Cancer Diary 2016 - final entries

DIARY 2016

Sun 3 Jan

Last Tamiflu tablet this morning, thank fuck. It totally messed up my stomach – horrible stomach pains, heartburn – awful – and completely, totally destroyed my appetite (not listed as a side effect).  I’ve had to force myself to eat little bits.  I think I look like a cadaver. 

I’m sick of being bald and having no appetite and no energy and not being able to breathe.  I think the chemo is killing me.  I want to jump ship, but what would I do then?  I know I’m just a lab rat to them, or more precisely a hairless mouse.  Hairless mice are bred without any immune system, so they can give them cancer and watch the effect of chemo drugs without anything interfering with it.  I feel like they’re keeping me weak by taking six or seven tubes of blood out of my arm every week.  How can my body cope with all that blood loss, especially when I have no appetite?

Mon 4 Jan

Phoned Sarah Cannon Research Insitute.  Spoke to an unintelligible, fast-talking foreign woman, who kept calling me ‘Ma’am’.  I have to email her my last two clinic letters and my last CT scan to be seen privately.  She couldn’t tell me the cost.  She said the biopsy would be done at Harley Street or UCL with a CT or MRI.  To be seen on the NHS, I have to be referred.  I can’t imagine Dr S or Dr M agreeing to that though.  I thought someone said on Ovacome that the cost is £1,200, but how can it be so little?  Maybe they already had a biopsy specimen. Preparing myself for it being out of my price range.

Thought I would pop back to Brixton today, to scan clinic letters etc, but realised I’m too ill.  My lungs don’t seem to have recovered.  Horrible heartburn still.  Perhaps the decision to stop the trial will be out of my hands after all.  The node in my groin is enormous today – very disturbing.

Tue 5 Jan

Bloods and doc

Don’t remember anything about this session, but they must have prescribed more antibiotics (Co-Amoxiclav and Clarithromycin) because my lungs weren’t any better.

Wed 6 Jan

Admitted to Whitechapel

Woke up drenched in cold sweat and found I couldn’t walk or talk properly.  Ronnie phoned for an ambulance and I got taken to Whitechapel Hospital A&E.  I don’t remember much about A&E, but eventually they sent me up to a ward – 11F or something (their wards are named by floor number and a letter).  There was a panoramic view of East London from the window.  They gave me a chest x-ray and fluids through a drip at some point (or was that in A&E?) and fizzy potassium tablets as apparently I was lacking in it.

It was a strange ward, an alternative reality, ruled by a little Filipino(?) nurse who talked to the patients in baby talk.  They gave me the Co-Amoxiclav via a drip and the Clarithromycin was pushed directly into my arm with a plunger (painful). 

There were two Ghanaian women patients opposite, one very young, one aged 34 who was called Anita.  Anita (and maybe the younger woman too) had sickle cell disease and was being treated for a crisis.  She had been rammed in her stationary car by an Asian woman driver and had got whiplash, which led to her sickle cell crisis.  Both the women were taking morphine, anti-emetics and Senna.  Anita was quite imperious with the nurses and knew exactly which drugs and doses she wanted and when, probably because she had been coming to this hospital regularly all her life because of sickle-cell.

There was also a West Indian (?) woman, with some missing teeth, who was suffering from numbness and tingling all over her body.  The nurses and doctors didn’t seem to be offering her any further investigation for this and she was quite upset.  She cheered up a bit telling us her story, about how they told her she would never have a baby because she had polycystic ovaries, but four months ago she’d given birth after all.  The joy of having a kid was all-consuming for her and she got discharged desperate to see her daughter despite not having her medical problems sorted out.  When she left we had a peck on the cheek, which was nice.  Anita was a Christian and urging the WI woman to pray, and the WI was a convert to Islam, but Anita said it’s all the same God.

Thu 7 Jan

Blood transfusion

I think it was the Thursday, I was was supposed to be getting a blood transfusion for low Hb, but there was a delay with it all day long.  I don’t think I got my antibiotic doses, because they were expecting me to be on the IV for blood.  Night-time came and still no blood arrived, and I couldn’t sleep, so I began walking up and down the long corridor.  The nurses seemed threatened by this and asked me how I was.  I said I find it soothing to walk.  They then spoke about me in the third person, which I find very rude, saying oh well, I was getting exercise anyway.  They should have been glad of this because they had been trying to persuade me to have anti-coagulant injections because of lying in bed, which I had refused.

Finally, after midnight, I got the blood.  It had been sitting in a fridge for many hours on the fourth floor apparently, but the Indian nurse didn’t have a pass card and was waiting to borrow one from the Filipino nurse, or something – ridiculous.

The Indian nurse repositioned the cannula for me and did an expert job.  While the blood was going in, she sat and chatted with me (maybe they thought I was about to crack, after seeing me walking up and down the corridor for 30 minutes).  It turned out she was from Chennai, so we talked about that as I went there on my India trip.  She seemed quite emotional and said she missed it.  I told her I loved the head wobble she does and that it’s a missing gesture that we don’t have in this country.  She said her manager thinks she is saying “No,” and I said obviously it doesn’t mean no, it means ‘that’s cool, that’s ok’.

Fri 8 Jan

Discharged from Whitechapel

Refused to have any more IV antibiotic as the cannula site had become very painful after the plunger went in.  My Chennai nurse seemed disappointed, saying there was nothing wrong with the cannula. They eventually agreed let me take tablets instead and when the cannula was taken out there was a big, sore, red swelling where it had been – a reaction to the drug.

Suddenly got transferred to Ward 3D, as someone from A&E needed my bed on 11F.  No window with a panoramic view on the new ward but it didn’t matter as miraculously we managed to get my medication and discharge by 1pm, in time for R to help me home with my carrier bags before he had to go to work.

Whitechapel Discharge Summary

Consultant at Discharge: ER (Cardiology)

Admission date: 6 Jan 2016

Ward: 3D

Acute Problems

Anaemia

Drug induced pneumonitis

Lower respiratory tract finding (finding)

Venous thromboembolism risk assessment

Chronic Problems

Metastases

Ovarian Cancer

Procedures / Investigations Done

XR Chest (Completed: 6 Jan 2016 18:34)

Clinical Presentation

This lady with metastatic ovarian cancer presented to A&E with excessive sweating and a feeling of generally unwell.   She did not report any cough, dysuria or pain but has been feeling increasingly short of breath recently

Significant Investigations

CXR – pneumonitis picture

Previous CT chest and CXR requested from Guys hospital and transferred to us – images unchanged.

Hb, after 1unit transfusion 94

CRP 121 improved to 74 with IV coamoxiclav

WCC 4.4

Neutrophils 1.5 repeat 1.6 raised

Oesinophils 1.1

Clinical Course

Given CXR findings and oesinophilia a drug-reaction to chemotherapy was suspected.  She was treated symptomatically with 1 unit of blood transfusion after which she felt much better.  She was also given IV coamoxiclav and PO clarithromycin and inflammatory markers improved.

She was reviewed by an acute medical/respiratory consultant who would suggest a course of steroids to treat a probably drug-induced pneumonitis, however would recommend a bronchoscopy first to exclude an opportunistic infection.

She has also been staying with a friend in Wapping for the last 2 weeks over Christmas and is uncertain about going home and living alone.  She is not currently being seen by Macmillan and we have suggested to her a referral would be appropaiate for some community support

Performed by: G, S K

Drugs on Discharge

Coamoxiclav 625mg 3 x per day for 7 days

Clarithromycin 500mg twice daily for 7 days

Sat 9 Jan

Back to Brixton, early in the morning by minicab.

Mon 11 Jan

CT scan

Made it on my own, in a taxi.  Feeling very frail and ill.  In the CT waiting room they wanted me to drink 500ml of cold water (I had a bottle of it, which had been in my fridge) and I felt quite sick, so they let me lay down on a trolley behind some curtains.  It was really hard to drink that cold water as my stomach is all messed up from the antibiotics.

Took the antibiotics early this morning (or was it Sunday?) but not taking any more, as they are screwing up my stomach so much (I literally can’t bring myself to take another one).  I was supposed to go on until Wednesday.  Depending on how you count the chaotic days in the Whitechapel, I may have had five days anyway, which is supposed to be the length of the course.

CT Report

11 Jan 2016

CT Thorax & abdo & pelvis with contrast

Requested by JS

Clinical details: serous ovarian carcinoma.  TAX-TORC phase 1 trial.  Recent H1N1 infection, new pulmonary infiltrates on CT 21.12.15 **please scan Mon 11^th Jan if possible**

Questions: 1) Progression or resolution of lung interstitial change (related to influenza or drug); 2) Restaging of cancer (baseline was Oct 15).

Comparison is made with the baseline imaging of October 2015 and most recent study of December 2015.

Post IV contrast.

In the interval since the last scan, there has been some clearing of the bilateral pulmonary infiltrates.  There remains patchy, peripheral grounglass opacification bilaterally and a small focus of consolidation in the lingular segment.  No pleural effusion.  No discrete lung nodules.  Note is made of a small pretracheal lymph node (8mm, S4/26) which is slightly more conspicuous than before.  There is no hilar or totally lymph node enlargement.

There are numerous liver metastases, these are more prominent and are of a lower density than before.  Several small lesions appear new.  No intrahepatic duct dilation.  There is a trace of fluid overlying the right hepatic lobe as before.  The pancreas enhances normally.  The splenic lesions have also enlarged slightly.  The kidneys enhance uniformly and are unobstructed.

Note is again made of multiple peritoneal nodules which are slightly more prominent, for example in the left upper quadrant there is a nodule measuring 2.5 x 1.9 cm (S4/128, previously 2.0 x 1.6 cm).  There is no para-aortic or pelvic lymph node enlargement.  Small volume iliac chain lymph nodes are again noted.

No evidence of bone metastases.

Impression:

Stable disease.

1. 1.       Partial resolution of the interstitial lung change.
2. 2.       2. More conspicuous, lower density liver metastases which may reflect necrosis.
3. 3.       Enlarged splenic lesions.

