Cancer Diary 2012

GINA’S OVARIAN CANCER DIARY

DIARY 2012

Tue 3 Apr

Abdominal cramps that lasted all day and night.  Didn’t go to work.

Wed 4 Apr

A&E

R and I waited for two hours at the GP emergency walk-in clinic, as I couldn’t wait five days for an appointment.  Saw Dr S, who prodded my abdomen and found a lump.    He told me to go to A&E and gave me a letter to take with me.  It said: ‘tender craggy mass arising out of the pelvis approx 20 weeks size I am concerned to rule out ovarian or uterine malignancy ...’

Ronnie and I waited for six hours in A&E, and finally I got seen.  They said I had to stay overnight so I could have an ultrasound in the morning, as it was too late to arrange one that night.  I spent the night on Katherine Monk Ward, listening to some lady snoring nearby.  They insisted I keep the needle thing in my arm.  They give you supplies, like a disposable toothbrush, toothpaste and a nightie. 

Thu 5 Apr

First ultrasound

I got coffee and toast for breakfast, while I waited for the ultrasound, but one coffee wasn’t enough, and I couldn’t do a no.2.  At least I didn’t need to have a full bladder for a transvaginal ultrasound.  A woman doctor came by and felt my abdomen.  She said, ‘I think this is just a fibroid uterus,’ and I said, ‘I hope so.’ 

The lady who did the scan couldn’t see my ovaries at all, so she tried scanning over my abdomen, but still couldn’t see them.  Her ultrasound report says:

CRP 83 WCC 6.  Normal retroverted uterus.  No uterine anomalies.  Endometrium clearly visualised, thickness (total) 4.3mm, structure: normal, endometrial cavity: regular.  Pouch of Douglas: no free fluid seen.  Right ovary not visible.  Left ovary not visible.  Abnormalities:

1.  115mm x 62mm x 59mm, volume 220ml Origin: right adnexa.  Internal structure: multilocular with solid component, septa: thin, echognicity: mixed, wall thickness: irregular.  The lesion is moderately vascular.

2.  49mm x 37mm x 31mm volume 29ml Origin: left adnexa.  Internal structure: solid, septa: none seen, echogenicity: mixed, wall thickness: irregular.  The lesion is poorly vascularised.

I asked the young male doc who discharged me if there was any chance it wasn’t cancer.  I had to ask, even though no-one had used the word, as all their faces seemed to be saying they thought I was a hopeless case.  He said these things could be benign or they could be infective processes, but I knew he thought it was cancer, and that he thought my question was stupid/deluded.  They told me I would be seeing the Gynae consultant, Miss R, within two weeks but for now I could go home and ‘spend time with my family’ over the bank holiday weekend, which convinced me that they expected me to be dead pretty soon.

Tues 24 Apr

Second ultrasound

My appointment with Miss R was actually 18 days later, which gave me plenty of time to stress about the lumps and try to prepare myself for imminent death.  The appointment was in the EPAGAU (early pregnancy and gynaecology assessment unit) at Kings.  There were a couple of young pregnant women in the waiting room, and the sick irony of my own ‘20-week’ lump didn’t escape me,  nor the thought that I was being punished by some higher power or by my own conscience for having had two abortions.

Miss R did another TV ultrasound, and seemed very masterful at it.  I asked her questions as she scanned, but can’t remember all her answers now.  I think she said the larger lump was coming off the right ovary and going across the front of my uterus.  She couldn’t see anything on my liver.  After the scan, I asked her questions from a list I’d compiled beforehand.  She said she was concerned that it looked like cancer.  I asked if I would have to have my uterus and cervix removed and she said it’s best to remove them.  I asked if it would affect my sex life.  She said a hysterectomy causes a slightly drier vagina L. She said the surgeon would be Mr X at St Thomas’s.  Chemo is at Guy’s.  I asked her what stage it might be, and she said it could conceivably be stage II (contained within the ovary???) as they can grow huge.  I don’t see how it could be contained though.  She said I would get a CT scan next, within two weeks.  I asked her if I could get a CT sooner if I paid privately (can’t bear the waiting) and she said if I wanted, she could refer me, but she didn’t think it would be much sooner.

I don’t have a report from Miss R.  Should I have one?  Must ask for a copy.

Tue 8 May

First CT

I decided not to have a private scan, as I didn’t want to throw a spanner in the works, and I ended up enduring a 14-day wait for my NHS one, at Kings.  I hate the thought of being blasted with radiation.  I had to lie on the machine slab and I assume radiation beamed into my abdomen and pelvis from a semi-circular machine above.  A young Antipodean radiographer first injected contrast into my arm, which causes a brief sensation of heat in the body after a minute or two.  The scanner is silent, except for a recorded voice that says, ‘breath in’ before the scan, then, ‘breath normally’ afterwards.  I had to hold my breath twice.  I haven’t seen a report of the scan yet.

Wed 9 May

First appointment with Mr L

Every Wednesday morning they have an MDM (multi disciplinary meeting) at St T’s and I had an appointment with one of the surgeons, Mr L (not Mr X after all) on Wednesday afternoon, the day after my CT scan.  R came with me, as he has to all the appointments.  These appointments seem to be progressively more distressing and this was the worst so far.  Mr L has grey hair and kind eyes. He said the CT was fuzzy and uninformative and that they had been disappointed with it at the MDM.  I think he said they couldn’t tell whether the masses originated from the ovaries or the bowel or somewhere else.  One mass is filling my Pouch of Douglas (the space between the back of the uterus and the front of the rectum).  He said my bladder, uterus and vagina looked fine. 

I asked if I should have another CT, to get more information, but he said it would be best to have a biopsy on Monday and not delay things by getting another CT.  I was alarmed by the prospect of a biopsy, as I’ve read online that they can ‘seed’ cancer cells along the needle track (this happened to John Diamond) and disrupt the tumour, spreading cancer cells around the body.  He was suggesting a biopsy via my vaginal vault, into the Pouch of Douglas.  I asked if this could track cancer cells into my vaginal vault and he said, ‘yes’, but that it wouldn’t matter, as they would be removing my uterus and cervix and the vaginal vault would be removed along with them.  I found this extremely alarming, and why would they be removing my uterus and cervix anyway, if it turned out to be bowel cancer?  He said there may be something on my omentum also, but this could be artefact on the CT!  He said they could take a biopsy from my omentum, instead of via my vaginal vault, which would be a great relief except that, if there is cancer on my omentum, it means it has spread.

All along, I had got the impression that a biopsy is only necessary if they have to start with chemo, and they only start with chemo when initial surgery to remove the tumour in one piece isn’t possible.  I told Mr L I thought the point of the CT was to see exactly where the mass was coming from, what it was attached to and whether surgery was possible first off.  I wondered if they could be discounting surgery because they didn’t have sufficient information from the CT.  How did they know surgery wasn’t possible, if the CT was unclear?  None of his responses clarified this for me.  He also said they couldn’t advocate surgery before taking a biopsy because it might be bowel cancer, which would require referral to the Colorectal surgeons.

He drew me a diagram, showing the position of the Pouch of Douglas, and the mass which has tipped over into it.  He said he could establish whether or not the mass was attached in the Pouch of Douglas, by doing an internal exam right now, which he did.  He poked his finger into my vaginal vault and said, ‘Does that hurt?’  It did.  He still couldn’t tell however.  He said he couldn’t move the mass but he couldn’t tell if it was attached or just ‘wedged in’.  I think the idea was that if it wasn’t attached to the rectum, then it was not likely to be bowel cancer.  I think they are confused because I don’t have any bowel symptoms, but the mass isn’t a typical presentation for ovarian cancer either.

He tried to reassure me that their plan was in my best interest, and they wouldn’t suggest anything that was not.  Part way through the appointment, he brought in the Clinical Nurse Specialist, MB, who was a fuzzy duvet of sympathy and support.  I couldn’t appreciate her concern though, because I desperately wanted hard information from Mr L, and she was using up my precious consultation time.  Maybe Mr L brought her in as a buffer, to avoid my questions.  It was a good thing R was there, being polite to everyone, as I was too distraught to attempt any charm.

They have given me a list of contact details, entitled, ‘Your gynaecological cancer team’, which seems odd because I haven’t officially been diagnosed with cancer yet.

At home after the appointment I was emotionally exhausted and angry about the rubbish CT and the lack of information.  It had been over five weeks and I still didn’t know what was growing in there, where it was coming from or what was going to be done about it.  I Googled a bit on bowel cancer, and horrified myself reading about colostomy bags and surgical damage to sexual nerves.

Later, R and I were talking about holidays (our trip to Lisbon in the first week of June looks unlikely now ...) and I realised that I will probably never make it to India, because the rest of my miserable days will be spent sitting in hospitals with needles in my arms, bald and sick.  Paroxysms of tears.  Poor R, having to endure all this misery with me.

Mr L’s clinic letter

‘... In my opinion the CT scanning was not particularly helpful apart from to demonstrate a pelvic mass and probably an omental lesion.

When I saw Miss T in clinic she was a little unsure as to what was occurring (like I’m some kind of confused old dear!) and she reluctantly allowed me to examine he (I wasn’t reluctant!)  She appeared to have a fixed pelvic mass which appears solid.

The imaging, the examination and also the tumour markers so far are not indicative of an advanced ovarian cancer and did not indicate as to whether the disease is operable.  I have therefore arranged for her to have an image guided biopsy so that we can determine what the appropriate treatment will be and I hope this will be carried out over the next few days so that we can review her in the MDT next week ...’

Thu 10 May

I phoned Clinical Nurse Specialist RB to try to persuade her to refer me for a private CT - or MRI of the bowel or any other conceivable means to establish what was going on without having the biopsy on Monday.  She fielded my arguments for a while but in the end we hit a wall, and she agreed to ask Mr X to call me back.

Mr X called me back later that afternoon.  He began by saying he could only speak briefly because he was on his way to theatre.  He said a biopsy is necessary whether the surgery or chemo comes first, which was news to me, as everyone else has said it is only necessary if they decide to begin with chemo instead of surgery.  He also said, even with perfect CT scans, 30% of them are inconclusive.  When I asked about the biopsy tracking cells into the vaginal vault, he said, ‘that never happens’. It seemed certain that Mr X was not going to refer me for a CT, so I caved in, but I didn’t really believe him.  I thought he was saying whatever was necessary to get me to go along with the plan.  My only comfort was that Mr L too had insisted it was for the best.

