YOU COULDN'T MAKE IT UP...

A bizarre and very unexpected twist in the story! I went into the Marsden on Monday early evening as planned; I had preliminary blood tests done to check that everything was OK for the next day's procedure; I was given antacids to protect my stomach, and intravenous fluids overnight, as I had to fast from midnight. On Monday morning I was given anti-sickness medication and steroids (to prevent an allergic reaction to the radioactive beads), then, with a nurse escort, I was taken in hospital transport down to Chelsea & Westminster, arriving feeling a little nervous but psyched up for the treatment...

...only to discover that in C&W's diary, I was booked in for next week, not this. 

... and seven days

Clearly there'd been a major breakdown of communication between C&W and the Marsden, and somehow the fact that they each had different dates for the procedure hadn't been picked up. Everyone was terribly nice and extremely apologetic (while we were waiting for transport back the nurse bought me breakfast!), but it still means that I have to come back next week. (The beads are specially ordered from manufacturers in Australia, and go via Germany to be activated with radioactivity, then are delivered - presumably in a well-sealed container - to the UK within hours of the insertion, so there was no way the procedure could be brought forward.)

I was fairly assertive with a Marsden SHO, and later on the phone with my specialist nurse (I think the problem arose as she'd just come back from sick leave but it wasn't clear what her colleague was still dealing with on her behalf and what she was assumed to have picked up), but in fact I was rather relieved not to have to face the treatment just yet, and to have more time to recover from jetlag and chemo. It was nice coming home early, and feeling relatively well and independent - a bit like an unexpected day off work when it snows! So, apart from having to rearrange kind friends and family who have set up a rota to look after me, I'm treating this week like a "bonus week" to relax and take things easy. For a control freak, this seems a remarkably sanguine reaction! yet it doesn't really make much difference - it's just one of those things. I guess we never know if things happening at a different time would have changed the outcome.

So thank you for the good wishes that many of you have sent me, and I hope you've still got some left over for next week! It'll be the same timetable: going in on Monday afternoon, the procedure done on Tuesday morning, and a night or two in the Marsden before coming home to my lovely team of helpers. Thoughts, prayers, healing vibes or whatever you believe in all gratefully accepted!

BACK INTO THE MEDICAL FRAY

After the relative respite of being in the States, it wasn't easy coming back into being confronted with all the medical issues again. I landed at Heathrow at 7 a.m. after barely any sleep, and by 10.30 that day was at the Marsden having blood tests. Demoralisingly, even after an extra week off chemo, the results aren't great: I'm quite anaemic, which explains (along with the trip away) how exhausted I am, and my platelets and immune system markers are still pretty low (the low platelets mean I have nosebleeds, which I find very trying), but they were OK enough to go ahead with chemo. However, over the past cycle I've noticed that the tingling and numbness in my fingertips has become constant, which is known as neuropathy and is a side-effect of one of the chemo drugs, oxaliplatin, which affects the nervous system. Mostly it wears off after chemo finishes, but in some case it can continue to get worse, and for some people the damage is irreversible and permanent. It's a very scary thought, and I've worried a lot about it: as well as making difficult things like fastening buttons and writing, it would jeopardise playing the violin, which would be gutting (at the moment I can feel it when I play but it doesn't get in the way). So the doctor cancelled the oxaliplatin for this last cycle, and instead I just had the other drug, fluorouracil. (That's the one administered over 24 hours, so sadly I still had to have the pump!)

It felt weird to be having my last cycle of chemo, probably ever - on the one hand I just could not wait to be finished with it (and counted down the hours till the pump was disconnected for the last time), but at the same time it's quite frightening to lose the routine and reassurance that something's being done to fight the cancer. Thank goodness for the radiation treatment - if that wasn't happening I think this would be a very bleak time.

Especially as it was decided, that same first day back, spaced-out with jetlag and exhaustion, that I should have a CT scan to evaluate the effect of the chemo before the radiation treatment. It meant a lot of extra waiting around but it makes sense to be able to differentiate between the effects of each of the treatments. Unfortunately the results (which I got 2 days later, when I was having the chemo) were disappointing: there's been further growth in all the tumours. This makes it fairly clear that the last four cycles of chemo haven't worked, and it's a huge blow that things have continued to get worse. I've struggled over the week with fear, anxiety and upset, and I've felt quite fragile and demoralised. Ironically a number of people have commented on how well I look at the moment, especially in the wedding photos, and while of course I don't at all want to look ill, it feels confusing and misleading to be congratulated on looking well when things inside my body are so very different. The one good thing is that the cancer hasn't spread outside the liver, so the SIRT treatment can still go ahead as planned. There's certainly a lot riding on it....

