It’s been a long week and as usual we are glad to be home especially as it’s only a week until Christmas!
Pete thinks it has been the hardest trip we had in Germany primarily because I was unwell for most of it. Nothing specific really other than suffering diarrhoea, nausea some days, totally unexplained. I think maybe due to anticipation and anxiety of what was lying ahead of me. I also had trouble taking my tablets, again due to my head stopping me. My appetite suffered some days and then I started treatment at Dr Seibunhuners which entailed infusions of artemesinin, DMSO, B17, and incorporating insulin using the insulin potentiated therapy.
Firstly my veins in my left arm are suffering and I feel every prick of the needle so much so at the moment. The DMSO stinks and I immediately wanted to throw up. Not very nice for anyone there. I calmed myself down and got on with it but to be honest that stuff does my head. It’s supposed to enhance the intake of treatment but boy, I really hate it. Pete isn’t a fan either as I smell of rotten cabbages for days. It’s like when you eat garlic it lingers for days and washing, spraying perfume doesn’t disguise it. I oozed cabbages.. Brilliant.
Whilst having the infusions and IPT I also had oncothermia like that at Dr Nesselhuts. It took much longer this particular day than it did the first time I visited. I don’t like change and I was getting frustrated with the lack of consistency. Every clinic and hospital does things differently. It takes a lot of getting used to.
Prior to this we had spent a lovely weekend in Cologne, and although we have been to the Christmas markets there before, we believe they are the best in Germany. So classy, have so much to offer and a real delight. The food is immense and the atmosphere is second to none. I would highly recommend going.
Yesterday we got up early for the first appointment available with Professor Vogl for TACE. Guessing I was first on the list I assumed I would be finished earlier than normal and we could be driving back to the Eurotunnel to catch a late train to get home. Although we love it there Pete really needs to get back for the business and to earn money to pay for this treatment.
Because we wanted it to happen it didn’t. I waited for hours in a bed before they took me into theatre. They then got me ready for Prof Vogl and left me there on the table on my own with no one in sight for about twenty minutes. Despite knowing I am English and all speaking perfect English and having met me three times now almost all members of staff kept talking to me in German! It was driving me insane! This time the procedure really hurt. I felt the cut in my skin and the tube being pushed but no flub dub in my heart. So strange. The drugs they gave me made my head spin… Again it felt so inconsistent to the time before. Once I had rested for three hours had to have my CT scan before seeing the Prof and getting on our way. Well it’s the law of attraction isn’t it? We were sat there for hours and despite me asking to be seen so we could go home they just left us there. The CT scan took 1 minute. Speaking to the Prof took five minutes. Seriously, I was so frustrated. No matter whether you are a private patient spending thousands on every visit, it doesn’t seem to matter. I am still treated just the same. I expect more. That’s just me.
On looking at the site where the procedure was done I do have more cuts and bruising and discomfort this time. I don’t know why or what was different. I do know the Prof is very pleased with the results so far and has suggested one more TACE then we ablate or use LITT which is a laser version to get rid of the largest tumour in my right lung. Pete and I told him that it had already been ablated. He said it didn’t work…
Whilst at Dr Seibunhuners the day before in my head spinney state after having no sugar or food since the night before I got a call from Dr Lim at St Barts. I was told that my tumour sample had returned negative and also due to the positive results of my recent CT and MRI scans that I was no longer accepted on the trial for PDL1. I hate being put on the spot and in my state I didn’t really have much to respond with so once I gathered my thoughts I sent Dr Lim an email.
I basically expressed my confusion as that I simply couldn’t have waited two months to start treatment and had to have radiotherapy and something to reduce the cough and the growth in my lungs. I wondered why I wasn’t accepted based at the time I went to see them? I wanted to know what was I meant to do? The reply I got was could I go and see them… Seriously? I replied telling her my time and money was precious to me and it would so nice to be able to receive treatment in the UK without having to pay for it like we are at the moment. I reluctantly agreed to visit her and Prof Schmid today.
