couldn’t help thinking of an episode of ‘Botched up bodies’ I saw recently, where a guy who has lost a lot of weight has lipo on his belly, when really he should have had a tummy tuck, and he has been left with an ugly flap of loose skin.

I asked why my groin area was all puffy and felt tender, and whether it could be lymphoedema.  He said it could be (if so, how could it be a good thing to ram a lipo tube into it!) I asked him what the MRI had shown, and he said MRIs don’t show much.  I was incredulous, and all I could do was roll my eyes.  Why had I been given an MRI if it doesn’t help?

Finally, he admitted that surgery would give a better result than lipo, but he said he wanted to think about it.  He said he would make an appointment for me to come back in two months.  I said, ‘Can’t we decide now, then at least I could be on the waiting list to have something done.’  I pointed out that I might only be around for a couple more years.  He said I would be on the waiting list while he was thinking about what to do.

I left feeling so distracted, that I forgot to hand in my appointment request at reception, and had to go in with it the next day.

Wed 4 Sept

GP appointment

Saw Dr C to find out if he has my MRI report and to ask his advice about reconstruction.  He didn’t have the report and said call back in a week and he will chase it up.  He didn’t seem to want to get involved at all, which was disappointing because I really need some advice and reassurance.  I asked for a prescription for Balance Activ Menopause Moisture Gel, but when I took the prescription to Superdrug it turned out he’d prescribed the wrong one (he prescribed the one for BV) Tch.

Thu 19 Sept

Dr M Clinic

Uh-oh, a catastrophe - I pissed off Dr M!  I asked to see her especially, because I wanted her to interpret my MRI etc.  I decided I would be calm and in control, not like last time when I burst into tears with relief. I wanted answers to four questions.  As usual, she shook my hand when I arrived, which is very nice, and asked how I was.  I said I was very well, and for a split second, I thought she looked a bit surprised or something. Then she told me my Ca125 was 11 (up only 1), which was a huge relief.  With my first question answered, I launched straight into my question about the inguinal swelling. She said the MRI was normal and showed no reason for the swelling.  There was no sign of cancer either, which was another huge relief.  I told her it had swelled up like a sort of water balloon twice before (that was on 23^rd August and 14^th September) and each time it lasted about three days.  She had a look, but today it wasn’t swollen, and you can’t see how lop-sided it is unless I take my knickers off and lean forward.  My stomach was looking particularly flat too, because I lost a couple of pounds worrying about today’s result.  I didn’t tell her that though.  When I asked if it could be lymphoedema, and wondered if maybe I should be referred to the lymphoedema clinic, she said, “I think it’s just in your head! I’ve got people dying here!” and “You don’t seem happy with the Ca125 result, you just seem to want to find things to complain about!”  Stunned, I countered with, “I am happy with the result!  I’m incredibly relieved!” then mumbled, “Quality of life is important too.”  I said next time my groin swelled up I would take a photograph and she said to do that.  I said it had ruined my sex life and she said, “You have a lovely partner, I’m sure he doesn’t mind what it looks like.” I agreed, but said I had to feel good about myself too, in order to enjoy sex.  It was like she was saying I didn’t deserve to be in remission or have a ‘lovely’ partner!

I managed to battle on to my last question, which was: ‘When people speak about five-year survival rates, do they mean I have a 10% chance of being alive in five years, or do they mean I have a 10% chance of not having a recurrence for five years?’ and she said the latter!  She said I actually had a 10 – 20% chance (it’s gone up!).  She agreed that if you get to five years without a recurrence, you can almost consider it a cure (though there is still a small chance it could come back).  She said it usually comes back within two years, and not to get too excited, as I had only made it to 10 months so far.

She kept her professional cool and shook my hand again as I left, which was a relief, but I felt devastated by the whole interaction.  It blighted all the good feeling I should have had about the result and by the time I got home I was so depressed.

Mon 23 Sept

GP appointment

Dr C had ordered my MRI report, which I picked up from reception.  He couldn’t find the right gel on line, and I now realise I got it mixed up (oops) as the person on Ovacome said she gets Sylk on prescription, not Balance Activ.

Mon 30 Sept

Mr R Clinic

Mr R wasn’t there!  I had to see a registrar.  She seemed intelligent and helpful (although did I detect an underlying smirk?) but she can’t sign me up for anything or decide anything without Mr R.  Fracking Mr R.  I left two photos with the reg, that I brought with me, and she said she would discuss them with her colleagues and leave them in my notes.  She said it was difficult and she wasn’t really sure what could be done to put my belly button right.  When I described the intermittent swelling, she said it could be a seroma, which is like a space that fills up with fluid, then empties.  It can come and go, or it can seal itself up.