So I go into hospital today, Easter Monday, with the treatment taking place the following day, and I'll be in for two or three nights. I'm not sure how I'll feel afterwards - reactions seem to vary considerably across different people - but I'll update the blog when I feel up to it and in the mood to write. Side-effects can include abdominal pain, fever, nausea, and extreme tiredness, so don't worry if you don't hear anything for a bit - I'm planning to take things pretty easy for a couple of weeks.

In this rather downbeat, grim and nerve-racking time, it seems a good moment to share with you the story of someone who's been following my blog and who kindly sent me the story of his experiences caring for his wife while she had cancer. I've found it inspiring and encouraging to hear that recovery can happen, even against the odds, so at his request I'm copying it here, in his (and my) hope that it will be useful and uplifting for you as well.

Finding the Strength:  One Battle with Cancer

In November of 2005, my wife Heather was diagnosed with rare and deadly cancer called malignant pleural mesothelioma.  It was only 3 months earlier that we’d celebrated the birth of Lily, our first and only daughter, and we could not have been more devastated by the news.  

Among the options the doctor gave us for our next step was Dr. Sugarbaker, a mesothelioma specialist in Boston.  My wife and I decided that if she was going to have any chance of beating this terrible disease, she would need the best care possible, and we were prepared to do anything to get her just that.  We told our doctor that we would be going to Boston to meet with Dr. Sugarbaker.

Shortly after the diagnosis, my wife was unable to work.  I could only work part time, in order to be there to care for her and Lily.  The majority of my time was spent handling my wife’s medical arrangements and taking care of our daughter.  It wasn’t long before I found myself awash with fear of my wife dying and leaving me alone to raise our daughter by myself.  I saw myself as a broke, homeless, widower and single father.  More than once I sat on the floor bawling like a baby until I could push that feeling of hopelessness aside.  I knew I had to be stronger for Heather.  The last thing she needed was to see my fears.

Luckily, we were blessed with help from all corners.  We’ll never be able to truly thank everyone who extended a helping hand to us in our time of need.  If I had any advice to offer to those struggling like this, it is to accept every offer of help that comes your way, big or small.  Any offer of help can be a huge weight off your shoulders, and at the very least will serve as a reminder that you are not alone in the fight.

With the emotional and financial support of family, friends and even strangers, we fought the battle and weathered the worst of times.  Heather went through mesothelioma surgery, radiation and chemo.  Despite the odds against her, she managed to beat this disease.  Seven years later my wife is cancer free and healthy.

Not surprisingly, the entire ordeal has reminded me how precious time is.  How fortunate I am to have a good family and a support system that kept me going even when I thought I couldn’t.  Two years after Heather’s diagnose, I went back to school to study Information Technology full time, a dream I thought I might never accomplish.  I graduated with honors and was the class speaker at my graduation ceremony.  Considering my situation at home, I could never have imagined I’d have been on that stage, giving that speech.  I told my fellow graduates that within each of us, there is the strength to accomplish incredible, even impossible things, if we just believe in ourselves and never give up hope. Lily and her mother were in the audience to cheer me on, and that was the greatest reward of all. 

Cameron von St James

Thank you, Cameron, for this message of hope.

WEDDING IN SAVANNAH

I was delighted to be invited to the wedding of a good friend, Kristin, in Savannah, Georgia, USA. I got to know her nearly a decade ago when she lived in London; she now lives in Switzerland, but her family and her fiancé are American. 

However, deciding whether or not I should go was a huge dilemma. Much as I wanted to be there, I was nervous about travelling while on chemo, especially with two long flights for my body to deal with, and these fears were fuelled by being unable to get any travel insurance which would cover illness related to the cancer or treatment. I rang 27 different insurance companies, all claiming to specialise in covering medical conditions, and was refused by all but one, who offered cover only if I could show normal blood counts just before travel. Not surprisingly, my blood counts weren't up to scratch (as you'd expect on chemo), and although my medical team were happy for me to go, the interactions with the insurance companies really shook my faith and made me wonder whether I was being totally reckless to consider the trip. There was no problem getting insurance that didn't cover cancer-related problems, but if I'd ended up in hospital with an infection or blood clot, the medical bills could have been astronomical, and I was scared I'd blame myself for being so stupid (or arrogant) as to think I could possibly get away with it.