RECIST 1.1

Marker 1: 2.6 (S4/128, segment IVb lesion)

Marker 2: 3.2 (S4/123, segment III lesion)

Marker 3: 2.3 (S4/203, pararectal mass

Total = 8.1 (baseline, 6.6)

 Non marker lesions:

Numerous other liver lesions, splenic lesions, peritoneal disease, iliac chain nodes.

V H

 
Tue 12 Jan

Bloods and doc

Seen by Dr S.  He seemed more open and honest today, maybe because he is no longer focussed on keeping me on the trial.  He showed me my lungs on the CT scan, which have improved since the last scan.  I didn’t ask to see the liver mets and all the other mets, as it’s too terrifying.  He admitted that everything has got bigger and that this was a good reason to stop the trial, along with the possibility that my lung inflammation might have been a result of reaction to the trial drug.  (They never found any actual infection in the blood cultures they took.) He is going to refer me back to Dr M and told me to phone the CNS (or did he mean palliative care nurse?  I don’t think I have one of those).  I asked his opinion of the Care Oncology Clinic, and their cocktail of drugs.  He said there are no clinical trial results to back up their drug regime.  I also asked him about a referral to the Sarah Cannon Research Institute.  He didn’t seem totally opposed to this, although he didn’t offer to refer me or anything.  I asked if he thought the motivation behind the clinic was to funnel volunteers into their clients’ drug trials, and he said yes!  I asked if their tumour profiling would be able to tell me whether, say, Taxol or another chemotherapy drug would work and he said it wouldn’t.  I asked if there was anything that could, and he said yes but it wasn’t very good.

I still had to go and have bloods and obs done, which I suppose they need for the drug trial records.  

E took my temperature and it was 38 – disaster!  I was supposed to be having a week or 10 days off, to recover from the antibiotics etc and now they insisted that I go back on antibiotics!  I immediately said no, as they have completely screwed up my digestive system and I’ve lost weight.  G began talking me into it, but I couldn’t really listen as I needed to go to the loo, so I left him persuading R.  When I came out, I agreed to get a prescription for more antibiotics and that if I was going to take them, I had to start today.  I knew I would have to take them.  G said the alternative was to possibly end up in A&E again later.

He said it would be a five-day course, but if it didn’t work at first it might have to go on for weeks.  I burst into tears and they pulled the curtains around.  R kissed my head (my almost bald head) and I said, “Don’t, that’s embarrassing.”  G said that’s not embarrassing and stroked my head himself!  What strangeness! 

E had taken my blood to the lab, so that they could find out whether my CRP (inflammation marker) was up.  If it was, it is supposed to indicate that I have some kind of infection and needed to stay on antibiotics.  We agreed that I wouldn’t wait around for two hours at the hospital, but that G would phone me at home.  R and I went to pick up my prescription.  The wait seemed interminable – it was SO, so, so cold!

Later, after we got home, George phoned and said my CRP had gone up to 200 (very high) and so I capitulated and started on the antibiotics.  There was a positive postscript to the story though, as I realised that the new antibiotics – Doxycycline - are the ones which form part of the Care Oncology Clinic cocktail.  It does make me feel quite doubtful about the idea of taking the things indefinitely though, as even these once-a-day pills turned out to give me cracked corners of the mouth (vitamin B deficiency?).

Dr S’s Clinic letter

12.01.16

I caught up with G and her boyfriend today.  She has been less well over the last three weeks since admission with flu, subsequently probably complicated by a bacterial lower respiratory tract infection.  She was briefly admitted to the Royal London last week and has completed five days of antibiotics.

Her respiratory symptoms have settled nicely, as have the parenchymal diffuse changes in the lung, judging by her CT scan performed yesterday.  However, this scan also shows unequivocal evidence of disease progression, including in the liver which probably accounts for her right upper quadrant pain.

She will discontinue participation in the trial and understands the rationale for this.  Although the interstitial change in her lung was probably related to infection, we cannot rule out her recent trial drugs as being implicated, so there are two good reasons to discontinue her trial participation and Gaynor understands this.

I have started some new analgesia today and she will renew contact with her Community Palliative Care Nurse.  In the meantime, I know she would find it helpful to be reviewed in your clinic again.

Thank you very much for referring her for this study.

With best wishes

Dr J S

Wed 20 Jan

A pain in my liver and shoulder kept waking me up in the night and today I took a Dihydrocodeine which has had no effect after three hours so far.  Called M S this morning and asked to come back to Dr M’s clinic.  Dr S is supposed to have referred me, but he also told me to ring the nurses.

Sun 24 Jan

I can’t fucking breathe properly.  When I breathe in deeply, it really hurts in the diaphragm area.  I suppose it must be because my liver is swollen.  It’s really hard to find a position to sleep in at night, but when I get to sleep, I do sleep well.  I haven’t been waking up totally drenched in cold sweat lately, so I’m hoping that’s somehow over.  I haven’t taken any pain-killers for maybe a week.  It seems to be less of a constant pain now and more a big pain when I take a deep breath.  I am wondering if I should be taking steroids for lung inflammation, if I still have that.  It was mentioned when I was in hospital.  I feel like shit! Everything hurts!  I need help soon, or I won’t be able to climb back up from this!

Wed 27 Jan

Dr M’s Clinic

Got squeezed in to see Dr M at St Thomas’s as she also has a clinic there on Wednesdays.  Dr J was doing a clinic there too.  R and I didn’t have to wait long, which was good because my liver pain was threatening to get worse.  Dr M shook my hand and held it for an extra second (she still thinks I’m dying then ...) but I quite like that – at least it’s like she doesn’t hate me. 

She began by showing me my CT scan – all the liver mets for one thing, which horrify me as there are so many.  She said if my liver function goes haywire, I won’t be eligible for any trials at all, so she wants to get started on another chemo.  She suggested more weekly Taxol, but I vetoed it, saying I don’t want to be bald anymore.  Besides, it didn’t shrink anything.  She says I wasn’t on it for very long, but, fuck it, the mets were growing the whole time.  Even the node in my neck, which I thought was the one thing that had resolved, turned out to still be there when Dr M examined me.  She pointed out that my Ca125 had been going down, but I just don’t want to be bald anymore.  She agreed to try Gemcitabine, which she says will only make my hair thin.  She said it will be weekly, which made me groan in misery at the thought of all the stabbing and prodding to find veins.  She said she might add in Carbo after a while because, although it didn’t stop the liver mets, it did get rid of the ascites.  I think that is a good idea, but thinking of the weekly visits and all the stabbing brought tears to my eyes and I suddenly felt deeply depressed.  She said I didn’t have to have the chemo and I asked what were my other options. She said to just have palliative care (even more depressing!)  She said I had a week to think about it, because I can sign the consent next Wednesday and she will book me in for chemo next Friday regardless.  I’ve already decided I will sign the consent next week.  

There was another option of Topotecan, but neither Dr M nor I thought that was a good idea.  I said I remembered she didn’t like it and she said it’s very destructive to the blood counts.  She said, “My patient is in Intensive Care ...” which I thought was sweet because she said ‘my patient’ and she sounded like she cares.

God knows what she thinks of me – probably finds me very cold and ungrateful – but I can’t pretend not to feel depressed when I am.  Luckily R was positive, which kept things more upbeat.  She must be totally bemused at why he would want a partner like me.  He was very good today, backing me up and helping with questions, instead of just doing jokes and charm.

She wants me to take steroids for the inflammation, which I totally agree with (I’d been thinking of dosing myself actually, with some I had left over, but decided to wait for her opinion).  Unbearably though, she wants me to take them for three weeks!  On a de-escalating regime of 4 for 5 days, 3 for 5 days, 2 for 5 days and 1 for 5 days.  This is an enormous amount of steroids.  How the fuck am I going to sleep?  Won’t I become horribly anxious and jumpy?  I had been thinking of dosing myself with one a day.  This made me feel quite depressed, so I groaned and moaned about it.

I asked Dr M about the Sarah Cannon Research Institute and, amazingly, she agreed to refer me there, which means I wouldn’t have to pay.  She said it could be an option if the Gemcitabine doesn’t work.  I asked her about a blood test I had at the beginning of the Tax-Torc trial, which was a separate study to identify anything actionable with my tumour DNA.  She didn’t know how to get up the results on the computer but she called in Dr Joseph and she knew.  They printed it off, but it said nothing was actionable.  Apparently a bit of my tumour from 2012 was tested, as well as the present-day blood sample.  I asked Dr M if this was the same information that SCRI would test and she said yes, but she is going to send the result print-out off with the referral.  I would think though, that the SCRI does a wider range of gene tests.  I think they must because their info says they are adding new ones as needed for new trials.  I have to ask Dr M for a copy next time I’m in clinic, because the printer quality was crap today.

I also asked her about the Care Oncology Clinic.  She seemed disgusted that they charge £400 and thinks they might be in it for money.  She said they could easily do a study free of charge, like St Thomas’s does.  She said the Phase 1 Trial Unit (where I had Tax-Torc) is funded partly by money from big pharma trials, but the unit uses that to help fund non-profit trials.  I still think I might try the COC drugs though, after we see how the Gemcitabine is going.

I tried to show her a print-out of a story about the p53 mutation and a possible way in (no trials yet, but they are studying at UCL and there would be no side effects) but she said she didn’t have time to read it.  She said I read too much (she’s said that a few times now.  Obviously she likes her patients to be more bovine!)

I told her about the liver pain, and she suggested Paracetamol  4x a day, then morphine at night.  R chipped in that I don’t like paracetamol because it gives me tinnitus.  I felt a bit embarrassed because I knew Dr M would just see that as fantasy.

She examined my breathing and prodded my abdomen.  She seemed to be saying that my liver has expanded into a lower position.  A disturbing image.  She prodded the nodes in my groin, which are swollen and sore today.  I yelped when she prodded them, and said they seem to fluctuate and must be aggravated by the lymphoedema.  Of course this is a loaded subject, as in 2013 or whenever it was, she had a melt-down and told me the groin swelling was “all in my head”.  I felt somewhat triumphantly vindicated when she admitted today that one of my legs is bigger than the other, but also a bit nervous that she has been proved wrong – it can hardly endear me to her!

As we were leaving, I grabbed her hand to shake it again, whether she wanted to or not.

