I’m already back from radiotherapy number three.
Yes, times flies. I started last Thursday. Pete has been taking me to the appointments and to be expected I was really nervous for my first one. Things didn’t go quite to plan when we got the hospital either. As we pulled into a parking space, driving our 4 x 4 vehicle mounting a curb we heard a loud hissing noise. Nooooooo. A flat tyre. Pete said he would get it sorted whilst i went and checked in. Sadly for him it wasn’t quite that simple what with all these new fandangle cars. He couldn’t simply 0put on the spare he had to reset the on board computer and so on… I felt so bad for hm. He really wanted to come in with me to calm me down and there he was having to call out the RAC to get them to sort us out. It didn’t matter to me. I was called in and on when the mask. The bit I was dreading was the fear of wanting to cough and being under the mask for so long. It took about 10-15 minutes and I could feel my heart rate increasing. It was hard to know when the radiotherapy was actually happening too. But it was painless and I got through it. Simple.
The next day I was even more nervous. Mainly through the anticipation of it all. I have been desperately trying to get rid of the cough and cold. To top it off my ribs that had been hurting from over coughing and that morning doing a normal cough I heard a great big pop in my ribs. I was in agony. Oh bugger not more pain.
There was an hour delay on this particular day and I was getting myself in a tiz waz. I don’t know why. It’s silly really. And it was silly because this time they admitted they have problems with the machine the day before and it shouldn’t have taken as long. It only took about 5 minutes today. Wow, I can handle that.
So Pete and I left 2 hours earlier this morning to ensure we arrived on time. Morning traffic is a nightmare and it took us about an hour to get there. Not bad really. They actually saw me early and I was in and out in flash. Hence why I am now back home typing this.
The weekend was a mixed bag. I have been advised I should feel worse before I feel better. So far I have continued taking the same amount of steroids. I haven’t had any problems with headaches. Weird. Saturday however was an odd day.
I took my morning tablets a combination of medication and supplements. We went to the supermarket then I had a huge urge to vomit. It wouldn’t pass and I had to be sick in Tesco’s’ car park. Classy. I must have looked like I had a hangover from the night before. If only.
We came home and Pete was cooking us a lovely brunch and I was really hungry, yet had to be sick again. I always think it’s something I have ingested and immediately think the drugs/supplements, but then Pete suggested it is the radiotherapy side effects. I had quite a lot of sickness episodes when we were on holiday in France, before I knew I had the brain tumours.
I ate, felt great but then my condition declined as the day wore on. I felt shaky, drained, I had gone a funny colour and decided that I should feel sorry for myself on the sofa. I couldn’t sleep but felt rotten.
Yesterday was a different story. I slept really well. We got up and had breakfast and did the usual morning stuff. I didn’t feel sick at all. We went out and I had a lovely morning seeing my step son and doing a spot of shopping. Such a difference a day makes. One thing I do constantly feel is sketchy and frantic and it makes me shake. It does improve as the day wears on but I think that has to be the drugs.
Last Friday I had a call from a consultant at St Barts. I have been referred for a trial there regarding PDL1. A friend of mine had mentioned it and I decided to push to see if I am eligible. I didn’t expect them to be quite so fast moving at this stage. I told the consultant that Pete and I could visit to talk about it later in November when we had some free time and after Germany. She called and said that they needed to test my tumour sample, which the Churchill hospital still has from four years from my original surgery. But in order to do that I need to sign a consent form. I did try to blag it and say that I could do it by email. No way, Jose. That didn’t cut it. So she has asked to me go to down to Professor Schmids clinic on Wednesday morning. I had explained that i have radiotherapy in oxford and its very time restrictive getting here, there and everywhere. But she insisted and said I wouldn’t have to discuss anything, I could go back with Pete another time but let’s get the ball rolling with the tumour sample to see if I am actually eligible for the trial as these things take a few weeks. I totally agree with her but the logistics of everything seem crazy! So I’m booked for Wednesday at 10am in London. I have to get back to oxford for my late afternoon appointment for my very last radiotherapy session. I’m sure I will do it. Well I just have to. I have to find out if this trial is any good. It could actually mean not having to go to Nesselhut in the future. I will provide more on this trial when I have it.
As per usual it’s all go. Life is never easy. So what am I going to do with the rest of my day and time?
I have a lot to organise still. My friends are hosting the charity ball at the end of this month for my chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute and even though are doing most of the work we still have spaces left and things need to be completed for the auction.
If you like to attend, the ball is being held on Friday 21st November at Caswell House, Oxfordshire. The theme is Venetian Masquerade Ball. The costs of the tickets are £100 per person and so much of it is going straight to the charities. The suppliers have been amazingly generous. It will be night of glitz and glamour. If you are interested in finding out more and booking tickets please contact me on; firstname.lastname@example.org
Other than that I still have to focus on getting well and that includes doing my normal inhalations and nebuliser and more. I haven’t quite got back into exercise and know the importance of that. I just have to find the motivation. I also need to get back into meditation. Today Deepak Chopra starts another 21 day challenge on the Energy of Attraction. If you would like to join here is the link : https://www.facebook.com/ChopraMeditation
Life stills very manic to me and I am not quite the girl I was. I have lots to look forward to though socially and treatment wise and just have to get used to living a bit out of my comfort zone for a while.I do feel positive yet I am a little confused if I am doing the right thing. I can’t decide if the drugs and supplements are right for me. Until I stop taking steroids I don’t think I can answer those questions.
I have adopted the ketogenic diet now. I feel at ease with it. It went against the grain because of all the meat included but I do feel I need to make sure I don’t lose weight. I worked out my BMR and the number of carbs, protein and fats I am to consume. It’s a bit of a science but I have to try. If you would like any information Patricia Daly is brilliant and there is also an ebook I work from with 2 weeks worth of meal plans available.
I have been thinking, ‘What was I doing differently when the tumours almost disappeared last year?
I know I was on dc therapy monthly and I had been using Capecitabine, but what other things I was taking that are different to now. How did it work then but then stopped? It has to be something I did. I can make it go away again.
Luckily for me the cough is now going. That means the cold is going too. I haven’t coughed through the night for a few nights. This means the lymph nodes must be improving. Prof Vogl said it would take two weeks from my first treatment with him for this to happen. Weirdly it was two weeks to the day that I stopped coughing. I wonder if the cough would have subsided sooner had I not had a cough and cold. This is a really positive sign. It gives me so much hope and now I can’t wait to find out from my next CT scan what is going on in there.
Treatment number four tomorrow afternoon…..
Now what is it I have to do?…..Space cadet. X