It was also a difficult decision to make because in one way I wanted to refuse to let cancer stop me doing what I want, yet I've also come to recognise that I do need to accept that it (and certainly the chemo) inevitably limit what I'm capable of coping with at the moment. I found it hard, in the middle of all this agonising, to work out whether wanting to go was a positive determination to live life to the fullest, or a kind of bloody-mindedness to do the kinds of things I used to do no matter what the toll on my body might be (especially as, to fit around my treatment here, I could only spare 4 days there, plus a day either side travelling).

In the end I realised that, to me, the reason for having treatment and making so much effort to stay as well as possible for as long as possible is to be able to be part of significant life events, and to share experiences with the people who matter to me. So off I went! and I'm so glad I did.

It was an amazing few days - because many people had travelled a long way, there were several days of events, including a welcome dinner, a bridal shower, the rehearsal dinner at a historic fort, and then the ceremony itself in Savannah's main park, with the reception at a nearby hotel. 

With Mischa (left) and Kristin at the welcome barbeque

With Mischa and Sharon at the rehearsal dinner in the fort

The wedding venue in the park

The lovely Kristin and Bruce

All glammed up with Sharon and bridesmaid Mischa

Morning-after brunch with the London lot

There were half a dozen friends I already knew, and other guests were very friendly. Savannah's historic district is beautiful, with big elegant colonial houses set around verdant squares, and we managed to explore most of it and hang out at some of the cafes. Sadly the weather wasn't as warm as usual for the time of year, but it was sunny some of the time, the trees were in blossom and there were large bushes of flowering azaleas everywhere - and I was very happy to have missed the snow in the UK! 

I stayed in a rental house with Sharon, which was cosy, stylish, and much more relaxed than a hotel. 

It wasn't easy some of the time: having spent the last 6 months reducing my horizons and living in a bit of a bubble, I found I was quite nervous about being out of my comfort zone. I worried a lot about getting tired, and not having so much control over what I ate. Having done so much travelling in the past - including intrepid trips on my own to challenging destinations - it was humbling, and painful, to discover how neurotic and vulnerable I felt at times being in an unfamiliar place. But counterbalancing all that was that it was just lovely to be part of the wedding, to be there for Kristin and Bruce, and not to feel excluded from "normal life". It was a very special time, and I know it meant a great deal to them as well for me to be there. And after the roller-coaster of "will I / won't I be able to go" it felt like a small miracle to get there and for everything to go OK; I'm very relieved and grateful.

Sunset over the riverfront

MORPHINE AND RADIOACTIVE DYE FOR BREAKFAST

I'm afraid I couldn't resist a tabloid-style headline! Things have happened quite quickly recently: back in January the consultant, in a slightly throw-away manner, said he'd email a radiologist to see whether I might be eligible for any radiotherapy treatment, but warned me not to count on it. Over the next cycles of chemo I asked the various doctors several times whether there had been any feedback, but with no luck, and I didn't think much about it. Then last week I got an appointment letter informing me I'd been booked in for the treatment just after Easter, but with a preliminary planning procedure to take place at the beginning of this week (i.e. with less than a week's notice). It felt quite stressful, because no-one at the Marsden seemed to know anything about the treatment process or what it  involved, and although I did (of course) scour the internet to find out as much as I could, it's not the same as being told what it means for me personally - including the risks and potential benefits. Over those few days I felt disempowered, frustrated, and scared by not having enough information, and it reminded me how much I need at least some illusion of choice and control.

It helped enormously when I discovered that the reason no-one could tell me much about it was that the treatment is carried out at Chelsea & Westminster hospital, not at the Marsden, so at least that made sense and stopped me feeling so outraged. Apparently my clinical nurse specialist would usually have been the person to liaise with them and explain things to me, but she's been on sick leave since November and it seems that no-one else knew about this particular treatment (not many people are suitable for it, and I'm the first person to be referred by my oncology team since she's been absent). I personally still think that's pretty poor handling of the referral, but I figured that when I went in for the planning procedure I could find out more (which I did - everyone at Chelsea & Westminster was great in answering all my questions).

