Cancer Diary 2014

DIARY 2014

Mon 6 Jan

Mr R’s Clinic

I had no idea what this clinic appointment was for, as Dr RD had said the liposuction would be on a Thursday in January or February and that Mr G would check on the day, to see if I have a hernia.  On 17^th December, I chased it up, and Mr R’s Secretary emailed JT for me.  On 18^th December, Mr R’s secretary called me back and said she would ask Mr R about a TCI date.  Nothing came of any of that, and I just had to come into clinic again today.

R came with me and I was seen by both Mr R and Dr RD.  They agreed that this appointment was indeed pointless.  I am now supposed to be getting a TCI date for mid-March.

I asked RD if I could retrieve a photo I gave them of my swollen groin, because it’s embarrassing, and he gave me the notes to look through in the waiting area.  However, I searched all through and it wasn’t there.  What I did find, were the words, ‘Very anxious’ at the front of latest clinical notes – from the time when I was desperately trying to get my stoma reversal. I wish I’d put a name sticker over it, as I’m certain it colours everyone’s perception of me.

Tue 21 Jan

Nurse F for holiday vaccinations - not having malaria shots or rabies.

Thu 23 Jan

India visa appointment, 3pm.

Tue 28 Jan 3:10pm

Prof Rm Menopause Clinic

The ST3 was very nice and went through all the options.  I still think it’s too risky to use oestrogen cream, so she suggested I try Sea Buckthorn supplements.  I’ve ordered some online.

Menopause Clinic letter:

28.01.14

We reviewed this pleasant lady in the menopause clinic today.  Her main complaint is of vaginal dryness and soreness.  She was seen in August and was advised to use Replens and Sylk moisturisers.  At this time she was not keen on trying Ovestin cream and it was left as an option for her should she want to at a later date.

She has not found the Replens or Sylk useful and is still not keen on using oestrogen based creams in view of her cancer history.  I have reassured her that it is a low dose and it would be fairly safe for her to use.  She is still not keen at present but says she will consider it at a later date if her symptoms became very severe.

Unfortunately there is nothing else we can offer at the present time and I have discharged her back to you care.

Yours sincerely

Dr SS

ST3 to Professor Rm

Thu 30 Jan

GP

Dr McC agreed to give me some back-up antibiotics (Clotrimazole) in case of diarrhoea in India.  Asked her if past chemo affects vaccinations and she said it doesn’t.

Thu 27 Mar

Dr M’s Clinic

Saw a nice Indian registrar, Dr SG, and we connected a bit when I told her I’d been to Varanasi, as her mother lives there.  She prodded my abdomen, which was fine, then she asked me if there was anything I wanted to ask about.  I told her that having a swollen groin was a downer when I was on holiday, and suddenly found myself welling up with tears.  I told her how Dr M had reacted angrily before, and that I had been afraid to bring up the subject again.  Dr SG agreed that it looked puffy.  She suggested counselling, but I said I was a practical person and would like to find out if there was anything the Lymphoedema clinic could do.  She agreed to refer me but she doesn’t think they will be able to do anything.  I said I would consider counselling if the Lymphoedema clinic can’t help.

Oncology Clinic letter

27.03.14

I saw Ms T in Dr M’s clinic today.  From an oncological point of view she remains well in herself and her marker was 11 when checked a couple of days ago.  Examination today was normal and there was nothing to suggest any disease recurrence.

However, unfortunately G has been struggling somewhat with issues that she has had post surgically, firstly with 2 areas on her abdomen for which she is awaiting liposuction and also a small area of likely lymphoedema across the supra pubic area for which she is finding altering her life drastically.  She understands that this is not life threatening and should not be causing her to many problems but she is finding it extremely difficult to cope with and move on from.  She has asked to see the lymphoedema team and although I think there is not much that they will be able to suggest or help her with she understands this and is happy to go and at least meet with them even if she is told that there may not be a lot in terms of prosthesis but could help.  I have also suggested about whether she would consider counselling to discuss issues that she might have regarding the lymphoedema and other areas in her abdomen for which she is awaiting liposuction.  She will definitely think about this but will firstly visit the lymphoedema team and hopefully this will help her in the future.  

We will see her back in our clinic in 4 months time with of course a repeat marker before that.  She knows to contact us if she needs to in the meantime.

Dr SG

Staff Grade Physician Medical Oncology

Fri 11 Apr

Liposuction saga

Phoned JT to chase up my plastics appointment.  She said they said they would call me to update me in two weeks (i.e. by Friday 25/4) and that my TCI will ‘probably’ be in May.

Mon 28 Apr

Haven’t heard from JT yet.  Called Plastics: told to call back Tuesday.

Tue 29 Apr

Called Plastics:  JT not there (tube strike).

Wed 30 Apr

Called Plastics: JT not there again – off sick.  Told them I am available on short notice. They said Mr R usually sees patients on the Monday before the procedure.

