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And so it goes

Elaine didn’t really recover from what precipitated the rigor two weeks ago. Since a further attack of rigor on Friday, she has been feeling terrible and has barely eaten. Things finally seem to have swung in action. We had the doctor yet again this morning who arranged for anti-sickness drugs to go in by a line attached to a machine – one that does go “ping” if it gets blocked. Elaine seems to be feeling a little better – enough to quip “I’ve lines to the right of me, lines to the left of me . . . “

We’re so grateful to our friend Jane who used to be a doctor and lives on our street. Just at the points where we don’t know where to turn next, she comes and sits and chats and gives us great advice and anecdotes about teaching bare foot doctors in Africa. And thanks to Julie who comes round and chats and supports and brings us tasty dishes like the quiche yesterday which I greedily ate most of.

I wrote the account below to try and make sure all the doctors and medical practioners realised just what was going on.

Wednesday,13th June Cookridge pre-assessment – urinary tract infection diagnosed. Antibiotics prescribed.

Thursday, 14th June Cookridge: chemo oxalyplatin plus cetuximab
– with hindsight this might have been delayed given Elaine was unwell.

Saturday, 16th June – up all night vomiting. In bed all day Sunday and Monday. Not eating.

Tuesday, 19th June, frightening attack of rigor. 999 call.
Admitted to Calderdale Royal. Extensive tests.

Wednesday, 20th June – discharged from Calderdale Royal.

Thursday, 21st June – consultation with Dr A at Cookridge.
Scan to be brought forward because of increase in tumour markers.

Friday, 22nd June – Dr Anthony phones at 5.30 to say they have found pneumonia bacteria in the bloods. Antibiotics changed.

Elaine continues to feel unwell, mostly bed bound and eating very little.

Monday, 26th June, phoned surgery for home visit. Dr O came.

Thursday, 28th June. Too poorly to go for chemo at Cookridge.
Bucks up a little and we go out for a meal to celebrate Morgan finishing A levels.

Friday, 29th June. Another attack of rigor. Elaine rides this one out.

Weekend of 30th June/1st July – feeling very ill most of the time. Regular vomiting.

Monday, 2nd July. Does not eat anything until Monday morning, and then only some stewed apples, a biscuit, and some of Julie’s soup. Dr W visits in the morning. Elaine is feeling a little better at this stage. By the afternoon, Elaine is vomiting regularly even though there is nothing to bring up. Complains of back pain. Jane (a non practising doctor neighbour) comes and feels her back and feels the pain is in the kidney area. We call the out of hours service. The doctor prescribes a different antiobiotic, one intended for the urinary infection. He gives an anti-sickness injection. Elaine sleeps for a couple of hours but is still up most of the night trying to vomit.

Tuesday morning, 3rd July – feeling terrible, still trying to vomit at 20 minute intervals. Dr H prescribes the line.

Temperature has varied from 36.4 to 39, sometimes in the course of a day.


We had to make an emergency call for an ambulance today, and Elaine is this evening still in Calderdale Royal hospital.

Elaine has not been well for the past week to ten days. When she visited Cookridge last Wednesday for her assessment prior to the chemo, they diagnosed a urinary tract infection, and prescribed more antibiotics. With hindsight, they should not have told her to go ahead with the double dose of chemo on the Thursday, but they did. She seemed to bounce back Friday and Saturday – possibly because of the antibiotics or possibly because of the steroid they give her with chemo.

However, most of Saturday night, Elaine was up vomiting and remained in bed Sunday and Monday, hardly eating. This morning, Elaine seemed a little better and even drove down to the shops.

About one thirty, I heard a series of gasps and went in to see her. She was shivering violently and was in serious distress. I called the doctor but was told it was lunch time. They would try and find a duty doctor and ring us back. For a moment, I didn’t know where to turn.

I rang Jane who is a doctor and friend living down the road. Thankfully, she was in and came straight up. She took one look at Elaine’s colour and told me to ring 999.