The treatment is Selective Internal Radiation Treatment (SIRT), sometimes called radioembolisation. As you might guess, it works on the same principle as chemoembolisation, which I had nine times in Germany. Traditional external radiotherapy is generally no good for cancer in the liver, as it damages too much healthy tissue, so SIRT cunningly injects microscopic radioactive beads into the tumours directly, via a catheter (tube) into the femoral artery in the groin and the hepatic artery, to the tumour site(s). The radioactivity wears off over two weeks, and only extends 2.5 mm around each bead, so damage to normal liver cells is minimised; and in addition the beads (which are about a third of the diameter of a human hair) lodge in the tiny blood vessels supplying the tumours and thereby block off blood and nutrients, so there's a dual action. Some of the beads gradually get cleared by the blood flow, while the rest stay in the liver permanently, but I'm assured they're harmless.

So it's a very clever process - it was developed in Australia in the 1980s and was approved in Europe more than a decade ago. When given alongside chemotherapy, there's some evidence that the stabilisation or shrinkage of tumours is better than when using either treatment alone. (This is probably another reason I wasn't given much notice, so that it could be fitted in before the end of my chemo.) However the main risk with the procedure is that some of the beads could get carried by the bloodstream into other organs such as the stomach, gall bladder or lungs, where they can cause inflammation and other potentially serious problems. The preliminary planning stage is therefore essential, to minimise that risk, and is at least as complex as the treatment itself.

So very early on Monday morning I checked in to the Marsden (I still counted as their patient) and was escorted by a nurse the half-mile or so down the road to Chelsea & Westminster. There, I met with the interventional radiologist who was to carry out the procedure, and he explained everything very clearly and reassuringly - he's clearly an expert in his field, and I liked and trusted him. I then changed into one of those delightfully fetching hospital gowns, and was hooked up to a drip in the procedure room, which was full of impressively high-tech equipment. 

The radiologist gave me local anaesthetic in my groin, then inserted a catheter into the artery and fed in a thinner tube up through my blood vessels till he reached the liver. The process was done using angiography (a kind of sophisticated X-ray scanner which shows the blood vessels - although how he manoeuvres the catheter to the right place is beyond my comprehension), and at intervals he injected contrast dye which, under the X-rays, shows how the blood flows through the vessels. He also took a number of photographs (presumably like a screen shot by the scanner, but I couldn't really see), for which I needed to hold my breath for seven or eight seconds so that my diaphragm didn't move and blur the image.

From this, he identified the main blood vessels which could carry the radioactive beads towards other organs, and he then embolised (blocked) them - I'm afraid I don't know what material he used. The blockages are permanent, but cause no problems because every part of the liver (and probably all other organs and tissues in the body, I assume) is supplied with blood from more than one vessel. In this way he could make sure that when they do the procedure the risk of beads going astray is minimal. He used contrast dye again to check that the sealing-off was effective, and took more photographs, before withdrawing the catheter. Because my platelets are low from the chemo, which means my blood isn't as good at clotting, he inserted a collagen "plug" into the incision, to reduce the risk of bleeding (which, after puncturing a major artery, would obviously be very serious). The plug will dissolve over 28 days and can barely be felt under the skin. 

I was very impressed with all this technology, and also with the radiologist - it's incredibly skilled work, and he had a team of about five nurses and radiologists in with him. Professor Vogl, who did my chemoembolisations in Frankfurt, is a world leader in these kinds of techniques, but I have equal faith in the radiologist here. (Out of interest, I looked into prices for SIRT in the UK and Europe if paying privately, and they seem to be around £25 000. Much more than the €4000 for a chemoembolisation, but nowhere near what I read on one message board by an American: $44 000 for the angiogram and $115 000 for the actual procedure!! Shockingly silly money. I know I've had my gripes with the Marsden, but I'm incredibly grateful for a health system which - at least in my health authority - funds these cutting-edge treatments. Isn't the NHS amazing?)

The whole process took over two hours, and although I don't think I would have been in any pain it's a long time to keep still and stay relaxed, so they sedated me with a very low dose of morphine before we started. I'm sorry to report that I didn't feel any amazing effects from it! but I had a very pleasant sense of well-being and comfort - a bit like after a couple of glasses of wine when you look around the room and think how nice everything is - and was completely unbothered by how long it took.

The final stage was that they injected a radioactive dye and sent me off to the department of Nuclear Medicine, where I spent the next hour having two kinds of scan new to me - one was a gamma camera, the other a specialised form of CT scanner, which together produce high-quality 3D images of the blood flow. This means they could track the progress of the dye and get a clear idea of where the beads will go when we do the process for real. If they identify any "leakage", they'll embolise the relevant blood vessels next time before inserting the beads.