Fri 2 May

Managed to speak to JT – she will book me in for pre-assessment nurse clinic on 12/5 and ‘try to pin him down next week for a date to come in this month ... otherwise it will be arranged at the pre-assessment clinic’

Mon 12 May

Mr R clinic, 3:30pm and pre-assessment nurses

Saw Mr R, RD and another young female doctor.  Mr R suggested making a lateral incision, below the knicker-line, and pulling the skin down into the incision, like a tummy tuck.  They would release the skin from just under my boobs and move it all down.  As he explained this, he grabbed a handful of flesh and pulled it downwards.  I said, “Won’t that make my breasts lower down?” and someone said, “No”.  He said (speaking to RD) that he could move my belly button back to the right place, at which my ears pricked up as I liked the sound of that.  Then I asked how big the scar would be and he said right across from hip to hip (i.e. 10 inches).  I said “That sounds horrific!”  It just slipped out - I hope I haven’t offended him.  I expanded on it, saying, “Scars have their own problems – they get stuck, and they’re ugly”.  RD suggested pulling the skin inwards, towards the existing scar, instead, but Mr R said, “Then you would get a boat.”

Mr R suggested I come into clinic again, three to four weeks before the op, so he could consult with colleagues (did he mean they would see me in clinic with him or just confer with him beforehand.  The thought of yet more delay seemed intolerable, so I said I just wanted to get it over with.  I said I had been lucky to have a long remission so far, but OC usually comes back within the first two years, and if that happened, all this would be off the table. I asked if I could just have a TCI date and have the lipo.  He said J organises the dates (she had said it was up to him).

He suggested doing lipo in the groin area too.  I said I had read online that if you have lipo for lymphoedema, you have to wear compression garments over it forever.  He said that was just for legs.

After Mr R left with RD, I tried to explain to the young female doc that I hadn’t meant to sound ungrateful, but the tummy tuck idea had taken me completely by surprise, as Mr R has been talking about lipo for the last 10 months.  I said I didn’t like the idea of another big scar.  I could barely understand what she was saying, as my brain was in overdrive, trying to work out if I had made the right decisions.  How am I supposed to decide what to do in 30 seconds!

After this, I had weighing and blood tests and questionnaires with the pre-op assessment nurses, then I was supposed to hand a form to reception, I think telling J to put me on the operation list, but by this time, the reception had closed (Mr R’s clinic was running two hours late due to chaotic admin).  The nurse said she would put the form on her notice-board and hand it in for me tomorrow.

So now I am supposed to wait for an appointment letter ... just ... keep ... waiting ...

As I left I felt like weeping.  Instead I got the tube back to Brixton and had coffee in Starbucks while waiting for the rain to stop.

Plastics clinic letter

12.05.14

This lady was reviewed in Mr R’s outpatient clinic today.  She is still waiting for a date for her surgery but she is on our waiting list.  A discussion regarding her abdominal wall was undertaken between herself and Mr R today and he feels another option for her to improve her abdominal contour would be a small abdominoplasty.  She is however worried by the idea of a large lower abdominal scar and therefore she would feel more comfortable with an area of liposuction instead.

She was sent to a pre-assessment clinic today and we will let her know about a date, hopefully in the near future.

Miss DG

Microfellow in Plastic Surgery

Thu 15 May

1:30pm Phoned JT.  Her colleague said she was ‘on the phone’.  Left a message asking her to call me back.

4:50pm Phoned JT again.  Her colleague said she was ‘on the phone’.  I said I would wait on the line, and J eventually answered.  She said my TCI date would be June “unless he decides not to do the operation”?!?  She said he books operations four weeks in advance.  She said if there are any cancellations in May she will contact me.

So I still don’t have a TCI date.  So angry. 

Later: lay awake in bed fantasising about viciously stabbing Mr R to death.  I read online, that the maximum waiting time is 18 weeks.  Even if Mr R argues that the procedure changed (although it didn’t), and that the clock stopped then restarted with a break while I was in India, that would still mean I have to be seen by the end of June.

Thu 29 May

First appointment in Lymphoedema Clinic

Did my best to put my new body language skills into practice, and think I started off quite well.  It was a long appointment though, and pretty depressing stuff to handle.  I think the woman I saw was a specialist nurse.  She went through a health questionnaire, then questions relating to lymphoedema and how it affects me (at which point I got tearful – shit - couldn’t help it).

She totally played down the groin swelling, insinuating that I had body dysmorphia and should just forget about it.  I retaliated, saying that I am quite happy with my body, despite its many imperfections, for example I don’t mind having a flat chest and I never wanted breast implants, but my abdomen looks ugly and distorted now, which is a different thing.  I explained that having an ugly groin was ruining my sex life.  I said my partner was very understanding but that I didn’t want ‘pity sex’.  I said I have to feel attractive to enjoy sex.  She said she’d had stage 1a OC herself, 14 years ago, and has a swelling in the groin too.  She puts this down to being sewn back up that way, and never looks at it.  She says she found a way to deal with it (she didn’t specify what.  I wonder what her sex life is like if she never looks at her groin - does she let her partner see it??).