The ambulance was here very quickly and the ambulance men were very friendly and re-assuring, although one later told Elaine when they first saw her she looked like she would have a heart attack any moment. By the time, Elaine was in the ambulance, she was rallying and her colour was returning. The ambulance men did some more tests, blood pressure etc and then informed me that she was going to hospital “whether she liked it or not” – Elaine was feeling better enough to start saying she didn’t think it was necessary for her to go into Calderdale Royal.

While she was being taken for an X-ray, she had another attack of the extreme shivers so the doctors were able to see exactly what the problem was. They said the condition was Rigor which Wikipedia describes as “shaking occurring during a high fever. It occurs because cytokines and prostaglandins are released as part of an immune response”.

She phoned me around half ten this evening, and said they were now wondering about a pulmonary embolism which Wiki says “is blockage of the pulmonary artery (or one of its branches) by a blood clot, fat, air, amniotic fluid, injected talc or clumped tumor cells”. They are going to run more tests but in the meantime have given her some anti-clotting medicine.

Update: Wednesday, 9.30am – Elaine has just phoned and they have more or less ruled out it being a pulmonary embolism. It looks as though she will be discharged later this morning. Hooray!

April scan results

This morning at Cookridge, we got the results of the scan taken two weeks ago.

Big smiles all round as the new (schoolboy!) registrar told us that there had been a further 35% reduction in the size of the liver tumour. (On top of the 50% reduction shown in the January scan)

Elaine is still at the hospital. It’s double chemo day so I’ll return to pick her up later but wanted to share the good news.


The Language of Cancer

One of the problems I have is in the language people currently use to talk about cancer. It’s nearly always tied up with metaphors and images of battle, losing, winning etc. It may be a useful enough way to think about it at first but the problem is that where there are winners there are also losers and if your cancer returns as mine has I think you can feel more defeated if you’ve got into using the figurative language of battle than if you haven’t.

I can’t really explain to anyone how utterly awful, angry, aghast & yes defeated I felt when my cancer returned after a brief absence. I felt as if I’d done all the “right” things ie adopted a vegan diet, had acupuncture, herbalism and homeopathy in addition to conventional medicine, meditated and above all maintained a spirited determination to overcome it. If all it took was having a positive outlook (as so many people seem to think is all you need) then cancer wouldn’t have dared to come back into my body.

I remember something that my late aunt Florence said and that I have often pondered on especially since I’ve had cancer myself. She had breast cancer at 40 and survived it, lung cancer at 57 necessitating the removal of one lung which she also survived before dying finally at the age of 74 from a brain tumour which amazingly turned out to be a secondary from her lung cancer of 17 years previously.

She said that she got very angry when she read in the papers about people saying they were going to fight cancer and that they were sure they’d win. “When I had my lung cancer I didn’t want to win. Uncle Stan (her late husband) had just died and I was desperate to join him. I hoped I’d die and yet I lived. Having a fighting spirit and a positive outlook is nothing at all to do with it. When your time’s up, your time’s up.”

I often think about this and a large part of me believes that she was right. The emphasis put by the media and some people on fighting cancer etc makes those of us in whom it has returned feel like failures, as if there is more we could have done to stop this bloody dreadful scourge from ravaging our bodies. In many ways it places the “blame” on the sufferers.

I can’t think of any other language we could use in describing either cancer or the struggle of individuals against it and I have been thinking about this for some time.

Shared experience

I have been recently attending a day care session every Tuesday at the Calderdale Hospice in Elland. Everyone who goes there has a progressive and incurable illness. Most of us have cancer of one sort or another.

D. has cancer of the oesophagus. She is being treated at Halifax by Dr J who was my oncologist. She asked me why I was going to Cookridge in Leeds so I told her that I felt dissatisfied with Halifax and that I began to lose my confidence in the oncologist there. I discovered that we shared almost exactly the same experience of Dr. J.