So it was quite a morning! I felt fine while I was transferred back to a ward at the Marsden - this time in an ambulance, as, like after the chemoembolisations, I had to lie flat and still for a few hours - but as the afternoon wore on I felt rather washed-out. After all, I'd had a great deal of contrast dye pumped into me, plus the morphine, plus a drug which dilated the blood vessels during the embolisation, plus the radioactive dye, not to mention having tubes poked around my insides for two hours. I didn't have any pain, but although it was lovely to have a couple of friends come and visit, and to have supportive texts from those people who knew I was there, I felt pretty weary and was very happy to stay in bed. I was kept in overnight (which reminded me how very unrestful places wards are!) and was discharged the following morning with instructions to take things easy for the rest of the week and drink lots of water to hep flush out the dyes. I still feel quite tired, but it's manageable, and although I've had some discomfort in my abdomen again, I'm pretty sure it's from the chemo last week, not the procedure on Monday. 

So the plan for the next few weeks is this: next week I've got a rare and welcome week off medicine and being a patient when I go to a friend's wedding in the States (I'll do a separate post about that when I get back, as it feels significant for many reasons). As soon as I get back, the week before Easter, I have my final (as far as I know) cycle of chemo, then the following week I'll have the SIRT. This will involve between one and three nights in hospital afterwards, and although people vary in how they tolerate it, there can be some side-effects for at least a week and possibly several weeks, so I'm planning in some convalescence time through the rest of April. I'm not yet sure how much I'll want visitors or social commitments, for those of you who are London-based, but will keep you updated here.

SCOTTISH RETREAT

I've just returned from a week in Scotland, staying at the Findhorn Foundation, about 20 miles west of Inverness. This is an alternative community based on principles of sustainability, spiritual awareness, living in harmony with nature, and sharing their vision through educational programmes and workshops. In my week there I only really scratched the surface of understanding their philosophy, so rather than trying to describe it I'll refer any interested readers to their website: 

http://www.findhorn.org/aboutus/#.UTOOgY5-Q20

My main reason for going was to have some sessions with a healer who works close by, who was highly recommended to me by a friend, Fiona, who I met at the German clinic in early 2012. Fiona lives in Scotland but she and I have stayed in regular phone contact over the past year, and as she told me about some of the healer's remarkable successes with cancer (including with Fiona), I decided it was worth a trip up north to see for myself. I found him a remarkable man: charismatic, warm, and wise, and I found my sessions with him powerful and thought-provoking. Whether there's any effect at the physical level I'll have to wait and see, but he asked insightful questions which gave me a new perspective and clarified some unhelpful beliefs which affect how I cope with challenging situations, so I've come away feeling noticeably more positive and less judgemental about myself - a definite result in itself! Of course a miraculous remission would be fantastic, but to me healing is also about making peace with whatever life throws at us and finding ways to appreciate the here and now without it all feeling spoilt by fears or resentment about what the future might hold - not surprisingly something I've struggled with a great deal in the past 2 years. 

As well as some emotional shifts from the sessions, I found the experience of staying in Findhorn very nourishing. Fiona overlapped with me for a few days, and it was lovely to see her again - as well as always having interesting and inspiring conversations, it's great to have someone who completely "gets" what it's like living with cancer. It was also a good balance of having time on my own at the beginning and end, but company in the middle. We were lucky enough to be able to stay in the house of friends of hers who were abroad, and this gave me a delightful, peaceful and cosy base right in the centre of the community - much nicer than being in a bed and breakfast! It was a charming eco-house, with a turf roof, solar panels, constructed mainly of local timber, and heated by a wood-burning stove.

The community sits in a beautiful location between the coastline of the Moray Firth and the almost-enclosed Findhorn Bay. There are forests, a belt of gorse, heather and pines, and sand dunes leading to miles of sandy beach. I went for long walks and revelled in the clean air, lack of noise, and a very welcome spell of glorious sunny weather. 

Don't be fooled by the sunshine - there was frost on the beach all day!

One day Fiona and I walked to the fishing community of Findhorn village, a mile or two away on the bay, for lunch at an organic cafe and bakery - again, the peace, and the intensity of the light, was extraordinary.