I had to make another appointment for Monday 4^th November (five fracking weeks away!)  The reg said to phone on the day of the appointment, to check that Mr R is there.  Are they toying with me? Perhaps he’s torturing me because I rolled my eyes at the last appointment.  I’m trying to forget about it but it’s very frustrating.  What if he doesn’t bother turning up next time too? (Stop doing ‘what ifs’!!)

Got home to Dr M’s letter, which I wasn’t looking forward to:

Dr M’s Clinic letter:

24.09.13

Mrs T is now 10 months post end of treatment.  She remains well in herself.  Her main issues are certain rectal urgency to defecate after her ileostomy reversal.  She is very concerned about the appearance of her abdominal scar and refers swelling in the right inguinal region.  I noticed that she had a pelvic MRI organised by Mr G, which is entirely normal and has not shown any abnormailities in that area.

In fact on examination today I could not feel any abnormality or swelling in the abdomen or inguinal area.

Her performance status is 0 and her examination is correct.  Her Ca125 is normal at 11.  We are planning to review her again in clinic in three months with a new Ca125.

Grrrr!  I told her that the scar itself doesn’t bother me – it’s the lopsidedness and the bulge, and I told her that the swelling comes and goes and that there was nothing to see that day!

Clinic letter from Mr R’s Registrar:

30.09.13

This lady has some abdominal asymmetry following her laparotomy for ovarian cancer, for which she required a temporary ileostomy.  She was seen by Mr R in August, at which time we noticed a bulge on the right part of the abdomen and twisting of the umbilicus, which she is keen to get sorted.  Mr R has discussed liposuction and excising and revising part of the scar.

Fri 18 Oct

Occupational Health appointment

Saw Dr G.  I told him that I still wanted to apply for ill health retirement and it seems that they want that too.  He was more concerned that I might feel forced out!  I told him that work is exhausting for me, because it’s hard work being around people all day.  I also told him I was trying to write stuff and he was very sweet and said he would like to read something I wrote.  I said the autobiography was too personal, but that if I can finish my novel, I wouldn’t mind anyone reading that.  I think he felt sorry for me because I have cancer. Ugh.

He is going to inform HR and J by email, and then there is some kind of form they have to fill in, and then I have to meet with them again.  Double ugh!

Mon 28 Oct

Swollen groin

Right pubic area swelled up again yesterday, for the third time.  I was hoping it would never happen again, but at least it happened before I see the plastic surgeon, and I can show him a photo.  It was even more swollen today.   Took more photos.  Felt grumpy and ugly all day, unfortunately for R.  I showed him the swelling, so he could vouch for me if he comes to my next plastics appointment.  He said it was a definite swelling, that he would be worried if it was him, and that something should be done about it. 

Tue 29 Oct

Groin still swollen.  It went down a bit over night, but then swelled up again.  It’s pissing me off.  I know I should be grateful that I’m alive, blah blah blah, but I would really like to be alive and not look gross.  I thought about going to the GP emergency clinic, so the GP could see it isn’t all in my imagination, as Dr M thinks, but in the end I couldn’t face the humiliation of going there and flashing my fanny.

Mon 4 Nov

Mr R Clinic

I got R to come along with me, to prevent another catastrophe like the last Dr M Clinic, where she said the inguinal swelling was all in my head, thus implying that I was either lying or delusional, and at the very least an ingrate and a time-waster.

First I had to see a registrar, and I showed him a naked photo (so humiliating!) of the swelling from last week, when it was at its height.  Then he had to go and ambush Mr R and drag him in for a brief audience.  It was quite hard to summarise everything I’d just told the registrar in the few minutes with Mr R, in fact, I forgot to ask him if he still thought surgery was an option, and the registrar had to disappear again for ages to ambush him again.

The outcome was that we would just do liposuction on the bulgy bits, and if that didn’t turn out well, surgery on the scar could be considered.  They said I would get a TCI date, but when I got the appointment letter printed out at reception, it appears to just be another clinic appointment, for 6^th January.  They also said I would be referred to Mr G, to try to discover what was causing the swelling, so that he could operate on the same day as Mr R, if necessary.  They said I would get an appointment from Mr G before the TCI for liposuction, and Mr G might do another scan (don’t know what kind).  Sigh.  Will this ever get sorted out?

Sat 16 Nov

The typo scare

Got my clinic letter from Mr R’s registrar today, and was horrified to read the phrase, ‘... she had an MRI in July 2013, which showed recurrence of her disease.’  After my head stopped spinning, however, it occurred to me that this must be a mistake, or why wouldn’t Dr M have told me.  Then I remembered I have a copy of the MRI report, and it says there is no evidence of any disease.  But still, I couldn’t help worrying: could someone else, maybe from plastics, have reassessed the MRI since then? 