Then she measured my legs, as I told her the right one looks plumper than the left one lately.  She also compared them in a special machine and found that the right one is indeed 4% bigger.  She said it also felt different.  She gave me a pair of black support stockings and said I will get a second pair in the post, from ‘Medi’ – a support garment firm.  I have to wear them all day, every day, for the rest of my life, but I can take them off at night.  She told me about a male patient who doesn’t wear them when he’s out and about in summer (he wears shorts) He keeps his condition in check, but doesn’t get as good a result as he could do if he wore them all the time.

It was totally depressing, but in a way less depressing than the groin problem, as no-one wants to acknowledge that.  They just want me to ‘not look’.

I tried to get advice regarding whether plastic surgery or lipo on my abdomen/groin would make the lymphoedema worse, but she wouldn’t engage with the question at all, just kept fending it off.  I guess she can’t commit herself to an opinion, in case she’s wrong.

Mon 2 Jun

Appt with GP, Dr McC

Handed cervical screening letter to reception, so they can inform them that I don’t need cervical screening anymore [December: got another screening letter - they haven’t informed them].  Told doc about my numb little finger/ring finger on left hand (ulna nerve).  She suggested NSAIDS for two weeks and she will refer me for tests if it doesn’t resolve.   Also got a prescription for Naseptin.

Told her I was still waiting for a date for liposuction with Mr R and that I thought he didn’t really want to do it, and that I wouldn’t mind being referred to someone else, like KR, because I have  groin lymphoedema and he specialises in that.  She said she would phone Mr R’s secretary by the end of the week.

Tue 3 Jun

Call to JT

I had planned to just find out if I had a date and, if I didn’t, to calmly end the conversation and take it up with PALS.  However, when she said I don’t have a date yet, I lost my cool and ended up having a long debate with her. 

I said if he books up four weeks in advance, it looks like I won’t be getting an appointment in June.  She said he hadn’t replied yet to her email, with the names of the people ready to come in ...  but then she seemed to contradict this by saying he is fully booked up for June and that maybe I could be fitted in if one of the patients went on holiday.    I said she told me my TCI would be April, then it was May, and now it’s not even in June.  She said he had to see the urgent people first.  I said there will always be urgent people, so he could put off seeing me indefinitely, but nevertheless the waiting time is supposed to be 18 weeks.  I said Mr R had told me that it was down to J to give me a date, and that she, J, was telling me that it is down to him to give me the date.  She said she gives him the list of people, but he chooses which one’s he will do.  I said, if he doesn’t want to do the surgery on me, he ought to say so, as I have wasted 10 months waiting for it and if I have to get referred to someone else, I might have to start waiting all over again.

The conclusion was that she will try and get Mr R to nominate someone else to do the surgery in June.  I said how will I know they are experienced and I would need their name so I can google them.  She said she would give me their name.  She said she would call me by the end of this week.  If she doesn’t, I’ll go to PALS on Monday.

Fri 6 Jun

Message from JT.  She will try to get me a TCI date for June (with Mr R) She will call back on Monday.

Mon 9 Jun

Waited until 4pm, then phoned JT (at first she was ‘in a meeting’, then she was ‘on the phone’ but I insisted on waiting and so she had to speak to me).  She said is arranging an extra list for Mr R (for me and three other patients who are desperate) and will be making arrangements with theatre staff tomorrow morning.  She (says) she will call me after lunch tomorrow ...

Tue 10 Jun

JT called and I have a TCI date!!!  For Thursday 19^th June – that’s in nine days!!!  Terrified!

Spent hours searching online for any reviews of Mr R, but the only things I could find were mentions of his publications or information about his private practice – no reviews.  I have to find out if liposuction of my right supra-pubic area is wise or not.

Thu 12 Jun

I was hideously depressed about having to wear compression tights for the rest of my life. 

Fri 13 Jun

Lymphedema clinic

Lost my cool with the lymphedema nurse, trying to get her to advise me on whether to have liposuction or a tummy tuck on Thursday.  I think she thought I was mentally deranged.  Not totally clear what her advice was in the end, but I think she said she wouldn’t advise liposuction in the groin area, as there is no fat there, it’s just how I’ve been put back together.

At least she has ordered me some one-legged, open-toed tights, in ‘apricot’, which is supposed to be the same as ‘sand’.  They should arrive in 10 days (actually, I didn’t get them until 16^th July.   I phoned the company , Haddenhams, on 7^th July, and they had no record of the order – I don’t believe she actually ordered them – to punish me for giving her a hard time -  so I had to phone the clinic and get them to order them again – quite a saga.)

Liposuction dilemma

Called Lymphedema Support Network (LSN) for advice on whether to let Mr R do lipo on my groin area.  I think the gist of the reply was that lipo for lymphedema is a specialist job.  Even doing the bulge of fat next to my naval is a risk for making the lymphedema worse.  She (K) said Mr R should speak to the lymphedema nurse regarding compression garments after the operation (there’s no time though, and I don’t want him to delay the op again).

Tue 17 Jun

Mr G’s clinic

Arrived early for appointment.  Fax not there.  Phoned Mr G’s secretary, who then faxed it.