On the way to pharmacy, to get my steroids, a middle-aged woman asked me where to go for blood tests, and I directed her.  She said I looked like someone who had been to this hospital a lot!  I didn’t have the energy to feel hurt though, as I was dragging myself along in a deep, suicidal depression – I thought she was merely being observant.  As she walked off, she wished me luck and said get well.  

Since the excruciating pains started, I’ve been thinking a lot about chucking myself off Westminster Bridge.  I mentioned it to R as preferable to morphine, which I don’t have enough of, and he said it would take them days to fish me out and I would be horribly bloated by the water.  It still seems like a good plan though, now that I know that Switzerland is financially out of reach.

Dr M’s Clinic letter

27.1.16

Diagnosis:

Relapsed stage 3c high grade serous carcinoma of the ovary.  BRCA negative.

Treatment:

Jun 12 Neo-adjuvant carboplatin/paclitaxel x 4 with partial remission.  Dose reduced on cycle 4 due to nausea and vomiting.

13.9.12: Laparotomy, TAH BSO, total omentectomy, pelvic and paraortic lympadenectomy, low anterior rectal resection, defunctioning ileostomy, (Mr L, Mr G).

Histology: High grade serous carcinoma with residual viable tumour in ovaries, omentum and pouch of Douglas.  Lymph nodes negative, washing positive.

Nov 2012: Completed 6 cycles carboplatin and paclitaxel, last 2 as adjuvant.

May 2015 – relapse of disease with ascites, multiple peritoneal nodules and lymph nodes.

01.06.15 -21.09.15 carboplatin/liposomal doxorubicin, 5 cycles, with initial response, but progressive disease at the end of treatment with a new liver metastasis.

13.11.15 -9.12.15: Weekly Taxol and AZD2014 (TaxTorc study for five weeks with disease progression)

Current situation:

Consideration of further chemotherapy.

I have reviewed G following recent treatment in the phase 1 unit.  She received weekly taxol and a TOR inhibitor ADZ2014 from the 13^th November to 9^th December (five doses).  On 16^th December her treatment had to be stopped because she developed an episode of fever and other viral symptoms, and had a diagnosis of influenza A.  Although the Ca125 and supraclavicular fossa nodes responded to treatment, her CT scan shows progressive disease in the liver and spleen.

Her current symptoms are pain in the right upper quadrant suggestive of capsular liver pain, anorexia, weight loss, minor nausea, constipation and anxiety.  She is on Paracetamol, Codeine and Movicol.

Her performance status is 1.  On examination she looks pale and there is a palpable lymph node in the supraclavicular fossa that measures 0.5cm; and two right inguinal nodes of 1cm and 0.5cm.  The chest is clear and cardiac exam is correct.  The abdomen is soft with tender palpation of the liver, which is enlarged by about 4cm.  There is minor right leg lymphoedema.

I have discussed the results of her last scan.  She understands that her disease, especially her liver, is refractory to the last treatments we have tried, Carboplatin, Taxol and Caelyx.  She has a low probability to benefit from further treatment, but she is not prepared to give up, and would like to try something else.

I have given her information on Gemcitabine, which is a drug that can be given alone, and we have not tried before.  I have organised a palliative care referral.  I have recommended that she starts Oramorph and Dexamethasone for capsular liver pain.  She has expressed her desire to be referred to a phase 1 clinic at the Sarah Cannon Institute, and I have organised that today.

We are planning to review her again in 1 week for consent.

Dr A M

Consultant Medical Oncologist

Referral to Sarah Cannon Research Institute

93 Harley Street

London W1G 6AD

I would be most grateful if you could consider this lady for a phase 1 trial.  Her previous treatments are summarised above.  She has recently participated in a phase 1 trial at our unit with weekly Taxol and a TOR inhibitor, and unfortunately has progressed in the liver and spleen.  Her liver disease seems to be refractory to Carboplatin, Caelyx and weekly Taxol; and she is becoming symptomatic with subcapsulsar liver pain.

She is otherwise well, and her performance status is 1; although she has lost some weight.

She has had genetic profiling performed by the phase 1 unit, and the only detected a variant TP53: T.Gly266valc797GCOSM10958.

I have proposed that we try a course of Gemcitabine, which we have not tried before.  She is very interested in pursuing other possible targeted trials, and I am writing to see whether she could be considered either for immunotherapy or any other phase 1 trials.

I enclose a copy of her last blood results and her NGS analysis.

Thanks very much for seeing her.

Dr A M

Thu 28 Jan

Sweating in the night again.

Started taking the steroids this morning.  Pain-free all day.  Feeling hopeful that the steroids might stop the pain.

Started the day pain-free, sorted out some clothes and did some organising, then the pain came back with a vengeance.  Took pills at 4pm and 9pm to no avail.  Tried exercising, some of which – the yoga exercises – helped a tiny bit, but by the time Re came over this evening it was excruciating.  I wish R didn’t have to see me in this state, but it was very comforting to have him here.  I can’t cry these days because when I do the choking thing starts to happen, so I have to stop myself.  I really do seem to be in hell.  There is no outlet for my tension apart from biting sarcasm – unfortunately directed at R as he is the only available victim.  I think I need to start doing yoga every day, before I snap.  Shall I take some morphine now?  It’s been four hours since I took Co-Codamol ... I’m afraid to take it because it’s my last resort – what if it doesn’t work?  Also it slows the breathing – I could die in the night.  In a way that would be a good thing ... but I don’t feel ready somehow (I’m still hoping I suppose that the pain can be stopped and I can finish my novel and autobiography.)

Sat 30 Jan

Took a third of a teaspoon of morphine at 3:30am, then went to bed.  It worked – at least it knocked me out, which is just as good.  Morphine is clear and tastes nice – sweet, tempting and seductive.

Later, had a big breakfast and took my steroids.  Amazingly I wasn’t constipated. I thought I would never shit again, after all the pain-killers yesterday.  I felt the pain creeping back as the afternoon advanced, so took two Cocodamol at 4pm and went back to bed to read ‘UFOs’. 

R is coming over again at midnight tonight, after work.

Sun 31 Jan

Yippee, not constipated again today.  Is it because of the steroids?  They also allow me to take painkillers without needing anti-sickness tablets.  It’s 5:30pm and the pain is returning.  Just took two Cocodamol but not sure they actually do anything.  Ow.

My hair is still a pathetic haze on my head.  All that remains of the pixie cut from a couple of months ago are some longish wisps.  Not sure if some short hairs are new or just the old, knackered bits broken off.  R said he thinks it’s fluffier lately.  Still looking way too bald to go out like this in public.  When is the bastard going to start growing again?  It seems to be taking longer than last time, but maybe the Caelyx followed by weekly Taxol has been more devastating.  Worried it won’t grow back at all, like Doreen’s.

Had another night sweat last night, enough to have to change nighties (I’m wearing my long nighties again now).  Also there’s a smell that bugs me.  I can smell it on the sheets and pillow case.  Kind of a weird, sickly smell that disgusts me.  I can smell it especially when I’m on the toilet having a poo.  Is it the drugs or is it that my liver isn’t working properly now or is this what cancer smells like?

My body is completely wrecked.  My arms and legs look like sticks (I lost half a stone over the last couple of months) except that my right leg (and right buttock) still look pleasantly plump because of the lymphedema.  J and R have both joked that I would look better with lymphedema in both legs.  My left buttock looks like a balloon with most of the air let out of it.  I don’t feel as upset about it as I would have in the past though, it’s like I’m stepping outside my body these days, and just living in my head.  It would be nice to have hair again though, so I can go outdoors without a woolly hat on (they’re so hot), and because I don’t feel like me without hair.  I noticed a couple of weeks ago that I’m dressing like Mum these days, and she is 86.

Mon 1 Feb

Actually went shopping in town with R, jeans for him from Primark, finally spent my £30 Next gift voucher (more jeans for R), pillows from John Lewis, a tote bag from Accessorize and the grand finale, a curry in Govindas with a big piece of cake and a rose milk drink.

Tue 2 Feb

Pain

Pains started in liver since last night and this morning becoming horrendous.  R had to go to work early and after he left the pain got worse and worse, so I phoned everyone: M S (left a message asking if I had been referred to Pallliative care nurse yet), then an on-call oncology reg, who gave me advice to take more morphine I think, then the GP.  I asked if they still did visits and I think the receptionist said yes, but somehow I ended up talking to Dr McC on the phone and she told me to either go to A&E (I said I couldn’t imagine being able to do that) or she would call me back and see if I needed to come and see her in an hour.  She called me back after an hour and told me to come into the surgery in another hour (I guess she had to have her lunch first).

Staggered to GP surgery at 2:30pm, in tears with the agonising pain by then.  Doc McC asked me lots of questions and prodded my abdomen (she thought it was very hard – suspicious for some kind on perforation maybe) and then she called an ambulance.  I lay on a couch in one of the nurses offices until it arrived and took me to St Thomas’s, but I got them to stop off at Villa Road so I could put all my overnight stuff into a back pack (I didn’t want to wind up in hospital without any clean knickers or my toothbrush again.  I didn’t even have my mobile to call R).  After getting my stuff, I seemed to be in the ambulance a long time while they faffed around doing obs and trying to find equipment that worked properly.  The girl put a cannula in my arm and gave me some IV paracetamol.

When we arrive at A&E, they told me to sit on a hard chair in the corridor, while I waited to be seen.  There were two little drunk guys there who smelled of booze, and one was looking after the other.  I staggered about, sat in my chair and wept loudly, and the little drunk guy who was the carer, tried to get the nurses to come and help me, saying, “She’s in a bad way.”  I think I must have a low pain threshold.

They put me in a treatment room and soon I got some IV morphine, which worked fairly soon and I was able to relax a bit.  It didn’t totally take the pain away but seemed to flatten it to a bearable level.  At some point a young, black nurse was in the room and I found myself telling her the whole life history of my anxiety problems and asking her if she thought of people with anxiety the same way she thought of psychotic people.  After a few minutes, I noticed her suppressing a yawn and it dawned on me that I was probably rambling away because of the morphine and the poor girl wanted to get on with her work and wasn’t at all interested, so I apologised and said I was ok to be left alone.