Following that I waited to see Dr Seibunhuiner who wasn’t free so we decided to leave. We met with friends in Frankfurt and it was just so lovely. But I started to feel flu like and aching in my hips and lower back. I had gone a funny colour of white and felt freezing cold. Pete took me home and got my rugged up in bed. I eventually warmed up then became really feverish. Now I always believe that these could be good signs that something is working, or at least happening inside me! The next morning I felt much better before going to see Prof Vogl.
So we belted it all the way to the Eurotunnel hoping to arrive by the skin of our teeth. We don’t make things for ourselves! We would have been fine had a car not set on fire closing our motorway! Argh… being calm we just sat there whilst the road was closed and then got back on our way. We somehow did make it to the train and then got back to Blighty. The journey in England was worse than the journey in Europe. Motorway slip roads were closed, there was so much traffic and this was at 11pm! Finally arriving in the early hours we got to bed and felt thankful to be home.
Pete got up early as usual eager to get things sorted in the office and I got up and got myself on a train to London. I did see Prof Schmid quite quickly but as I expected it was to tell me that I wasn’t going to be accepted on the trial. Pete thought they would be accepting me because surely they wouldn’t get me to go all the way there when they could have emailed me this information?! Don’t be silly. They just added insult to injury.
Pete and I are sure that immunotherapy and PDL1 and PD1 are really something that could be a game changer for triple negative. There have been great results on the studies and things are really looking up. The problem is to get it privately we are looking at £150,000!
Prof Schmid as lovely as he is, said that he believes that PDL1 could be more harmful to me than my current treatment, although he did seem very negative about TACE. He just believes in chemo and all the other pharma type stuff. It’s to be expected really. I can keep in touch and there may be something that will come up for me in the end. But it was made clear that the current treatment I am on will one day stop working like all other treatments. He also said I can’t keep having radiotherapy so if the brain tumours grow I would be put on medication. BUT to stay on the positive side as things are currently working.
I may sound a bit down. This is due to a bit of tiredness and mixed feelings. Female hormones don’t help either. I’m feeling very hormonal. I actually cried when I came out of the theatre yesterday. I felt like a second class citizen. No one really cares. They treat me like a lump of meat. They don’t care about the outcome or my life or the impact it has. I felt all the effort all the people like me are going to, to extend their lives and to be the miracle they hope they can be, and no one really cares. Prof Vogl barely makes eye contact and doesn’t give much time. But that’s him. To be honest I feel that’s what most cancer doctors are like. They forget you in a flash, they want your money and what they say goes. The only one I think that does actually care about me currently is Professor Harris. He genuinely seems interested in me and my plans for future treatment. I still have trouble convincing people to help me with further treatment if it isn’t simply chemo and I really get the feeling that time is running out and treatment is limited. They don’t want to hurt my feelings but I can see it.
A saying came to mind whilst away and I emailed it to Dr Lim, ‘I’m damned if I do and damned if I don’t’. I just don’t seem to get the luck. If I waited to progress and get worse then I could be in a very sickly state, near death maybe. So I proceed with getting better and then I am told I can’t have treatment because I am doing well. I am over the moon that I am doing well. But we just needed a bit of help and some time away from travelling abroad and costing us so much in finances and upheaval. Also making changes to treatment really keeps canSer on it’s toes. But I am grateful that I can go abroad. I thank my blessings every day that I can. I just wish it was better for Pete. He didn’t sign up for this. I do sometimes wish things could be different.
This blog isn’t currently full of Christmas cheer but it will be! It’s not like I am sleep deprived so I apologise… We had a lot of brilliant sleep. I will give that to Germany. Their beds and duvets are the best! 😀
It’s good to be home even if it is brief. We need to organise next month’s travel but right now I have a kitty on my lap purring whilst I type. I intend on getting festive watching old Christmas movies and just want to plan for 2015 which is going to be equally good if not better than the previous 4 years!
I am going to make some tasty vegetarian food, I am sure Pete could do with avoiding sausages and pork for a few days; he must have the meat sweats! Tomorrow is another day and if we get to see it then we are blessed.
Light and love. X