Well friends – I’m on the threshold of the tenth anniversary of the shattering diagnosis of cancer. To be fair, my Consultant, the lovely Dr Flora, said it was a “good” cancer. I sort of beg to differ: but perhaps she was right as I’m able to be writing this tale ten years along the tracks.
The tale of this journey has been documented in two main Blogs; latterly on this site and initially on my former (free) platform; which seems to have disappeared down a flood drain of lost data – a summery is here https://www.spotleukaemia.org.uk/post/roger-huxley Leukaemia Care were very supportive and recklessly offered to Ghost write my first experiences of Chronic Lymphocytic Leukaemia (CLL). They cut my ramblings down to size!
I’d better start at in January 2014; I had two weeks of deep flu. – nothing could get me out of bed – a real stinker! Throughout 2014 I had UTIs and throat infections; eventually a diagnosis of Benign Prostate Hyperplasia (BPH). A date in early January 2015 was fixed for the Laser!! Through 2014 I had noticed a range of personality changes – I was moody and irritable; easily aroused to frustrating anger. I was unhappy in most aspects of my life and completely out of sorts: a square peg in a round Universe. I was struggling. At that point I was still able to jog; but couldn’t be bothered. This matter returns later in the story.
It’s important to note that the job that I enjoyed at Headway Luton was now turning into some perceived nightmare due to poor management strategy regards reorganisation which would impact my job. It seemed that I was in this cider-press of being squeezed until my pips squeezed. For me this came to a head on New Year’s Eve.
31st December 2014 I had my pre-op checks in a hut at the Luton and Dunstable Hospital (L&D). I returned to work for lunchtime and then had a bit of a stand-too with the boss. My parting shot was basically, “change my job however you want because, although I won’t be happy, it’ll stop you trying to mess with me.” Silence followed. On my moody walk home I was so fatigued I had to stop and sit on a couple of garden walls: I thought it was just my fizzing resentment. Finally reaching home and plopping down on the sofa I had a call from the sister in the Pre-op Assessment who informed me by white cell blood results were unexpectedly anomalous and an appointment was made for me first thing in the morning on 2nd January 2015; a hiatus because of the New Year’s Day Bank Holiday. At that moment I was too tired to wonder. However, when I went to the bathroom a few minutes later I did have this anxious premonition that I got Leukaemia. New Year’s Eve and Day were a bit of a nervous blur; a far cry from the wild festivities in the 1970s!
On the morning of the 2nd January, a Friday, I had another blood test and then was shown up to the office of the said lovely Dr Flora. I was on my own with her and a MacMillan Nurse and her words became a blur after a minute or so. Kym had dropped me at the hospital and was checking out the Dunelm New Year’s Sale. I phoned her, following this mind-numbing consultation. I didn’t have the words to tell her. I was holding back the tears of fear (not rage – from a couple of days earlier!) When we got home I had to spell it out – tearfully on both parties. An appointment had been made for the following Monday – Kym would come along and further blood tests would be done for confirmation.
That weekend held my birthday and I knew my children would likely phone. I didn’t have the words to explain: particularly as there was to be a further confirming test. I have few recollections in detail of those couple of days. What I have retained is a sort of story board image with some of the episodes sketched out!
What followed has been documented elsewhere. The year of 2015 was one of the most challenging as I started from a perspective that it could easily be my last – despite the “reassurance” that I had a “good cancer”. The effects of Chemo, the pains of Shingles, the frequent trips and the waiting around at the L&D, news of the unfavourable prognosis,, the trip and waiting around at the University College Hospital in London (UCLH) – all that was taxing – I think particularly on Kym – you see I was getting care and attention and she was holding me up and holding our home life together. She had very broad shoulders and a big heart: I’m so grateful. Kym enabled me to start living well again.
The rest of the year of 2015 continued through receiving sick pay, sorting out my Private Pension with Legal and General, claiming a PiP (Personal Independence Payment), claiming Carers Allowance for Kym (who gave up her own employment), all the tablets, all the infusions, all the isolation – eventually in November 2015 they declared Remission! Alleluia h!! However the whole calendar of activities and treatments had drained me and I went, in my mind, body and spirit, down a vortex of depression. The chemo had affected my knees, fatigue had resisted taking good exercise and low mood had drained motivation from engaging with my creative side.
This gloom lasted for several months until Spring 2016; by which time I was “retired” – a proper pensioner. I needed activity in support of others to reclaim my sense of self and well-being. `I helped run a Drop in Coffee Morning at my Church. I signed up to help with the Luton Foodbank – in the warehouse. My Mom was in residential care with Vascular Dementia and I hadn’t seen her for well over a year. We had to go up to Wolverhampton to catch up with her. That was pretty emotional – but eventually she recognised us; by this stage she was non-verbal, but had very expressive eyes.
Also at this time I resumed my love of singing and playing the guitar in local Care Homes – and of course for Mom in Wolverhampton. We had a few good little sessions in the next couple of years before she passed away in 2017. That’s all to come.
It’s now the afternoon before surgery to replace my right knee. I’m nervously prepared and nothing would have happened without Kym’s support. Thanks to all friends and family who rallied round and showed kindness: practical and spiritual. Some more information about the last couple of weeks is on Mr Sparkler’s parallel Blog >>> HERE
Ten years ago today I was half way through the first round of Chemotherapy and was beginning to feel lousy!! Less of that memory!!!Best wishes y’all, Roger