A couple of doctors came and went, first a surgical one, who said there was nothing acute causing the pain, it was the liver mets and would be ongoing.  Then some sort of young oncology trainee called Mo, who had Afro hair and was very kind and attentive.  At first sight I thought it was V, because of the Afro.  After that I got taken up to the Acute Admissions Ward (I feel like I’m an old hand at this now).

On the ward they put me in a side room because the bed on the ward wasn’t ready they said, but they put a sign on the door to say to leave it open (I had rambled to more people – Mo I think -  about my agoraphobia, choking episode etc. etc and they were trying to accommodate me, which was nice).  The room was nice, very clean, with a private toilet/shower room and a big window.  Strangely, I can’t remember the view.  I think it may have been grey buildings and railway sidings??

I felt alright because of the morphine and had a really good night’s sleep.  It was so peaceful in there, no bleeps sounding or patients snoring.

Wed 3 Feb

Discharged from Acute Admissions Ward

The next day a Pharmacist came and explained my prescription : one 12-hour release morphine tablet twice a day and liquid morphine if there was a breakthrough of pain.  Then doctor and her group came and saw me on their ward round.  The doctor wanted to keep me on steroids long term and I said no, but I think I agreed to everything else she said.  She wanted to discharge me and I would keep my appointment in Doc M’s outpatient clinic, which I have today at 2pm.  At first she wanted me to go home and come back, which was obviously a rubbish idea, then she agreed to let me stay until my appointment with Dr M.

I had texted R and he arrived about 11am.  I had ordered turkey stew and roast potatoes for lunch and it arrived.  It was very nice to talk to R and eat lunch, so nice that I think morphine is now my best friend!  It obviously cancels out my anxiety and turns me into a laid-back person.  I used to feel the same way about alcohol when I was 20 - it made me fun and relaxed.  I don’t think it could be a good thing to be a morphine addict however, no more than an alcoholic, but perhaps I will have to be on morphine for ever now, unless the cancer miraculously shrinks.

Discharge Summary 3.2.16

Presenting Complaints:

Abdominal Pain

Clinical Summary:

Stage 3c high grade serous carcinoma of the ovary with liver mets under care of Dr M at Guys.  Recently on TaxTorc clinical trial.  Recent CT showed necrotic liver mets.  Pain attributed to intra-abdominal malignancy.  Discharged home with 5mg MST bd and prn Oramorph, with oncology appt at Guys this pm.

Doc M’s Clinic

Clinical Oncology, Lower Groud Floor, Lambeth Wing, St Thomas’s

R came with again, which seems to put everyone in a much more relaxed mood.  Dr M was very obliging again.  I told her I was constipated and she showed me all the impacted faeces in my bowel on the CT.  I can’t remember what we talked about this time.  It was all very co-operative from both sides.  I signed the consent form and then Dr M agreed that I could claim PIP allowance in form DS1500.  This is the benefits form that says it’s possible that I could die within six months, so they give me extra money.  It doesn’t really mean that Dr M thinks I will die though, it just means I could.  They don’t reassess you for three years – imagine if I was still here – R would have retired and sold his flat!  There could be amazing new treatments!

Dr M’s Clinic letter

3.2.16

I have reviewed G in clinic today.  Following our consultation last week, she has been experiencing more right-sided pain.  She has been seen in the A&E department today and no other significant cause for pain has been found.  The pain has been attributed to liver capsule pain and she has taken oral morphine.  Her other problem is constipation, and she has been recommended to take Laxido.

Her performance status is 1.

She has signed informed consent for Gemcitabine and we are giving her a schedule of days 1 and 8 every 21 days.  We have already pre-booked her treatment for later this week.  We are planning to review her again in clinic at Guy’s in three weeks.

Dr A M

Fri 5 Feb

Gemcitabine No.1a

After a couple of painful stabbings by a young nurse called E, she brought in M, who is an Indian-looking nurse who has been cannulating patients for 15 years and is an expert.  Apparently it simply comes down to holding the vein in place while you inject it.  He said he is going to be teaching a class in it starting tomorrow.  He says he will be in every Friday too.  The chemo only lasted 30 minutes + 10 minutes so was an absolute breeze.  There are no antihistamines or steroids required either, although I took my three Dexamethasones today as prescribed by Dr M.

She said to request a Ca125 next time I go for bloods (next Friday, chemo day).

Mon 8 Feb

L, Palliative Care Nurse – home visit

Bored with writing this journal!  I think R and I should get away for a weekend break in France or something.  This journal is becoming one of those things that allows me to avoid doing anything creative, like the novel.  Why am I even writing it?  I suppose it helps me order my thoughts and enables me to look up what’s been happening medically, but I never intended my whole life to be about cancer.  I pasted it all into a file called ‘Gina’s Ovarian Cancer Diary’ the other day, with the intention of changing all the names and putting it online, then putting a link to my Ovacome profile, but it’s an enormous amount of tedious work to anonymize and edit it all.  But why am I writing it if I’m not going to share it?  I think I will start working on it, and if I feel like it’s too exposing, I could wait until I’m about to snuff it before putting it online.

But back to L the Palliative Care Nurse today.  She is a lovely girl who cares about her patients and goes around her patch on foot visiting them.  She has lots of cancer patients but also COPD, motor-neurone, cardiac patients and others.  She was fun and chatty and we talked about our lack of religious faith, karma and hell among other things.  She listened to my big moan about lymphedema and the lack of help from the lymphedema nurses.  She said I could get counselling and massage with the Dimbleby and I told her all about having worked at the Dimbleby and doing massage for the ward nurses and then about having had agoraphobia and about working at the Maudsley, so she practically got my life story.  

She was a marvellous listener.  She asked me about how R was coping and we had a long chat about partners.  She said her patients tell her all the time that what they hate most is that their partners have to be dragged through it all and she said if he ever wanted to see a Palliative care counsellor with the Dimbleby, she could arrange it [he didn’t]. 

She said she is an intermediary between the oncologists, the GP and me as she has all my medical and medication information to hand.  As I’m OK right now, I am ‘discharged’ but I can be reactivated just by phoning her.

Her medication advice is that if I get ‘breakthrough pain’ I would take half a teaspoon of liquid morphine and if that doesn’t work after about an hour, I would call her (Mon-Wed) or her partner L (Thu and Fri) or whoever is doing on call out of hours, and I would get a call back within about five minutes to advise me about upping the dose [it can be up to 20 mins actually]. 

Wed 10 Feb

M S, Palliative Care, Ground Floor, Borough Wing, Guy’s,  9:15am

Told her about how tense I feel talking to women friends, one-to-one; about being sensitive to things like clothing labels, cannulas and sirens and about loving science and nature. I told her I am not connected to my body – I just live in my head.  Reading and writing is all I really care about now. 

I get 50 minutes to talk, and at the end she does a little summing up of how I’m not such a useless person as I think I am.  We made another appointment for a month’s time, as that’s all I feel I need. 

Fri 12 Feb

Gemcitabine No.1b

R came with.  I had to arrive at 11am for bloods (I was 25 minutes late because I couldn’t get myself together this morning – fat leg, uncooperative bowels).  Being late didn’t make any difference though.  Asked for Ca125 to be included in bloods, as Doc M told me to.  It hadn’t been ordered, but the Phlebotomist did it.

Bloods ok, so chemo started about 1pm, on schedule.  Asked for M to put the cannula in and thankfully they went and found him.  He got it in first time, into what is usually my most obstinate vein, in the left arm.  What a star!

Mon 22 Feb

E, Lymphedema clinic

R came with me, for support.  I told her that I found it impossible to put on tights over stockings, as the bottom pair just rucks up. She didn’t suggest any solution to that.  I told her I had bought a pair of grade 2 stockings online.  I sent R out of the room while E was measuring my legs, as I feel so mortified by the way I look.  My right leg is now 28% bigger than the left one.  She said we couldn’t go by this measurement because I have lost weight, so my left leg is thinner than before [but surely that doesn’t make any difference, because my right leg will also have lost weight, underneath the swelling??]

I asked her about MLD and bandaging and grade 3 tights and LVA, but her answer to everything was, “No.”  She said MLD therapists wouldn’t want to massage someone who was having chemo (because they would get chemo on their hands??).  She said the clinic wouldn’t be able to help with getting a referral for LVA or with getting funding.  She said grade 3 tights would be wrong at this stage.  I think she dismissed bandaging along with MLD, as I think they go together.  Not sure about that.  I asked for my second pair of tights that I’m entitled to [R and I had agreed that getting them was our bottom line today] but she even said no to that.  She said the size of my legs would be fluctuating too much.

She said the cause of the swelling (the Gemcitabine) was stronger than any of the remedies and that could be offered and that my leg would get worse.  I left the appointment feeling very angry and depressed.

Thu 25 Feb

Dr M’s Clinic, Guy’s

Saw a registrar this time.  Got two latest Ca125 results.  I asked for the tumour ID print-out but she couldn’t find the document, so she waffled about doing something later, which I forget.  Must chase again.

Got a repeat MST prescription (12-hour morphine tablets).  I asked her about the COC cocktail and she told me to find out from COC if it is compatible with Gem, then to give all details of drugs and doses to Doc M and ask for a pharmacy check.  She confirmed that chemo days are Monday from now on.  Got bloods done before seeing the reg.  I also asked her about having MLD massage and she waffled a bit – not sure what she was actually saying though, I think she didn’t know.

Dr M’s Clinic letter

25.02.16

It was a pleasure to see G in clinic today who was accompanied by her boyfriend.  She has been tolerating chemotherapy well, did not experience any nausea or vomiting, is eating and drinking well however feels that her right leg is slightly more swollen after chemo with a slight increase in size which is the only thing that is really affecting her mood and ability to exercise.  Her breathing however is now much better.

On examination her performance status is 0, her hearth sounds normal, chest is clear, abdomen is soft and non-tender, no LN palpable.  I am pleased to see that her Ca125 has responded to the Gemcitabine having almost halved, currently sits at around 790.  We will continue with cycle two of her chemotherapy and see her again prior to cycle three.  G has the relevant contact details should she require any further support or advice.

