I haven’t been ignoring you. I usually say it’s because I have been having too much fun but the truth be known these past days have been hard and I meant to let you know what I have been doing but I just haven’t felt up to it.
Most days I am walking around in haze. The headaches have been hurting; the cognitive loss has been hard but today is a good day. I seem to have all my faculties and I am right now feeling good. Well sort of…
So what’s been happening over the past few weeks?
I think I will work backwards. I finally had a meeting at St Bart’s where I was told I had been accepted for gamma knife. But then on Thursday I was called by Doctor Oliveros to be told that she had received a letter from Dr Plummer and he had suggested that right now I should have whole brain radiation. I was confused. I said I had received an appointment to go down the very next day. She said to go to would proceed with the whole brain radiation. Right… I hate being messed about.
We headed to London in pursuit of gamma knife. We waited and the registrar we saw had no notes on my ‘story’. The problem is when asked any questions I am getting to the point of not being able to answer. It sounds so weird but I am losing all ability to answer questions. It makes me anxious and I need Pete by my side. I have good and bad days. That day was a bad day.
Luckily Pete did what he could and we pleaded with them to give us the gamma knife. The reason Dr Plummer suggested that I have whole brain radiation is because there are more than likely going to be more than four tumours. I guess I was hoping I could have it all in one go and it would simple, one visit all done. Pete had suggested that having whole brain would be better. I guess the down side is that I have had to wait for so long. Can you believe they only have one multidisciplinary meeting a month?
The other good thing was that I got to meet Dr Plummer and he now knows who I am. The registrar got him into the room and he discussed my case with me. Pete was very patient and really tried to express his concern but it was ok. I took it on the chin. I was gutted, mainly to have waited for so long. I had the MRI on the 1st and it was now the 24th every day the headaches getting worse.
The day before I went down to the Care Oncology Clinic in Harley Street. There I discussed details of being on Metformin, Mebendazole and Atorvastatin. It was a bit weird. I have been accepted onto their plan and will be given the prescription. I am going to take it in the hope it helps me further. They actually work with Professor Dalgliesh and Professor Stebbing so they are in good company.The problem is that when I returned home I couldn’t tell Pete what I had happened. I just knew it was good!
I have also been to the hospital for five hours of treatment. I had to have globemular filtration rate. This is preparation for having carboplatin, that I intend on having possibly. I had to have my bloods taken every hour for five hours….. Oh dear god.
Before this it’s all a bit of blur. I have spent almost every day on the sofa, wandering around the house and watching my house get dustier. I’ve been lost and sad but every night Pete comes home to cheer me up. That’s the only time I am really happy. Until now. I’m having a good day.
The weekends have been great. I had my best friend Lizzy and her hubby turn up for Sunday lunch. Sadly that was a bad day and I wasn’t feeling my best but being my best friend she sat with me until I felt better.
This weekend was amazing. It was Pete’s business 25th birthday celebrations. We had planned it for months so I had no intention of not going. It was being held on a boat on the Embankment in a posh venue. I wasn’t feeling hundred per cent but having people around me helps. Plus I also find a spot of retail therapy really makes me happy! Nothing new there except I make decisions quicker. I really know what I want now!
I was a bit anxious about being left on my own without Pete as I didn’t want to trip over my words or forget something I wanted to say but thank fully I held my own and did ok.
It was an emotional night and we invited some of our friends and old staff and new staff and clients. We had a blast. Everyone was concerned about me but I wanted it to be about Pete and his achievement. It was nice seeing everyone and having plenty of cuddles.
So I have today been trying to get hold of the hospital here and thankfully have got through. It pays off to be nice to people. I am going to see Professor Harris tomorrow for a clinic appointment but have also been told that I can go to have my mask fitted in radiotherapy. I have to wear a mask over my face. Luckily the treatment is only ever about 3 minutes long so I won’t feel claustraphobic.
On Friday I was lucky enough to come home to a card from Davina McCall! I know who organised it for me but what a day to get it…. It really perked me up.
A few weeks ago on the day that I was going for my MRI I had to do my final test for the health coaching course I had been doing all year. I sadly failed by one point… I couldn’t believe it and was so gutted. I decided to not worry about it but felt absolutely mortified that I had done the course and failed it. Well they let me do it again…. and I passed! Yeha!
I said I had an appointment with Dr Kenyon from The Dove Clinic recently well I had to cancel it. I couldn’t drive, obviously and I just have to put things on the wayside. I will deal with it when my head is clearer…
My chesty cough is still there. I have got a cold though and without too much detail I am bringing a lot of yellow stuff out of my nostrils. It’s hard to wonder if that what is causing my cough. Prof Vogl said that it would clear up in two weeks. That’s about now… The thing is I coughed so hard yesterday that I have started having those pains where I can’t move my side, just like before. It’s not what I need right now, and I hope it goes by tomorrow… Please…
So in one sense I feel like I am getting somewhere and the next I am not. It’s been a long month.
I really thought I would be into the treatment by now. Thank fully Prof Vogl has been done. I am returning in a few weeks for my next visit. I will also be having treatment from Dr Nesselhut and I may be seeing Dr Seibenhuner. Let’s get charged up with whatever I can have!
I am so pleased I cancelled my clients. This time I don’t feel guilty about having had to. I just needed to.
I just want Pete to know how thankful I am to have him. He has been doing everything for me. I am like a lost sheep right now but he gives me all the love I can ever need. Give me my brain back and I will fine. I can then deal with my chest and lungs.
I want to thank everyone for the support they have been giving me. I feel overwhelmed every day.
Thank you will never be enough…….XX