I was seen by Mr G’s Registrar (H) and updated her on the state of my bowels.  I had to be quite negative in order to get her to put convincing things in the reply to NHS Pensions, which makes me feel guilty, but on the other hand, everything I said is basically true.  I said I go about seven times a day, don’t eat all day if I have to go out, and have to rush home to the toilet straight away if I do go out to dinner.

She brought in a nurse (Filipino?) and got the poor woman to put Vaseline up my bum, so H could do a rectal exam.  She had a good look and said it was the best anastomosis she had ever seen!  I don’t know if she was just being nice, but I said, “Ooh, I feel quite proud!”  I said I was surprised when I found out I had metal staples in there, and wondered how that could not hurt, and she said there are no nerves for sharp objects in there, only for the sensation of being stretched.

She said she would refer me to the colorectal nurse clinic, to try and improve my bowel function, and I had to agree, since I had been so negative about the state I was in.  Then she tried to convince me to start taking Loperamide, to regulate things, but I said I didn’t want to start taking Loperamide for life, especially as one of the side effects is supposed to be drowsiness.  I said I had tried Loperamide last year (actually, I only took it once) and that it makes me constipated (it did).  She suggested taking it along with Fybogel, the idea being to have one big poo in the morning.  I said I used to take Fybogel for constipation, before the cancer diagnosis, and that it used to make me feel bloated.  Finally, I said I didn’t want to take Loperamide, but that I would give Fybogel another try.

Then, right there, she dictated a reply to NHS Pensions, along with my clinic letter and a referral to the colorectal nurse clinic. (Thankyou H!!)  She said I had diarrhoea 10 times a day, which was very cooperative of her.  Now I just have to pray that it gets typed and sent to NHS Pensions.

Mr G Clinic letter

17 June 2014

I reviewed this lady who is now 18 months post TAH BSO, anterior resection and ileostomy, joint surgery with Mr G, she is now in bowel continuity.  She is bothered with anterior resection syndrome and we are arranging for her to see our biofeedback nurses.

On examination her abdomen reveals scars from previous surgery and she is awaiting plastic surgery review of her abdominal shape.  The perineal inspection, digital rectal examination and rigid sigmoidoscopy showed an intact healthy anastomosis with no stricture and no lesions.

We have not arranged to see her again routinely in the colorectal clinic but would be happy to do so in the future if you wish.

HO

Senior Registrar to Mr G

Letter to biofeedback nurse specialist:

17 June 2014

Could you please consider reviewing this 56 year old woman who has got quite severe anterior resection syndrome.  18 months ago she had a TAH BSO with anterior resection temporary ileostomy for ovarian malignancy, she is now in continuity.  Her scans have been all clear from an oncological point of view.  Her bowels open 9 times a day, she gets urgency, she avoids leaving the house where possible and if she does need to leave the house she avoids eating.  She has tried loperamide but it has made her feel quite constipated and prior to her bowel surgery she generally was constipated.  I have suggested adding in Fybogel but she is so averse to loperamide she is unkeen to try this at the moment.

Could you please see her and see what help you can advise her?

HO

Thu 19 Jun

LIPOSUCTION!!!

Arrived at the Surgical Admissions Lounge at STH, Lambeth Wing, at 7am, and Ronnie arrived to keep me company.  I got changed into a gown and was the first on the list!  Mr R’s Registrar (D?) marked up my stomach in purple marker – concentric rings over the problem areas.  Then I was put on a trolley and a cannula put in the back of my hand.  They put a mask over my face, told me to take deep breaths and I was asleep by about the fourth breath.

When I woke up after the op, I immediately felt my stomach, to make sure there hadn’t been a major blunder resulting in another stoma bag – no bag - thank God!  Very happy about that, although my groin was swollen horribly, as I feared.  They had put a big, white, Velcro binder round my abdomen, but it didn’t compress my groin at all.

Got dressed, in knickers, compression tights and Primark holding-in knickers and my airport dress and new black plimsoles, and felt quite presentable.  I tried to recover, like some other chirpy ladies, but there was a horrendous uncomfortable feeling of trapped wind in my stomach.  It felt like I need to burb, but couldn’t.  I found it unbearable.  The nurses began to look more and more pissed off with me, as I mooched around, looking miserable, and one of them asked me if I often had this feeling, presumably thinking it was down to my neurotic personality, and I said, “No, I’ve never had it before!”

After a long while, she called Mr R and the Anaesthetist to come and have a word with me.  Mr R turned up and didn’t seem to recognise me at first.  I told him he’d done a great job on my abdomen, and it looked nice and flat.  I showed him the Primark knickers/tights set up and asked if that was enough compression, and he said, you could do more.  I told him about the feeling of trapped wind in my stomach and he grimaced and said he didn’t know, and that he would get the anaesthetist.

The anaesthetist came in (this was all taking place in the patients’ waiting-to-leave area) and he said when they put the air tube into your throat, sometimes wind goes into the stomach.  He said it would make its way out either upwards or downwards.  I said, “So nothing got punctured or anything?” and he said there would be other symptoms if that had happened.  He said it was a common thing and most people didn’t find it so distressing.  He said if it got worse to come back or to go to A&E if it was after hours.  

