In the beginning it had seemed as if "normal" life would resume sooner than I'd hoped; but there were complications. And perhaps I should have explained that the duration of the "rest of my life" is somewhat limited to something like 12-18 months. Such are the vagaries of Acute Myeloid Leukaemia (AML). Hence all efforts being directed at making the most of the time in creative activities that my little family can enjoy, hopefully, for decades to come. C'mon Grampa, we gotta get you outta this place ... A step before the rest of my life and Niamh was probably getting sick of being dragged to hospital most days for a month. The determination on her little face says it all. Actually this was taken before the First Day of my New Life and it turned out that the route to Nirvana had a few obstacles yet. One of these was settling into a new environment in which one was technically "out of hospital" but rather confined to home hospital and antibiotics seven days a week. Brilliant service but that wiped out most of the day with the medication being delivered over a flexible period by some Heath Robinson devices tailored for our "spare" bedroom. But, as should be obvious, I'm now back at the keyboard having undergone a 6 and a half hour blood transfusion back at the Great Western Hospital this last Saturday (actually almost 3 weeks ago). Perhaps June will deliver better prospects for rebuilding our lives. Happily, Niamh, is unaware of life's shenanigans but Shan, Kate and Andrew definitely are not and I often feel things are more stressful for them than they are for me. Makeshift antibiotic drip set up in our spare bedroom with handy bathroom and PICC line bowser ... Hang the container as high as possible and place the recumbent patient way below and gravity does the job: actually not very different from the hospital IV drip stand; just takes a little longer to set up. So once that's all in place, time can be liberated for creative activities; Such as re-shuffling and editing Mark's Roaminations blogosphere and perhaps even creating some new stuff recording the goings on of a positive approach to life in the 25s and 26s. To start with I have finally, this very afternoon, managed to access WhatsApp from my phone, iPad and MacPro. Haven't cracked the watch yet but all things seem possible; although WatchWhapsApp could prove to become irritating; we shall see ... In the mean time, the swings and arrows of determining the path of my Leukaemia treatment have hoovered up all of my initiative to plod on with my bloggerations and I really need to drop an update before what could be a turning point this coming Tuesday when I will visit the Senior Consultant directing my aspirations for a path to maximising my useful life for the next near or so. The best case scenario will be to resume a course of chemotherapy (Chemo) that will achieve this. In the ideal world this will consist of 4 or 5 more 4-week blocks of combined chemo and recovery leading up to a period of more or less normal existence for maybe a year until the whole cycle resumes but with a shorter life expectancy. Three months is a long time in the life of a little girl ... in the middle shot she is trying out solids and has a temporary reaction to roasted aubergine that lasted all of a few minutes, not that she seemed too distressed about it.
In reality In reality it has taken 12 weeks to reach this point of expectancy for Tuesday; i.e., the fantasy world did not happen and we may even have to start from Block One again because the individual tranches can lose their efficacy if they take too long. In my case a mystery infection has delayed things by two months and (perhaps maybe for even longer) with a debate amongst the experts as to whether my lurid, swollen big toe was the result of an infection or of a bout of gout. I hadn't even realised they were different afflictions. Best case scenario: could take 5 or 6 months from Tuesday before for the necessary number of chemo blocks of injections and pills will pause for some productive time. Who knows what the verdict will be from post-Tuesday. So bated breath is going to be the order of the day for the remainder of this weekend ...
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Much of this will have to be explained during the first and subsequent weeks of this series of bogs but I need to get the bones of the story down now in honour of yesterday. A new beginning.
When I was made aware, on March 4, 2025, of the fact that I had Acute Myeloid Leukaemia (AML), the shock of a probable 12-18 months of life, I promised myself that a positive approach to the rest of my life would be dedicated to Niamh, Shan, Kate and Andrew. It seemed a relatively easy promise to make at the time: bite the bullet with Chemo therapy (the light version given my age) and after about 4 weeks things would start to normalise. Only they didn't. After 8 weeks it seemed like it was going nowhere. I remained in hospital and there was talk of maybe longer. In some quarters there was talk of never coming home. I almost lost the plot at my life's nadir some time in darkest April when I had good reason to believe there might only be a few days left. And then I became convinced there was some of my dream left to fight for and it needed to happen urgently if it was to happen at all. A new chance. A gleam of light appeared when Shan and a few other medical people developed a plan for 6 weeks of home rehab working alongside the NHS with strong parts on which to build the remaining globe of light leading to a brighter future. I am sending this out now so that my family and I can start the next 6 weeks with fortitude in the hopes that results will take us way into 2026 and beyond, and that little Niamh will continue to have a Grandpa for much longer than that. I shall continue with new episodes as things progress ... |
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