I had a brain MRI on Monday, obviously with the possible outcome being that they would see whether the cancer had spread. No prizes for guessing the outcome, otherwise I wouldn't dedicate a blog post to it. The good news is that they did find some brains, but they also found some small spots which could be tumours. They are very small, and because there hasn’t been an MRI there before, we don't know how long they have been there, so fingers crossed they have been there for ages and are not growing.
It is just another blow that we have to deal with; Femke delivered the news on Tuesday morning, she was very sympathetic and talked about further treatment options from the Amsterdam hospital. The difference between now and past discussions we have had about treatment is that she was talking more about quality of life and how far I/we want to carry on with treatment. The further away we get from standard treatment, obviously the lower the chance of success and the weaker my body gets. What a rosy picture I’m painting! Well, it’s harsh but unfortunately true, we need to discuss these things and decide what we want. The most concrete question she had for us, which she has also mentioned before, was about being resuscitated if my heart stops. Before any operation/serious treatment you get this standard question: normally, you don’t think twice about it; it’s a yes. However, now, I have to seriously consider when I reach the point at which I say no. If I am in such a bad physical state that I am in constant pain and can’t do the things I enjoy and am just bed-ridden, then I think that is the point at which I might say No.
Well let’s move on to less depressing subjects – I’m sooooo glad the McMillans came over, I realise it was a bit shit for them, and not the weekend they were expecting but on the other hand, it was great to have them here. Having Caela to stay with me on Thursday and Friday night was such a relief. I couldn’t have been on my own and she really helped me out of a couple of panic attacks. They are so horrid, and I really don’t know why they have suddenly appeared. Bloody annoying because now I am panicking about having a panic attack, so much so that I prepare myself for it in the situations I know it is likely to happen. In the bath, for example, when it is very warm, I get to a certain point that I have to get out because I feel really claustrophobic. So I get out as quickly as possible…(which is not very quick) , luckily we have a huge window opens very wide, so I open that and try to breath in the fresh air, which helps, then I get out and out of the bathroom. One of these attacks, I sat naked at the top of the stairs while caela told me some stories about the kids to distract me and all the time holding my hand and helping me breathe calmly. What I sight!
Saturday Ed was ok and relased from hospital, so he met up with the family in the evening and they went for dinner and drinks in Utrecht which I am so glad about, it meant he felt well enough and it was at least doing something normal and fun with the kids. Sunday, it went downhill, Ed was throwing up again and not feeling good so he went back in to the hospital. Luckily Esther and Aschwin had offered to go canoeing with Grant and the kids to a pancake house near Utrecht so at least they had an activity for the day and also had a chance to cycle in Utrecht. They all came in to see me late afternoon which was nice; I just don’t like the kids seeing me like this and not being able to do stuff with them, cycle, play in the park. I still keep thinking that I will get better and it will improve – with immunotherapy I really hope it does!
One of the things Femke is sure of is that it is definitely worth giving immunotherapy a chance, so I will have 2 more sessions ( I had one on Tuesday) and then a CT scan and keep everything crossed that it is a success.
Had to say goodbye to the family on Monday; they came into the hospital on their way to the airport and it was an emotional goodbye as ever. Bit more this time because I wasn’t feeling great and really wanted them to stay around but also because the next time I will see them is on 20th September when I go home – with the uncertainty of my health at the moment, I can’t predict whether that trip will go head or not. I really want it to of course, because I want to be at home, see everyone again, but I feel guilty about not seeing my dad –we ought to skype more often, but he is grumpy old-person about technology sometimes and getting him set up on Skype might be a challenge. I did it last time when he was at Caela’s so will have to try to do it again next time.
It’s Friday evening now, was allowed to go home if I wanted to, but I don’t feel completely happy going just yet. I was quite breathless yesterday and that makes me panic.. which isn’t helpful when I am trying to calm down and prevent myself having them! I went out Wednesday afternoon for a few hours so at least I could eat some normal food which hadn’t been boiled to death.
Yesterday I had another MRI on my neck..why didn’t they do that when they did the other one? I think it was slack to be honest(!), but it was actually because what they saw in my brain scan can’t explain the pain and pins and needles in my arm, so they thought it might be tumours in my neck causing the nerve pain.(well, I will let them off then) Hmmm, the doctor came round this afternoon and it was as we expected; there are some spots mainly on the left side of my neck and they are pressing on my nerve and causing the pain. They can zap them with their big radiology machine which should release the pressure and get rid of the pain… so great! They have put me down as a ‘semi-urgent’ case! If I was urgent it would mean the doctors have to work at the weekend, but semi-urgent means as soon as possible as long as it doesn’t interfere with my healthy, vigorous and worthy weekend! So basically my doctor here advised us to keep Monday free as it could be Monday or Tuesday. I'm not looking forward to the radiotherapy at all, I have had it so many times now, it is not the pain, it is definitely uncomfortable because the 'bed' you lie on is not soft in any way and you have to stay really still -tricky when you are lying on the part of your body that causes the most pain. The MRIs that I had this week weren't a bundle of joy either. As I was lying there yesterday, I was really wondering why no-one has invented a noise free MRI. I realise it doesn't add anything to the success of the results but it would be so much more manageable.I wonder how many people use the 'squeezy alarm ball' they give you to hold. So if you have a panic attack or need to get out for some reason, you can squeeze the ball and they will pull you out of the machine. It's not pleasant, but doable - the two things I would change would be noise level so you an actually hear the music they are playing and the length of the scan... it's jut over 20 minutes! With a CT scan you're in and out almost as long as it takes me to remove my pants! (i'm a bit slower these days!)
I do have a very important appointment at 17.15 on Monday: I am becoming Dutch! The ceremoy is being held at a museum in the centre of the city and it is all very official and impressive. I have to have another look at the paperwork to see what exactly we have to do and what I need to say. I think I need to swear allegiance to the Dutch Royal Family and everything Dutch… think, for example, of stroopwafels, haring, chocolate sprinkle things to put on cakes, Heineken, kibbeling, bikes, cheese, dodgy deep fried snacks you extract from a small window in the wall of a dubious looking snack bar, drop (liquorice) etc....do you see a pattern? - yep mostly food producs!
Once have done all that and had a bit of a sing along, I get a certificate to say I officially a Dutch citizen; something I can wave in Theresa May’s face when she comes up with who knows what kind of regulations regarding Brits living abroad. I would still need to apply, and pay, for a passport if I want one, but I don’t need it right now so I am going to wait.
I’ve been in hospital nearly a week. I think I know all the nurses and support staff, the ladies with the food and drinks trolleys know me and ask if I want ‘the usual’ when they take my drinks order! In one way it is comforting and nice to be among familiar people… but actually, I would rather be familiar with a barman or lady, than a tea trolley lady in the cancer ward.
Oh well, can’t change it. Just the fact that I am out of bed and well enough to write this post is testament to the fact that I am feeling a bit better now. So taking each day as it comes, I think I will go home tomorrow and Sunday if possible… I want to keep my own room though!! I will have to double check that… don’t want to be downsized or relegated.. and I certainly do not want to be in a shared room. That would be the worst of all things! …Well of course it wouldn’t, if they came and told me the immunotherapy is working but I have to move to a shared room, I would take it!
So on this sunny evening, I will leave it there and keep fingers crossed that things start working and I keep on improving. No more bad news please!