As well as going out walking, I slept for around 10 hours a night; I cooked healthy meals; I read loads (mainly self-help and inspirational books but also a couple of Jane Austen novels for light relief); I really enjoyed taking photos (as you can see by the number I've included in this post!); and I spent time every day meditating, either in the communal sessions every morning and evening, or on my own in the meditation sanctuary. I was surprised by how much calmer I felt, and how much more grounded, by simply switching off my thoughts for 20 minutes or so each day, and it's something I intend to try and keep up back at home. 

I'm planning to go back to Findhorn in early May, if all goes to schedule, and I'm very glad to have found both the healer and the place itself - the week felt like a real respite from the stress and "shoulds" of daily life (even my scaled-down current lifestyle!), and after a pretty tough few months it was a much-needed tonic both physically and emotionally. 

Sunset at low tide in Findhorn Bay

NEW TACTICS

Firstly I'd like to thank all of you who have posted comments, emailed or phoned me, or sent texts or cards with messages of sympathy and encouragement. Several people have also suggested treatments to look into or directed me to new research approaches, and others have offered practical help of various kinds. I really really appreciate your support - it's helped a lot, especially during the bleaker moments. 

Things have been ticking along since then. The chemo is still quite tough and I've continued to have problems with low blood counts, fairly full-on fatigue at times, feeling constantly cold and having tingling prickly sensations in my fingers in even quite mild temperatures, and discomfort throughout my digestive tract; but I try to remind myself that in the greater scheme of things it's relatively manageable. The good news to report is that after a while of feeling a bit low and helpless, I've had a fresh surge of energy to go and see some new alternative practitioners to try and help my body deal with the remaining chemo as well as possible over the next couple of months. 

Basically my (and their) plan is to focus on supporting my gut - partly because that's an area of the body which is disproportionately affected by the chemo, partly because that's the main area where I'm experiencing discomfort, and partly because good gut functioning is essential for the rest of the body to work as well as possible. This includes the immune system (which of course is also compromised by chemo), via the "friendly bacteria" which regulate microorganisms throughout the body, and gastro-intestinal enzymes which play a big role in detoxifying the body and ensuring good cell metabolism. Plus of course a well-functioning gut is essential for being able to absorb nutrients from food - something which is particularly important during physically taxing times.

So in the past week I've gone to see a nutritionist, who's prescribed some powerful probiotics and has recommended I cut out gluten from my diet (as it's relatively hard to digest so puts extra strain on a weak gut); I've started seeing a new acupuncturist (personally recommended by two independent sources) who seems very clued-up and competent as well as empathetic; I've booked a session in a far infra-red sauna (which is supposed to be more effective in helping the body sweat out toxins such as metabolites from chemo drugs - for more information see http://www.naturalnews.com/022847.html); and lastly I've started a course of colonic hydrotherapy. I'd always been rather sceptical about this (and a bit repelled by the idea), but given that my intestines aren't working very efficiently at the moment, it's very clear that waste products are building up - and it's likely that this is a major contributory factor to the abdominal discomfort and lack of appetite I've been having. Toxins from unexcreted matter tend to leach into the bloodstream, causing lethargy and malaise, and end up back in the liver (which has the task of cleansing the blood) - and I certainly don't want to be putting any extra strain on my liver at the moment. So it makes sense to me to help the whole system by cleaning out the gut over this period when it can't do it effectively on its own. I can't pretend it was a very pleasant process (and I did have a strong detox reaction afterwards, feeling weak and shivery for an hour or so), but I have felt noticeably less pressure, discomfort and bloating since, and it's helped already with appetite and how much I can eat at any one time.

All this has made for a busy week, but it feels really good to have a clear plan for the next (last) 3 rounds of chemo: that is, supporting my body to cope with the chemo as well as it possibly can, and reducing extra demands on it. The only downside is that there are now several extra practitioners to see regularly, and more appointments to squeeze into the non-chemo weeks. (I'm still also seeing the osteopath, a healer, a body therapist, going down to the Sussex doctor for a day every fortnight, having the odd Thai massage, and attending a weekly yoga class.) Looking at my diary for the next few weeks, it's almost exclusively filled with health-related things - it's a full-time job being a patient! 

This feels appropriate, given the critical nature of things at the moment - I want to give the chemo the best possible chance of working, and to do everything I can to make sure it doesn't have to be stopped early because of adverse side-effects. It's also given me a focus, a way of feeling that I can make a difference (even if it's only small), rather than helplessly waiting for the next onslaught of chemo, dreading it, but dreading it stopping as well. So it feels good finding a renewed sense of purpose for the next couple of months - and it's now easier not to worry so much about what might happen after that. 