I have been dealing with this for the last five weeks by only thinking about cancer when absolutely necessary, ie just before an appointment, when hours of Googling are required to arm myself with information and questions.  The rest of the time R and I have been making movies and having fun.  Also, I haven’t told anyone, except J at work because I had to, and that way I don’t have to speak to anyone about it.  R has told everyone he knows, it seems, including 79 people on Facebook, and some of his family have been praying for me!  Maybe the praying will actually help, but I hope S and G don’t starve themselves by fasting.

Each time there is an appointment I have to confront it full on, and the appointment with Mr L was the worst so far.  I feel certain the biopsy will spread the cancer and I will die, or I will have bowel surgery and it will destroy my sex life and I will have to kill myself, so either way I will die before I achieve anything in life.

Mon 14 May

The biopsy:

The nurse had trouble taking blood from my arm and after three painful attempts I had tears in my eyes.  Then, a young doctor came to the rescue and stuck the needle in expertly.  My scan was supposed to be CT guided, especially as the initial CT had been useless, but the scanner was busy, and the young doc did it with ultrasound after all.  He injected me with local anaesthetic and then made a hole with his biopsy needle.  He nicked out three pieces of tissue, in turn.  It was quite sore for several days afterwards, and I thought my abdomen looked even fatter than usual.

Wed 23 May

Clinic appointment /biopsy result

A surreal occasion: beautiful, wacky registrar, Dr O, preceded R and I to the consulting room with a sexy sauntering gait, then as she informed me that I have grade 3C ovarian cancer and that everyone who has it eventually dies of it, she seemed almost gleeful, kind of on the verge of chuckling – it was quite bizarre - maybe handing out death sentences to people all day has driven her crazy.  R asked how long I would survive without treatment, and she said about a year.  Later, R told me that as she left she gave him a big wink.  

Next we saw the consultant, Dr M, who was kinder.  She seemed to allow that there was some hope I could live for five years, if I was lucky.  Neither of them denied the stats I had read online, that for people in age group 50-59 with grade 3C ovarian cancer, only 20% make it to five years.

It was confirmation of the worst case scenario.  Earlier that day, I’d been fantasising that it would turn out to be some kind of crazy, benign growth, and I saw myself telling everyone the story of how scared I had been.   It was totally shattering, but I seemed to have exhausted all the tears over the last few weeks.  Only R welled up a bit at the consultation.

We went and had a Starbucks, then walked home. 

I had been given another sheaf of cancer paperwork at my consultation, by a weary-looking nurse specialist, which I stuffed into the carrier bag full that I already have (R had sent off for a truck load from Macmillian).  I don’t want to look at them.  Already, I’m so sick of thinking about cancer, but there’s a lot more to go yet.

Wed 30 May

GFR study: this was a blood test for kidney function, prior to starting chemo.

Sat 9 Jun

Pre-chemo session.  Basically a long chat about the effects of chemo.  You have to give your consent.

Mon 11 Jun

First chemo

Up to the 10^th floor of Guy’s Tower with Ronnie.  We brought supplies – cheese sandwiches and a blanket.  There was an hour’s delay and it turned out that the nurses were having trouble persuading a guy not to take any more snake venom for his throat cancer, and he was holding up my lounger chair.  We worked out how to use the hot drinks machine, and established that some pieces of fruit were free for the patients, and I tried to guess who was a patient and who were family members, in the waiting area with us.

In my lounger at last, with a refrigerated cap on, which is supposed to help stop my hair falling out.  This is on for an hour before the treatment starts.  Then I get some IV antihistamine (Piriton) and steroids and then I’m finally connected to TREATMENT – at long last.  Cytotoxic chemicals through a needle in my forearm. First Paclitaxel for three hours – this is the one responsible for hair loss- then Carboplatin for an hour. 

The snake venom guy, a Scotsman, is very brash and talkative.  He wants to be the centre of attention.  His humour is directed at all around him and verges on obnoxious.  He has a quieter friend with him.  There are four loungers in our little bay (Bay C).  In another corner is a young Indian girl, who has had brain cancer and has been subjected to radiotherapy to the head, and judging by the scars, some brain surgery too.  Her mother and brother are with her, and they share food with each other, and banter with the Scotsman and his friend.  In the third corner is a middle-aged man, who does not speak to anyone, and who ignores me when I try to engage him in conversation.

The Scotsman has just come back from Cuba (I think he has a Cuban wife and kids in London) and is brandishing a box of Cuban cigars.  I wondered if the cigars had contributed to his cancer.  It was discovered because of a swelling on his neck and they found a pea-sized tumour at the back of his tongue.  He can’t see it or feel it.  He is very worried about having radiotherapy, which I think he said would affect his jaw muscles.

They gave me a three-day supply of steroids and anti-sickness pills to take home.  The cold cap wasn’t so bad.  They say it doesn’t always work though.

I felt pretty sick at 5.30 the next morning, but the sickness pills sorted that out.  By the second day I was full of steroid-induced energy – quite buzzing with it actually.  By Thursday, constipation was beginning to give me guts-ache (I’d had to use emergency pessaries every morning since the treatment) and by Thursday night, when I came over to R’s it was really uncomfortable/painful.  Spent Friday morning, from 5am onwards, trying to empty my bowels.  Later R went to the shops for prune juice and lentil curry.  I hope I can go properly tomorrow, so we can do some filming and have fun.

I ordered four chemo head scarves, and some probiotic mouth lozenges, which got delivered to R’s today.  Two of the headscarves were ok, and two were ugly (a black one which makes me look like a nun and a blue one which makes my head look the size of a pea).  My hair may not fall out for 2 – 4 weeks, or it may just get thinner if the cold cap works, but I want to be prepared.

Sat 16 Jun

R has gone out to meet C in town, no doubt relieved to escape from my evil and lingering curry-farts, which have been continuous since yesterday.  I’m repulsive!  At least I managed a bowel movement this morning, after getting up at 4.30am to begin the attempt.

Later: Saturday night turned out to be the worst time so far, the farts continued throughout the night, and were so foul that I had to run to the toilet each time for fear of gassing R.  Even so, the vile gas somehow pervaded the flat, and eventually R had to go and sleep on the sofa.  The farts were not all though, my whole body HURT – I’ve never experienced such misery, and I felt like it would be a pleasant relief to die. 

On Sunday there was an improvement.  Firstly, a great dump, like atomic bombs, secondly, the all-over pain became less intense and more localised: aching knees, shooting pains down my calves, pains in the kidneys and abdomen, pains in the neck and chest and a headache.  The farting also died down a bit, probably because we didn’t eat curry today.  They came back in the evening, but I think R’s charcoal tablets helped tone them down.  No one mentioned this farting thing at the hospital, but it seems likely that if one’s whole body is infused with chemo for four hours, it might mess up the digestive system.

Mon 18 Jun

Another great bowel movement this morning!  Also aches and pains reducing.   There was a moment today, when I laid on the bed and actually felt comfortable – a great feeling.

Went for a walk with R today, to get cash out and get some fresh air, but ended up walking to Canary Wharf and trying on dresses for two hours.  Found a couple I liked, but didn’t buy them as the elasticated waists showed up how bulging my pot belly looks now.  I’m sure the f*cking tumours are getting bigger, instead of shrinking.

Fri 29 Jun

Dr M clinic appt

Saw Dr M at Guy’s yesterday, but I don’t want to think about it, as, like all the doctors, she only has depressing news for me.  I tried to get her to explain exactly what is going on in my abdomen, and it seems that she thinks there are likely to be ‘grains of rice’ – microscopic disease - all around my abdomen (peritoneum), as this is what happens with most people.  I asked how she knew it had spread all around my abdomen and she said they could tell from the CT (I thought the CT was meant to be almost unreadable…) I asked whether the masses were on my omentum, which is removable, or on the peritoneum, which is not removable, but again it won’t be clear until they open me up.

My appointment with Dr M was delayed by two hours, so I missed my ‘Headstrong’ session, where I would have learnt all about tying headscarves.  I did manage to squeeze in some time for a wig-fitting though, and got a lovely long, dark blonde wig.  It has to be trimmed next week, because it is ridiculously long and luxurious for someone my age.

I’ve been feeling completely back to normal this week (no farts, no aches and pains).  Even my stomach doesn’t seem quite so enormous today.  When Dr M prodded my belly yesterday, she said she couldn’t feel anything and said she had ‘a good feeling’ about it.  Perhaps a tiny glimmer of hope?  I asked her about the possibility of taking HRT again in future, as I didn’t want osteoporosis, but she said she was more concerned for my life right now.  I asked if I could use vaginal oestrogen cream, as one of the reasons for taking HRT in the first place had been because of getting sore during intercourse (and the disgusting bacterial vaginosis outbreaks).  She said we could think about using it if the symptoms came back, but not as a preventative, which I guess is reasonable.

Headstrong

After Dr M, I went up to the 10^th floor of the Tower Block, to the Cancer Day Unit, and bumped into JT in the lift.  I was a bit thrown, as I was freshly traumatised by the latest disease update from Dr M, but I think I managed to be friendly enough.  J asked me if I was back working at St Thomas’s and I said, ‘No, I’m a patient’ (showing her the plaster where the nurse had just taken blood from my arm).  We were both on our way to the Cancer Day Unit, so now J knows that I have cancer.  She told me that LW (who also used to work with us) has cancer too – breast cancer - and is having a really hard time.  I think I might phone LW.

I found two women packing things up after the Headstrong session that I’d missed.  They were ok about me missing the session and said I’d probably had an exhausting day.  As soon as they offered this crumb of sympathy, I found myself smothering back tears.  They said they’d both had breast cancer, so they understood.  I told them I had been fine until I spoke to the doctor, but that the doctors keep telling me I’m going to die. They made me a new appointment anyway.  Strange, but even though they had both survived cancer, and had probably had the fear of death put in them by the doctors at some point, I don’t feel I can really connect with someone who is over it now, and not being told they might die every other week.  It still seems very unreal, as I don’t feel ill at all as I write this.  But it is real of course.  I even put on a couple of pounds since the chemo, which must be because the chemo is killing the cancer.