Later, after we got a taxi back to Brixton, and I had walked up the stairs, the trapped air came out in a big burp – what a relief!  However, my throat felt bruised for two days, every time I swallowed food.

R stayed on Thursday, then came over Friday and Saturday night after work because I asked him to (he’s such a Care Bear!) then stayed all day Sunday and Monday until Tuesday morning.  I tried to be good company but it was difficult because the tight knickers are so uncomfortable and part of me was dying to just be free to be miserable, wear the ugly tights, and try out different garment combinations in private.  The groin swelling still looks hideous.  We didn’t do much, just ate lamb chops, played Scrabble (I won as usual) and watched football and ‘Avengers Assemble’ on DVD.  R did loads of food shopping for me.

Wed 25 Jun

Call from Mr R’s secretary.  She just got a letter from Dr McC, about my concerns about the liposuction.  She wanted to know if she needed to bring forward my follow up appointment.  I said Dr McC had said she would write to Mr R by 6^th June.  I said the liposuction has been done now, so the letter is irrelevant and that Mr R had answered my questions on the day of the procedure, so she didn’t need to do anything.

My garments arrived from Macon.  The medium size hernia-holding-in knickers are quite good, maybe a bit small, but I will keep them.  The post-lipo corset thing is made for a taller person, so will have to be returned.  Also the foam insert and the small size hernia knickers are no good.  I have now ordered a large-size pair of hernia knickers.  Oh God - will this groin swelling ever go down?

Thu 26 Jun

Plastic Surgery dressing clinic

Sweet nurse.  She seemed quite empathic about surgeons – Mr R hadn’t written down anything about whether the sutures were dissolvable or needed taking out, so she wrote me a GP letter just in case they need to be taken out.  I don’t have to use dressings anymore.

Fri 27 Jun

Large size hernia knickers arrived.  Better fit, but still uncomfortably rigid to wear.  What I need is made-to-measure, comfortable, stretchy, high-waist shorts – can I make some, or get some made???  The Primark ones are comfortable, but they only provide compression around the abdomen, not around the groin, and the M&S ones have tight tourniquet-like waists and leg holes.

Sun 13 Jul

Been reading up on vaginal oestrogen cream.  The alternative people say estriol is weaker and therefore better than estradiol  (produced by ovaries) or estrone (produced in fat), but the scientific types say it is just as dangerous and should therefore not be used if you have oestrogen-driven cancer.  Even the ‘Gynoflor’ estriol cream manufacturers  say don’t use it.  I keep thinking, maybe if I were to just use a tiny bit, on the outside and the vaginal entrance, but I guess it’s just too risky, as it definitely enters the blood stream.  At the Menopause clinic, they said it would just be replacing what I had before my ovaries were removed, but why do the manufacturers themselves say don’t use it? Maybe I should try Replens again, even though it contains parabens and drain cleaner.  Balance Activ Menopause Moisture Gel doesn’t do much except leak out again.  I wonder if I can get Replens on prescription ...

Tue 15 Jul

GP nurse to get stitches out but they have actually disappeared in the last few days.  Went anyway, to make sure and to ask about the embedded stitch.  She obviously thought I was a nutter and said I should just leave the old stitch in there, as it would require cutting out.  I said I would rather not have it there.  Made a GP appt with Dr S, to see if she will remove it, and to see if I can get Replens on prescription, but cancelled the appointment later.

Wed 16 Jul

The Haddenham tights

Collected the one-legged tights from Guy’s – fuck, they’re ugly!  They couldn’t have made them uglier if they tried.  And they cut in at the top of the leg like a tourniquet and provide absolutely no panty area support.  I will give them back. 

Cut a leg off one of the pairs of black tights in desperation.  It sort of works, but rolls a bit, and I will have one black leg under my maxi dress which will look pretty odd if anyone sees it.

Went to local fare.  By the time I got home, my groin had swelled up again – the smallest walk seems to do it.  I really think I ought to be entitled to LVA (lymphaticovenous anastomosis) on the NHS.  I’m going to pursue it.  I’m sick of this!

Tue 22 Jul

St Thomas’s to get blood taken.

Thu 24 Jul

Dr M’s clinic

As soon as I came in I could tell that the registrar, Dr G, had bad news - my Ca125 is up from 11 to 29.  However, she didn’t seem to know that I had liposuction five weeks ago, so I am clinging to the hope that it caused the rise.  It is a big jump though; when I had the ileostomy reversal, it only jumped by 2 points.  Maybe I’ve made my cancer come back by having liposuction, just for the sake of vanity.  Dr G kept saying things like, “I don’t want to give you false hope.”  I was upset, so she wheeled in M to provide comfort.  I wailed about it being the end of my chance for a cure.  I have to go back in two weeks, for another test, and if it’s gone up more, then I have to get a CT.  Depressed as fuck, and just felt like sleeping for ever when I got home.