We both agreed that she is a very friendly and apparently approachable person but D said that she had the impression that she was a hopeless case who was wasting the doctor’s time. Recently she was advised to stop treatment even though the scans showed that it was working. One of the reasons advanced by Dr J for this course of action was that D was having trouble swallowing. However, this was because she had a problem with the stent which had been inserted after her operation, a problem which was about to be remedied by further, minor surgery. D had actually broken down in the consultation and begged her not to stop the chemotherapy which Dr J is (apparently v. reluctantly) allowing her to continue with. She made the excellent point that in circumstances such as ours you want to feel as if your doctors are fighting with you not wanting to abandon you to the cancer.

My own feelings that I had to get out of Halifax Hospital and away from that oncologist for psychological reasons were reinforced by my discussion with D. I said at the time that Dr J and the nurses there were treating me like Dead Woman Walking and that I believed if I carried on as a patient there I would just go downhill because of the atmosphere which would surround me. And yet at times I have doubted myself because all the medical staff I have ever spoken to have been so positive about Dr. J. My own GP said that if he ever develops cancer he would want to be treated by her. D had also come across this fantastic reputation and had been wondering if it was just her who felt this way. She is now thinking of transferring to Cookridge too!!

I sometimes wonder if medical staff have any idea of the effect of their words on patients trying to cling desperately to their lives and some form of hope. I wouldn’t want to return to the days where no one told cancer patients the truth or gave them false hope. However, I feel that in the case of this particular oncologist she only seems to give us the worst case scenario and never seems to mention that occasionally people do survive for much longer than doctors predict and that some even recover.

Catching up

Elaine had a serious chest infection for at least a month which meant that she was confined to bed all day most of the time, perhaps coming downstairs for a couple of hours to watch tv. Sadly, this coincided with her three week break from chemo so she wasn’t able to take advantage of this respite. She suddently started feeling better and brighter again about two weeks ago, just as the chemo restarted, although over the past week she has had 2-3 bad days. Knowing many of her friends look in here to learn the latest, I have encouraged her to write but she didn’t feel inspired, until today. Although Calderdale Royal replied to my complaint just before Christmas, I keep meaning to post it here yet, and composing a firm riposte.

Pas bien dans ma peau

The break from chemotherapy isn’t proving the enjoyable respite from feeling ill that I had anticipated. The persistent cough that I’ve had for ages took me to the health centre on Friday when I also started to get pains in my shoulders in the lung region. The doctor told me that I had a chest infection that could easily develop into pneumonia and prescribed me antibiotics for it. Can’t say I’ve noticed any effect from them as yet. This afternoon I’ve been coughing like a consumptive.

In the late Julia Darling’s blog about her cancer she complained of how annoying it was that not only was her cancer incurable its treatment also makes you “look funny” too. I’ve had a couple of incidents in the past week that have brought that to mind.

Just as I thought my skin wasn’t looking too bad I’ve had a series of comments about it from people which have really brought me down. For example this afternoon I bumped into a neighbour in the local organic shop where I’d gone to take my plastic bags to save the planet. After asking how I was he went on to ask, “Is your skin like that because of the treatment?” in a loud voice that caused everyone in the shop to look round to view the ravaged complexion of the freak handing over the carrier bags. When I look into the mirror these days I don’t feel too bad about my skin but maybe I am just getting accustomed to it.

Remarks like these make me feel like staying in and avoiding people. I sometimes wonder if people make them to feel good about their own robust constitutions. On occasion (and this was one of them) I wonder if people only talk to me to congratulate themselves on not having cancer. I’d like to tell him how much he’s upset me but don’t quite know how as he is not in the least a malicious man.

Waiting for . . .