Big hanks of hair came out when I washed my hair this morning.  R and I stared at it in horror.  Amazingly though, no bald areas have appeared yet.  R chopped about three inches off what was left, and right now it actually looks quite healthy and full.  I must have a lot more hairs on my head than seems feasible.  I wonder if I will make it to the chemo on Monday with enough hair to wear the refrigerated gnome’s hat again?

Fri 6 Jul

Second chemo

Had the second chemo round on Monday.  Couldn’t wear the hat as it was too cold this time, I guess because I have a lot less hair.  I tried for an hour, but it was hell, felt like my brain was frozen, so I gave up.

There was a woman, K, in the next lounger, who had been battling ovarian cancer (3c) for four years.  She had recently had a permanent metal stent put into her bowel, to open up a blockage where the tumour was pressing on it.   She seems amazingly strong and serene.  A young Turkish woman came by to talk to her – they were old chemo comrades – and she was a six-year survivor.  She looks remarkably healthy.  It must help to be a Muslim and wear head scarves, as you would never know she had hair loss.  She was very positive and inspiring.  Her husband left her when the cancer started, but she has an eight-year-old daughter, and I guess that is a big reason to fight.  The doctors originally told her she didn’t have long, and to get her affairs in order, but she is still here.  She said she is in the ‘Last Chance Saloon’ now, which means taking up the offer of any research trial going.  She has peripheral neuropathy in her feet now (they get cold) but her hands are ok.

Also saw the Scottish guy briefly, as he was in the adjoining chemo lounge.  He is going to have radiotherapy soon and is dreading it.  I said maybe it won’t be as bad as they say – the chemo isn’t that bad after all.  But he assured me that the doctors had been honest – after the radiotherapy he wouldn’t be able to swallow for (did he say six days or six weeks?) and would have to be fed through a drip.  It does sound truly grim.

Feeling a bit more tired after the second session.  This must be the cumulative effect they warn of.  Took the steroids in the three days, as prescribed, this time, instead of phasing them out, so we’ll see how dreadful I feel tonight.  Maybe the worst will be over by Saturday?  No wind or abdominal pains at all so far this time, but I’m starting to ache all 

over, especially my knees.

Had a visit from L and S yesterday (they brought flowers and a get well card from work) and we went for a walk to St katherine’s Dock and the riverside with R.  It was great to see them but it’s so strange to be a ‘sick person’ that people come on a special visit to see.  I would rather things were normal.  It was good talking to L though, as she has been through breast cancer.

Also had a long conversation with Laurie on the phone the other day – first long phone call in years actually.  He is suffering a lot on his HCV medication, so we had a lot of empathy.  F*ck - my whole life seems to be about being ill at the moment, it’s the only thing I talk about!

Sun 8 Jul

R has gone to the movies with H but I wasn’t interested in seeing Spider-man.  Also, not sure how keen I am to be on display in front of H.  I don’t really have the wig situation sorted out yet.  Woke up with a sore throat today, which is fairly miserable, but the aching legs are not so bad as yesterday.  Felt really ill and low yesterday, I guess that was the worst day – Saturday – like last time.  It doesn’t seem to matter if I take the steroids differently or not.  Watching Murray at Wimbledon on TV.  Passive watching of sport is all I am capable of today.

Mon 9 Jul

Aching legs a lot better.  Horrid sore throat when I woke up, but that seems to be improving a bit.  I want to start my novel, but I’m wondering if it would be a bad thing to start it when I’m feeling off colour, or am I just making more excuses?

Thu 19 Jul

Dr M Clinic

Saw Dr M. She is very friendly.  She told me I would be seen after the MDM on Wednesday 8^th August, and that I would get a CT appointment before that.  I asked her about the weird tube shape on my upper abdomen, whether it could be anything to do with the lump they saw on my omentum, but she couldn’t see anything as I was laying on the couch. She thinks it’s just my rectus abdominis muscle.  I’m sure there is something weird about it though.  I told her I felt short of breath this week, same as after the last round of chemo.  She thinks it’s just anaemia.  I asked how they know it’s stage III, not stage IV, and she said the CT had included my lungs, which is the first I heard of it (I think I should ask to see this scan – maybe when they have done the next one, to compare them).

Afterwards, I finally got to see the Headstrong ladies, and had an hour of trying on hats and scarves.  They were lovely of course, and I did my best to be appropriately grateful and gregarious, but I felt exhausted and really just wanted to get home.

Mon 23 Jul

Third chemo

Aggravation in the morning as I had to come in at 9:30am for a repeat blood test, as my white cell count was low on Thursday’s blood test.  This morning it was borderline and I had to wait for a doctor to say whether I could go ahead with the chemo today or whether it would have to be delayed by a week.  I was very keen to go ahead today, as I assume the tumours start growing again if you leave it too long??  Luckily they said yes, so I had the chemo. 

The nurse who came to attach me up was surprised that I still had some hair.  There was no-one chatty in my lounge today.  There was a middle aged man working on his Macbook Air and following the cricket scores.  I tried to draw him out, admiring his Macbook, but he wouldn’t be drawn.  There was another middle-aged man who just slept and looked ill.  Later, a middle-aged black woman came in and only had a brief treatment session.  She seemed to have a line directly into her right chest - does that mean she has breast cancer?  We didn’t speak, but she smiled at me when she left, and said goodbye.  A younger black woman with a little girl also came in, and had the same treatment as the other black woman, direct line into the breast area.  She didn’t speak to anyone either, except to her little girl.

When R went off for a walk and to get supplies, the Scottish guy passed by (he was in an adjoining lounge – I could hear him holding forth with the ladies in there for hours) and came over to speak to me.  He said his first radiotherapy is today, after the chemo.  His cancer of the tongue is classed as skin cancer, not throat cancer and it has an 85% clear-up rate (lucky him).  On the other hand, he was told that the 15% who have a recurrence could be dead within a week!  He said they have to give radiotherapy to a wide area around the tumour, to make sure they get it all (he gave an analogy of dropping some coffee into a bowel of sugar – you would scoop out all the stained sugar, not just the main bit in the middle).  He said he didn’t care if they took out his whole tongue as long as they got it all – he would just write messages on paper instead.  They removed nine of his teeth, because infections can cause problems during the treatment he’s having.  He also said he has never smoked.

Thu 26 Jul

Woke up about 3:30am and feeling nauseous by 5:30am.  Took a couple of Domperidone but they didn’t work, and I was throwing up by 6am (threw up four times).  I also had excruciating abdominal cramps from taking two Senokot last night (never again!) R had to call an ambulance, to take us to Royal London A&E. When the ambulance men came in, I was throwing up in a bucket, with no wig on, but I felt so wretched that I was beyond caring what I looked like.  I felt like I really became a ‘cancer patient’ today. One of the ambulance men put a canula in my arm and some IV antiemetic, which seemed to start helping after about 10 minutes. The other, younger, ambulance man told R the story of his mother, who’d had breast cancer twice, and a double mastectomy.  It had come back again, and she had declined any more chemo. 

At the hospital, they did a blood test to check sodium I think they said, and then I was given a fluid drip for half an hour.  My white cell count is back up (apparently it fluctuates daily while you are on chemo).  I was anxious to get out of the hospital as soon as I stopped feeling too sick, but the Doc wanted to finish the whole bag of fluids and do things properly.  I felt quite trapped, with the line in my arm, although you would think I would be ok with that after dealing with three four-hour chemo sessions.  I haven’t felt that uncomfortably trapped since I had agoraphobia, maybe this is all getting to be a bit much.  The A&E was a new building and it was freezing in there. R got them to bring me two blankets, but I couldn’t stop shivering.  Finally a doctor came in and poked my stomach a bit.  He asked me to relax, but it was difficult as I was bloated and in pain.  He decided to send me for an x-ray, in case I had an obstruction, but I thought that was crazy as I knew I just needed to go to the loo, and couldn’t wait to get home.  As it happened, as soon as he left, I had to rush to the loo with diarrhoea (unheard of for me!) so I told a nurse there was no way it could be an obstruction, and she told the doc, and the x-ray was cancelled.  I was given a prescription for some Ondansetron (antiemetic) and finally allowed to go. 

3^rd chemo - daily symptom diary:

Mon: tired; can’t taste salt in food, coffee tastes like an ashtray.

Tue: slight nausea before taking antiemetics.  After steroids: red face, indigestion, hiccups.

Wed: Nausea; headache (could be the hot weather); bitey pains in abdomen; bloated.

Thu: vomiting (four times) ambulance to A&E for fluid drip and extra antiemetics.

Fri: terrible pains all over, especially legs, knees, feet.  Depressed (cried).         

Sat: sore throat; numbness at tips of fingers.

Sun: sore throat all day, worse as day went on (phoned oncology registrar for advice: take temperature first, then paracetamol, gargle with aspirin, take Neurofen if paracetamol doesn’t work).  Numb thumb and finger tips on right hand; arms feel weak.

Mon: throat still rough; coughing; runny nose; slight nausea; numb thumb and fingertips, skin feels sore especially round lower face and neck.

Tue: relentless chesty cough; numb thumb/fingertips; sinusitis on left side; several tiny red ‘blisters’ up back of legs.

Wed: coughing; slight nausea.

Thu: coughing; streaming nose (used Otrivine nasal spray to dry up nose, still coughing).

Fri: feeling better.

Sat – Mon: Catarrh, remains of cough.

Mon 30 Jul

Second CT scan:

Written in retrospect, so can’t remember much about this, except that I had to drink a huge jug of water that looked like soapy washing up liquid.  It turned out to be flavoured with aniseed – yaaaaarrchhh!  The lady sitting next to me with her husband said you just had to ‘get it down’ (ok for her - she likes the taste of aniseed).  She said ‘think of it as Pernod’, but the very thought makes me want to vomit.  Had a nice moment helping her to adjust her gown later, which had a string missing.  There’s nothing so comforting as talking to other patients.  She said she’d had Hodgkins lymphoma which had been in her bladder and they couldn’t remove it. She said it was like sponge, and if they had operated it would have burst?  Or spread?  It had disappeared with chemo, but she said it would probably come back.  It was just a matter of when.  I told her about Michael C Hall in Dexter, who had made a total recovery from Hodgkins.  She hadn’t seen Dexter though.

