Friday 25th April 1630 hrs
It has been rather an odd week this week and I can’t quite work out why.
Well, the weather has been pretty gloomy and wet these last few days I know. I had got used to the blue skies and sunshine during the last couple of weeks which was very uplifting – I’d been spoilt, basically.
My eldest daughter, Sophie, took a week off work this week and has been at home with us. She lives in London. It has been really great having her around too.
I have been in and out of St.Lukes, treatment centre for cancer at the Royal Surrey Hospital, Guildford all week. First time I entered its doors I felt a slight sense of dread, perhaps fear or even denial – let’s face it, all of the above and a few other things thrown in for good measure.
The week kicked off with a visit to the dietician, speech therapist, nutritionist and 2 research nurses. A stack of more information and a really nice bunch to boot. You really get a sense of just how many people are involved in your care. It’s scary, heart warming and also giving me, at the same time, a piece of mind knowing that there are a lot of people to contact should the need arise for whatever reason.
A big decision had been in the forefront of my mind this week. There was a possibility for me to take part in a clinical trial which I was aware of, having had several conversations and information given to me to read.
I met up with the research nurse at the beginning of the week who explained the ins and outs. It was all academic at that particular point because unless I proved positive with an HPV related cancer I wouldn’t be able to take part, but I sat and listened and asked lots of questions.
Stepping back a month, when the consultant told me I had cancer, he was surprised to hear that I wasn’t a drinker or a smoker – with mouth cancers these things can play a significant part.
He also briefly mentioned the Human Pappillomavirus (HPV) which has become increasingly more apparent in recent years with such cancers. HPV comes in many strains and can reside harmlessly in your body for many years. He said I would be tested, certainly under the circumstances.
If indeed, it came back positive, this would ‘swing’ in my favour for a more positive prognosis – I was keen to establish as soon as possible whether I had this related cancer.
I really gave the trial a lot of thought, but I decided not to take part. I won’t go into the details but suffice to say I wasn’t 100% on board – they did say if there was any doubt then I shouldn’t go ahead.
I rang the research nurse back this afternoon to find out whether the results had come back – once again, a waiting game. He had just received an email from Histology stating that I had indeed the P16 protein which is left by the HPV.
He also said it was a positive outcome for me as results have shown that people fare better with an HPV related cancer – good news for a wet and cold Friday afternoon!
I have had a head and neck mould made for my Radiation treatment. A technical team swooped down on me and created a lime green, very tight fitting, mesh mask – yep, I like the lime green colour!
It serves a very important purpose of keeping me in a precise position during the sessions of radiation; along with CT scans to build a 3D picture of my neck and throat so the radiographers and radiologists etc can work out just exactly where I will be zapped. Therefore, during my 30 days, each day will be precisely the same as the last.
I now know how the man in the iron mask felt – just a tad claustrophobic!
I can choose my own music while being zapped, so the stress of having to compile a list of appropriate tracks, as you can imagine, is beginning to weigh heavily on my mind – suggestions welcome please.
One thing I have realised is that being unwell, off the hooks, poorly …can be very time consuming and my documented pile of appointments and information is building up rapidly.
I don’t want this whole affair to take over my life but I am resigning myself to the fact that in many ways it is – a temporary glitch. I can feel myself at times becoming a little agitated and frustrated. I also know I have to tackle this situation full on. I know it will throw things at me along the way, some of which I’m not going to like, but I plan to battle through day by day and week by week as I have been doing.
It’s the thought of being the ‘sick’ person I find hard to accept. When I walked into the cancer unit there were some poorly souls wondering around. I shouldn’t have been surprised. I felt detached in some way yet we were all, in some shape or form, in the same boat too.
It’s all so unfamiliar and an unknown, at the moment.
The bottom line being is that I am in the system, being gradually filtered and processed bit by bit which is fine and it’s good that things are moving albeit slowly, in my mind.
After all, I have a few rogue cells that have gone a bit haywire inside. You can’t help but imagine them running roughshod in your system. I don’t dwell on that but the mind and imagination will process things in its own way and these are the thoughts that crop up from time to time, as I wait and ponder.
I met a young guy last week, Simon, 24 who had gone through a tough time during the last few weeks. He sparked up a conversation with me when we were both waiting for dental x-rays last week.
I figured I’d see him again – he was also getting his mask fitted as I was leaving today. I gave him a big smile, handshake and a pat on the back and asked when he started his treatment. That little camaraderie and a genuine spark of recognition I know picked us both up, just a little.
He made me think about my daughter, the same age, who was off to a friend’s wedding today with her boyfriend. This young guy should also be enjoying life, with no cares in the world, shooting the breeze and just living life – he’s got a temporary ‘glitch’ going on too but I hope for him that in the months ahead things will subside and he can get his life back on track too.
So, I am a matter of days away from the start of my treatment which is on Thursday 8th May at 2pm – a double whammy of chemo and radiation.
As I conclude, my thoughts and ramblings are really about coming to terms with what’s going on, I think? Information overload but also a time to examine what’s actually going on and preparing the way forward, positively and step by step.
I have a few more interesting visits to the hospital in the next 2 weeks so when I’ve been swooped down upon again and mauled, in the nicest possible way, I’ll let you know.
Thanks for listening and piecing together my thoughts as they spring from my mind into print.
Have a great weekend and take care.