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