Dr M Clinic letter

24 July 2014

I saw G in clinic today.  She is actually feeling extremely well in herself and for the first time in almost 2 years is feeling like she is getting her life back.  She had liposuction about 4 weeks ago and on examination there was certainly nothing to suggest disease recurrence.  Clinically, she was completely asymptomatic.

Unfortunately, her marker which was measured 2 days ago at Guy’s Hospital, has elevated from when we saw it last time 4 months ago from 11 to 29.  This is most likely a reflection of the recent surgery she has undertaken, and we would suggest that we monitor her marker to ensure its decline some time away from the liposuction surgery.

This is understandably an extremely worrying time for G.  I do not think an urgent CT scan at this time is indicated but I would like G to come back and see us in a few weeks time with a repeat marker.  At that time if her marker remains elevated or has elevated further then we will need to request an urgent CT scan to assess for any disease relapse.  If the marker has come down to a normal level then we would still continue to follow things up closely.

Dr SG

Staff Grade Physician Medical Oncology

Mon 28 Jul

Mr R clinic, STH

There is nothing else that can be done by Mr R, so I just thanked him for his work and said I was very happy with what he had done, i.e. flattening the bump.  I mentioned that I would still like to have the ends of the small scar tidied up (which he offered to do long ago, the first time I saw him) so he has put me on his waiting list for that.  It will be local anaesthetic.

Mr R Clinic letter

28 July 2014

I reviewed G today.  She is pleased with the result of her surgery to her abdomen last month.  Her abdomen has a much better contour.  She does have a scar in the right abdomen, which she would like revised.  This has dog ears at both ends and a scar revision would be suitable for this.  I have put her on the waiting list for this to be done as a local anaesthetic procedure.

Mr PR MBBS FRCS (Plast)

Consultant Plastic, Aesthetic and Reconstructive Surgeon

Thu 31 Jul

Lymphoedema clinic, Guys

Saw a different nurse this time.  I don’t remember her name.  She seemed new.  We did the measurements, and my right leg is only 3% bigger this time.  She showed me a graph on the computer and compared it to a graph for her own legs (she has a vascular condition) showing that hers are more disparate than mine.  I said my problem is the groin swelling.  I told her that none of the shape wear I’ve bought helps with groin swelling and that I’ve wasted a ton of money on it for nothing.  We looked in the catalogues, but there is nothing off-the-peg that addresses the groin issue, and she said ordering made-to-measure would mean I would be tied to the Lymphoedema clinic (not good!)  She suggested stockings, but I said I had bought a pair and they were ‘so wrong’.  Then she went off to get advice from the other nurse (M) and came back with the advice that I should get stockings and buy shape-wear, at which I grimaced and rolled my eyes.  She suggested I write a letter online to ‘Lymph-Line’.  She said most women they see in clinic are fat, and although they might have groin swelling too, they are more concerned with their legs.  She showed me how to do simple lymphatic drainage massage on myself (I have to do two 15-minute sessions a day).  Quite a cursory demonstration I thought, and probably nothing I couldn’t have got from YouTube.

Tue 5 Aug

Got bloods done.  Nice walk along the South Bank and had a Starbucks and Yo-sushi on my own.

Thu 7 Aug

Dr M’s clinic

What a fiasco – I was taken to a room by M, who began by saying everything was fine, and that the count has gone down two points – to 27 - but then she went on to say it was too soon to tell after only two weeks, and that I shouldn’t have been asked back to clinic yet.  I asked what we could deduce from it going down two points, but she kept saying they couldn’t say and that she didn’t want to give me “false hope”.  She said I could see the registrar if I wanted to, but there wasn’t really any point as it was too early to say anything about the result.  I kept calm, with difficulty, and said I would like to talk to the registrar if I could.

After waiting for a while, I was called in to see Dr G, with M.  I grilled Dr G and she conceded that the rise had probably been due to the liposuction, as it was coming down, rather than going up.  She said I should make an appointment to come back in four weeks for a repeat test.  I asked her if drinking lots of green tea in the past week could have masked the result temporarily, but she didn’t think so.  I kept asking her questions she couldn’t answer - because no-one has researched these things, and probably because I didn’t ask them very well - then apologising to them both for being a pain.  I said if my count went up, I would want to try aspirin or go on the TRIOC vaccine trial at UCL.  I explained that a consultant at Ovacome Members’ Day had said it was better to do something, rather than just wait around for the cancer to come back.  No doubt she thinks I’m nuts, as most of them probably do.  Anyway, I was SO relieved the Ca125 was down, even though it was only by 2 points.  Suddenly I’m happy and carefree again!

Tue 2 Sep

St Thomas’s to get bloods. 

Wed 3 Sep

I was in the middle of a dream that I was in bed, feeling distraught about my upcoming blood test result, and crying, when I was woken by the phone ringing.  It was an administrator reminding me to come in for my appointment tomorrow.  I said, “Oh.  That doesn’t sound very good, you don’t usually do that” and she said, “It’s a new thing we’re doing.”  Naturally, I concluded that they have some bad news for me, and I’m furious that they have now fucked up my Wednesday.