I phoned Mr R’s secretary first thing on Monday morning, and was incredibly relieved to hear that it was a typo.  She is going to forward another letter – the referral to Mr G, which I didn’t get – which says, ‘... no recurrence ...’  I’m so angry at the sloppy typist.

Mr R clinic letter:

8 Nov 2013

It was a pleasure to see (me) in clinic today.  She has previously had a laparotomy for ovarian carcinoma in September 2012 and had a reversal ileostomy in February 2013.  Most recently she had an MRI in July 2013, which showed recurrence of her disease.

She now comes to us complaining of a right periumbilical bulge and deviation of the umbilicus.  In addition, she has noticed increased swelling in the right inguinal region, which has become worse over the last few weeks/months and which is intermittent.

On examination of the abdomen, she has some fullness to the right of the umbilicus as well as some tethering of her umbilical scar.  I was unable to elicit any hernia and this seems to be soft tissue swelling only.  On examination of the right inguinal region, there was no bulging noted at the time of examination and no obvious hernia formation.

After discussion with Mr R, we have decided the best course of action for (me) with regards to the abdomen, is to proceed with liposuction only to see if this improves the appearance of the abdomen and to leave the scar revision as a possible secondary procedure should this not work.  In addition, I will be referring her to Mr G, consultant surgeon to ask him to review the swelling that (I) has been experiencing in the right inguinal region.

Mr RD

Microfellow in Plastic Surgery

Referral to Mr G

8 Nov 2013

Thank you for agreeing to review ## for us.  I believe she is well known to you having previously had a laparotomy for ovarian carcinoma in September 2012 and then reversal of ileostomy in February 2013.  She has most recently had an MRI in July 2013, which showed no recurrence of her disease.

In the course of her follow up with us today, she complained of some swelling in the right inguinal region, which she says has been getting worse over the last few weeks/months.  She tells me that she first noticed some discomfort in the right inguinal region after her initial surgery in September 2012 but this never bothered her in the past.  Following the reversal of her ileostomy however, she says that she noticed the swelling became worse and it now feels as though there is a “bag of fluid there” at times.  She also tells me that this swelling is episodic and that at times will be completely flat.

On examination with Mr R today, there was no swelling noted over the right inguinal region and no obvious hernia formation clinically.

This problem is causing ## considerable distress and is impacting on her sexual well being.  We would be most grateful if you review her with an eye to possible further investigation and /or management.

Mr RD

Microfellow in Plastic Surgery

Wed 4 Dec

Swollen groin

Noticed my groin is swollen again today.  It feels strange/tender at the top of my thigh too.  Maybe the common denominator is that I’ve been sitting at the computer for several days and haven’t done any exercise.  Someone on Ovacome kept getting a swollen groin before her recurrence. 

These are the dates it has swollen up:

23/8

14/9

28/10

4/12

15/12

23/12

25/12

Intervals between are therefore: 22 days, 44 days and 38 days and more or less continuous in December.

Summary of Ca 125 scores

24.4.12 = 185

24.5.12 = 403 (after biopsy)

28.6.12 = 145 (after 1^st chemo)

19.7.12 = 57 (after 2^nd chemo)

After third chemo = 40

Dec12 = 10

09.01.13 = 9

21.03.13 = 13 (No clinic letter.  Raised because of ileostomy reversal)

20.06.13 = 10

17.09.13 = 11

19.12.13 = 11

Tue 17 Dec

STH to get bloods done.  They’ve got a shiny new blood test department, in South Wing.  The nurse was amazingly efficient, and no waiting around like all the other times.

Thu 19 Dec

Dr M’s clinic, Guys

Saw Dr K, Clinical Fellow.  My Ca125 was 11, which is the same as last time – yippee!  I’m not dying yet!  At first I was depressed because I thought it had gone up from 10 (and would continue to creep up each time, until I got a recurrence) but we checked on the computer and it was 11 last time, so it hasn’t gone up.  Then she briefly prodded my stomach.  When she prodded my right groin, which was covered by my knickers, I said, “That’s swollen,” and tensed up, hoping that she would enquire into why it was swollen, but she just moved onto another area, without asking.  She tried to make small talk with me, but I felt strangely remote and couldn’t engage with it.  I couldn’t wait to get out of there and go home.  She must have thought me a miserable cow.  After the result sank in, I blubbed for a second with relief.  I said I get so stressed waiting for results and that sometimes I think I would rather not go through this every three months.  She replied that it’s best to know, and I agree really.

Dr K’s clinic letter:

20.12.13

Ms T is now 13 months post end of treatment.  She remains well in herself.  Her main issues are that of bowel disturbances after her ileostomy reversal.  On examination today she appeared well and there were no signs to suggest disease recurrence.  She had an MRI a few months back which was normal.  Her Ca125 from 17^th December is normal at 11.  We are planning to review her back in clinic in 3 months time with repeat bloods.