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Today I happened to see a Specialist nurse that I saw on my first appointment to the Consultant on 23rd October - she said 'hi how are you?' - I said 'fine' - she said 'no you are not' - so I told her how I really was !!!!! - she upped my morphine there and then and told me what to take and when to take it on 'session' days- it was such a relief to talk to her and for her to recognise the fact that I was far from OK shows just what a fantastic caring, understanding, perceptive person she is....
Dignity.
Cancer treatment affords you none. It strips you of it as soon as you begin. I think that actually it probably strips you of it before that even...
Today I have had to cancel travel plans because the 'stargate' (radiotherapy machine) is doing it's job. Therefore the expected side effects are taking place. Think toilets and frequency.
Then there is the actual process of receiving my daily dose. I have mine to my pelvis so therefore I have to strip from the waist down. I am allowed...
Day 7 was 'orrible - VERY painful - only because of 'Betty' (my tumour) is in my buttock and laying on my back is excruciatingly 'orrible - I am going to have to ask at Clinic on Thursday if they would remind me why I am having radio - surgery - then more radio - yesterday I just wanted it OUT - woke up at 4am dreading todays session!!!!
Today was not as bad - still not good but tolerable - JUST!!!! -will also ask at Clinic about upping the morphine dose - maybe that would help.
...I have not blogged here for 6 weeks or so, the longest silence since I started my on-line scribblings. Mostly, it is because I have not known what to say for myself since I learned that the treatment appeared to have worked. I suppose that, since then, I have been experiencing a mixture of dumbfoundedness, huge relief, worries about recurrence and a sort of post-traumatic numbness. A bit like a rabbit who was caught in the headlights but was lucky enough to have the car pass over him, bowling him...
and it is quiet...
The children are in bed and so am I, in fact I have been in bed since around 4 pm after I fetched older master T home from school. It rained this afternoon, the kind of heavy rain that is somehow comforting when you are indoors listening to it. It has always been one of my favourite things, listening and watching heavy rain while I am cosy indoors.
Last week was full on. My tutorial in Sheffield went well up until the point I began bleeding from my bladder and missed the train...
Day 1 w.as 'orrible !!!!! because of the time it took to position me and having to lay on my back!!!!! - ..bearing in mind my tumour is in my gluteous maximus - the nurse advised me to take painkillers before the next session. Anyway on Day 2 I said how bad I had felt - and it was arranged for a Doctor to come down to chat with me - he prescribed liquid morphine - so I reckon I will be OK now . Sessions 2 and 3 were fine.
Day8 of cycle 4 remaining and last cycle it was a killer could not move for 2 days and only felt 90% normal at the start of cycle 4. Feeling the impacts now getting tired more frequently, if spend time with people 2 hours and I am gone. Also due to lack of seeing people my throat dies from all the talking. Weird, but normal things...
so Pet scan booked for 17th and I get to start cycle 5 on 18th without results meaning I can crack on all going well, and aim for completion this side of Christmas....
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...
