I think it’s been awhile since I have found the motivation to write. just in the car on the way to Macmillan as today is Stem Cell Harvest day! So have been up since 4ish as need to be there for 8am. It’s a day job hopefully unless they can’t collect enough then it’s a night in and do it all over again. I’m prepped this time, overnight bag is packed (and the bottled water! Lol)
Let’s circle back to 21st March when I had my PET/CT scan. Nothing new for me been there done that but all the same the anxiety of not knowing the outcome is the hard part. I am the curious type and always wanted to know more about this type of scan and which was the front end and ass end type of thing. The team must think I’m bonkers! One part does images in black and white and the other does colour etc. Who knew?!
I thought I would have to wait a couple of days at least for the results but the next morning I received the below text from Dr Kyriakou.
Good morning Mark
Although I will need to see the actual PETCT images tomorrow I can not hide my happiness
that it is provisionally NEGATIVE
Will catch up with you about the rest
I was chairing a session for the EBMT meeting yesterday where one of the big talks was on a high number of patients having your lymphoma type
We deserved some good news
Well I must say that was such a relief and an emotional moment. All the hard work is actually starting to pay off. It’s been a journey like none I have experienced before having been through this over 5 years ago. Don’t get me wrong I’m not special or anything, there are so many people way worse off than me. Every person has their own cross to bear. It’s just the reality of Cancer.
Enter Karen Maloney who I met later on the day of my scan. Irish and such a wonderful human! Karen is my Bone Marrow transplant clinical nurse specialist. She was the one actually got me thinking about next steps. I was adamant I was going to put this next steps off for some time and wanted to stop after the harvest. Freeze those fuckers and let’s get back to living again. After 2 hours chatting with Karen she had me signing on the dotted line and ticking all the consent boxes. She questioned my wanting to get all sexy again to have them desexify me again in a years time lol. I swear her brutal honesty was the deciding factor for me. Sense of humour 💯!
This is tricky part now but hopefully it will all go smoothly. Any of you having private health insurance may need to be reminded if you change providers most have a 7 year moratorium on pre-existing conditions. I didn’t read the fine print. So I was not able to use my insurance as planned. I’m the lucky guy and thankfully I have a great friend and boss, Kirsty Ettrick, who made everything possible for me. LMC have been funding my treatments privately as they wanted me to have the best. Cisplatin I’m not sold on you yet but you did good! They saved me back in 2016 and here we are again. Whilst I won’t go into costs they are eye watering trust me. I am truly blessed and grateful.
Last Saturday I had a chemo session, yes another! This one is designed to prepare you for the stem cell harvest. I was lucky Nathan could be with me and finally meet some of the team. The main thing on Nathan’s mind was trying out the food lol and yes he approved! Im so lucky to have the best hubby and the fact that he can cope with all this. I don’t have words.
This past week has consisted of pills and more pills as well as having to inject myself with GCSF for 8 days. This will stimulate the stem cells to produce in readiness for the harvest. It comes with its side effects of course, but I’m familiar with them and can manage them. Everything crossed that it will be 4-6 hours and done with. More on that experience later!
The next part is the transplant and I’m going to move across to the NHS for that. For many reasons such as same great care and it is exactly the same protocol. The cost well let’s not even go there. So I am still waiting on that transition to happen, same hospital different floor! Same great care. I have so much respect and admiration for everyone I have met on this battlefield of me vs Cancer V2. It’s a huge commitment thought 3-4 weeks in hospital with conditioning chemotherapy which is the highest dose they can give for a few days before they give you back your clean and shiny stem cells. Sounds simple enough right?! Lol
Thanks to all of you for reaching out with texts, calls and messages on here. Sorry for any delayed replies I am really thankful to each and everyone.
Much love ❤️