Thu 9 Aug

Dr M/Mr L

R came with me.  We saw Dr M first, then Mr L.  Dr M was lovely as usual - I like the way she warmly shakes hands.  Can’t remember much about what she said, as I haven’t written this diary for ages.

Mr L said he would have brought the surgery consent forms with him, for me to sign today, but then he remembered who I was!!  When he said this, I glanced at R in alarm, and Mr L qualified it with, ‘I don’t mean anything disparaging by that’.  He said he would give me some time to consider giving consent, and we made another appointment for 29^th August.  I suppose that was good of him to give me time, but I’m worried, as I think he sees me as a difficult patient.  When I saw Dr M again after he left, she told me he is ‘very good’, trying to reassure me I suppose.

The Shaggy Dog

Mr L drew me a diagram of the possible resection of my rectum – a big line across the top and bottom of it!  He said that 1% of patients getting this surgery need rectal resection and a colostomy.  Of those who get a colostomy, 50% will be able to have this reversed.  They wait six months after surgery before considering reconnecting you because they have to see whether any cancer has spread into neighbouring tissues.  Mr L said he prefers his own ‘shaggy dog’ analogy to the ‘grains of rice’ one.  He said the tumour is like a shaggy dog, and if it shakes drops of water out of its wet hair, it spreads the tumour into the surrounding tissues (I think). 

Mon 13 Aug

Fourth chemo cancelled due to low white cell count.  They were going to delay until next Monday, but agreed to let me come in again this Friday because I asked.

Later at R’s, while he was out, I gave myself an internal exam.  I felt inside my bowel to see if I could tell if the tumour in my Pouch of Douglas was fixed or moveable, but now I’m not really sure what I was poking – maybe the hard thing was just my cervix, through the anterior wall of my rectum.  I also poked around inside my vaginal vault, and felt an odd piece of flesh tucked up behind my cervix.  This was NOT there before! Now I’m 100 times more terrified – obviously the cancer has spread into my vaginal vault!?  I think this part will be removed when Mr L removes my cervix, but it’s terrifying to thinks that it could have spread since Mr L last examined me, and that it could have spread despite the chemo.   I phoned MacMillan but it was a bad line, and they accidentally connected me to the wrong speciality nurse.  They all have to tell you to accept all kinds of surgery anyway, as they can’t tell you to choose death.

After MacMillan, I phoned MB, at Guy’s, and admitted my fear that Mr L thinks I’m mad.  She didn’t think that was the case, but I got her to promise not to say anything to him.  I told her about the piece of flesh I’d found in the top of my vagina, and how scared I am and she said she would ask Mr L to give me an internal exam when I see him on the 29^th.  Ironic really, as he wrote in my clinic letter that I had ‘reluctantly agreed’ to a physical exam last time – maybe he will think I’m just trying to prove I’m not reluctant!  My relationship with him doesn’t seem to be going very well, which is causing me much anxiety, considering that he will be cutting me open soon.

MB said she would call me back after she’d spoken to Mr L, because I wanted to know if the delay in chemo would mean my surgery would also be delayed.

After the phone calls, I Googled suicide methods.  Apparently, if you take tablets, and someone saves you, it is possible to end up with brain damage.  I think my preferred option would be to drive off Beachy Head with another woman, like in Thelma and Louise (I would have to find a woman in my situation, who had a car, as I can’t drive and don’t have a car). Maybe we could even go a bit crazy and get drunk and have fun beforehand!  Failing this, I would have to just jump off on my own.  That would be really hard, but not so awful as gas, drowning, hanging or pills.  I don’t like the idea of a gun either, because you have to find some lowlife to sell you one, and then your brain is splattered all over.  I suppose it would be with the Beachy Head idea too, but maybe not as bad.

Tue 14 Aug

MB called back to say Mr L did not think my surgery would be delayed.

Fri 17 Aug

Fourth chemo

Fourth chemo went ahead.  Two women in the lounge who had managed to keep most of their hair by using the cold cap – lucky things!  K was in another bay and I went and talked to her for a while.  I told her I have to decide whether to give my consent re the possibility of rectal resection and colostomy bag, and she said to say yes to everything, as the alternative is death!  She also told me that she spoke to a woman whose leg(s) were now swollen because of having lymph nodes removed.  K did not have to have any removed herself.  I asked her who her surgeon had been, but she couldn’t remember his name just then.  I think Mr L told me he would be removing lymph nodes, but he didn’t mention this danger of lymphedema afterwards ..  so many questions … what is my priority?  a) to live as long as possible and try to write my novel or b) to enjoy the remainder of my time as much as possible – i.e. by not having to be shackled with a colostomy bag and surgical stockings.  How much repulsiveness could R take?  Would I be too lonely to write my novel if he left me?

Sun 19 Aug

I have been compiling a list of questions for Mr L, for when I see him on the 29^th, about the implications of consenting to possible rectal resection (and lymph node removal). I feel like a computer that has been fed an impossible conundrum, and my circuits are about to explode.  Both choices are really bad.  What if surgeons choose to err on the side of caution by taking out everything they can lay their hands on, so that their survival stats look good?  What if giving consent means they will remove things that could actually have been left alone? Do they care about quality of life after the surgery?  If the cancer nearly always comes back and eventually surgery is no longer possible, isn’t it preferable to reach that stage without having to deal with a colostomy bag and swollen legs? If my rectum is involved and I say no to resection, what would happen next …  would I just die really fast?  What is best .. colostomy bag .. death .. colostomy ..  maybe I should just toss a coin ..

Tomorrow I am going to ask the GP if they have my CT reports.  It’s ridiculous that I haven’t seen either of these yet.  K told me Dr M talks her through her CTs.

*I haven’t written this diary for nearly 12 weeks now, so this next part will have to be in retrospect:

The CT report and missing clinic letters

I finally got copies of the 2^nd CT report and missing clinic letters from the GP:

Miss R’s missing ultrasound report

8.5.12

‘ ... Uterine anomalies: none ... endometrium clearly visualised, thickness (total) 3.6 mm, structure: normal, endometrial cavity: regular.  Pouch of Douglas: free fluid: obliterated.  Right ovary: abnormal.  Left ovary: abnormal.  Abnormalities: 105 mm x 83 mm x 81 mm, volume 370 ml. Origin: right adnexa. 47 mm x 46 mm x 33 mm, volume 37 ml. Origin: left adnexa.  Diagnosis: advanced pelvic malignancy – suspected ovarian carcinoma.  The uterus was normal with a thin endometrium.  There were bilateral, predominantly solid adnexal masses as detailed above.  There was no crescent normal ovarian tissue seen.  The masses appeared to the uterus and fixed.  There was increased vascularity of the masses on Doppler examination.  There was no free fluid in the POD or ascites.  The omentum appeared thickened on abdominal scan.  The USS were typical of an advanced pelvic malignancy, likely to be ovarian in origin.’

Letter to Mr L, from wacky Registrar, Dr O

24.5.12

Thank you for referring this lovely 53 year old lady, who I saw in clinic today with Dr M (yippee – I’ve always wanted to be ‘this lovely lady’ or ‘this charming patient’ -  I misjudged Dr O – she’s crazy in a good way!) As you are aware, she initially presented to her GP two months ago with lower abdominal cramping pains which lasted for about 2-3 days.  Otherwise, she has only developed a new flurry of symptoms recently in the last two weeks or so with some lower abdominal distension.  Ms T has no significant past medical history and is currently on a low dose of HRT as her only regular medication. She has no known drug allergies.  She has no significant family history.  She currently works as a PA at ....  She is a non-smoker.

On physical examination today, she has a palpable abdominal mass.  Her abdomen is soft with no distension.  It did not feel tense and the bowel sounds are positive.  She has no palpable adenopathy elsewhere.  There is nothing else significant of note.

For investigation of her symptoms, Ms T originally had a trans-vaginal ultrasound which identified bilateral adnexal masses.  This was further investigated with a CT scan on 8^th May which confirmed bilateral adnexal masses and with also significant nodular peritoneal disease.  A CT guided biopsy (ahem -it wasn’t CT guided) was performed on 14^th May, which made a diagnosis of high grade serous carcinoma which is WTI positive.

I had a discussion today with Ms T and fully explained her diagnosis.  I explained that our recommended treatment would be to commence chemotherapy using a 3-weekly regimen of Carboplatin and Paclitaxel.  I explained we would hope to get this started with the next couple of weeks.  I explained that our intention may be further down the line to perform debulking surgery.  I explained the risks and side effects of our proposed chemotherapy regimen.  Ms T was happy to consent for treatment today.

Our plan is thus, as explained above to commence chemotherapy within 2-3 weeks.  We need to organise an EDTA scan for assessment of GFR prior to commencing. She will have routine bloods and a repeat Ca125 today.  We will see her again in our clinic following her first cycle of chemotherapy.

Second CT report

30.7.12

‘CT Thorax abdomen and pelvis

Comparison is made with previous KCH CT scan dated 8.5.12

No enlarged supraclavicular, axillary or mediastinal lymph nodes.  No pleural effusion.  No pulmonary metastases.  Benign calcified granuloma noted in the right upper lobe.

Within the abdomen there is evidence of a good partial response to treatment.  There is a 1.9 cm deposit in the gastrosplenic ligament which previously measured 3.3 cm.  The largest deposit related to the greater omentum in the anterior aspect of the lower abdomen currently measures 5.4 cm x 4.6 cm and previously measured 8.6 cm x 6.2 cm.  The other anterior omental deposits are also significantly smaller.  The deposit within the right hepatorenal space is significantly smaller although still present.  The ascites has resolved.  There has been a marked improvement of the peritoneal disease in the posterior pelvis and pouch of Douglas which has almost completely resolved.  There are residual partially cystic and solid adnexal masses.  On the right this measures 6.5 cm x 3.3 cm (previously 7.6 cm x 4.9 cm) the left adnexal mass is also significantly smaller.  No parenchymal deposits related to the liver or spleen.  Unremarkable appearance of the pancreas, adrenal glands and kidneys which are not obstructed.  No discrete bone lesion.