Thu 4 Sep

Dr M’s Clinic

Dragged myself into the clinic, seven minutes late.  Pretty soon I was in with the same young Indian woman registrar, Dr G.  She is a very nice person.  The level is back up to 29, from 27 four weeks ago.  She said she is not happy with that, as she would have wanted it to go down to the low 20s, so I have to come back for another blood test in two weeks and have a CT in the interim.  She acknowledged that having more radiation is not good, but that the scan could pick up tumours as small as 0.5mm!  I walked home to burn off some anxiety.  I have been waiting to feel some kind of traumatic response, but I feel strangely numb to it.  In fact, I felt strangely relieved after hearing the result.  I think waiting is by far the worst part, even when the result isn’t good.

I have a plan to apply to the TRIOC vaccine trial, if the ca is back.  Dr G said it would be easy to refer me. 

Also, there’s the five-day fast plan – to starve the ca cells.  This could be done before chemo or I might just try it anyway, if the count goes up again and I’m on ‘watch and wait’.

Dr G said if I need more chemo, it will be Carbogem /Avastin (what I would have hoped for). Thankfully, Gemcitabine only thins the hair, it doesn’t all fall out.  Dr G agreed it’s hard for people to be on watch and wait, because they know that their tumours could be spreading.  If this mental image is intolerable for them, they can choose to start chemo sooner.  However, it’s better to leave it as long as possible, until symptoms become troublesome, because chemo is toxic and because you would be using up your options.

Thu 11 Sep

CT at Guys.

Tue 16 Sep

Dr M rang to say my CT looks OK and I don’t have to have a blood test until the third week in October and we can cancel my appointment on Thursday.  A huge relief!

I looked online for any liver cancer trials.  I could only find eight, and none of them were appropriate.  There was a hopeful-sounding US trial of cowpox vaccine, but the phase II is over, and there doesn’t seem to be anything else happening with it until 2015.  There’s also an immunotherapy trial at Southampton General Hospital, about boosting Natural Killer cells and injecting them back into the patient, but I think they might only be at the stage of learning how to grow the cells in a petri-dish.  I’ve emailed them for information anyway, but I won’t tell Laurie about it unless there’s anything hopeful to tell.

Thu 16 Oct

Dr M’s Clinic

It was a male registrar today.  Ca125 has gone up to 39 L.  He said it could mean the cancer is coming back, but it could still conceivably be a blip and it could still go down again.  I asked him if I could be referred for the TRIOC trial and he said he will ask Dr M and let me know in a day or so.  He said I might be in the placebo arm of the trial – I said I know that.  He said even if I was in the drugs arm, the drug could turn out to be ineffective.  I said I know that too.  I asked his advice about NSAIDs + omeprazole and he said he couldn’t advise for or against as the evidence is anecdotal.  I said I would ask my GP and he seemed silently in favour of me doing that.

M Clinic letter

16 October 2014

It was a pleasure to meet Ms T in clinic today.  She remains systemically well in herself.  Her Ca125 was 39 today and she was understandably anxious about this result.  I did explain to her that her CT scan 1 month ago was entirely normal as she was still asymptomatic.

I did explain the possibility of relapse and furthermore the chemotherapy in this early setting would have no added benefit to treating it when there would be assessable disease.

She informed me about the TRIOC trial which she is keen to try.  I have discussed this trial with Dr M and she feels that Ms T would be a good candidate.

Ms T was also keen to try regular NSAIDS to try to help her situation.  I did again try to explain that there was no evidence to suggest that NSAIDS treat or prevent cancer and that NSAIDS in themselves pose their own risk of heart disease and gastric irritation.

Otherwise the patient was systemically well and on examination there was nil remarkable.  She maintains a performance status of 0.

I would be grateful if Dr M would consider this patient for the TRIOC trial.  In the meantime we will see her again in 6 weeks time with a repeat blood marker.

Dr GB

Clincal Fellow in Medical Oncology

Fri 31 Oct

GP, Dr C – NSAIDS and Omeprazole?

Asked him about taking ibuprofen or aspirin, with omeprazole or ranitidine.  He said I can get Ranitidine over the counter.  Omeprazole is more effective at preventing stomach ulcers, but people are not usually prescribed Omeprazole for taking with aspirin long-term (uh??)   He said if I wanted to, I could come back to him for Omeprazole. He said there is no research on Ibuprofen and I shouldn’t take it if it gives me right upper quadrant pain.  I asked if it sounded like kidney pain but he said it’s more likely to be duodenum.  He recommended aspirin instead of ibuprofen.  He said I don’t need stomach protection for 75mg or even 300mg (really??) just take with food.  He said he was thinking of starting 75mg aspirin a day himself, as there is a history of bowel cancer in his family.  He said soon everyone with a risk of bowel cancer might be routinely prescribed 75mg aspirin a day.  He said I could have a kidney function test, but that idea seemed to get forgotten about - maybe that was just if I were to be taking ibuprofen? Anyway, we decided aspirin would be better.  I told him about the bruising with aspirin, but he didn’t seem bothered about that.  This all seems totally at odds with what the women on Ovacome recommend.