I have been continuing with my weekly round of chemo at Cookridge. Nearly every week, someone from the rota drives me there. Sometimes a different person will drive me back. But the chemo has been very hard for me to take over the past few weeks, which is why I haven’t written much here. My energy levels have been low, and I think I picked up some bug which I am still fighting off. Chemo lowers resistance to other illnesses. Yesterday I had an appointment with Sue the medical herbalist who says that my energy levels are the lowest she’s ever felt in me. On and off she’s been treating me since 1983 so she has the healthier me to compare things with.

The consultant has agreed to a break of a couple of weeks and I hope that I will regain some of the lost energy. I still manage to get out to the shops most days. But it is hard to arrange anything else. We had to postpone an invite on Friday to have a meal with GH because I just didn’t have the strength. This is another frustrating thing about the situation the way I can be quite suddenly ill at any time.

Last week, we went to down to arrange for me to get a disabled badge. The person administering it turned out to be M, who worked at the nursery Morgan attended as a toddler and who is really friendly and helpful.

Although Cookridge is so much better than Halifax, it can still manage to annoy. Last week, I arrived at a quarter to ten. It was nearly three before they started giving me the chemo. I had the appointment. They knew I was coming. Why the long delay? Some weeks I have to have blood tests first and see the doctor. I can understand in those circumstances why it might take a while to get the results and then adjust the chemo prescription. But most weeks this isn’t the case. So why do they have to make people sit around for such a long time, especially when they’ve had to travel up to an hour and a half to arrive? I am sure that there must be good reasons for these long delays but it might help us all to endure them if we knew why they were occurring and we received some explanation from the staff.

I heard the nurses discussing, “Mr A our favourite patient.” Apparently this man comes in at 9 am, registers, has his blood test and then leaves reappearing at 5pm to get his treatment which has by then usually been waiting for him at least two hours. The ward doesn’t close until 6 and he spends the rest of his time driving his taxi around Leeds. The nurses seemed to think that this wasn’t on as it often meant that they were kept waiting when they could have gone home! As I listened I mentally applauded Mr A and wished that I lived nearer to the hospital and could do something similar myself. In fact I began to fantasise persuading all my other fellow waiters to do the same as Mr A, all disappear and re-appear at around 5 for our treatment. I wonder if such a protest might lead to someone somewhere in the hospital administration working out a system where we don’t have to wait so long? I feel sure it’s not beyond the ability of people who manage hospitals to devise a system which doesn’t include waiting over 5 hours in order to receive 1 hour’s treatment, or to be in the hospital for 10 hours as I usually am every third week to receive 4 hour’s treatment.

I discussed this with a doctor friend yesterday who pointed out how lucky we are in this country that we have an NHS even if it does involve this ordeal of sick people sitting around in infection friendly hospitals for so long. Here I feel is one of the major reasons why British people put up with the inefficiency and time wasting which goes on within the NHS. We are always being told how grateful we should be that we don’t pay out at source as they do in so many other countries. But many of us forget that we either have paid or are paying for the NHS with our taxes which are in general far higher than those paid in countries like the USA with private health care systems. I remember in my thirties when BUPA kept sending me information about joining them and as a good socialist I threw their ads in the bin affirming my allegiance to the NHS as I did so. I didn’t think I would see the day when I would regret not joining but I have now. I am sure that if I was receiving private health care it probably wouldn’t be any better in medical terms than what I am currently receiving. But appointments would mean definite times when I would be seen or treated, not a time to arrive and then wait for whenever it suited the system to have me seen or treated. This waste of my time makes me feel less valuable as a person, somehow in-valid as my time is apparently so worthless it can be squandered in this way.

Three weeks ago I caught some sort of illness which had me in bed for 3 days. I can’t say I feel recovered from it yet. I still spend a large proportion of each day in bed and things that at one time I used to do without thinking such as put the washing on or cook a meal feel like major challenges and achievements when I have done them. I feel weaker now than I did a month after major surgery.

Knowledge is power!

During the time I’ve been treated at Cookridge Hospital I’ve met many very interesting people. The patients there seem to come from a far more varied, educated and cosmopolitan background than those being treated at the Macmillan Centre in Halifax were last year.