Dr H A

SpR in Medical Oncology

Nutrition and Dietetics appointment

After the Oncology clinic, I saw a Dietician (an Indian girl, who looked a bit under the weather and had a troublesome cough).  I can’t remember much of what she said now.  Something about getting lots of calories and that fat provides a lot more than carbs.  She explained how cachexia works, because I asked her.  Apparently it’s pronounced “cakexia”.  She seemed very knowledgeable about things.  She said to do upper body exercise (because I told her lower body exercise makes my leg swell up). I think she said it was OK to take weight-building protein powder.  She offered to refer me to a physiotherapist, for advice on exercise.  At first I declined as I’m sick of all these hospital appointments, but then I thought I might learn something useful and said yes.

Mon 29 Feb

Gemcitabine No. 2a

I was in the end bay again, which seems to be the ‘old lady bay’.  The nice Polish nurse (J) messed up getting the cannula into my vein (“this one has collapsed”) and I lost my nerve and asked if E (the dark-haired head nurse with glasses) could do it.  I think the Polish nurse was a bit offended.  Emma managed it on the second go.  Can’t remember anything else about this session.

Wed 2 Mar1

Call to LSN

I phoned LSN.  The woman seemed a bit chippy at first, when I explained that the clinic weren’t helping me, but I think she felt a bit sorry for me by the end, when I said I’d lost weight and the stockings were falling down on my thin leg.  I can’t remember what advice she gave.  Not much I don’t think.

Fri 4 Mar

Call to Care Oncology Clinic

S answered  and I only got to speak to her, rather than a doctor.  I asked if the cocktail could be taken with Gemcitabine and she said it makes it more effective.  She said they are not running a trial – it is a treatment.  I asked her about side effects from the cocktail drugs.  She said some patients get an upset gut from metformin and come off it.  Some stay on a low dose.  She said to try metformin for a week, then try metformin and the statin for a week, then try doxycycline for a week, then increase the doses.

She said to email the CNS to ask Dr M to send my recent blood results to C.O.C.  Give her their email address and fax number.  They especially need my renal and liver function results.

Mon 7 Mar

Gem No. 2b / Bloods at 1pm

E did my cannula again, and managed it first time.  I was in the old lady bay again – am I classed as an old lady now?  When R and I left, two of the ladies exchanged smiles with me, so that was nice anyway.

Thu 10 Mar

Another call to LSN

Phoned in desperation as I want to travel to Devon tomorrow and don’t know how to deal with swollen leg.  My memory of the call is very fuzzy, but I think the advice was that I probably wouldn’t get MLD, but she didn’t say there was anything wrong with getting FarrowWrap next Wednesday.  As far as tomorrow goes, there is no answer, but she agreed that trying two layers of stockings would be worth a try.  Also, I think she said I should try the GP for garments as I need to have a pair to wash and one to wear.  I complained about the lack of help from the clinic, and she said she hears this all the time.  I asked what people wear on their feet when their leg is wrapped, and she said those Velcro sandals.  She said I sounded too young to wear them, so I told her I am 57.  It was nice to know I sound young!

Thu 17 Mar

Dr M’s clinic

R came with me.  We saw a male registrar.  He said I will get a CT scan before Gem number 4.  He said he will print off my tumour ID report and my last blood results and leave them in chemo reception for me to pick up on Monday.  I asked him what my last Hb was, as I feel tired, but it was actually 9.7, not too bad.  I told him that the Lymph clinic can’t/won’t help with my leg swelling, and he asked the names of the nurses.  I’m not sure if he means to intervene with them.  I told him I have emailed M about taking Rikkunshito and about potentially starting the Care Oncology Clinic regime.  I don’t think he will intervene with either of those queries though, as they were directed to Dr M.

M’s Clinic letter

17.03.16

Pre cycle 3 Gemcitabine

It was a pleasure to meet Ms T with her partner in cliic today.  She is currently feeling well and has retained a good appetite and pain is currently under control.

I understand she is currently considering a trial drug combination suggested by a private consultant in Harley Street, however she is happy to wait for her mid-treatment CT result before deciding whether to go ahead with this.

We will proceed to cycle 3 of gemcitabine and see her again in 3 weeks’ time with the result of the CT scan.

Dr JB

Clinical Fellow in Medical Oncology

Mon 21 Mar

Gem No. 3a

Came to clinic on my own today, as it’s only a 40-minute infusion and don’t want Ronnie to miss work for that.  The Polish nurse (Z) did the cannula first try.

Tue 29 Mar

Bloods / Gem No. 3b

Came to clinic alone again.  My blood test got sent to St Thomas’s by mistake, so I had to have it done again.  I was there for five hours altogether (including lunch at a noodle bar, while I was waiting for the blood result).  I got angry with the delays in the end, and went up to the nurse and said, “Is it going to be much longer?  I’m getting stomach pains and I want to get out of here.”  My mini-meltdown sparked off minor grumps in the other two patients in the lounge, who had also suffered long delays.  One of the nurses said, “We’d all like to go home.”

Sat 2 Apr

CT, St Thomas’s

Remembered to drink 500ml of water before the appointment this time.  They don’t do the vile jug of aniseed water any more.

Wed 6 Apr

Doc McC

Told her at length about the lack of help from the Lymphedema clinic and showed her my DIY stocking/one-legged tights arrangement.  I said I feel such a mess.  She said she will call the palliative care nurses and also refer me to the Marsden Lymphedema clinic.  I have a feeling that won’t get me anywhere though, as they ‘didn’t receive’ her referrals last time.

Thu 7 Apr

Dr M clinic

R came with me.  We got to see Dr M herself, which always happens when there’s a disturbing CT result.  When we went into the room I said, “Hello Dr M.  You’re in a different room today.”  I’m putting into practice something I read which said that doctors respond better to patients who are friendly and don’t overload them. 

She told me my CT shows the liver mets have grown so we are stopping the Gemcitabine as it’s obviously not working.  Also, my blood test showed that my liver function is beginning to go a bit awry - I think she said the most important ones are ALT and bilirubin - so we are racing against time again, to get me onto a trial while we still can. 

There is another trial at Guy’s, under Dr S, called MOv18, that hasn’t been tested on humans before, but Dr M thinks it will take a while – maybe too long for me.  They have to test my 2012 tumour sample to see if it has folate receptor-alpha.  Even if I get on the trial, she said they are only trialling very low doses at the moment, so it may not be effective.  She got me the consent form anyway, and I signed it.

I asked her about an immunotherapy trial I saw on CRUK, called CA209032 which is ipilimumab (CTLA-4 checkpoint inhibitor) and/or nivolumab (PD-1 checkpoint inhibitor).  I don’t know which hospital it’s at – the CRUK web site just said ‘London’.  Dr Montes didn’t know about it (why doesn’t she know about these things?) She said the side effects can be awful – GI and lung inflammation etc.  She said she worked on this trial at the Marsden (I didn’t know she used to work there).

She is going to write to UCL to chase up her referral to a Dr A, that she sent on 6^th February (I am supposed to have heard from them by now, but I haven’t).  It turns out that my tumour ID analysis that I had done last October, was actually sent off to the Sarah Cannon Institute at the time.  I didn’t know that, I thought it had been done at St Thomas’s.

Also, she is going to refer me to Dr B at the Marsden because I said they have immunotherapy trials coming up.

She was very friendly today, laughing with us, and she held my hand at the end.  Sometimes I really like her.  Our next appointment is going to be in two weeks, when she will phone me, to update on the referrals.  She has put a blood test request on the system for when I need one.

Despite being calm and jolly with Dr M, I was gutted inside.  The final chemo has been tried and has failed.  I should be happy that I can’t have any more chemo, since I don’t enjoy being poisoned, but drug trials are such a lottery.  I could barely listen to R on the tube coming home, I just wanted to curl up under the duvet on my own to absorb it all.

Dr M’s clinic letter

07.04.16

G has completed three cycles of Gemcitabine on a Day 1 and 8 protocol every 21 days.  Her adverse events have been constipation, fatigue and swelling of the right leg.  She is otherwise well and her performance status is 1.

On examination there is a small left supraclavicular node that is less than 1 cm in size.  She has tenderness in the right upper quadrant and lymphedema of the right leg.

Her Ca125 is 1491.

She has had a CT scan that shows progression in her liver disease, the peritoneal disease is stable.  The lung changes have resolved, suggesting that they were inflammatory.

We have reviewed these results.  In view of the progression of disease, I have stopped the treatment today.  The failure of multiple lines of treatment to control the disease means that her disease is chemo-refractory.  G is very keen to be considered for any phase 1 trial.  I have taken her consent today to study her tumour biopsies for the presence of folate receptor alpha.  Her blood is correct with minor alteration of the liver function, which will not preclude any further treatment.

She has asked me to write a referral to the phase 1 unit, and I have done a referral to Dr B at the Royal Marsden and Dr A at Sarah Cannon.

Dr A M

Consultant Medical Oncologist

Sun 17 Apr

Ugh.  Feeling rough.  I put off seeing R on Friday and Saturday, as I’m too exhausted.  Pains in my liver this evening.  The morphine doesn’t seem to be working so well.  Lately I’ve been alternating between diarrhoea and constipation, so maybe the morphine isn’t getting absorbed.   It’s 11pm but I think I’ll take my midnight one now ... it usually takes over an hour to kick in.  I have so much writing to do but I can hardly keep my eyes open.  I just sleep or lie on the sofa watching TV. My abdomen feels bloated so I guess the cancer is growing like crazy now I’m not on any treatment.  I try to build up my arms by lifting weights, but it doesn’t make any difference – they still look like twigs.  

I wish I could die suddenly, without having to go through the wretched part first.  I wonder if Dr M will have anything for me on Thursday – she is going to phone me to update on whether she’s found a trial or not.

Thu 21 Apr

1^st M phone consultation

Nothing yet.

Mon 2 May

John Lewis with R, to pick up new computer – a Lenovo all-in-one.

Thu 5 May

2^nd M phone consultation

M S called and said they haven’t got a trial for me yet.  The Marsden have passed my notes on to their Phase 1 unit though, and the Sarah Cannon Institute can refer me to UCH Phase 1 unit (M says she will find out if this is different to the SCI).  The MOV-18 tissue sample result is not back yet.  I can’t believe they can’t find a trial for me.  If they wait too long, my liver will be shot to bits, and I won’t be able to do any trial at all.

