June 9th Tuesday Gottingen, Germany
I am sitting in a tiny apartment in Gottingen with my computer precariously balanced on the sort of table you would take camping. My three best friends are accompanying me (not all at the same time) so that I am not alone. Kate has the first stint with me and this involved flying from Heathrow to Hamburg. The whole experience has exposed my hopeless geography of Germany. Between Kate and I we have possibly 15 German words, and these include the numbers one to ten, giving us about 5 useful words (if you count wasser (water), mit (with), bitte and danke – and auf wiedersehen. ‘Which is the platform to Gottingen?’ does not feature nor does, ‘Excuse me but according to the timetable the train to Gottingen leaves platform 14 at 18.01 but we are confused as it is 17.57 and there are two trains on this platform, both going in opposite directions, one leaving at 17.58 and the other at 18.06. Where is our train?’ Luckily we are British and therefore used to last minute, unannounced changes to platforms and we worked out, with possibly a minute to spare, that our train was pulling in on the opposite platform.
I travelled with an enormous suitcase, not many clothes but lots of supplements, food, almond milk, juicer, fresh ginger, green tea. Before leaving I had been a bit worried about the state of my wig, which was becoming increasingly dishevelled. When I bought it I was advised that I could spend even more money and buy proper wig hair products, or I could use normal shampoo and finish off with fabric conditioner. As the wig was quite expensive I decided I would go for the latter. I think this may explain the state of the wig. You have to wash it at night and leave it to air dry. Then in the morning it looks scarily like a cat which has electrocuted itself and your heart skips a beat. Will it ever look the same? With some careful attention with a hair brush it would generally begin to look better, but what I could not disguise was the very strong lenor fabric conditioner smell. So, before Germany I decided I had to find a solution as there is one thing wandering around close to home in a wig which does not behave, there is another thing getting on a plane, train and then wandering around a strange city in another country with dodgy wig. I therefore went back to the wig shop and bought myself wig ‘products’. Shampoo, conditioner and a special wig hair spray. The brand (or product?) is aptly named ‘cyber hair’. They work much better. But they also weigh a bit and have all come with me. I am not really sure what else made my bags so heavy but luckily Kate was with me as I would never have navigated the route or managed to heave the cases alone.
The train went from Hamburg (which I now know is in the North of Germany) to Munchen (Munich). Gottingen is about 2 hours by train from Hamburg and passes through Hannover (which I now realise I should have flown to as it is closer to Gottingen than Hamburg). The train itself has a mixture of open carriages and closed ones, like trains a few years ago in the UK – a la Hogwarts Express. We squeezed into one of these and blocked the tiny corridor in it with my massive suitcase. It was a very crowded train but everyone was good humoured despite us blocking much of the compartment.
At Gottingen Station we took a taxi to Residenz Reich, a very compact apartment which I have rented for the time I am here. The city of Gottingen is very beautiful, many half timber houses, well known for its university (which has produced 44 Nobel Prize winners). The apartment block we are in is probably the ugliest building in the city. The apartment itself is more like the inside of a motor home, possibly smaller, so we have to be very organised. It is perfectly comfortable, the shower works well. The internet is impossibly slow and the kitchen would be a challenge were you to be too ambitious.
We arrived there at about 8.30 pm on Sunday. My first appointment at the clinic was the next morning just before 9am. The practice is owned by a Dr Martin. Praxis Dr Martin. He works in partnership with a Dr Nesselhaut who, from my research, is better known. Dr Nesselhaut’s clinic is about 25 minutes away by car in a smaller town called Duderstadt. They use the same techniques and the same laboratory and for one part of the process, the extraction of the white cells, I went to Dr Nesselhauts clinic as this is where the special machine for this is.
