So I went to the hospital. Pete came with me and was really sweet and asked if he could come into the MRI room with me. Have I mentioned I hate MRI scans? He looked at me the whole time through the little gap.
I then had a CT scan. The guy was really interested in a story that Pete told him and I don’t know if that was a good thing or not but it took our minds off what we were there for. Then, on our way to the CT scan they said I was to be seen in triage. Oh god. I knew exactly what that meant. That meant they needed to see me to give me bad news….My heart sank and I felt dizzy with sadness.
It was all a bit of blur with my mind racing and then putting on a brave face I was told that there were four tumours in my brain. Oh B*****ks, for want of a better word!
A few things were asked but I was told that I had to go on dexamethasone that night and to continue taking it the next day. Did we have any questions? Um…….? It was all a bit too soon for that.
What we should have asked was ‘did I really need to take the night time tablets as they make me frantic?’The answer should have been yes, or alternately they should have perhaps pointed out that it was necessity to take those tablets.
I woke up with such a terrible headache and found out that I should have taken the tablets because the headaches were so terrible due to the inflammation that the MRI caused. Thanks guys for telling me! But then I guess they expect normal people to follow their instructions. Have they met me before? Ha-ha.
We came home and Pete was very clear on it all being ok. He said that there is nothing new going on there. It has been like it for six weeks, there is no need to worry now. I know he is right and I know that nothing has changed. We just needed a plan. As always.
The next day I got a call at home and it was Emma, the lovely secretary from the NHS. She said that could I go to see Dr Oliveros at 4.40pm that day. Yes, absolutely. She told me where to go and I let Pete know. We got there at 4.40pm and was told there was a delay but that’s standard I guess when it’s late in the day.
By this time we were both in quite good moods, bizarrely enough. The news had sunk in and even though the meds make me feel manic I felt quite calm and I had spent the day on the sofa. However that wasn’t as much fun as I had hoped. Time was slowly passing and I just wanted to get on with something.
Dr Oliveros is lovely. Really happy, very explanatory and an all round nice girl. She explained my options. Firstly; surgery, secondly; gamma knife and thirdly; whole brain radiation. The first one, I can’t have. It can only be for someone with one tumour. The second is potentially an option although because I have four tumours I am outside the remit. Can you bloody believe it? However, Dr Oliveros is going to put an application in for consideration anyway. It would be done by a colleague of hers at St Barts, London. Even though she knows there is a chance it might not happen she still feels that we could just slip through the net. Thirdly would be whole brain radiation. Now this doesn’t fill me with joy but I have spoken to someone who says it is potentially very good. The down side is cognitive issues as well as hair loss etc. The course would be for ten days and that is it. I would need a mask so I cannot move for about three minutes at a time.
So that makes me feel quite good. The fact that she is trying for what thinks would be a good option then getting me to sign the consent form for whole brain radiation just in case.
There was an option to say if we cannot get the gamma knife done because of it being over the limit of tumours, can we pay for it? Well if we must but come on! I tell you what; we pay for the first one then you pay for the others. Deal?
She did say a few things that worried me. She said that she was surprised I looked so well considering the swelling was so bad. The tumours are tiny, the biggest only being 1.5cm. It is the swelling that is causing the issues. She said also that this is very serious. Do you think we didn’t know that? We were just trying to make light of it whilst sitting there with her.
We came home and I have to say I do feel different. I don’t know if it because I have the knowledge that something is up or if because I am scared or just because….
I still don’t have the results for the CT scan as yet but I am due to see Prof Harris first thing Tuesday morning. That will then tell me what is going on everywhere else.
I went to see my acupuncturist today and we chatted about il2 injections and their purpose. He said that it is quite likely they are doing their job. This is something Pete has also said. He said that the injections were working so well that it is highly likely that is why there is so much swelling. Exactly what Mr G said. He said that the DC cells and the il2 were all having a positive effect (well and negative effect) on this. Well that is good in a way but also not great for me, in others.
It’s all swings and roundabouts isn’t it?
I feel like I am chasing it around my body. And what about this blood / brain barrier? How did that all over of a sudden stop working?
The doc said we don’t know if there are more in there. I hope, of course, that there aren’t. I am assuming as the tumours are small and they haven’t been there that long.
So where does that leave me now? I guess that means we wait for more results. In the meantime I will get more info from Prof Harris and then find out from Doctor Oliveros the next step. I have everything crossed that she can organise the gamma knife. It would mean less invasion of my brain!
In the meantime I have informed everyone who are involved.
Dr Nesselhut wants more info.
Prof Dalgliesh seems to think gamma knife is a great option and if they won’t do it for free here to go and see one of the best in the UK.
I have also contacted Prof Vogl, who does TACE (trans arterial chemo emobilisation) This can not only help the tumours in my lungs but all slow/stop the ones in my brain.
Today I have had a call from the London care oncology clinic who has said that I can have an appointment to discuss Mebendazole. Just because one element of treatment isn’t working doesn’t mean I should stop everything. Therefore I have to continue with my plans as before and investigate every avenue.
I feel better knowing what is wrong with me. I feel better having a plan and I also feel better on the whole. I do feel a bit sketchy but that could be the drugs. Bizarrely enough the drugs reduce inflammation as they are corticosteroids. This is again the body using my immune system to help heal me.
The support I have been given is overwhelming. I cannot thank everyone enough for their love, respect and drive that they have given to both Pete and I. I simply couldn’t have done it without Pete and he was scared too. Bears aren’t meant to be scared and he didn’t like it. I feel terrible knowing that everyone has to go through even more of this crappy stuff but I can’t help where it goes. I think I can, but I can’t. I know mind over matter helps but who knows how this disease really works.
I have had over 3000 people look at my status on face book. That’s crazy and so lovely knowing that people really care. If I could thank you personally, I would.
So that’s that, the next chapter of this book. I have to keep going. There is no other option. It seems harsh to everyone involved and a real kick in the teeth but as I always say, ‘no one said it was going to be easy’. Damn right….. Anyway I have bought a lottery ticket tonight maybe my luck will turn!