Since my last cancer update my skin has continued to heal nicely so my risk of infection has come down along with my pain levels.
The radiotherapy on my arms has also worked well and those patches are healing along with the rest of my skin.
I wish it were similarly good news for the rest of my body!
A few weeks ago my doctors let Steve and I know that they didn’t think the Gemcitabine chemotherapy was working. This came as a big blow to us as we’d been told this chemo was my last chance. They sent us home with some information about two potential pathways and let us know they’d be looking very carefully at my scans to see if their suspicions were correct.
The first pathway was a more gentle chemotherapy that might make my remaining life more “comfortable” and possibly keep me going for as much as a year.
The second pathway was a more aggressive chemotherapy that could potentially get me to the stem cell transplant (and therefore potentially many many more years) but my chances are somewhere in the region of 20%.
So we went to the next appointment knowing that my best hope was that they would see the Gemcitabine was working just fine and that I could continue that treatment. Unfortunately that isn’t the case. The lymph nodes within my body, especially those located close to my spine, are enlarged to a point where it is certain the chemo wasn’t helping at all. Therefore we had to make a choice between the pathways we’d been given the previous week.
Steve and I together both agreed that we would be taking the more aggressive chemotherapy. I don’t think I would be able to take the more gentle type as I wouldn’t be happy not fighting for a potential cure and every memory we made would be tainted by bittersweetness.
So the new treatment plan was to start a chemotherapy called D-HAP. Ideally this would be given by the Hammersmith hospital so that moving forward with stem cell treatment preparation and the stem cell transplant itself would be easier in terms of patient administration.
I was most likely to start as an in-patient and only go home if and when the doctors were happy that my body was coping and not at too high a risk of infection. I was told I’d likely start all this within 2 weeks.
After chemotherapy the treatments are linear – Total Skin Electron Beam Therapy (TSEB) followed by Total Lymphoid Irradiation (TLI) followed by the Stem Cell Transplant itself.
The main risk to my life is via infection, so I need to keep my infection risks as low as possible at all times.
So that led us onto the happy part – Steve and I had less than 2 weeks to try to cram in some ‘bucket list’ endeavours! I’m going to leave all my bucket list stuff for the ‘part 2’ to this blog post so be sure to continue reading!
We found out last week that the Hammersmith were happy for me to be transferred to them to ease the administrative burden of managing my treatments across two hospitals. So I’m no longer under the care of Guys, I ‘belong’ to the Hammersmith.
Steve and I made our way to our appointment to see the Hammersmith doctor. As ever when I sat in the waiting area I wondered if I would see the head doctor or one of his team of consultants – if you see one of his team then you wonder if you’re getting the same care that you’d have got under the ‘main man’ but on the flip side if you see the head doc you know you’re a ‘special’ case and perhaps you’re more of a worry! I saw the head doctor of course… damn, I’m more of a ‘worry’!
Our doc explained to us that he didn’t like D-HAP at all and preferred a chemo called ICE. This man is ‘Mr Stem Cell’ so we’re happy to go with his recommendations. He also said that in certain situations they might skip the skin and lymph node pre-transplant prep treatments of TSEB and TLI because getting me to transplant quicker might give me better odds (whilst being very wary of the fact that my bad skin and large lymphs pose a huge risk of infection in themselves).
And as a final note that we took away he said that because stem cell transplant odds of survival are never zero, even if my treatments don’t work there’s a good argument for trying the stem cell transplant anyway – this is a huge relief to me because even if I don’t make it I’d like to die fighting.
ICE Chemo is delivered as an in-patient over three days. I go in next Wednesday ready to start in Thursday and I’ll come home either Saturday night or Sunday morning (or later if I have complications of course).
I’ll have three rounds spaced three weeks apart. Then after I’ll have a scan (though my skin should show improvement if it’s working). After that depending on the success or lack thereof the next treatments will be decided – I could in theory be starting the stem cell transplant process in as early as 9 weeks time!
Thats the cancer update complete, press on to Part 2 of 2: My bucket list adventures to read about our Bucket List fortnight!!
Kim Debling is a Hampshire, UK based designer and Director of her own company Kestrel Design Ltd. She is mum to Rose and Harvey and wife to her best friend Steve. She’s fighting off Stage 4 Lymphoma and sharing her story along the way, mainly via YouTube. Kim is passionate about being happy, mental wellbeing and in particular art and creative pursuits as therapy during tough times. She teaches online at Udemy, has published books and has art and printables available for sale.