Ok its now been 9 months since I have posted anything but I’ve kind of been a bit busy as most of you will know. Since my last post when I finished off telling you that I was going for another operation on the brain (known in the neuro world as a Craniotomy) to remove another 19mm tumour I’ve crammed a lot in and as you can all guess by now it hasn’t been plain sailing.
On the 15th May I had my operation. As I had been here before I wasn’t too anxious about the operation. Although on the Monday morning when they were getting me prepped for theatre they mentioned my gel nail polish. I told them that I’d only just got it on a few days before as I was meant to be in Majorca on holidays, not actually being prepped for theatre. They laughed and said ok we will just remove one nail. Mr F (my neurosurgeon) came in to talk to me about the surgery and check they had shaved my head in prep. He decided he needed another bit of my hair off so with the nurse using acetone to try and get my gel polish off and Mr F shaving my head it was just like being at the beauty salon which we all had a laugh at.
After surgery I was obviously groggy but recovered well apart from a low blood pressure which was normal for me. I continued to improve over the next few days taking plenty of prescribed drugs to relieve the pain. Mr F had told me the operation had gone well and my MRI a few days later showed they had got the tumour all removed.
This is what the head looks like after a craniotomy… look away if you are sqimish!!
Anyway, Mr F had agreed that my whole brain radiotherapy would wait until I was home from America in July, so I was just concentrating on getting over the surgery as I needed to get a fit to fly form signed by Mr F for the airline company before I would be allowed to travel.
Two weeks after my brain op was my retiring party with all my colleagues. Sad to think I was having to take medical retirement from my job at 38 years of age but it was the right decision. Everyone was really concerned about going ahead with the party, but I was adamant that the show must go on. So, on Friday 26th May on probably the best summers day we had last year we all met in the restaurant for my lunch. All my colleagues who were my friends having worked with them for 8 years as well as older colleagues/friends who I had worked with previously had bought me beautiful gifts, flowers, vouchers and $ for my upcoming trip. After lunch we went to the roof terrace to soak up the sun it was an amazing day and one I will never forget.
When an appointment came in for my whole brain radiotherapy planning meeting I assumed it was to get it started as soon as I came home from America. Therefore, when the oncologist told me I was starting it the following week I protested saying I was going to America and that Mr F had told me the whole brain radiotherapy could wait. But that fell on deaf ears and I was told I was starting it the following Monday for 5 days.
Whole brain radiotherapy was once the only option for brain tumours as chemotherapy did not penetrate the blood brain barrier. This is the barrier at the top of the spine which is there to protect the brain normally from infections and virus’s. However, over the years there has been some development in chemotherapies for brain tumours, but these are still limited and there is a lot of research ongoing to try and get chemotherapies to penetrate the blood brain barrier.
As I’ve mentioned before the development of Stereotactic Radiotherapy aka. Gammaknife or Cyberknife are new types (10 years) of radiotherapy which targets the tumour only and not the whole brain as the long term side effects of having whole brain radiotherapy are quite severe such as problems thinking clearly, difficulty managing tasks you previously found easy, poor memory, confusion, personality changes, headaches similar to migraines that come and go (called SMART attacks)
However, I had no option but to go with the whole brain radiotherapy as Mr F had said there was a risk that there were cancerous seedlings somewhere in the brain lining that gamma knife would keep missing and therefore I’d be back in the same position every few months and I’m sure there is only so many times I will recover from open brain surgeries before major complications would arise.
I must say I found the Whole Brain Radiotherapy tough. The nausea I had with it was awful I couldn’t eat, and the fatigue was so suppressing. The Side effects went on for well over a week, therefore a week before we were flying to America I was still in bed and not a suitcase packed. To be honest while I was lying in bed I could think of nothing worse than flying to America. So, it really did ruin the whole anticipation of going on such an amazing holiday.
A few days before we were flying I started to get my energy back and thankfully the nausea left me, so the suitcases were packed everything was finalised and on Friday 30th June we headed to the airport to start our road trip. Once at the airport with a few hours to kill we went for lunch it was while I was sitting waiting on my lunch I happened to rub the left-hand side of my neck I felt a lump. I knew exactly what this was however decided in that split second not to mention this to my husband as I didn’t want to ruin the holiday, however being in this game for almost 2 years I knew it was a swollen lymph node and although there could be reasons such as infection for it I had no symptoms of an infection therefore the plausible explanation was my cancer had spread again.
With the spread of cancer put to the back of my mind (well as much as possible) I decided we needed to enjoy this holiday without the worry or talk of cancer. We finally boarded our flight to LA at 2.30pm with an eleven-hour flight ahead I got settled into my seat and started my marathon of Suits. Unfortunately, during this flight my hair started to fall out!! This was a side effect of the whole brain radiotherapy which I knew about, however I had hoped it wouldn’t happen until we came home so I have one holiday photograph of me with hair the rest I don’t. So, all in all Ive had yet another eventful period with more brain surgery, retirement, an American road trip, topped of with more cancer.