Dr B to Dr M

04.05.16

Thank you for your letter updating me on Ms T.  There are a couple of immunotherapy studies and folate receptor targeted trials which are due to open later this year.  However, at this current time we do not have any trials on the Gynaecology Unit which would be appropriate.  In the next few months the Pazofos (Fosbretabulin and Pazopanib) trial should reopen.

I have taken the liberty of passing on the referral to my colleagues on the Drug Development Unit.  There are a number of Phase 1 clinical trials with ovarian cancer cohorts.

I would be happy to see her in a few months onwards with regards to the Phase 11 clinical trials opening on the Gynae Unit.

Thanks for the referral and I hope this is helpful.

Dr S B

Consultant Medical Oncologist/Gynaecology

Anniversary

It’s me and R's 8^th anniversary today, but I was so depressed after the call from M that I couldn’t even fake good humour.  R made me a card - a new thing which makes me feel guilty because I haven’t done one for him - and it had an emotional poem on it that he wrote.  Cruelly, I said I didn’t want to cry and get emotional, and that the poem was actually about me dying and how much he was going to miss me and I didn’t want to think about that shit.  Later, he was reminiscing about our past holidays, which made me feel even more depressed because I’m too ill to go on holiday now.  I said, “Well, that’s all over with; now we’re just waiting for me to die.” Then I said, “You don’t have to be here, it’s sunny outside – you should go out and see people and get some sun and have fun.  You won’t get any fun here.” R joked that I should put a sign on my door, saying ‘No fun here’, which almost made me laugh.  Poor R!  It will be better for him when I’m out of the way, and he can start having a nice life again.  I don’t know why I’m trying to drive him away, if he actually left me I would be devastated.  I think I must be very depressed. 

Thu 12 May

3^rd M phone consult

M called.  There is no result yet from MOV-18 tissue sample test.  M will chase Heather from research team to find out why.  Even when result is back, it could be a couple of months before I could start (there is a waiting list).

M also said Dr M hasn’t yet referred me to UCH Phase 1 unit.  I lost my cool when she said this, because I thought I had been referred weeks ago.  I said I feel like they are leaving me to rot because I’m a hopeless case and they want to save money for the NHS, then I got a grip and said I’m worried because if there is nothing on offer from the Marsden, there will be another long wait for UCH and I’m running out of time.  M said she will call back.

M called back and said Dr M doesn’t want to refer me to UCH until we know if the Marsden have anything.  She said she had emailed Heather but there is no response – she thinks H must not be there today.

Fri 13 May

Drug Development Unit, Royal Marsden, Downs Road, Sutton, Surrey SM2 5PT

Got up at 5:30am, as appointment at 9:30.  Train at 7:30 from Victoria to Belmont station, then a 15-minute walk.  I got there an hour early, which turned out to be pretty good, as I got my blood tests and ECG done really quickly, before things got busy.

The first doctor I saw had a difficult Irish name.  She came into the room just as I had finished checking my teeth for banana residue, so I may have looked a tiny bit flustered.  She said, “Are you OK?” and I said yes.  Then she peered at me with a concerned look and asked, “Are you nervous?” I smiled and said no, using every ounce of energy I could muster to look as relaxed as I possibly could without actually lying on the floor and lighting up a joint.  I found her questions alarming because they made me wonder if the damning ‘Very Anxious Patient’ alert had travelled to the Marsden with me.  I have to make a good impression with them.  She told me about phase 1 trials in general, saying that they might not work.  She was trying not to get my hopes up I suppose.  She said they had 40 trials going on, but only a few are for ovarian. Then she went out to get Dr U B (as distinct from Dr S B).  They were both hand-shakers, which was nice. 

Dr B asked me about my general health.  I said I wasn’t feeling very well (bloated and tired) which might have been the wrong thing to say, but I wanted them to know I need treatment asap.  Apparently my ALT isn’t too bad yet, so that was a big relief.  He asked if I am able to go out and about shopping etc. and I said yes.  When we were discussing bloating, he said ovarian cancer patients are better off eating a low fibre diet.  I said I would bear it in mind. 

Someone is going to call me on Wednesday, after they have checked the rest of my blood tests, to let me know if they have anything for me.  I think Dr B said they might have to test my old tumour sample at some point?  I have another appointment for two weeks’ time, but Dr C said there will be no point coming to it if they don’t have anything for me.  I get the feeling I’m not wanted, but maybe I’m being paranoid, or maybe Dr C is just a down-beat person.

Marsden clinic letter

13.15.16

Many thanks for referring Ms T to the Phase 1 Clinical Trials Unit for consideration of a Phase 1 Trial.  This lady is linked in with a number of Units including the Phase 1 Unit with Dr J S at Guys and St Thomas’.  She was already part of a TAX/TORC Phase 1 clinical Trial and has recently been consented for the Maeve 18 Phase 1 Clinical Trial.  She has also been referred to Dr S B, Consultant Medical Oncologist at the Royal Marsden Hospital for consideration of Phase 2/3 Clinical Trial and she has also explored the Sarah Cannon Institute and has been informed there are no Trials available at present.

She has been through a number of lines of chemotherapy and unfortunately most recently had progressed on Gemcitabine.  She has had genetic profiling under Dr S before with a P53 mutation only identified.  For this reason we have not consented her for molecular characterisation under our Care.  She is quite keen to get started early on treatment and I have explained to he4r that if we do identify a Trial that is suitable for her that there would be delays in getting her on Trial for up to 6 weeks.

Furthermore I have impressed upon her again the uncertain nature of Phase 1 Trials even though she has partaken in one before that there can be unexpected side effects and toxicities as well as significant amount of time invested in attending the Royal Marsden Hospital.

Furthermore I have reminded her that we only see a clinical benefit rate of about 10% in all cancer types across all trials.

We have arranged to see her back in Two weeks time and we will discuss her at our Patient Allocation Meeting on Tuesday and we will get in touch with her with the outcome of that meeting.

Dr D C

Clinical Research Fellow

Drug Development Unit

Later: call from M

M said she will forward an email reply she got from H, which explains the hold-up with MOV-18 tissue samples.  Everyone’s sample is being held up, apparently.

I told her that it’s a two-hour journey to the Marsden in Sutton and that’s it was gruelling today because I don’t feel well.  I said I wish I could be referred to UCH as well as the Marsden, because it’s much closer and if they had a trial for me, it would be easier to go there.  However, I stressed that I want to continue with the Marsden too, in case UCH have nothing.  M said she will ask Doc M on Tuesday to refer me.  She said she had forgotten that Marsden Phase 1 trials are at Sutton.  She said Doc M only held off referring me in case Marsden offered me a trial.  I said they haven’t offered anything specific yet but they are going to call me on Wednesday.  She asked me to let her know what they say.

Mon 16 May

Excruciating pains in liver during last night and today.  Took three shots of 1.25ml Oramorph during the day.  I think I caused it by doing stretching exercises yesterday.

Lymphedema clinic, Guy’s

Horrible pains in liver still, though not as crippling as yesterday.  Took another shot of Oramorph this morning. I was 10 minutes late for my appointment.  It was M today.  I had to wait 30 minutes while she caught up with some work, but I didn’t mind as I was reading the Metro.

M gave me a big smile and made a bit of small talk about the weather, so the session started off well, despite the garment having been made with two legs instead of one (it will have to be sent back and done again).  She measured my leg and it has reduced from 21% bigger to 18% - Yay!  She checked Esta’s measurements and they all seemed to be correct.  She said I will get two pairs of one-legged tights, one to wash and one to wear.

Things started to go wrong when I tried to put on the tights.  The ‘normal’ leg was so incredibly tight that I didn’t think I would be able to get it off again, if I ever managed to get it on.  Part way up I said, “I don’t think I can do this – it’s so tight – I’m actually feeling a bit panicky.”  I tried the fat leg instead and it went on fine.  Then I tried the thin leg again, and got it on, so we were able to check the torso fitting.  I said it felt a bit tight round the bum and waist, and also a bit low – like it might start to fall down.  I said maybe the waist needed to be a bit higher in order to stay up but she disagreed because she thought I would find it too tight and I said not if you make it loose and she said she couldn’t because it had to be fitted to my actual waist measurement (I KNOW it doesn’t because Medi told me on the phone that it can be any measurement we ask for).  We went round and round in circles, both of us speaking very slowly and reasonably, as if we were trying to communicate with an unreasonable idiot.  She didn’t want to change anything.   She said I kept moving the goal posts.  I said I thought this ‘fitting’ was supposed to be a chance for me to try on the garment and tell her if anything didn’t feel right.  I said, “Do you think I’m being difficult on purpose?”  She said, “No, it absolutely isn’t that.”  She said she thought I would be better off getting something off the peg, maybe a Haddenham’s garment (a disgusting monstrosity I tried on a year or two ago and rejected).  She had me cornered – I had to plead with her to stick with the made-to-measure.  She said ok and that she would have the garment posted to me when it was ready.

As she was filling in the order form, I thought, ‘how can I get her to do this the way I want?’  But I couldn’t think of any way.  I said, “I’m not very good at communicating, but I’ll have one last go,” which must have sounded really offensive, then I said something like, “Can’t we make the waist a little bit higher but not too tight, so it can be comfortable and stay up?  I want to get it right, otherwise it will have to be changed and you will accuse me of being difficult.”  She said she couldn’t and trotted out her side of the argument again, which made no sense to me.  This threw me over the edge, so I wept and used the ‘f’ word.  I said, “Why is this clinic so exhausting?  Why does it always turn into an argument?”  She said she was going to ‘Take five,’ and left the room.

After a few minutes she came back in with a nurse I didn’t know.  I can’t remember what they said her name is.  The new nurse was a breath of fresh air.  The things she said made sense and we soon reached an agreement – basically what I had been asking for.  She asked me to try on the Haddenham’s so that she could see where things needed to be different.  I agreed and we could see immediately that they didn’t fit at all (put that in your pipe, M).  The waist band came up to my chest and some strange baggy situation was happening at the top of the legs.  The new nurse did a load of waist, torso and leg measurements that E and M hadn’t bothered to do.  She was marvellous.  M filled in the measurements on the form.  I hope she doesn’t mess them up on purpose because she hates me!  The new nurse said I had unusual proportions and I said, “I’m a peculiar shape all round.”  She said it must be hard for me to get trousers to fit, and I said, “I’ve never found trousers to fit, only stretchy jeans.”  As things drew to a close I thought M might feel humiliated in front of her colleague, so I said, “M, I’m really sorry I got upset before, it’s not you, it’s me – I’m having a really bad day.”  The new nurse said, “That happens to us all sometimes.”  She said I will get a call from J to book another fitting.  I went home feeling humiliated and sickened, but hopeful that I might get some one-legged tights that fit.  We’ll see what happens.

