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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.
things have largely been going well. It's cycle 3 and just home injections left. Got clinic on Friday for authorisation to do cycle 4 and should be getting the interim PET scan booked...
this is what been waiting for, seems to have come around quick but at same point still weeks away.
So more of the same... Have felt lucky with way my body has reacted so far to the various chemicals and my near hermit existence has paid off so far in terms of stay healthy. Although the occasional risk is needed...
When I was little my Father used to take me to piano recitals. At the time I took it all in my stride but now he's gone, I miss them and wish I'd thanked him more for introducing me to my stopcock. When I need to vent fury, and sometimes I really do, it's music that I use to drown out my thoughts.
Playing mostly classical pieces on the piano and harp, there's not much chance of really thrashing either instrument without causing expensive damage, or injuring my hands. Prokofiev is okay...
In May 2015 I was diagnosed with the AML form of leukemia. I had no symptoms, apart from a headache. As a result, ans without any notice, I then spent most of the next 5 months in Basingstoke hospital, mostly in an isolation room due to my neutropenic state.
During my stay, mainly to keep my sanity while in isolation, I kept a daily blog on my own existing blog website. Almost every day I wrote about my AML experiences of 3 consecutive intensive chemotherapy courses.
I almost lost my battle ending...
This week my husband, my son and I have travelled to Russia to see my mum. All my family insisted on staying at my dads as my mum not well even though I was disagreed until my mum herself suggested it.
Seeing her for the first time was heartbreaking as I can imagine that our parents don't get younger but she looked 10 years older to me though I saw her only 2 years ago. It wasn't my mum but looked more like my grandma. She lost around 12 kg, got all pale and weak. The only thing which was still the...
....got to the RM at 8am and left there at 6pm!!!!!! Had consultation - had CT - had MRI - bloods taken - met loads of people - was told that I have a Grade 3 undifferentiated pleomorphic sarcoma - was a very tiring day - with lots of information to try and take in - was shattered by the the time we got home at 10pm
My radiotherapy starts 6 November - Monday to Friday for 5 weeks - when I've recovered from that I will have surgery - when I have recovered from that I have another 5/6 weeks of ...
I noticed whilst on holiday that one of my testicles was a bit larger than the other, and had started to ache a little. This could be overcome by wearing tighter underpants and going swimming in cold water. Don't get me wrong, the right nut had always been slightly larger than the left, but something felt a bit different about it. Every now and then I gave it a prod, much in the same way a tradesman would test to see if putty had dried around a window and then mused as to what had made it become...
So Daniel re-started his chemo on Monday. This time around he's opted to take part in a clinical trial, as it means he'll get a lot more monitoring. He researched the different arms of chemo that were available on the trial and he wasn't overly opposed to any of them, so it seemed like the best option for him. He was lucky in that he was given the arm of chemo he was hoping for too.
Hopefully, he's only going to need 4 rounds. Each session is lasting a week and then he's back in again...
Well here we are - the train journey went well - 1 hour 50 min - had a cuppa in Waterloo Station - went to the loo - 30pence for the pleasure!!!!! - got bus from outside station - 40min to get to the Royal Marsden - found out where we have to go for the appointment tomorrow - then walked to the place we had booked into for our overnight stay - 40 min walk - so good not to have to rely on buses - mind you the bus stop is right outside if we don't fancy the walk in the morning.
Oh yes had to buy...
hi i feel i really need to get my story out cause my mum is pain and i need to help her.
it all started about 3 months ago when my mum complained to the docs about a what we thought was a trapped a nerve which she has had in the past.
painkillers and i paid for a private spine person to untrap it .
4 weeks past and she was in more pain could not walk properly so was told to rest as this the best thing for a trapped nerve, things didnt improve numbness in her lower lip and pins and needles in her...