What is amazing here is that every single building down the street where Dr Martins practice is seems to be full of independent practices of other Doctors, all specialising in different things. I do not understand the German health care system, but it appears to me that with this model they have greater autonomy in how they treat their patients and organise their care – but I do not know enough about it yet. Dr Martin was reassuringly Doctor like – I am not sure what I expected – but I think perhaps I had a deep nervousness that he may be some crackpot. He was professional, credible and clearly knows his stuff. We discussed my treatment and I was given a number of consent forms to complete. These included a list of possible side effects. Which, as with any other such list I have ever come across, includes some very unpleasant, if rare, possibilities. Saying that, the list of possible side effects from my hormone pill (letrozole) is as long as my arm. I had the opportunity to ask him directly about the treatment and also work out my schedule for the week. I will have hyperthermia to the liver every day and my first treatment was that morning.
I asked him why he was able to administer dendtritic cell therapy and why we could not in the UK. I have still not got to the bottom of what prevents us doing this in the UK, but don’t worry I will. What he did say is that it has clearly taken them many years to be registered to do this and this has, and still does involve, very close scrutiny by the health authorities whose primary concern is safety of the patient.
I also wanted to know why, in his opinion, this was not a therapy being pursued more aggressively elsewhere. I am sure the full response is more complicated, but what he said makes sense and I think helps explain why many promising therapies do not get the investment or attention they deserve where big money is required and returns are unspectacular. This treatment essentially involves the creation of a personal vaccine. Personal to me. Using my white cells. It is time consuming and labour intensive and the vaccine created is only going to be good for me. So there is little/no possibility that this approach will open the way to a vaccine which can be used for the mass market. Clearly when balancing competing demands Pharmaceuticals need to consider the level of investment with potential returns and this approach is simply not commercially viable. I would like to be able to understand if the lack of interest in this approach is in fact based on good evidence that it is not of any benefit, or no more benefit than conventional therapies. The fact that it does not have the poisonous side effects and that the limited evidence I have seen on results indicates it is at least as effective as the worst performing chemotherapy, makes me wonder whether our obsession with chemotherapy is related more to the generalizability of this approach (ie it can be delivered to large numbers of people) and the fact that it is based on years of research (making it already old news in the new landscape of cancer therapies). We know that everyone is different and everyone’s cancer has unique characteristics, therefore the future really demands a growth in cancer treatments which are able to take advantage of that personalised information. This is happening, but slowly. So my plan is to stay alive as long as possible while the science progresses and ideally turns into treatments available to people like me. The barriers to this happening at speed are significant so it will take people like me to work out how to break these barriers down and make a bit of noise to encourage this. I just need to understand them better.
More about Hyperthermia Treatment ….
Hyperthermia (also called thermal therapy or thermotherapy) is a type of cancer treatment in which body tissue is exposed to high temperatures (up to 45C/113F). Research has shown that high temperatures can damage and kill cancer cells, usually with minimal injury to normal tissues. By killing cancer cells and damaging proteins and structures within cells, hyperthermia may shrink tumors.
My understanding from talking to Dr Martin, is that the Dendritic Cell Vaccine will train some of my immune system Generals who will then train a large number of T cells – ie their foot soldiers. BUT, there is a limit to how successful even this number of T Cell (foot soldiers) can be against circulating cancer cells, if this load is very high. If there is a solid tumour somewhere also, this makes their job even harder. The plan with hyperthermia treatment is that it constitutes a direct attack on the dispersed tumors within my liver, to weaken them, even destroy them, and so give the Dendritic Cell Therapy a better chance of success/a helping hand, by knocking out the western flank.
The process (as you can see in the photo) involves me lying on a bed which has a globe like ball under my back and a moveable arm which is brought down so that essentially my liver is sandwiched between the two. So far it has not been uncomfortable at all, in fact I feel little if nothing. The temperature has been going up daily and I have so far had 3 sessions, and had slight pulling/discomfort during today’s session. The main thing that has bothered me is that being sandwiched between these balls makes it more difficult to take a deep breath. They give me oxygen through the nose during the process, but on the first and also second day I had a mini panic attack. Nothing too dramatic but I kept imagining I could not breath, and the more I tried to compensate by trying to take a deep breath only to find I could not, the worse it got. Kate just calmed me down, rubbed my hands and feet and reassured me I could in fact breath. This morning, even before leaving the apartment I started having trouble breathing, simply the thought of going back triggered it. But the session today was better, I listened to a meditation download, Kate distracted me and the time actually raced by. I have 6 more of these to go.