Lymphedema clinic letter

16.05.16

Ms T attended the lymphoedema clinic for review and fitting of made-to-measure compression hosiery on 17^th June 2016.

The Following is a summary of outcomes of assessment, management plan and advice provided.

Management implemented by patient since last review

Patient attended for fitting of made to measure garments.  Last issued with Juzo soft pantyhose in December 2015.  When last seen in the clinic in April 2016, patient had purchased her own hosiery and shorts as she had been unhappy with compression hosiery issued by this clinic (a pair of tights instead of one-legged garment had been made).

Assessment findings, and progress made since last review

On examination lower limb volume had remained relatively stable compared to measurements recorded in April of this year.  Total excess had reduced from plus 21% to 18%.

Patient agreed to try the pantyhose to enable me to determine which aspects of the hosiery were good fit and where alterations required to be made.

Ms T proposed several different alterations she would like made to the compression garments, however, I was concerned that these alterations would render garments ineffective in terms of providing appropriate compression.  We explored a few different options prior to submitting new measurements to the hosiery company for re-making of the one-legged pantyhose.

I am aware Ms T has changing health issues that makes wearing compression garments uncomfortable, however, our aim is to provide her with garments that are effective and comfortable for her to wear.

It is not unusual for patients to experience fluctuation with swelling associated with lymphoedema, however, made-to-measure, due to the elastic nature of the fabric, should be able to accommodate minor changes.  At the present time fitting with made-to-measure is an appropriate option as a line of treatment for Ms T.

(Where patients develop significant fluctuation in swelling, made- to-measure hosiery is generally not the first choice of treatment and therefore, other options are discussed with the patient as appropriate).

Plan for further management

The patient will be contacted for fitting of made-to-measure garment.

During the assessment 16/5/16 Ms T expressed dissatisfaction with the service provided by this clinic.  I note Ms T was assessed at the Royal Marsden Lymphoedema clinic on 3^rd June 2016.  I have liaised with Mary Woods (Specialist Practitioner) and understand that a telephone consult has been agreed with Ms Thomas.  I understand care has not been transferred to the Royal Marsden and Ms T currently remains under the service at Guy’s Hospital.

Signs and symptoms indicative of cellulitis and need urgent assessment by GP

1. 1.       Increased swelling with associated tenderness or pain
2. 2.       Skin becomes pink, blotchy, red
3. 3.       Affected area feels warm or hot to touch
4. 4.       Raised temperaturte
5. 5.       Feeling unwell with flu-like symptoms
6. 6.       Burning sensation in the tissues

Some or all of the above can be present and often associated with triggering factors such as broken skin, trauma, and infection elsewhere in the body.

For advice on appropriate management please refer to the British Lymphology Society Guidelines on the use antibiotics in cellulitis associated with lymphoedema, at www.thebls.com/consensus.php

Support needed with ongoing management in the community

No action required at the present time as the patient has been fitted with compression garments; their progress will be monitored prior to making any further recommendations about this line of management.

Alert Symptoms that require contact with the oncology team:

1. 1.       Development of a new lump
2. 2.       Increase, worsening pain that is not related to a musculoskeletal problem or other identified underlying pathology
3. 3.       Sudden increase of swelling without obvious triggering factor (like cellulitis, trauma, infection, infection or inflammatory processes) despite following daily programme of care.
4. 4.       Reduced range of function and movement and/or sensory changes that are not related to a musculoskeletal problem or other known underlying pathology.

Alert Symptoms that require contact with the lymphoedema team

1. 1.       Compression garments are not a good fit any longer or are causing problems
2. 2.       Lymphedema is not well controlled
3. 3.       Recurrent episodes of cellulitis
4. 4.       Changes regarding general health or mobility, that limits ability to manage lymphedema independently.

Please do not hesitate to contact the clinic should you have any questions regarding the information outlined above.

For further information of lymphedema and its management please review the BMJ Learning module for chronic oedema and lymphedema at http://learning.bmj.com/learning

M H

Clinical Nurse Specialist

Wed 18 May

Call from Marsden

Dr C called.  She said they had only one suitable trial, an ATR inhibitor + carbo, but I’m not eligible because my ALP is too high.  She said I should switch to plan B.  I said there is no plan B.  She said there are seven? Hospitals competing for three spots on each phase 1 trial.  She said they are drug escalation studies.  She said they will discuss my case again next Tuesday and someone will call on Wednesday to say if they have anything.

Thu 19 May

Call from M

M said that Dr M doesn’t want to refer me to UCH because she’s worried I’m not well enough to go on a trial.  I had to make a huge effort to stay calm and said I would like to be referred urgently to UCH.  I said I didn’t want to give up yet, even if Dr M had given up.  It felt like M was on my side.  M said she will ask Dr M and call me back later today [she didn’t].

Fri 20 May

Call from M

M called and said Dr M had agreed to refer me urgently to UCH.  M said she will ask Dr M’s PA, L D, to chase her to make the referral.  I gushed with gratitude to M – it’s fantastic to know Dr M has at least agreed to refer me (although it would have been better if she’d done it weeks ago).  I also have an appointment in the M clinic for next Thursday.  I think M said they want to check my bloods to see if I’m fit enough for trials.  I wonder why can’t they just ask the Marsden for their results? Maybe they want check that I can still totter around too.

Sun 22 May

My abdomen is so swollen, It’s so uncomfortable/painful, plus the lymphedema seems to have spread across my whole lower trunk.  I wish I could have some chemo.  What if I’m not fit enough for trials?

Wed 25 May

Marsden phoned.  I was supposed to go to the hospital – oops.  Somehow I thought it was next week - I thought they said to keep my appointment only if they had a trial for me, but no-one had said I had a trial. 

Anyway, they do have a trial, Genmab701.  It’s an antibody-drug conjugate.  The idea is that an antibody delivers a huge dose of the chemo (Humax-TF-ADC) preferentially to the cancer cells, so zapping the cancer but with minimal side effects.  However, in practice, some doesn’t attach, and some falls off, so it’s not that effective after all (only about 10%) and you get the usual horrible side effects, including peripheral neuropathy and hair loss.

First they have to do an ultrasound to find out if they can take a biopsy (they are pretty certain they can in my case) then if they find I have the ‘tissue factor’ I can go on the trial.  I have an appointment at Sutton next Wednesday, 1^st June.

I said I would like to go on the trial and I think they said they are going to post me a consent form??

The contact person is Dr M C-P

What to do?  Sutton is a gruelling journey and I don’t want to lose my hair again.

Thu 26 May

Dr M’s clinic

Ugh, a typically depressing appointment.  Dr M thinks I should accept the Genmab701 trial because my liver function won’t be good enough for any trial if I wait.  There are two people ahead of me in the queue for Mov-18, which translates to about an eight-week wait. So tantalisingly close. 

Dr M examined me on the couch.  She could feel my liver has expanded to several inches lower than it should be.  What a freakish idea, it’s no longer protected by my ribcage.  She doesn’t think I have ascites, she said she could just feel swollen liver plus air in the bowel.  I mentioned how the lymphedema seems to have spread to my entire lower abdomen now.  She said the cancer could stop my body processing protein properly, or something, and that could cause it (like it did with Laurie).  My left leg hasn’t swollen up yet though.  I hope it doesn’t.  She said I seemed better than she expected.  She suggested I take steroids again, to get some fake energy, but I declined.  I don’t want my muscles to get any weaker.

I offered her Dr C-P’s contact number, but she didn’t seem interested in it.  She agreed to chase my UCH referral.  I hope she does.

Felt more and more ill on the way home, uncomfortable, weak, exhausted.  How the hell am I going to travel to and fro to Sutton?  It’s impossible.  But if I say I can’t do it, I won’t get on a trial at all.  I guess I’ll just have to crawl there.

Dr M’s Clinic

26.05.16

Current situation: seen two months after last chemotherapy

We have reviewed G in clinic today, 2 months post her last chemotherapy dose.

Her current symptoms are pain in the right hypochondrium and epigastric idea, sensation of fullness in her stomach that limits the amount of food she is eating despite having good appetite, weakness and right leg lymphedema.

She has been recently seen by the phase 1 team at RMH Sutton and she is awaiting an appointment to make a decision regarding the possibility of a phase 1 trial.

Performance status is 1.

On examination there are no palpable nodes, the chest is clear, cardiac exam is correct.  On abdominal examination there is hepatomegaly about 5 cm below the costal margin and extending into the epigastric area, tender to touch.  Bowel sounds are present and slightly increased.  No significant ascites.  There is right leg lymphedema.

Her blood results are pending.

We have discussed possible management options including: - conventional chemotherapy, - phase 1 trials and – supportive care.

G is not keen on any drugs that cause alopecia, she is keen on experimental treatment and she is not ready yet for best supportive care alone.  I have suggested a trial of steroids to try to help her capsular liver pain, but she was not in agreement with this treatment at present.

I have given her some information regarding Topetecan, which would be our chemotherapy suggestion; I have quoted a response rate of around 10% and she understands that the main toxic effects are myelosuppression, alopecia and diarrhoea.

As her preferred management option is to participate in a phase 1 trial, I have advised her that she continues the plan for the phase 1 at RMH Sutton and sees them as soon as possible.

We will have a telephone consultation next week to follow-up on her referrals.

Dr A M

Consultant Medical Oncologist

Tue 31 May

Marsden Lymphoedema clinic, Fulham

So much traumatic stuff has happened since I last did my journal, that what follows is a poorly-memorised, mush-up, but I will recall what I can.