Conclusion: there has been a good partial response to treatment.’

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

Wed 29 Aug

Random appointment with the Stoma nurses, to see what stomas are all about.  One of the Clinical Nurse Specialists suggested I see them, to help me decide about consent for surgery.

Appointment in Mr L’s clinic, to give my consent for surgery, but was seen by Mr M, the Subspecialty Fellow instead.  I consented to everything, as of course I had to, because optimal debulking at surgery is the only variable that can improve the chances of survival.  I also asked Mr M to check my vagina because of the strange puffy flesh next to my cervix, that I felt before.  I must have imagined it though, as Mr M couldn’t find anything wrong.

Mr L’s clinic letter

30.8.12

‘I reviewed this pleasant lady today in the GnynaeOncology Clinic after discussion in the MDM.  Having received 4 cycles of chemotherapy her Ca125 has decreased to 57 (didn’t it go down to 40??) The scan was reviewed in our meeting and it suggested that she has had a partial good response to chemotherapy.  She will now proceed to debulking surgery on 13^th September under Mr L.

Medically she is fit and has no known medical problems.  She has no known allergies and is an ex-smoker.

Today I have consented her for a midline laparotomy + total abdominal hysterectomy + bilateral salpingo-oophorectomy + lymph node sampling in the pelvic and para-aortic area + omentectomy + debulking/excision of tumour with biopsies under Mr L.

I had a long discussion with her today when I was able to answer all her queries.  She also met with the stoma nurse earlier today and also consulted our clinical nurse specialist, Miss A.  Ms T was also worried about having felt some suspicious deposits in the vagina and therefore, I carried out a vaginal examination but did not find any abnormality on the cervix, vulva or vagina.  I have therefore, reassured her.

She was apprehensive about undergoing bowel surgery but I have explained to her that the chance of bowel surgery and stoma are rare.  We shall be proceeding with bowel surgery if there is any intra-operative evidence of bowel obstruction, injury to the bowel at surgery or if bowel surgery is required to completely debulk her tumour to achieve best result ...’

Thu 6 Sep

Pre op at Guy’s

Meeting with a nurse, who explained what I have to do when I come in for surgery next week.  She gave me some high carb drinks, antiseptic wipes and lots of leaflets.

Tue 11 Sep

Appointment with M, stoma nurse 

She had to mark two alternative places on my abdomen where the bag would go, just in case I needed a stoma at surgery.  They have to do this for everyone.  She was trying different positions for the bag ... should it go above the belly button or below ... would I be wearing jeans mostly or a skirt ... when I found tears coming out of my eyes (I’m so pathetic).  M can’t handle tears and rushed off to try to find one of the Specialist Nurses, before I could stop her.  Luckily there were none to be found and by the time she got back I was composed again.  She marked two places with a special purple marker, but one was totally wrong, and she had to change it.  When I got home, it was still wrong, so I changed it again, with a black felt tip.  You have to keep a plastic dressing over the marks, so they don’t wash off before surgery.

Thu 13 Sep

Debulking surgery (and five nights on the Gynae ward)

Preparation for the surgery involved giving myself a sponge bath with antiseptic chlorhexidine gluconate cloths the night before and on the morning of surgery (it’s a new thing they’re trying -horrible – I’d much rather have a proper wash), and drinking disgusting Fortisip drinks, to ‘carb up’ before surgery.  Nothing to eat after 2am, and nothing to drink except two sickly pre-op drinks at 6am. After a couple of hours waiting in the Admissions Lounge with R, he informed me my breath was horrible.  Having arrived at the Admissions Lounge at 7am, they finally told me to change into a gown for surgery in the early afternoon. 

I had to choose whether to have an epidural or self-administered morphine after the surgery.  I’m terrified of feeling paralysed by the epidural so I couldn’t decide.  I finally agreed to the epidural because they said it would make me bleed less during surgery and recover better afterwards.  I think they sedated me first, then I had to sit up and let them stick something in my lower back.

The next thing I remember is waking up and asking if I had a ‘bag’.  A voice said, “Yes, you’ve got an ileostomy.”  Then I could hear my voice saying, “Oh no, an ileostomy ... that’s worse than a colostomy ...  I wish I was dead ...  they shouldn’t treat cancer patients, they should just let them die.”  Then I became aware that my legs were numb, which terrified me, so I desperately tried to move them around, to wake them up.  I told them I didn’t want any more epidural, I would self-administer morphine instead.  At one point, I think I heard a voice saying, “Could you cover yourself up, there’s visitors and children coming in.”  But I was too drugged to know what was going on.  I guess my blanket must have come off, because of frantically trying to move my legs.  I don’t know if I was on the Gynae ward proper by then, or still in the recovery room. 

At some point, they gave me a mouthful of food or drink, but it was hell trying to swallow it with a nasogastric tube down my throat.  Thankfully they took the tube out soon after that.

I had come round from surgery bald, as someone had removed my headscarf, which was a bit mortifying.

Later, on the Gynae ward, Mr L came by and said he had managed to remove all the visible tumour, with good margins, and that the lymph node biopsies and peritoneal biopsies were all negative. So that was really good news.  I should have been happy, but I was traumatised by the shock of waking up with a stoma bag.  I had other things attached to me too: a urinary catheter attached to a big urine-filled ‘handbag’, and a central line bristling with plastic valves coming out of my neck.  I must have looked like Frankenstein’s monster. One of the lines was fixed to a morphine pump in the wall, so I was effectively shackled by my neck, like the zombie in 28 Days Later.

I felt like I had been severely beaten up and violated by the surgery, so it was strange to have to politely thank Mr L for doing that to me.  I couldn’t get something he said out of my mind either, that the tumour hadn’t invaded the bowel.  Did that mean it had been an unnecessary precaution to remove half my rectum?  A nurse assured me that he wouldn’t have done anything that wasn’t necessary, and I suppose that must be true.  It’s just that before the surgery I had read online that in 30% of cases where they decide they have to do this ‘en bloc’ uterus/cervix/rectal resection, no positive histology is found in the bowel, but they have to do it anyway, because in 70% of cases it does turn out to be positive.  I kept thinking that if I was one of the 30% it could mean I had been subjected to a rectal resection for nothing.

The bag is so vile.  The first time a nurse emptied it for me, into one of those grey, cardboard-type bowls, I was disgusted by the stinking greenish-brown liquid that gushed out of it.  It was so humiliating to have the nurse witness it.  Having the bag changed for the first time was horrific too, seeing the moist, red, swollen end of my intestine sticking out through my abdomen, like the end of a penis.  I couldn’t look at it.

The first couple of days are a bit of a blur.  I just remember pressing the button on the morphine pump a lot and having some really vivid dreams.  My worst moment on the ward was the second or third night: I was forced to sleep on my side, to accommodate the bag, but must have rolled onto my stomach during the night, because I was woken by wetness against my skin – the bag had come off, and the disgusting liquid poo was all over the bed.  I had to run to the shower cubicle, and hose myself down, then run back to my bed naked, clutching my wet nightie over my front.  There was only one patient on the ward that night, as all the others had all been discharged, a 20-year-old girl who had just come in with excruciating abdominal pain.  She woke up and saw me running past – I was so mortified. 

I buzzed for a nurse, then crouched on the floor with the shitty blanket round me, while she changed the bedding, then another nurse (marvellous, empathic) took me to an empty room, and  attached a new stoma bag for me.  I had been transformed into a 54 year-old baby.

The sleepless nights on morphine were very strange, hours staring up at the ceiling in the dark, seeing shifting clouds that became faces, cherub faces, puffing little clouds from their cherub lips, then turning into stomas, spurting shit instead of clouds, then demon faces, smirking demons who would meet me in hell when I died - demons, stomas, cherubs – try to keep them as cherubs.  I felt like I could lay there forever, blank, empty, floating , half dead.

The nurses would come at regular intervals to check my pulse and blood pressure.  My blood pressure was always near my usual low reading I think, but my pulse was persistently around 100 or more (tachycardic) and never seemed to slow, even when I was asleep.  Also, I think on the first night, they said I wasn’t breathing properly and I had to stick an oxygen tube in my nose for a couple of nights.

After two days I was promised removal of the central line and the catheter, after practically begging my nurse and finally one of the doctors on her ward round.  The doctor said she didn’t see why I’d had to have the central line in the first place, as I had good veins on my arms.  There was absolutely no reason to keep it in now, as I was no longer using the morphine, and I was desperate to be rid of the thing, dragging on my neck, with its heavy, spiky bundle of valves.  Eventually my nurse and two others came to take it out.  They kind of pinned me down on the bed while they chatted and joked with each other.  I thought they were being a touch sadistic actually, especially a small, angry nurse - probably they thought I was a nuisance for insisting on getting the line removed.  My nurse fumbled for ages cutting the stitches (she left a bit behind, and my GP had to get it out some weeks later). She finally got the line out, then strapped a big pad over the wound, and told me I had to press on it and lie flat with my head to one side for half an hour, then they would come back to check on me.  R was visiting, so I had to talk to him in that position, which was kind of a strain, but anything to get rid of the line.  After about 40 minutes, I sat up and buzzed and the small nurse came in.  She said I would have to lie back down for another hour, because I had sat up.  I protested, and she went to get my nurse, who agreed to just half an hour more.  After about another 40 minutes I buzzed again.  The small nurse came in again and said I should lie there for another half an hour!  It seemed she was enjoying torturing me.  After she was gone, I just sat up.  It was ridiculous.

The next battle was the catheter removal.  The doctor had asked my nurse to do this straight after the central line came out, but she said she couldn’t start the procedure until the evening, by which time it would be too late, as the process took several hours and would mean getting up during the night.  I thought, why not start it now? Then it won’t be too late. But I was compliant, as I didn’t want to antagonise her.  First thing next morning, she handed over to one of my favourite, lovely, efficient nurses, and I was finally allowed to get rid of the catheter.  This is quite stressful, as you have to pass a test: they take out the catheter (painless – you can hardly feel it come out) then you have to drink about nine cups of water over two hours and pee into one of those grey cardboard bowls.  They measure the amount of pee, and if you don’t manage to collect enough, they put the catheter back in! Thankfully, I passed.

