Now I’m back on the routine three monthly scans and feeling good after the last positive result. It was time for the first scan, I arrived at the hospital about an hour early but thought rather than kill time I might as well go and make myself known. I cheekily asked if I could be seen earlier and to my amazement was allowed to go straight in….. What a result!!
It’s funny the things that you get interested in. After almost four years of routine scans and it just becoming something that I did, I was amazed… yes amazed that the pre scan questions had been updated!! I was so used to being able to roll out the sequence of answers from memory without even being asked the next question; “yes, no, yes, Feb 2015, no, yes, not that I am aware of, etc”. This time though it was different, there was a new one that shocked me, “do you have tattoos?”.
Yes, I have a few… why?
“Probably nothing to worry about but let us know if they start feeling warm!”
Wow I thought, surely this is something I should have been warned about before. I have spent quite a bit of money on some tattoos over the years and would have been quite annoyed if they had started burning off!!
Nothing to worry about though, no hot feeling and they’re still visible on my arm!
The scan itself went well, I have to say that I highly advise having the pillow under your legs, it’s much more comfortable for your back. I was even offered to have music again this time, something that I haven’t had for the last three years. I declined, I’m odd… I find the clanging and banging almost hypnotic and quite often drift off for a nap.
One thing I don’t like though is the constant need to tell me what is going on all the time… I’m not sure if this is something they have to do, they feel helps me or just they like to do but let me tell you, it makes NO difference to me knowing what scan is next or how long it’s going to be. The worst is with the contrast injection, I hate needles, not quite as much as I hate heights but they’re definitely up there!! Just distract me and then jab it in.. job done, No messing around!
I know people talk about scanxiety and the worry about getting the results but I like it. I like to see what’s happening and if there are any changes good or bad. Obviously, I’m still worried about bad news but I’d rather know early and deal with it.
Off we went to the hospital to go and see the Oncologist for the results, I was still on a bit of a high from the surprise results last time where I’d learnt that the chemo had done the trick and booted Albie out again.
Well, I should have learnt by now that it’s impossible to predict scan results, recently they seem to be a lucky dip of good and bad, gone are the days where it seemed the collection of results was just a tick in the box exercise for visiting the Oncologist “everything is fine on the scan, see you in three months”. I miss those days!!
This time I was given the news that no one wants to receive…. Albie was yet again back, this was a second recurrence!! The good news was that we have seemed to have caught it early and that this time it is very small. However, Albie is sneaky and brought a friend, on the scan there were two very small areas of tumour at different depths in my brain.
So, Albie wants to change the rules of the fight, I didn’t know we could invite friends…. Who can I ask?? Or Maybe Albie feels it’s unfair that I’ve used a Surgeon, an Oncologist and a variety of weapons including radiotherapy and chemotherapy against him and now it’s his turn to have some support.
Either way, I wasn’t particularly happy about this and we had to come up with a plan of attack. The Oncologist was concerned that after the last six month course of Temozolomide I only had three months without any sign of Albie around. This wasn’t an ideal ratio and they would hope to get more tumour free months from the treatment. The Oncologist explained that I should think of the chemo as I would antibiotics and that whatever you are fighting them with can sometimes get immune to it and maybe it’s time to try something else. It was then suggested that a different, stronger type of chemotherapy was worth a go, something called PCV.
PCV is a combination of three drugs, the first of which you go to the hospital to have on an IV drip and the rest are tablets that you can take at home like TMZ. It’s a nine month treatment plan and considerably more toxic than TMZ. My views have always been lets hit Albie with whatever we can, there’s no point playing at this, if there’s an option for a knock out blow I’m gonna take it. That said though, I was very apprehensive about the IV part of it, I’m no expert on the matter but that’s the hard stuff that you see on films, etc.
My concerns were compounded when the Oncologist started saying how toxic PCV is and how many patients can’t last the nine month cycle and ask to come off it early as their bodies just have enough and it effects their bloods too much. After this reassuring chat I was a little worried but still wanted to give it a go if it was my best chance. I could sacrifice nine months if it meant I was going to get some good years at the end of it. YES, I said years, I am forever the optimist and I’m determined not to let Albie knock me out!!
So we came up with a plan…… In preparation for not being able to do anything for nine months and to have some sort of quality of life it was agreed that Gemma and I should carry on with our plans to go on holiday in July and then delay the start of the PCV chemo until August. This was the first time I could actually plan anything, usually everything was reactive and I was on treatment immediately.
It felt good to plan for this one. I decided that I would use June to wrap up work, either finish my projects or find a suitable colleague to pass / dump it on, I’m sure this would make me popular in the office!!
July would then be a holiday month, no, I wouldn’t go on holiday for the whole month, rather a month where I could concentrate on myself and Gemma. It just so happened that we did have a couple of short trips planned, one to Spain and one to Budapest.
The thing that annoyed me most from my last treatment of TMZ was that I put on two stone during the six months. Mainly because eating gave me energy but the chemo gave me a lack of motivation to move much….. Who am I kidding, I’ll be honest, I also just love food and used it as an excuse to pig out!!!
Anyway, my plan was always to shift the weight and now the thought of going back on chemo and potentially putting on more weight was the motivation I needed. July would also be time to get Chemofit!!!