However, in spite of this I have been astonished over the past three and a bit months by how little the majority know, or want to know about their treatment. Very few people know the names of the drugs they’re being given or let alone their likely side effects most seeming to have the attitude that ignorance is indeed bliss. I find it hard to understand how people can still hand their bodies over to the medical profession without any sense of unease or questioning. I remain convinced that knowledge is power!

The oxaliplatin treatment

Whilst most of the time I manage to keep my spirits up the oxaliplatin treatment (due this coming Thursday) or contemplating it nearly always manages to bring them down.

First there is the time spent at the hospital, usually at least 10 hours & then there’s the side effects which seem to be the worst of all the drugs I am taking.

In the arm into which it’s administered it nearly always leaves it feeling as I imagine the affected limbs of stroke victims feel, heavy and useless, aching for days afterwards. I’ve learned not to try to do any cooking for about a week after but earlier this month during my first attempt after a week’s break I began to cook but got awful, awful electric type shocks in my hands as I handled the vegetables and the knife which even warm water couldn’t relieve and left me shouting out. It left so fed up of it all I didn’t know how much more I could take.

To this was added losing the feeling in my feet from time to time. As soon as one set of symptoms disappear it seems they’re followed by another. I felt so miserable. It would all be easier to cope with if I was getting more
and/or a better quality of sleep. It would be more bearable if I thought there was an end in sight but all I have to look forward to is more of the same, things getting worse and then death.

Good scan results

We saw Dr A yesterday and received the results of last week’s scan. All tumours have diminished in size by 50%.

Elaine was told by both Dr A and some of the nurses that this was a very good result, probably the best she could have hoped for after just three months of chemo.

Elaine was also really pleased to learn that she can have the occasional break (up to 3 weeks) from the weekly round of chemo.

Yesterday was the long day where she has extra chemo so she is still resting at the moment.

The Waiting Room

I heard a very inspiring play on Radio 4 on Tuesday afternoon. “The Waiting Room” by the writer Julia Darling who died from metatastic breast cancer last year. Much of what she wrote corresponded uncannily to my own feelings and situation. I’ve been recommending that people should listen to it on the Radio 4 listen again facility but haven’t yet succeeded in getting anyone to do so. (Click here to listen – but only until 23 Jan as the BBC just allow us to listen for 7 days)

Here’s one of her poems I wish I’d written. I am particularly taken by the lines: “Don’t say “How are you?” in/an underlined voice.” I also dislike being talked to in that underlined voice.

How To Behave With The Ill

Approach us assertively, try not to
cringe or sidle, it makes us fearful.
Rather walk straight up and smile.
Do not touch us unless invited,
particularly don’t squeeze upper arms,
or try to hold our hands. Keep your head erect.
Don’t bend down, or lower your voice.
Speak evenly. Don’t say
‘How are you?’ in an underlined voice.
Don’t say, I heard that you were very ill.
This makes the poorly paranoid.
Be direct, say ‘How’s your cancer?’
Try not to say how well we look.
compared to when you met in Safeway’s.
Please don’t cry, or get emotional,
and say how dreadful it all is.
Also (and this is hard I know)
try not to ignore the ill, or to scurry
past, muttering about a bus, the bank.
Remember that this day might be your last
and that it is a miracle that any of us
stands up, breathes, behaves at all.

Julia Darling’s website

Good news but still suffering

Good news on the tumour markers in my blood which have gone down from 135 to 65, a decrease which Dr A described as “significant” and very encouraging considering that I haven’t been receiving the full amount of all three of the drugs that they usually give.

The tumour markers are seen in the weekly blood tests and are an indication of the progress of the cancer – see this ref in Wikipedia for more info.

Another long day yesterday at Cookridge getting in at 9.45 am and not leaving until 8.10pm, a recurring pattern for when I have the treatment which involves oxaliplatin. (I left home at 8.15 and didn’t return until after 9.)