The next major procedure, necessary to make the Dendritic Vaccine, involved extracting my white blood cells. The process is called Leukapheresis. I had spoken to a great woman who contacted me though cancer in pants, who is being treated by Dr Nesseulhaut and we spoke before I left the UK. She was really helpful and talked through what to expect, so I knew what was likely to happen. We took a taxi to Dr Nesselhaut’s clinic. The town Durdestadt is beautiful. The process involved sitting in a chair with tubes in both arms. One to remove my blood which then went through a centrifugal machine, which separated out the white cells. ‘The individual components of blood are of different size and weight which allows for their almost complete separation’. The second one was for the blood, minus the white cells to be pumped back into my body. It took 2.5 hours in total. It can make people tired and shivery. I did not feel too bad, tired but not hopelessly. We went straight home and I lay down to rest.
It is now Wednesday and I had hyperthermia this morning. Kate has taken over Ella’s role and makes me formidable juices and stands over me to make sure I consume them all. She is more lenient on the yucky lumpy bits that sink to the bottom than my daughter is. She leaves tomorrow and passes the baton to Teresa.
We have found a perfect little café which serves vegetarian and vegan organic food, along the road from which there is an organic supermarket. So my juicing regime continues with nice clean vegetables and I can buy most of what I bought with me in my suitcase. Note to self. Germany is quite ahead of the game when it comes to catering for alternative diets and clean living.
Before I end this blog I have to mention my first ever trip to the races (horse racing at Brighton racecourse) and my mini break in Portugal. One of my lovely cousins (I have many), Charlie, took me out for a day at the races. He booked the Silk Restaurant, which technically gives you a great view over the race course and had spoken to the marketing team and arranged for me to choose the best dressed horse before one of the 6 races running that day. I have no experience of horses, except that Ned goes riding sometimes, but I can tell a good plait when I see one (not that I was ever any good at them). So I managed this honour. In terms of making any money – the small bets I made were all hopeless and I made absolutely nothing. Charlie, who’s plan was to donate any profit from the day to cancer is pants, had mixed success and cancer is pants did received a donation of £125 (I suspect this was not all profit having been with him during the races!)
A brilliant, if risky, way to raise money for a worthy cause. The day was perfect as I have not spent time with Charlie for far too long. I was very spoilt. The slight problem with it was the lack of visibility. This was so bad it was literally impossible to see the horses, even on the big screen, unless they were running right past us. The commentator had a particularly hard time ‘As you can see there is nothing much to see. You can hear the horses thundering along the track and at this point, with a bit of imagination, you could all be winners!!'
In terms of Portugal, while Rupert was working during the day and some of the evening, I did nothing and had such a lovely time. The weather was perfect and I just lay and breathed in the sea air, looked at the sky and did not think very much about anything. I managed to swim. There was an indoor pool and a sauna room. As the weather was so lovely no one was inside so for me it was perfect. With skin sensitive to the sun because of chemo, and no hair, I had perfect privacy. I also used the sauna twice and oozed out some of those chemo toxins. I allowed myself fish and with my appetite returning I actually found my mouth watering before food a couple of times, something I really have not experienced for a very long time. I managed an Agatha Christie look with my swim hat and big sun glasses, covering my lack of eyebrows, when I was outside by the pool, and for walking along the sea front I tied a ribbon tightly around my wig. A tincey bit sweaty with the sun high in the sky, but perfectly bearable. We also spent some special time with my brother and sister in law who have just moved to Portugal.
The day before I left for Portugal I had a blood test in preparation for Germany, and my white cell count, which needed to be 4 for the treatment here, was still only at 3.5. It had simply not risen in 3 weeks. I had a test here on Monday, 6 days after that test and after this mini break, and it had risen to 4.6. My haemoglobin had also risen. So – I think I basically need lots more mini breaks!!