At last! I was unshackled!  I began pacing up and down the corridor a bit, mostly because I was bored and restless, and partly because walking helps recovery, then someone told me about the patients’ Day Room, at the end of the corridor.  I began terminating my strolls in there as it is a lovely bright, airy room with a fabulous view.  Also, the patients gather for breakfast in there, so you get a chance to meet everyone.

People were on the Gynae ward for all kinds of reasons (the woman in the next bed to me was in for gallstones, another for inflamed kidneys).  I only met two women who had ovarian cancer, and I was the only one with a stoma.  One of these ladies had been confined to her bed for 12 days with sickness, following surgery. She said she had felt she would never get out of there.  She told us she’d been comforted by counselling visits from the chaplain.

The second OC patient, M, swapped stories with me over breakfast.   She had been operated on by Mr X, and he had left some tumour behind (20%) as he didn’t want to damage her bowel.  M said he was confident he could get rid of the remaining bit with chemo.  I wondered to myself which was worse – to have the bag or to know there was still some cancer left behind.  Neither is ideal.  I wondered again if it had really been necessary for Mr L to damage my bowel – would Mr X have left it intact?  How would I have felt if there had been some cancer left?    M was incredibly upbeat, and I thought if people can cure their cancer with positive thinking, she will definitely survive.  After we had each told our tale, we realised another lady at the breakfast table had tears in her eyes – because of our stories!  I felt quite guilty for upsetting her.  Later, I went to see M on the ward, and she came on one of my walks up and down the corridor, which was really nice.  We discussed our concerns and swapped contact details.  It was a comfort to find that I wasn’t alone in being massively swollen and having a seeping wound. The doctors and nurses do try to reassure, but it’s easier to trust and believe other patients, who are experiencing the same thing as me.

J came to visit one day, and sat in the Day Room with me and R. He talked with R a lot, which made me feel like a patient, i.e. to be talked about, not to.  It was nice to see him though.

One day, two young doctors in Mr L’s team came to see me.  I can’t remember what they said, except that one of them said the stoma might not be reversible.  When I protested that Mr L had assured me that it was, he back-tracked, saying, “Pretend I didn’t say that.” It really worried me.

A lovely lady called D had been installed in the next bed to me.  She was retired but used to be an engineer and a magistrate.  We had some nice talks in the early mornings, looking out over the Thames at the Houses of Parliament (the Gynae ward has a fabulous view).  One time I heard D telling one of the nurses that she always wished she’d had a daughter as well as a son.  I thought how nice it would be to have been her daughter. When her husband visited, it turned out he was called R too, and he and R were both wearing identical sleeveless, army jackets they had bought in Germany.  That was quite funny and they struck up some camaraderie.  D was in for keyhole surgery to remove an ovary (borderline or stage 1, I think).  Luckily they found no tumour spread, so she didn’t need to have chemo.  The day after her surgery we had our last chat as we were both going home that day.  We had a big hug when we said goodbye. 

I must have become a bit institutionalised, as I felt quite vulnerable when the time came to venture out into the real world again, with my wound and my ‘bag’, and no nurses on call.  On the ward, I was surrounded by other patients, who understood.  On the other hand, I couldn’t wait to have my own bathroom again, so I could deal with my freaky bag in private.  The nurses must have been glad to get rid of me, as I’d cried a lot during my stay.  I think I must have been suffering from post-traumatic shock (or does that manifest later?) The first fit of tears was in the shower room with M the stoma nurse, who was showing me how to change the bag.  It was too horrifying and I found myself in floods of tears, blurting out everything in my head (how I’m not close to my mother or sister and that I’m used to being independent and don’t have a network of women friends, only R and some bloke friends who are no good when you need nursing at home).  M awkwardly patted my back as she listened.

Afterwards she got me a session with a counsellor, who I saw in a little room on the ward.  I told him my dismay at the bag and that I felt trapped by it and on the verge of panic.  I told him how I hated to have to rely on other people, and not be independent and in control.  Finally, I told him I’d done some mindfulness training and we agreed that I would try using that, and I would see him again in a couple of weeks.

It was boiling hot in the room, especially in two nighties, a shawl and a wig, and the counsellor said, “What’s with the wig anyway?”  I said, “I just want to wear something on my head that doesn’t look like a stoma bag.” (The scarf I had been wearing was too creased and grubby to wear any more.  Caps and scarves don’t look right on my peanut head anyway, and they don’t cover my scraggy neck, so I always prefer wigs. OK, so I’m vain, but I do think headscarves say, ‘Look at me, I’m fighting cancer’, and I don’t want to advertise it in public.)

I had another bout of tears was when I had asked one of the nurses if I could have a clean hospital nightie (I’d been given one after the leaking bag episode and had been wearing it over one of my own nighties ever since, because it was heavy and voluminous and hid the bag).  The nurse took the nightie away, while I waited on my bed behind closed curtains, then she came back saying there weren’t any more, and the clean ones hadn’t come back from the laundry yet.  I asked for the dirty one back, but it was too late – it was in the dirty laundry sack.  I had nothing to wear over my own flimsy nightie, and I had a bag of shit hanging off my stomach.  It was the last straw. The nurse was very abrupt and when she left I collapsed into big sobs.  It was quite a relief actually, to let out the accumulated stress.  D heard it all, and so did the woman in the next bed, who was waiting to have her gall bladder removed.  She had been crying all day and night herself, since she arrived, in agony with gall stones, and I think she was relieved not to be the only one disturbing the peace.

Before I left, I had another session with M, where I had to change the bag myself (Hey!  I’m potty trained!)  She had also given me lots of instructions about what I couldn’t eat now I have an ileostomy – basically no fibre – and no water because it washes everything through and makes you more dehydrated.  I kept stockpiling cups of milk and orange juice from breakfast, but the kitchen staff would clear it away when I wasn’t looking. I was dehydrated the whole time. There was hardly anything on the ward menu that I could eat, and M tried to get them to bring me more appropriate stuff.  I ate practically nothing except Weetabix for breakfast (which it turned out I shouldn’t have been eating anyway) and for lunch, maybe a bit of potato, or some shepherd’s pie with the peas picked out.

My final fit of weeping was in the shower room, after changing into my dress to go home.  The stoma bag looked really obvious under the dress and the bulge stuck out even more because my stomach was huge and swollen after the surgery.  I tried to hide it under my M&S woolly shawl but I just looked pregnant.  I burst into tears, and while a young, blonde nurse tried reassurance and different knotted shawl arrangements to no avail, I poured out my suspicions to her that maybe the bowel surgery hadn’t even been necessary – M had told me that her surgeon, Mr X, had left some tumour behind because he didn’t want to damage her bowel and maybe if I’d been under Mr X he would have left my bowel alone!  The nurse assured me that Mr L would only have done what had to be done.

The inpatient discharge letter:

Clinical Summary

Elective admission for debulking surgery following 4 cycles of chemotherapy.  Findings at operation: bilateral ovarian cysts, widespread tumour deposits within pelvis. Pouch of Douglas obliterated with tumour deposits, rectum stuck with tumour on to back of uterus. Sigmoid colon adhesions to pelvic side wall.  Conjoint decision with colorectal team to proceed with bowel surgery to achieve complete debulking at surgery.  Above procedure performed with low anterior resection, anastamosis of large bowel to distal rectum and formation of a defunctioning ileostomy. Post op Hb 12.7. Good post operative recovery.

At home after the surgery

I was horribly depressed and tearful for at least two weeks after the surgery.  So depressed I couldn’t drag myself out of it, however hard I tried.  The bag was so awful, dealing with it all the time and feeling so repulsive just constantly dragged me down.  I felt it hindered my recovery.  I couldn’t even eat healthy food to help fight the cancer.  I had to order waterproof mattress protectors for the bed in case I had a leak in the night.  I had to wear ugly surgical socks for 28 days, and inject blood thinning agent (enoxaparin sodium) into my thighs every day for 28 days.  I had no energy or motivation to do anything except sleep or lay on the sofa watching the Paralympics.

After about a week, my wound started leaking fluid and blood, and I had to call the emergency on-call GP to come and look at it.  He was an incredibly up-beat, smartly-dressed African man called Dr H, which did cheer me up briefly.  He was very reassuring and had a supply of antibiotics in his bag, which he prescribed for me to take for a week. 

Different district nurses came round on various occasions, to see if I was able to change the bag ok, and to re-dress the wound.  I ran out of wound dressings at one point, and R had to get some from Boots, but they didn’t have the right kind, then one of the district nurses prescribed a whole load of wound related stuff and when R collected it from Boots, it came to about £60! Most of it I never had to use. Later I found that I could have got it free by filling in an exemption form at the GP surgery.

I could barely force any kind of food down at first, but gradually I managed a bit more and a bit more, until after about four weeks I was eating more or less properly, backed up by chocolate Complan.  I had a call from a member of the Ileostomy Association one day, who told me that she eats a normal diet (even spinach and mushrooms, which M had forbidden with dire warnings about the danger of a blockage).  She said the restricted diet was only necessary for about the first six weeks.  She also said she goes to work every day, and no-one realises she has a stoma.  She said she wears high waistbands, like Simon Cowell.  At some point I also had a call from a hospital Dietician, who was very nice, and helped clarify some of the contradictory things I’d been reading.

While I was on the ward, a physiotherapist had given me instructions about pelvic floor and core muscle exercises, which I started doing every day, but I sometimes wonder if maybe I shouldn’t be doing the stomach ones with a stoma.  I think I must have told the physiotherapist I had a stoma though.

Thu 27 Sep

Appointment with M, stoma nurse

I can’t remember the details of this appointment now but think it was where M and I had a frustrating debate about what I could and couldn’t eat, where I got progressively more upset, and she got progressively more annoyed.  I was dehydrated and she said my electrolyte balance must be ‘off the scale’.  Water is not allowed and it just seemed wrong to me that I had to drink fruit squash, which is full of chemicals and artificial sweetener, but not fresh fruit juice.  She said I had to take Dioralyte to rehydrate but I protested that the stuff makes me feel sick.  She agreed that I could have sports drinks instead and told me that when her mother was ill, she “stood over the woman” and forced her to drink three bottles of it every day.