The thing that has to give, especially with my limited energy, is socialising, as I simply can't fit in meeting up with people so much. Or rather, it would be physically possible, but if it means going out a second or third time in a day, or having no time to stop and rest in between engagements, or having to rush, I simply find it too much. Of course it's always lovely seeing people, including those I don't see so often, but I'm finding that at the moment it can also be quite tiring. Not at the time - I tend to rise to the occasion, get animated, and can carry on talking for hours! - but afterwards, while the other person may be thinking how well I seemed and how good my energy appeared to be, I discover I'm pretty weary. I need much more rest than I used to in order to do things in a relatively normal way, and my energy is limited so I have to choose how I use it. (There's a beautiful description of this at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ - thank you to Emily who directed me to it!)

I'm saying all this to explain to the various (and touchingly numerous) people who have been in touch and suggested meeting up why I might not be taking them up on their kind offers at the moment. It's not personal, it's just that right now I simply don't have the time and energy to see more than a relatively small circle of close friends and family alongside this renewed blitz on improving my health. (I'm still playing in the orchestra every week, and although I'm trying to step back from some of my committee responsibilities, I'm still involved in the admin side too.) I imagine this will change when the chemo stops - that'll be a whole new phase - so this is just how I'm prioritising things right now. It's hard to say this, because when people have taken the trouble to contact me and suggest meeting up, I always feel a bit guilty saying no: I guess I easily put pressure on myself to fit everything in as I used to, as well as to show that I'm grateful for the offer of support. I've begun to get better at saying, "I'd love to see you, but not just now", and writing about it here is a way of giving some context to why I've been saying that. 

But please don't let that stop you being in touch - it's always lovely hearing from people and I really value knowing that people are thinking about me and caring how things are going. Email and texts are better than phone calls, as a rule, but of course whatever medium you're comfortable with is fine. Focusing on my health and how my body's doing all the time means I can get very insular and self-absorbed, so contact with other people (especially from different periods and aspects of my life), even if it's not face-to-face, is really important in helping me stay at least a bit grounded. 

What I don't want to become like.....

TEMPORARY RESPITE, BUT LOOMING CLOUDS

I had a scan last week and a treatment review. These are always anxiety-provoking, but I knew that the possible outcomes were: that the chemo regimen was working (even if that meant just holding things stable) and would be continued; or that it wasn't working and they'd either try different drugs, or - worst case scenario - say there was nothing more they could do. My sister Belinda came with me as usual - for moral support, to keep track of what's said, and to ask pertinent questions when I feel overwhelmed (it's also invaluable being able to dissect it afterwards and debrief from any emotional fall-out). Pleasingly, I've been feeling much better during the third cycle than I did during the first two (much less gastric discomfort, finding appetite and eating a lot easier, and having more energy), so despite the usual nerves I was feeling quite optimistic overall about the results of the scan. 

So I was devastated to hear that there's been further growth in most areas of the liver, and while it isn't a huge amount, the doctor we saw told us that it indicates that the chemo isn't working and should be discontinued. She reiterated what I was told last summer, and back in November: that there aren't any further chemo drugs indicated for my condition and that I would be discharged from care at the Marsden. Remarkably, she was completely matter-of-fact about this and didn't seem to have any awareness of the impact of this news - extraordinary when you consider that this is perhaps one of the worst things you could ever be told by a doctor ("you have an incurable condition, it's getting worse, the treatment isn't working, and there's nothing more we can do for you"). She mentioned that she would of course discuss it with the consultant, who has the ultimate decision-making power on all clinical matters, and seemed a bit surprised when Belinda asked whether we could speak to him ourselves.

But she did arrange it, and presently we saw the man himself. I'm so glad we did, because he listened to us, considered the matter in some detail, and agreed that since the growth isn't huge there is a case to be made for continuing with treatment a bit longer, since it may be that the chemo is slowing down the rate of increase. He also took into account the fact that I'm tolerating the chemo OK at the moment (if I was experiencing a lot of problems with it, given the additional toxicity of more cycles he would advise against carrying on when there isn't clear evidence of benefit). The upshot was that I'm to have a further four cycles of this regimen (eight weeks) and then another scan and review.