Tue 4 Nov

 Dr A. M, Guildford hospital, TRIOC trial

It was nice going somewhere new on the train.  Got a cab from the station to the hospital.  Had a long wait, but that was OK because I had a book (‘Rendezvous with Rama’.  It’s great).  Chatted briefly with an older woman, who also had OC.  This was her first recurrence after treatment in 2011 and she was waiting for chemo.  She said she felt really rough this time, much worse than the first time.  It was difficult to talk though, as she seemed hard of hearing.

Dr M was nice – a firm hand-shaker!  She didn’t seem to have much emotional intelligence though: she said my Ca125 wasn’t high enough to start the trial – it has to be at least 70 – but hopefully it would be 70 when I came back in two weeks – as if I would be happy for it to go up!  It seems everyone has taken it as read that the cancer is back.  I was actually still clinging to a tiny hope that it could be because of the liposuction. 

I asked if I could take supplements if I was on the trial, and she said not antioxidants, because they protect the cancer cells.  She said it would be ok to take NSAIDs though, and I see why, as people could be taking these for other conditions, like arthritis.  She gave me a sheaf of papers, with all the information about the trial.  At the end, she introduced me to my contact, the trial nurse, who shook my hand in a limp, skin-crawling way.

It was a lovely bus-ride back to the station.  The bus meandered through Guildford University campus, which was very fresh and green, with a lake and outdoor sculptures.  I felt like I was on a mini-break.

Sat 15 Nov

Diarrhoea and stomach pain (been drinking a lot of coffee with soya – could that be why?).

Tue 18 Nov

Ca125 up to 42

Call from Dr M’s office, to say that she has deferred my appointment until 9^th December because my Ca125 is still too low to start the trial.  The woman said ‘hopefully’ it will be up to 70 by then – again - like I want it to go up!!  Apparently it’s up to 42 now.  That’s it then, I can’t really kid myself any more that the cancer’s not back.

Thu 27 Nov

Dr M’s clinic

Saw the same male registrar as last time.  My Ca125 is now 68.  I wasn’t even surprised.  He prodded my abdomen and thought the right, upper quadrant pain was most likely to be adhesions.  He also thought the upper chest pain (hurts every time I laugh) was most likely to be a pulled muscle, as I don’t have symptoms to suggest pleural effusions (which would be breathlessness).

Dr M Clinic letter

27 November 2014

Current situation: Plan for the TRIOC trial awaiting Ca125 to reach cut-off of 70

Ca125 today 68

Due to see TRIOC trial team next week

It was a pleasure to meet Ms T in clinic today.  She remains clinically well with a performance status of zero.  She has complained of occasional right pectoral pain which seems muscular in nature. She has also complained of occasional right-sided abdominal pain which seems to come and go which I wonder whether it is scar related.  She remains otherwise systemically well.

On examination today, her chest was clear and her heart sounds were normal.  Her abdomen was soft and non-tender and there was no pain elicited.  There were no abnormal lymph nodes felt on palpation.

The patient has explained to me that she is keen to take non-steroidals and Omeprazole as she has anecdotal evidence that this may help.  I have explained that no studies have shown this benefit.  I also appreciate that she is taking aspirin for a similar reason at this point in time.

Given the rise in Ca125, it is likely that Ms T will be eligible for the TRIOC trial.  However, I have arranged for a routine follow-up with us in 3 months time though she is welcome to come back earlier if she becomes symptomatic.

Dr GB

Clinical Fellow in Medical Ondology

Thu 4 Dec

GP appointment with Dr McK 
He agreed to prescribe Omeprazole, so I could take it with Ibuprofen.  I said if my stomach starts to hurt, I will stop.  I told him I was feeling light-headed and he took my blood pressure.  It was only 109 / 54.  He said it was probably because I wasn’t eating enough.  He said people have a worse prognosis if they are underweight.  I’ve only lost 2 lbs though.

Tue 9 Dec

Guildford Hospital

Two hours there and two hours back, just to get another blood test!  Dr M couldn’t start me on the trial because my Ca125 was still under 70 two weeks ago.   She said it could still go down again (if only!! ) She prodded my stomach a bit and said she couldn’t feel anything.

I asked if I would still be able to take part if there was something visible on the scan.  She said if it was just one lymph node, then yes, but if it was more serious – like attacking the bowel for example, and I had to start chemo again, then no.

I got another blood test done, and Dr M is going to phone me when the result is ready.  Then I have to go back the following week to sign the consent and get booked for scans – unless she can get me transferred to UCL, as their trial is just about to start.

Wed 10 Dec

Ca125 result

Dr M phoned to say my Ca125 is now 67, so I still can’t be started on the trial. She said I would have to come back in four weeks for a repeat test.  I’m so pleased it went down one point!  She said sometimes, “the immune system kicks in” or it could be because the cause is something else and not a recurrence (if only).