Most fruits and vegetables were off limits too, especially anything with stalks or skins.  No whole grains, nuts, pulses or dried fruit either.  I didn’t see how I was going to get vital nutrition, and fight the cancer effectively, if all I could eat was refined stodge.  M’s definition of ‘nutrition’ seemed to be completely different to mine - to her it apparently just means calories.  She accused me of looking ‘pale and skinny’ and ‘wasting away’ in front of her eyes - like I had any choice.  I was reduced to tears as usual, and I’m sure she finds me very annoying.  For my part, I was beginning to feel she was a bit of a bully.

After my appointment with M, I went into the hospital M&S and bought some squash, (I ended up throwing the stuff away, and drinking home-made honey and lemon drink instead.  I don’t know if that’s allowed, but I can’t bear squash).  I also bought a basket full of processed meat products – party sausages, scotch eggs, pork pies etc - because they’re fattening and I like them.  What a diet!  It’s enough to give someone cancer.  I think it was a turning point in getting my appetite back though.

Wed 3 Oct

Dr M’s clinic/Mr L’s clinic

I don’t remember any detail about this appointment with Dr M, but I note that her clinic letter states that my peritoneal washings were positive, which is odd, because I could have sworn I was told the peritoneal washings were negative by Mr L’s team.

I also saw Mr GM, Senior Fellow from Mr L’s team in the same clinic.  I don’t remember much about this either, except that I asked about stoma reversal as soon as he came in the room.  His clinic letter says:

4 October

‘I reviewed this pleasant lady today on behalf of Mr L.  She remains asymptomatic following her surgery.  I noticed that she has developed some degree of wound infection but this seems to have healed well after she has started antibiotics. She is not experiencing any other problems and her stoma is working normally.  Her case was discussed in our MDM and there was no evidence of lymph node metastatic disease.  The fallopian tubes, uterus, cervix and peritoneal biopsies were negative.  There was viable tumour present in the ovaries, omentum and pouch of Douglas.

She is now due to continue with her chemotherapy with Dr M and therefore she saw her today.  She will be due for reversal of her stoma after her chemotherapy and we shall look forward to seeing her thereafter.’

Tue 16 Oct

Appointment with M, stoma nurse

Can’t remember the details.  I guess I was more in control than at the last appointment.  I think I asked after M’s mother, as M had just come back from a visit home to Ireland to see her.  She explained about ordering supplies.

Fri 19 Oct

Chemo no. 5

Continuing on the lower dose.  It had been nine weeks since the last chemo, and my hair had grown back, really tough and thick.  Goodbye again, hair!  I can’t remember any details about this chemo session now.  No familiar faces.  It might have been the session where R and I played chess, and an elderly lady having an infusion to strengthen her bones came over and watched us play and had a chat.  She had bone mets but I can’t remember now what primary cancer she had.  She had a certain charisma and had survived a long time.

Tue 6 Nov

Extra clinic appointment with Mr L

There had been some blood and watery yellowish fluid coming out of my vagina, and the nurses arranged for me to come to a Mr L clinic to discuss.  By the time the clinic came around the blood and leaking had stopped, but I was still keen to see Mr L in person, so I could grill him about his shaggy dog drawing (see above).  This had been playing on my mind, as I am afraid that the cancer might spread into my vagina.  When I got to the clinic, Mr L asked me if I minded a student sitting in, which I didn’t.  I launched straight in, saying, “I’m worried about strange pains in my vagina ....” at which point, Mr L’s mobile rang, so he walked out of the room to answer it.  My words hung in the air as the medical student and I sat in uncomfortable silence.  After a while, I sighed and began a conversation with him about his work and the fact that I used to be a medical secretary.  He seemed a nice person.  Then Mr L came back in and we continued where we had left off for a few moments, then his mobile rang again.  He said it was the same person as before and once again answered the call.  Finally, I got to finish my sentence and he reassured me a bit.  Then I brought out the shaggy dog picture and asked him how likely the cancer was to spread into surrounding areas (vagina) as his diagram seemed to show.  He said if the cancer was going to come back anywhere, it would come back in the pouch of Douglas, which wasn’t exactly reassuring.  I said if that happened, I wouldn’t agree to any more drastic surgery. 

I mentioned that Dr M’s clinic letter had said my peritoneal washings were positive, but his team had told me they were negative (It seems important, because from what I’ve read online, negative washings point to a much better prognosis.)  Mr L looked up the offending letter on his computer and assured me that it should say negative washings.

He said I should be able to get the ileostomy reversal ‘before Christmas’ which made me feel suddenly very happy.  I said, “Wow! That would be great!”  He said, “If it’s not happening, let me know, and I’ll (speed things up).”

Mr L’s clinic letter

7 November

This lady was seen in the gynaecological oncology follow-up clinic today.  She remains very well.

She had questions regarding her ileostomy and its reversal, as well as requesting information about abdominal pain which she has suffered since the procedure.  I explained that the pain is not likely to be due to recurrent disease, particularly as she had no pain prior to the operation when she was having chemotherapy.  Her bleeding has now stopped, and I have reassured her as best I can.

She will have further chemotherapy in the near future, and then I will refer her for reversal of her ileostomy as a matter of priority.

Tue 8 Nov

Dr M’s clinic

Saw FK, a registrar, which was disappointing, as I wanted to ask Dr M to explain the last CT to me.  K said she is very good at it.  I wanted to know how come the CT report said the tumour had completely resolved in the Pouch of Douglas, but Mr Lane’s surgery report says ‘Pouch of Douglas obliterated with tumour deposits’ – completely contradictory!  The registrar said that CTs can’t necessarily distinguish the diseased tissue.  Really?  What’s the point then?  I asked her to show me the tumours on the image, and she did her best, but it wasn’t really her thing.

Mon 12 Nov

Chemo no. 6

Final chemo! Hair thinner but not gone yet.  No real side effects from last chemo, and a breeze this time too.  Can’t remember any details about this session.

Tue 13 Nov

Look Good Feel Better

At last, a cancer-related appointment that didn’t make me feel like topping myself!  This was a really fun make-up session, with about a dozen ladies attending.  We even got a free bag of make-up goodies!

The session was at the Dimbleby Centre at STH, where I used to work, and since I was on a roll, on my way out I said hello to B, who is still manager there, arranged to attend the Gynae Support Group and booked a reflexology session.  I would have booked aromatherapy, but that will have to wait until I get rid of the bag.  I can have six free sessions, and R, as my partner, can have four J

Mon 3 Dec

Third CT Scan

CT of chest, abdomen and pelvis. This took place at Guy’s.  I wasn’t supposed to eat or drink for three hours before the scan, but I started out at R’s house and forgot.  I only had a coffee though, so I didn’t tell them at the hospital.  Had to drink the vile aniseed flavoured soapy water again, one jug in 40 minutes.  Then they get you to take off the top half of your clothes and put on a gown.  Then they put a cannula in your arm and you lay down on the CT table.  They inject x-ray dye into the cannula, which makes you feel a bit hot for a minute (also makes you feel like you have just wet yourself, but you don’t) then you hold your breath twice during the scan and Bob’s your uncle, you are free to go.

Fri 7 Dec

The Gynae Support Group I didn’t go to

I had arranged to attend the Gynae Support Group today, at the Dimbleby Centre at STH, which is a drop-in session between 1pm and 2.30pm.  I’m a bit hesitant in case there are women there with scary vulval cancer or who have had genital exenteration surgery (my biggest fears) and maybe that’s partly why I couldn’t drag myself there today.  Maybe I will make it to the next one.  I think they are on the 1^st Friday of the month.

Wed 12 Dec

Stoma nurse A, and colorectal surgeon Mr G.

The appointment was in an outpatients clinic at Guy’s.  First I was seen by stoma nurse A.  I’ve spoken to him on the phone before.  Unlike M, he’s kind and gentle, which is a relief.  He checked Ruprecht, and said he looked absolutely fine (of course) and then he had to wait for Mr G to finish with a patient.  He literally had to wait outside his door and ambush him. 

After a while, he brought in Mr G.  We shook hands and he gave me an explanation of what was going on and answered some questions.  Apparently he removed my whole rectum and stapled my colon to my anus with titanium staples.  This really threw me, as I had been hoping for dissolvable staples and had assumed that only part of my rectum had been removed*.  I asked if he had attached my colon really low down and he said yes (I had put a Vaseline-coated finger in there a few days ago, and felt the staples). I asked why it had to be done, and he said that was Mr L’s call.  Mr G just did as he was asked.  I asked if the metal staples could cause any problems and he said no.  He said they can come out or break up, or something - I forget how he put it.  Sounds unfeasible anyway, and I don’t understand how sharp bits of metal could work their way out and how they could not cause pain or damage.

*Later, I looked up ‘low anterior resection’ online, which is what Mr L’s surgery report says I had.  According to my online research, if you have an LAR, ‘part of the rectum ... is removed ... the colon is then attached to the remaining part of the rectum so that after surgery, you will move your bowels in the usual way ... if radiation and chemotherapy have been given before surgery, it is common for a temporary ileostomy to be made ... usually this can be reversed about eight weeks later.’

On the other hand, people who have a ‘proctectomy with colo-anal anastomosis’ have the entire rectum removed ‘... the colon is then connected to the anus ... ‘

So I’m confused – did I really have an LAR or did I in fact have a proctectomy with colo-anal anastomosis??

Mr G said I would have to go to the loo a lot after the reversal and that it would take two years to settle down.  He said I would be going 6-8 times on a bad day and maybe 2-3 on a good day.  It would never be like it was before.  He said some people have occasional ‘accidents’ too.  He asked if I still wanted to go ahead and get rid of my ‘little friend’.  I said I had read all about it online and that I did still want to get rid of my little friend (sorry Ruprecht!)

I mentioned the weird bulge underneath the stoma and asked if that would go down after the reversal.  He said yes, he would ‘tidy up any hernias’.  He said the operation only takes an hour and 9 out of 10 times they only need to make a small incision and don’t have to open the person up (so 10% have to be opened up ...).

