My chemotherapy finished almost 3 months ago now ( how long ago does that sound when since then never quite got round to ever totally finishing treatment as my body has always thrown a spanner in the works!
After chemotherapy I was meant to have radiotherapy to my chest ( where the bulk of the tumour is ), this is a consolidation treatment and would just give the tissue an extra blast to make sure any abnormal cells were well and truly gone. Before radiotherapy I had a post chemo PET scan. ( the PET scan is the one that shows up the black blobs where cancer is ). The results came back and showed a great response everywhere apart from my left hip. Before I could complete my radiotherapy we needed to establish what this "thing" in my hip was.
The options for my hip were residual lymphoma, a totally separate bone cancer eg sarcoma or a benign tumour. I had to be investigated in Oswestry as its a specialist orthopaedic hospital and if I did have bone cancer would have my surgery there. I was referred for an "urgent" bone biopsy and was told this would take place within 10 days. 5 1/2 weeks later I had my bone biopsy. A report that contained 2 lines " not cancer, not lymphoma" was faxed over to Christies and I could start my radiotherapy. We are now 3 weeks past that and still no idea what hip thing is as haven't heard anything else but I have an appointment in Oswestry on Friday so maybe I will finally find out what it is!! That's the hip story over!
I turned up to my first radiotherapy session with my Fresh spray tan, pedicure and eye lashes and had a full tummy after celebrating actually starting the end stage of my treatment with some pub grub. I had already been scanned and tattooed ( 3 tiny black dots on my ribs to line up the machine ) at a previous appointment so I hopped on the table and was expecting a 3 min blast. They did a quick scan of my chest before they started. This showed that my chest was very different that in was 6 weeks before and there was a mass and my left top lung was collapsed. Treatment was stopped and the consultant was called. They explained radiotherapy was only a consolidation treatment and wasn't going to cure active disease and the delay in starting had allowed the few tiny cells in there to grow into a 9x7cm mass. ( in hind sight if my disease is so aggressive radiotherapy was only going to keep it at bag for a few weeks or so it was always going to come back ). Another " urgent" ct scan was booked and I did some more waiting.
I had a ct scan a week or so later to show the detail of disease ifr my neck to hips. My professor rang with results a couple of days later. He confirmed that I did have collapse of the left lung where the tumour was squashing it, I also had a lesion ( patchy bit of of disease) within both lungs ( still lymphoma! ).
So the plan of action! Well it's to start all over again with a harsher regime and then a stem cell transplant. I will have salvage platinum chemo as an inpatient 3 times in 9 weeks, within that time they will collect my own stem cells. I will then join the transplant list and when I have a bed I will receive conditioning chemo. This is chemotherapy that is very high dose and lots of different ones that will kill every cell in my body and my bone marrow production. After this I will need to be in isolation as will have no protection from infections. I will then have twice daily full body radiation for 3/4 days then when my body really is poisoned / battered / non functioning I will be given my stem cells back. Hopefully they will 'graft' into my bone marrow and start making my body work again! I will need to stay in isolation for a further 4-6 weeks after that and be getting regular blood and platelet transfusions and my body won't quite manage to do that for upto 4 months after my transplant.
They can't give me an exact date for my transplant as there may be delays and set backs and I may need more chemo than I think to get rid of my disease before transplant. At a guess I will prob be admitted at the end of November till the new year.
Gutted that that is my most exciting time of the year, is my 30th, Madeline's 4th bday and Xmas. I was so excited I booked me and Maddie a party in February! Maybe I was a little keen!
I fear I may have lost a few readers this far down, so well done if you made it this far!
Before I get started with my first chemotherapy I have a bone marrow tomorrow, then sign upto a research trial, then PET scan next week and then I'm ready to go! I'm on steroids now to keep me going till then as I was very breathless and tired without them.
My head was briefly all over the place and I was a proper grump when I realised I'm miss so much stuck in a room without my baby girl but I'm over it now. It's got to be done. It's not the path I would choose but it was chosen for me and I know I can do it no problem so head down and off we go..........
Ps the pic is of my hair now that's all coming through so nice but that will be falling out again in about 3 weeks :( this time I will also loose my eye lashes and eye lashes and be morphed into a shiny headed ET figure shuffling around but il be back to my normal self in 2014
Oh Nic, it all sounds very 'heavy duty' my lovely :-( but you have such an indomitable spirit, and so much love coming your way from family and friends...
ReplyDeleteWe will all be holding your hand, cyberly, and holding you in our thoughts, sweetheart. Xxxxx