Saw a very professional lady in the Marsden Lymphedema clinic, who knocks spots off the Guy’s team.  She deals only with cancer patients, rather that general, which helps a lot.  She is not thrown by patients suffering with cachexia (muscle wasting due to cancer.)  She advised me to keep my Guy’s appointment for made-to-measure stockings, since this has finally happened after months/years of asking, then call her if I need help.  She was very understanding, like a professional counsellor and I found myself pouring out all my lymphedema problems to her.

Wed 1 Jun

Marsden, Sutton

and

Fri 3 Jun

Marsden, Sutton

Now, what were these following two appointments for at the Marsden?  I think they were about seeing if I was eligible for trials.  I will have to go back over the paperwork.  Anyway, the outcome was, ‘no’, not eligible, because by blood markers were marginally not right.  Feeling decidedly fobbed off by everyone.  I don’t think they considered me fit enough, especially as I would be trekking to-and-fro to Sutton every week, which I have to agree I wouldn’t be up to.

Tue 7 Jun

Oak ward, Marsden, Sutton - Blood transfusion

A generous two units of blood from the Marsden, kind of a consolation prize I think for not offering me a place on a trial.  Gave me a good energy boost.

Thu 9 Jun

CT - Marsden, Fulham

Only drink water after 7.15am.  Only drink minimum amount of milk before that.

M – tell her I didn’t get on a Marsden trial and tell her I had blood transfusion at the Marsden. Ask her if she heard anything from UCH – she will ask Dr M’s secretary L -  tell her I had CT today.  Ask her about mov-18 tissue samples because Marsden needs the result (they are also running a Mov-18 trial at Fulham.  She will ask Heather from the Phase 1 Unit at Guys.)

Fri 10 Jun

Call to/from M?

M said H from the Phase 1 unit at Guys says results on my tissue are still not back.  M will ask for me to be on their ‘urgent list’ for results.  Dr M’s sec L says I had an appointment at UCH on 19^th May?!!  (I didn’t get any notification).  D from the Marsden looked at my scan – no report yet.

Wed 15 Jun

Marsden, Sutton – bloods, CT report and trial rejection

No offer, just as I expected, as I have the definite feeling that I am being subtly fobbed off by everyone – they think I’m not fit enough, and are probably right.  I felt relieved in this instance, because I knew I wasn’t up to travelling to-and-fro to Sutton, and I would much rather be seen at UCH if I get an offer, because there would be less travelling.

Thu 16 Jun

Dr K, UCH

I saw a registrar, not Dr K.  She was very agreeable at first and said there was one trial that I might be able to go on.  They had considered two others, but I wasn’t eligible for them, I forget why.  Then she went away to ask Dr K if I could go on the trial (did she say pembrolizumab??).  When she came back, her manner seemed colder.  She said I couldn’t go on the trial after all, because I hadn’t responded to my last chemo.  It sounded like a made-up reason to me and I wondered if Dr K had already decided she didn’t want me on any trial.  She said they would recommend Cisplatin +/- Etoposide if I wanted to try another chemo, and she will write to Dr M suggesting that.  She said it can work in people who are platinum resistant, but there is very little chance of any chemo working for me.  She said if I were to respond, then trials could be a possibility in the future.

Tue 28 Jun

Lymphedema clinic, Guy’s

Mon 11 Jul

Call from Care Oncology Clinic - Dr S A

I asked about the drugs and if I would have to cut down if I got GI symptoms and if they still work if some are skipped, etc, etc.  I asked how long it would take for the combo to start working – he said to carry on for not less than three months.  He said the combo would potentiate the effects of my carboplatin.  We will have another consultation in two months before the meds run out.  I think he said my raised ALP is a statin issue??  I can take probiotics with the regime, which I was very pleased about, as they are good for immunity, the liver and generally against the cancer.

Tue 12 July

N, Guy’s, tights fitting (cancelled by me)

Garment fitting with N.  I cancelled this appointment as my legs are so swollen on both sides now, plus my trunk, buttocks etc, that there is no chance of them fitting.  The cancer has suddenly caused a big build-up of fluid in my lower body.   It would have been great to finally have something made-to-measure – after all this time – but my symptoms have nose-dived.  What a shame when all the practicalities had finally fallen into place!

Wed 20 Jul

Dr M and bloods

Saw Dr M in person, with Ronnie.  She said I looked very ill and can’t carry on with any kind of chemo.  It has had a bad effect on my liver.  R cried a bit, but I just felt sad.

Haircut with K, STH

This went quite smoothly.  Felt embarrassed at how thin my face is now, but K did a good job.  I will just let it grown out now, as I think we’ve got rid of all the raggedy bits.

Thu 21 Jul

Call from M.  They will ring tomorrow 11am-ish to let me know if there’s a bed for the abdominal drain, after I have an ultrasound to mark the place.  I will stay Friday night on Blundell Ward and leave on Saturday.

Fri 22 July

Admitted to Blundell Ward, 2^nd floor, Bermondsey Wing, Guy’s, for an abdominal drain.  However, it transpires that I have AKI (acute kidney injury) and will have to stay longer for drips.  I’m very dehydrated because my kidneys are not working properly.

Wed 10 Aug

Dr M appointment, STH

Tue 16 Aug

Marsden Lymphedema telephone assessment

We cancelled this on the phone as all my measurements have changed.  I will call again in future if there is any need.  I think I’m staying on the books.

Fri 9 Sep

A&E – breathing scare

Couldn’t breathe properly all night, and called Palliative Care at about 5am.  They told me my only option was to go to A&E.  Got taken by ambulance to St Thomas’s A&E, which filled me with despair.  Managed to get most of my essentials packed into a ruck sack.  (Must print out the overnight stay ++ list for future emergencies).  The woman ambulance person was friendly, but man was very gruff and rude.  I explained that my mouth gets very parched and dry from the morphine, but he wasn’t interested.  They don’t allow glass bottles on the ambulance and I had to fight to get a carton of almond milk from the kitchen.  I couldn’t speak, and the bloke said, “Where are you off to?” as I struggled past him, like I was some demented old woman.

It didn’t take long to get hooked up to oxygen, then several hours in A&E, which I didn’t mind.  They sent me to a quick turn-around ward, I forget the name, but this changed to a longer stay ward called William Gull, with a view of the Houses of Parliament.  I explained about my need to have constant access to a toilet - I said it would be impossible otherwise - and they agreed, letting me have my own side room.  The view was lovely.  In the evening, they said they wanted to transfer me to the women’s bay (communal toilet, no view) because they had an infectious patient who needed my room.  However, after some crying and wailing, they let me stay in the private room.  I was there until Monday night.  To be honest, I was glad to stay because I had bum pain and didn’t know if I needed an enema.  Also I was still very worried about breathing. 

They said they needed me to stay so they could set up the oxygen machine at Villa Road, as well as (ominously) a box that allows them to enter my flat whenever they like.  I am feeling more and more bullied and controlled by these people.  I think the situation was perfectly symbolised by the way they brought me back home:  The ambulance was four hours late, and we arrived back in Villa Road late that night.  They had to strap me into a chair, with my arms crossed on my chest, just like Hannibal Lecter, and bump me upstairs in front of any spying neighbours.  I tried to laugh and wave to R, but it was pretty humiliating.  I haven’t been out in public for months.  I must have looked quite a spectacle.

Fri 9 Sep – Mon 12 Sep

Inpatient Discharge letter – William Gull Ward, STH

Consultant: A, L

General Medicine

Presenting complaints: Shortness of breath

Principal Diagnosis: Pleural Effusion (PE)

Clinical Summary

Presented with increased shortness of breath of 1 day’s duration, on a background of known stage 3A ovarian carcinoma.  Chest X-ray showed bilateral pleural effusions and a CT pulmonary angiogram showed no evidence of pulmonary emboli.  Patient decided against active management of pleural effusions in consultation with medical team.  Reviewed by palliative care for fast-track discharge planning, as per their review included in letter: package of care in place, all PRN medications prescribed on TTO or already available at home, oxygen therapy in place at home and palliative care follow-up in community in place.

SPECIALIST PALLIATIVE CARE

Currently

Admitted over night with increasing SOB.  CT CAP showed bilateral pleural effusions.  HB 75.  Decided against drainage of effusion or transfusion.

Physical symptoms

SOB+++.  IRT has arranged home oxygen, delivered prior to discharge.

Denied pain during admission.  On longstanding MST BD and Oramorph PRN.

Constipation, tenesmus.  Longstanding issue.  Had an enema during admission – bowels opened after that and G felt more comfortable.

Pallor.

Cacectic.

Eating and drinking small amounts.

Perferal oedema.

Psychological symptoms

Very anxious.  Do not like to be in hospital.  Prefers to be at home.

Has said that she wishes she was dead.  No plans to do any self-harm.  Say she’s too scared to do this to herself.  Just wishes she was ‘out of here’.

Social concerns

Lives alone in a flat.  6^th floor.

Partner R supportive.  He lives in Wapping but has taken time of work so he can be at home with G to support her.

G manage to mobilise short distances.

G has agreed to a BD POC, DN input, continued community palliative care input.

Referred to pall@home on discharge.

Discharge team arranging key safe and commode.

Spiritual/existential concerns

No religious beliefs.

Advance Care Planning

PPC/D home.  Would like to avoid hospital admissions if possible.

DNACPR form in place

PRN injectable medications already at home.

On CMC

COORDINATE MY CARE RECORD

Already has CMC record (prior to current episode).

INJECTABLE MEDICATIONS PRESCRIBING AT DISCHARGE

No PRN injectable medications prescribed this admission, confirmed by community palliative care CNS that G already has this home.

Discharge Medicines

MST – 20mg every 12 hours

Lorazepam tablets – 0.5mg (half a tablet – break tablet in half) every 6 hrs when required for anxiety

Oramorph liquid morphine – up to 5mg per hour

Omeprazole – 20mg every morning

 NOTE:  This was the last diary entry from my lovely girlfriend, Gina G (a pseudonym).

She died just after noon on 21st September 2016 after a brief overnight stay at Royal Trinity Hospice, Clapham.

She didn't think she was brave; just reacting to circumstances.  However, I have never known such a brave soul.  She suffered such indignities and pain.  I miss her greatly and can never forget the impact she has made on my life.  I will love her always.