He said I would get a contrast enema (dye test) first, to check if it was viable, and if it was, I would get the reversal.  I asked if it would be in January but he said it might not be in January.  He said he liked to wait 6 – 8 weeks after chemo before doing the reversal (ahem - that would make it January 7th, not February) I asked if he had a long waiting list and if there were other surgeons who could do it sooner.  He said there were others.  I said, “would they be as good as you?” (I felt a bit of flattery couldn’t hurt – but maybe it was bit too creepy?).  He said let’s do the enema first.   Then he stood up, shook hands again and walked off.  As he walked away I said, “Have a good Christmas!” but he apparently didn’t hear.  I felt just like one of those beggars, who say, “Have a good day” when people refuse to give them money.  Oh dear.  That didn’t go too well then. R would have done it so much better.

Thu 13 Dec

Dr M’s oncology clinic

The waiting room was crammed with people, some of them quite smelly and possibly germ-ridden, so I sat near the door and read my Kindle.  I had to wait an hour and a half to be seen and then it was just a registrar again, not Dr M.  Maybe I have been relegated to the registrars, now that my chemo is over.  The registrar read out my CT report, starting with all the positive stuff and building up to the bad news (I could feel it coming) which was that there was a 9mm something on my gastrosplenic ligament, which might just be scaring or inflammation from the surgery, but they would have to keep an eye on it. My last Ca125 was down to 15 (normal range 0 – 35) and it would be checked again today.  In three months I would get another CT scan, and we will see if the spot on the gastrosplenic ligament has grown.  Before the surgery there was a 1.9cm lesion there, which was I presume removed during surgery, as Mr L said he got rid of all the visible stuff.

I was reeling from this news but determined to ask all my other questions while I had the chance:

I told her the GP surgery kept sending me smear test reminders and I asked whether I should maybe have smear tests of the vaginal vault, even though I have no cervix anymore because the cancer might come back there (I read somewhere that they do that) but she said no.  I asked her if it’s ok to eat seafood and soft boiled eggs now.  She said probably but the bloods today would show whether my cell count was back to normal.  She said, if it wasn’t, they would let me know.

Then I grilled the poor girl relentlessly about HRT until she was probably dying to get out of there. I wanted to know if HRT was only a risk factor for ovarian cancer if the person had the BRCA gene mutation, and she said the cancer was the same cancer whether or not the person had the gene mutation and that taking HRT would be a risk for breast cancer.  That didn’t seem to answer the question so we went round in circles a few more times without resolving it.  I thing the problem was that I didn’t really understand what I was asking and she didn’t really know the answer.  I asked whether it would be a risk to use vaginal oestrogen cream – could it encourage cancer to spread to the vagina, particularly as there had been active tumour deep into the pouch of Douglas and she said she would ask Dr M.  She suggested trying other vaginal lubricants, but I said they don’t really work.  She said I should try pessaries (ugh!  Pessaries sound horrid).  She said she would refer me to the Menopause Clinic, and also said I could have a DEXA scan.  Not sure if she is booking this ...

After doing the registrar’s head in, I had my blood taken, then had a session with M, the CNS, as the registrar thought she could answer some of my questions.  M couldn’t enlighten me about HRT either, but it was nice talking to her, as she was saying all the right things, e.g.  “You deserve to have a sex life.”

K (who I met in chemo) came out from her appointment while I was handing in a form at reception, so we went to Starbucks for a coffee and a chat. It was great talking to someone who knows how it feels.  We even laughed about death and suicide. K’s latest chemo isn’t working anymore, and they have given her time off over Christmas as she’s exhausted.  I think she said she has become allergic to carboplatin?? She said she’s usually cheerful at her appointments, but today she cried.  She said she thought she was on the way out. She said after four years (and nine courses of chemo) the fight goes out of you.  She has never had a remission.  I hope she gets a break. Her oncologist says he still has more things he can try.

As I was heading home, I remembered that I was supposed to be having a reflexology session at 2pm at STH, but it was now 2:15, so too late.  I tried to phone the Dimbleby Centre, but my phone ran out of credit, so it had to wait until I got home.  At home I found four messages on my mobile and two on the landline from R, getting increasingly frantic because he hadn’t heard from me.  I remembered that the mobile had rung twice during my appointment with the registrar, but I’d forgotten about it because I was talking to K.  I felt guilty and slightly annoyed that R frets so much.  I think he thinks I will top myself if I get bad news.  Must make sure I communicate better next time.

Sun 16 Dec

Now I’ve finally caught up with the three-month diary backlog, it’s time to celebrate with a general update:

Update on the Ileostomy

It’s very frustrated waiting for the reversal, as the date keeps getting put back.  First Mr L said “six weeks” then it was “three months”, now Mr G says not even in January.  Still on tenterhooks waiting for the dye test as I don’t even know if the reversal will be possible yet!  Went to R’s yesterday to join in his family Christmas get-together, and found that the bag affects everything.  People now won’t give me proper hugs, I just get awkward arms-length ones because they’re afraid of ‘the bag’.  It was really nice to pick up the baby, as babies don’t judge!  At Pizza Express, there was only one pizza that didn’t have banned ingredients in it - mushrooms, corn, peppers etc., which could block the stoma – so I was left with the ‘Classic American’.  Very nice, actually, but even that had onion, tomato skin and spices in it, which are supposed to be bad.  I had my first glass of wine since the surgery, mixed with Sprite, and absolutely relished it.  It caused no ill effects either – mmm - I want more!

I’ve found that the strangest thing happens psychologically, with the stoma.  At first I could hardly bear to look at it – it looked like a freaky penis sticking out of my abdomen.  But then I named him ‘Ruprecht’, after the Steve Martin character in ‘Dirty Rotten Scoundrels’, which helped when mentioning the stoma in public.  Now Ruprecht seems to have acquired his own personality – he stretches out when he feels comfy, and shrinks when you clean poo off him.  He also makes little burbling and spluttering noises when he’s expelling wind, like he’s talking to you.  I realise how sick this sounds!

This strange bonding doesn’t change my desire to have him put him back inside though, as I can’t hack having to go around in big dresses all the time, worrying about the bag puffing up or leaking in public, and having to clean the stinking thing out a million times a day. Also, R and I haven’t even contemplated sex with the bag there; we are just waiting until it’s gone (I would want to be sure the bowel surgery has healed properly anyway).  If they say the stoma can’t be reversed, I guess some serious couples counselling would be in order.

Update on what’s going on in my head these days

Stoma, stoma, stoma, stoma ... but apart from that, I guess I feel immensely sad that I might be dead in a few years.  I don’t have much confidence in anyone finding a ‘miracle cure’, but I hope to be kept going for at least five years with chemo.  I definitely don’t want to go back to the office – to waste my last few years doing tedious admin!  That absolutely can’t be allowed.  I think I will have to embrace grinding poverty instead, unless I can find some way of making money with writing, but, really, how likely is that!  I haven’t started my novel yet (but now I’ve caught up with this diary I will, I WILL!)

Tue 18 Dec

Fuck!  Just been reading online about changes to women’s sexual response after hysterectomy – very depressing!  Why didn’t they warn me about this? Not only is there no lubrication anymore (why is that?) but apparently orgasms are not as long-lasting or intense as before because you have no uterus.  I had no idea the uterus was important for the quality of orgasms - I assumed it was down to muscle contractions.  I’ve done a few test runs, and I have to say, I did think there was something missing.  A few people blog that their orgasms are just as good or even better than before, but most seem to be devastated because they are not.  One blog said that you need to really strengthen the kegel muscle to get the intensity back.

Later: I’ve been doing kegel exercises since the surgery, but online research now tells me that for really effective results, I ought to buy a Kegelmaster (£60).  You insert the device into your vagina, then squeeze against the resistance provided by successively stronger springs.  You can even hang weighted balls off it – freaky!

Jan 2013 update: had sex with R, and everything seems just as intense as before –phew!  Actually, it seemed better than before, but maybe that’s because I was sex-starved! It just shows you can’t believe all the online horror stories. Anyway, I don’t think I need the freaky Kegelmaster.

Thu 27 Dec

A lump

Last Friday I was poking my abdomen and found a big hard thing, so I called the nurses and spoke to MS, who got me in that afternoon to see Dr D, who was on-call.  He poked around and felt the lump too.  He said there were other things it could be, apart from a new tumour, such as poo clogged in my bowel (unlikely as I have practically liquid poo at the moment), or some kind of post-surgery collection or cystic thing or blood clot. He said it didn’t move, so wasn’t attached to an organ.  MS said she would try to get a radiologist to have another look at my CT, to see if there was something in that area that had been missed.  Dr D described it as ‘above the right iliac fossa and below the right flank’.  MS told me to phone on Monday, to see if the CT had been checked and if it had, I would be squeezed into Dr M’s clinic on Thursday 27^th, to see the registrar. 

I called on Monday but couldn’t get hold of anyone, even by pager.  The answerphone message said, ‘Don’t leave a message because they won’t be picked up until Friday 28^th’. I called appointments today, about 1pm, but the clinic was over and there was no-one to ask whether or not I had been given an appointment.

Dr D had said to feel the lump again before phoning on Monday to check whether it had gone away or not.  I did check on Monday, and it felt the same. I felt it again today, and it seemed less pronounced, maybe.  It’s hard to tell, as it seems to go away a bit when you press it then come back later. Could it be some kind of hernia?  Could my bowel feel that hard? I hope it’s poo in my colon, not a tumour.  I don’t want to feel it again for a while, as I want to believe it’s nothing.

Neuropathy

Went for a walk along the river with R today, which was lovely (beautiful coloured lights on the buildings) except that my arse really aches these days (where my rectum used to be).  It’s becoming quite draining, to be in discomfort verging on pain all the time.  I really hope the enema test might ease it somehow, as I can’t help thinking that there might be stuff trapped in my colon.  Also, I wish the staples were dissolvable instead of fucking titanium!  How could that not hurt!

On the way back from our walk, we went into Starbucks and I found I could hardly move my left hand, which had got cold.  It must be the peripheral neuropathy.  It was quite distressing.  I didn’t think that would progress/get worse so long after the chemo ended.  Most nights now I wake up with numbness in one or other of my hands, and have to shake it back to life.  I had thought it was the old problem with my neck, as I don’t exercise anymore and the supporting muscles are probably wasting away, but maybe it’s because of the chemo.