I had an appointment with Dr A the oncologist to review the administration of the daily oral chemotherapy drug capecitabine which has been giving me diahorrea and other bowel problems. Unlike, the staff at Halifax he seemed concerned about these problems and interested in how to solve them prescribing me codeine sulphate instead of the loperamide which doesn’t seem to control the problems very well and yet seems to lead to bowel obstructions. Nice to get as many opiates as possible. Such a pity that they don’t seem to have the same effects on me as they do on most other people. No pleasant feelings of floating away, or hours of blissful oblivion, they just do the job of killing the pain and nothing else.

The news that the treatment seems to be having some effect came at the right time as after this dose of oxaliplatin I felt very ill indeed. I had to ask Lesley, my driver for the day, (thanks again Lesley) to stop her car twice on the way home whilst I threw up into the kerbside worrying all the time that any passer by would think I was a drunk & feeling terribly embarrassed to be vomiting in front of friends. The sickness carried on at home where I had to go straight to bed.

This is the first time I’ve had sickness like this and it seemed odd after being given a anti-histamine, steroid and strong anti-emetic to counteract nausea. However, I think I’ve worked out what happened. Because of the lateness of the treatment I was transferred from the day ward to another one. At the end of the drugs administration they give a saline flush. When the nurse came to remove this flush she was surprised to find I’d been hooked up to a dextrose infusion and not a saline one. As it was by now getting very late indeed she gave me a bolus rather than an infusion of saline. I presume this may be what caused my extreme sickness later on.

I also have bad vein pain in my right arm which means I can’t do much with it and am cursing myself for not reminding them to use my left hand for the treatment.

Elaine looks good

Elaine’s energy has dramatically increased over the past couple of weeks. This has been great to see as there have been several times over the past few months where I wondered whether she would ever walk more than a few yards again, let alone drive.

On Thursday evening, we went out to the Laughing Gravy veggie restaurant. It is just under half a mile away up a still hill and I assumed Elaine would want to drive. But she insisted on walking – which was great as I could have a glass of wine . . . or two. Yesterday, she drove to Manchester to see relatives. In fact, she has almost been as active this Christmas as any other year.

And with her weight loss Elaine looks in really good shape.

However, we know that her increased energy is probably a reaction to the break from chemo over Christmas.

And we can’t escape the statistics Elaine has quoted in respect of her life expectancy. However, they are statistics! The statistical average may be 18 months but some, with the equivalent cancer, will not live so long. Others may live much longer. Then there is the Elaine factor. Looking at her today, it is difficult to believe that she won’t be here for quite a few Christmases yet.

We have finally heard back from the Calderdale Royal in respect of the complaint with which we started this blog six months ago. They have apologised profusely for the way in which they have handled the complaint – probably because our MP wrote to them recently asking why they hadn’t responded – but they have rejected most of the points I was making, usually in solid organisation-speak. The letter (which I will post here soon together with our response) was notably for spelling and grammar errors throughout – a crime which Elaine of course considers more serious than many of the points which actually prompted our letter of complaint.

Season’s greetings to all our friends, family and others who pop in here from time to time. And thanks again for all the great support.

The chemo continues

It’s been a while since I last wrote here mainly because the past month has been one of dealing with a series of side effects from the chemotherapy & I fear that the recitation of all the various symptoms may get boring.

Unlike last year when I was given only one drug 5FU every week, this time they’re using three drugs on me, one of them as part of a clinical trial. When I signed the consent forms for the treatment it was rather chilling to see the aim of treatment as “Palliative, to prolong life” rather than last year’s aim of “Adjuvant therapy to surgery.” Last year I had a 40% chance of surviving 5 years. From now on according to the doctors, I have about 18 months to live.