I'm extremely relieved - it's interesting how the chemo which I've so hated suddenly became much more appealing when I was faced with losing it! - and, just as importantly, I feel listened to and part of the decision which has been reached, in contrast to previous reviews when I've simply been presented with what the team have decided in my absence. I was impressed with the consultant's obvious expertise and experience, and feel reassured and in safe hands - which is so important. (It's also rather shocking to think that if we hadn't insisted to speaking to him ourselves, it's very likely he would simply have rubber-stamped the usual procedure - to stop treatment when scans show deterioration - and I'd have presumably been discharged without further discussion. It certainly seems that those who shout loudest get better care!)

However, the downside is that the consultant confirmed what the other doctors had said: that after this regimen there are no other drugs they'll offer me. There are dozens of different drugs out there, and I'd assumed that, even if there isn't research data available on their effect on cancer of unknown primary, they would try out a fair number of options experimentally. This turns out not to be the case for me: I've now had the two different recommended regimens at the Marsden, and there are no other drugs to be tried once I finish this regimen.

So although for the next couple of months things will continue as before, with chemo every other week, I'm now starkly confronted with the fact that pretty soon there will be nothing more the Marsden can do for me. I guess I'd always known that there was likely to come a point when I reached the end of the road with what conventional medicine could offer, but I certainly hadn't expected to be reaching it so soon - when I'm still relatively well and leading a fairly normal life. And to be frank I'm finding it terrifying, and horrifying, to be faced with being written off by the hospital system. Although I've had a somewhat mixed relationship with the Marsden, the prospect of losing the structure and expertise they offer is very frightening, plus the feeling of being "given up on" makes it much harder to maintain hope. Of course I may be eligible for a clinical trial, if a suitable one comes up, but with early-stage testing there's a much lower probability of treatments being effective than with a well-established drug. So I'm finding it pretty hard to deal with, even though I've got a cushion of some weeks till I reach that point (providing I carry on tolerating the chemo OK and don't develop some side-effect which means it has to be stopped early). 

Over this weekend after getting this news I was down in Sussex with my older sister Annabel and then with my good friend Jacqie. It was great to talk it through with them, but I also appreciated spending time with their children; entering into children's mindsets leaves no space for pondering on your own problems or existential matters, and it was a huge relief to have some respite from my fears. So I had some really nice times, but in between I've felt very upset and scared of what the future holds.

Of course, there are still alternative treatments... and in Sussex this weekend I also saw the alternative doctor, who has a variety of treatments he offers to help contain cancer, such as high-dose vitamin C infusions and various supplements to help the body fight it as effectively as possible. So far what I've been having  from him is based around repairing cell damage from the chemo and supporting my immune system, but he confirmed that we can try other things, which is reassuring. There are also all kinds of wackier treatments out there, which I'll certainly be researching again - when there was a well-researched medical option available to me I discounted most of them, but when there no longer is then I reckon I've not got much to lose by trying one or more. I could also consider going back to the clinic in Germany - almost everyone I met there had been written off by their oncologists back home, but many did very well on Dr Herzog's protocols. One of the nice things about the alternative doctor, like the German clinic, is meeting other patients there who don't just take the medical view as gospel and who take their treatment into their own hands, and I found it comforting and supportive to remember that there are many other people in similar situations to me who are definitely not giving up. I know that alternative approaches, by definition, are relatively unproven, but I can't imagine meekly going home and simply waiting till I deteriorate and die without trying anything and everything which might help. 

So stopping treatment at the Marsden certainly doesn't mean stopping fighting, and I've no intention of doing that. But, for the record, right now I feel pretty knocked back and vulnerable. I was due to have chemo this week but my blood tests today showed that my platelets (involved in blood clotting) are too low, so it's been postponed a week to give them time to recover. In some ways it's nice not having to have the drugs, but it's unsettling knowing that my body's already struggling to cope. My plan is to rest as much as possible and eat well, and I guess just take things a week at a time.

I realise this post is not what you'll have been hoping to read, and it's been difficult to write as well. In one way, things haven't really changed - yes there's been some more growth, but the tumours have been growing since last spring or early summer, so it's not really surprising that that's continued; and I'm carrying on with treatment for now - but in another way the shift feels huge, that what was an abstract possibility (no more medical intervention) is now an actual prospect in the pretty near future. So it requires a new level of processing and adjustment, and having to prepare for facing up to entering a new phase, yet without giving up hope. Not easy at all.