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Having just been through a year with advanced stage three SLL, Small Lymphocytic Lymphoma, I thought that I would record my experience and by doing so perhaps help others who may be suffering from this rather unusual extranodal tumour.
I was diagnosed with advanced stage 3(ES) SLL in February 2015. For those who do not know the (E) stands for extranodal. I had a tumour in the orbit of my left eye. (S) Stands for spleen meaning that the SLL has entered my spleen. However, my blood count has been consistently...
.....that I had my 1st radiotherapy session - again everyone I came in contact with at he RM were friendly but professional - talked me through what was going to happen and put me at ease. The session was longer than it will normally be - because today they had to position me - all I had to was was to lay VERY still. Mind you I 'm glad I have the weekend free to play 'tourist' then I will be ready for Session 2 on Monday.
The AFP tumour markers are going down 1,600 to 269 to 117 and then this week they are 54. Good news they keep telling me. Which is true. I also know a lot more people are going through a lot worse than me with all sorts of stuff. I should be cock-o-hoop. However I'm not as I'm still off work and am just waiting and waiting for each Wednesday test results to be announced. I've been demoted from the Doctor to the Registrar to a Key Worker. As they gradually demote me in the order of seriousness...
...I start my radiotherapy - into the unknown!!!! - I've read about what will happen etc - but it's still a case of 'oh eck here we go!!!!!' Mind you I am looking forward to spending time being 'a tourist' in London for the 5 week duration of the 'radio'.
Since my last post I've had my second and third chemo sessions.
I was way less nervous after the first one but still apprehensive. Luckily I went into the second one feeling pretty healthy (almost normal), this helped a lot with the side effects. Apparently if you're feeling bad before you start, any pain or discomfort just gets intensified after chemo. Rachel and Nick were both there for my chemo session, and my parents popped in too (I think I had the most visitors in the unit!) I still hate...
So Daniel's on his second of 4 rounds of chemo (hopefully). He'd started to think he was going to get away without losing his hair this time, but apparently no such luck. When he was having chemo before and lost his hair he lovingly nick named himself 'The Egg' and now it seems we're seeing the eggs return.
When Daniel started to lose his hair both times, he's let his 8 year old nephew shave his head for him. It really makes his nephew feel a part of the process and not to be...
Oh...what an eventful couple of days.
I had been thinking lately that I had nothing to say, nothing of interest, nothing that you dear readers would be interested in. I think the Bastard has been listening in to my thoughts. So we can add eavesdropper to the list of undesirable habits it has, alongside squatter, life wrecker etc.
I spent all day Monday at our big city centre posh hospital sitting in Ambulatory Care. What is Ambulatory care? I have no idea, well no idea until during my 9 hour wait...
Evening to you all.
Hopefully you are all spending this All Hallow's Eve doing what you enjoy the most, be it dressing up and partying or turning the lights off and hiding?
We are back after spending a wonderful few days staying in a hotel overlooking Robin Hood's Bay. A beautiful, beautiful place. This came about purely because our friends are amazing people. The view was spectacular and during the four days we were there I spent a fair bit of time staring out across the bay or when the...
For any people reading this I should have pointed out in the first blog entry that the removal of my first testicle was in York under my private medical insurance. However once removed I entered back into the NHS system. Under York's care I had called with a few questions on my recovery and got answers within the day and everything seemed straight forward. The move to Leeds required a level of chasing, patience and more chasing. Something I couldn't get my head around at first. I wanted to...
My 'radio' starts next Friday 6 Nov - I've been reading lots about what to expect and today I met a lady from my local Sarcoma Group - who has been there, done that and got the T-shirt!!!!!! and was able to give me first hand knowledge on what to expect and what questions to ask. We met just for a 'chat and a cuppa' and 3 HOURS later we parted as friends - a remarkable lady.