The clinical trial drug cetuximab is part of the same family of drugs as Avastin, a monoclonal antibody which isn’t a cure for colon cancer but has been shown to prolong life. It is currently one of the most expensive drugs in the world costing £8000 per month, per patient and I am having it once a week. Its major side effect is an acne type rash. If you don’t get the rash it isn’t working. I’ve got it and feel rather fed up to have acne and wrinkles! But it can certainly be worse than I’ve got it. One other patient I’ve met on the same trial has had 80% of his body covered by the rash which looks more like psoriasis than spots on him. He told me that he’s had people flinch when he handed them his credit card recently and that he had thought of wearing a badge announcing that he wasn’t contagious.

The other drug I am supposed to take twice daily is capecitabine, the oral form of 5FU. The week before last I had very bad diahorrea and was advised to stop taking this pill by the hospital until I see a doctor for review on the 29th of this month. At the moment I haven’t taken it for about ten days and have felt a return of energy that I thought had gone forever.

But the worst one of the lot so far has been oxaliplatin which is administered every 3 weeks. On both occasions that I have had this drug so far I have felt almost unable to breathe as I left the hospital, my speech slurred, my eyes half closed and my hands had what felt like currents of electricity going through them. I was also unable to use the arm in which the drug had been administered properly for about a day afterwards. Chris’s daughter Rosie was staying the last time I had it and said that I looked like someone who was taking heroin!

The peripheral neuropathy is disabling. I can’t touch anything that’s even slightly colder than room temperature without pain and then numbness setting in & it makes everyday activities very difficult punctuated as they have to be with me holding my hands under the hot water tap to restore feeling in them. The last time it was intense for about a week and has only recently begun to fade three weeks later. I have been told at Cookridge that I seem to have had an extreme reaction to the drug as most people get this level of side effect after about 3 to 6 months on it. So there’s talk of reducing the dose, again a decision to be made on the 29th.

I am having a break from the treatment for Christmas and at the moment feel quite normal, almost as if there’s nothing wrong with me.

I have to say a special thankyou to those of my friends who have given up their time and taken me to Cookridge, or picked me up. And thanks so much to Mike B for organising this rota.

Chemo at Cookridge

Began my chemotherapy at Cookridge on Wednesday. It was a very long day indeed leaving the house at 8.30 and not getting home until 7.30. Not just the traffic, I had to spend virtually the whole day on drips in what will be the longest session I have there because I was given two of the drugs and a flush between them. I take the third in tablet form. I am not on the permanent line they were talking about in Halifax. Rather pleased about that.

None of it was an ordeal other than the drive and one of the side effects of the drug oxaliplatin which I had been well advised about and which started literally the minute I left the hospital. It’s called peripheral neuropathy. The nerves react to cold by tingling and electric type shocks. From now on I must be like a Victorian lady and never go out without gloves which I must also use whenever I remove something from the fridge. For example it doesn’t feel cold to me in my bedroom at the moment but as I am typing this I feel it starting up prompted by the colder air I presume.

But in spite of all this I was really taken by the the way I was treated on the ward. The atmosphere was completely different from Halifax. If there were any copies of “Hello” magazine around I didn’t see them. D, the nurse who was responsible for my care was an American from New Jersey. She’s in her early 30’s I would guess, very intelligent and wanting to train as a clinical psychologist. We had all sorts of interesting discussions throughout the day & she was a star at getting the cannula in my dreadful fragile, slippy veins.

The other patients were also very easy to spend time with. Experiences in Halifax have made me forget just how intelligent working class women can be. One even linked the growth in cancer to Chernobyl. In Halifax none of the other patients would have heard of it. The woman in the next bed had colorectal cancer too which had returned after 4 years to two other places and so is like mine inoperable. Even though she was diagnosed earlier than me it’s still come back.

Everyone was so friendly. They were all interested in why I was coming so far & when I said I found Halifax depressing two of them said that people there said it had always had a reputation for being “clannish” and unfriendly. There was quite a sense of camaraderie & I felt yet again how much more at home I feel in a cosmopolitan place like Leeds. I have of course noticed this before, how genuinely friendly Leeds and Bradford people are, especially by comparison to Halifax.

Chris didn’t stay with me the whole time but popped in and out throughout the day. He is also very impressed by the different atmosphere and commented that the nurses seemed far more relaxed and approachable there. But he says he would welcome any suggestions for finding the best route, ie with the least traffic. We’ve already tried several routes but around Leeds especially the traffic doesn’t seem to move.

Chemo round 2

I am about to start the second round of chemotherapy.

I have transferred from Calderdale Royal Infirmiary to Leeds Cookridge which is a university teaching hospital and feels so much better.

On Friday, we had the second appointment with Dr A to go through the procedure. The drugs I will be given as part of the chemo are flourouracil (“5FU”), oxaliplatin and cituximab, an Avastin type drug which is part of a clinical trial. Like Avastin it doesn’t cure the cancer but can prolong life. I only had a one in three chance of being given this. So the good news is that I may get more time but the bad news is that I have to travel to the hospital once a week which means that most of the prolongation of my life span may well be spent in Leeds traffic jams!

The stated aim of the treatment is to “shrink or control” the cancer.

The first session is to be Wednesday, 8th November and then it will be weekly. The travel time has varied from just over an hour to two hours each way, and I will need to be there for much of the day.

I injected myself with the viscum on Friday which provoked quite an extreme fever: I was in bed and out of it all weekend. Feeling much better today.

Staying at the Park Attwood Clinic

Elaine returned from ten days at the Park Attwood clinic in Worcestershire on Wednesday, 1st November. The clinic was in a truly beautiful setting. The day I went to pick her up the sun was shining on Autumn leaves, still on the trees, there were books and beautiful paintings throughout the building and a wonderful panoramic view in the reading room.

Elaine had Viscum treatment based on extract of mistletoe. This was administered initially by a drip, and later by injection. The treatment continues so Elaine will, later today, be giving herself the next injection. This treatment is designed to provoke a fever which in turn provokes an immunological response which, it is hoped, will work on the cancer as well as the fever.

The treatment is based on anthroposophical principles rooted in the works of Rudolf Steiner. There were many Germans working or staying at the centre, and of course Elaine had interesting conversations with many of the patients, including a German artist in her eighties and a retired Rear-Admiral.

The clinic discovered that Elaine already had a temperature when she arrived, and had a urinary tract infection. She didn’t know about this and it could have explained some of her recent tiredness. This was treated with compresses & uva ursi tea and has now gone. Elaine did suffer with gout for much of her stay. They didn’t want her to take the normal anti-inflammatory tablets which would also lower the fever. This meant she wasn’t able to walk around the grounds as much as she would have liked. Or get the train home!

We’ve tried to explain the logic of the treatment. It was noticed in the 19th century that people used to get bad infections after their cancer was operated on. There were no antibiotics of course so many people died from the infection. Of those who survived, it was noticed that the cancer returned less often than with those who had not had an infection after the operation. In the 70s I had warts appearing on my hands, may be 8 or 9. I didn’t go to the doctor but they disappeared completely after a very bad dose of flu which laid me up for a week. It was learning about Elaine’s treatment that let me make sense of the connection.

Elaine certainly seems stronger since she returned, although activity still tires her in a way it never did before. She had also been complaining of pains in her liver – these have gone for the moment.

Park Attwood

Some thought we were joking about the mistletoe!

On Sunday, Elaine is going to the Park Attwood clinic in Worcestershire for a week to 10 days.

She will be treated with Viscum Album or mistletoe! Viscum has apparently been shown to stimulate and strengthen the immunological defence systems and thereby support the body in fighting the effects of cancer.

The clinic is run on anthroposophical principles; all medical staff are properly qualified.

Elaine has also transferred from Calderdale Royal to Leeds Cookridge, and expects to start conventional chemo within 2-3 weeks.

Elaine often looks tired and lacks her normal energy, but the prospect of going to this clinic has raised her spirits once again.