Cycle 4 Commences!

It’s been a while since I last posted and that’s because I am on the scary down part of the #BloodyCancer rollercoaster! So let me begin with why the image for this post is of a bus pass… My haemoglobin levels have been low since I started treatment and the consequences of this means that I can become very light-headed and possibly pass out at any moment. My CNS discussed this with me and advised me that I couldn’t drive whilst this was the case; my options were to have my driving licence taken from me, or to surrender it voluntarily – I decided to give it up myself. My lovely little Mini, Lavender, sat forlornly on my driveway and I contemplated being stranded in the village, only leaving in the Welsh Ambulance Patient Transport vehicles for hospital appointments. Obviously, after two and a half years shielding already, this prospect was pretty depressing, so I decided that I would investigate the option of getting to town a couple of times a month on one of the two daily buses which serve the Tanat Valley. I discovered that the 79A leaves the village at 10.04 am and returns around 2 o’clock, so I set about looking online for a shopping trolley, realising that I was turning into my late mum more each day! My first trip felt like quite an adventure! I ‘wrapped up warm’ (as my nan used to say!) and stood at the bus stop, contemplating how my life had changed from flying first class around the world, to getting a bus and dragging a tartan shopping trolley around! The fare was £3 each way, which didn’t seem too bad and, with my supermask in place and very few fellow passengers, I felt reasonably safe. Now, going to town means crossing the border and arriving at the lovely little market town of Oswestry – there’s just about enough to do to while away the 3 hours, but only if it’s not raining, as at least one hour of my time there is spent enjoying a coffee sitting in the square. It’s not quite how I envisaged spending my late 50’s, but hey ho, we play with the hand dealt us! So, back to the bus pass… I’ve mentioned in previous posts how incredibly helpful Macmillan have been and my welfare officer, Kate, advised me that I would probably be eligible for a free travel card due to my restrictions and to obtain it, I should apply to Powys County Council. To be able to do so, I needed passport photos and, as it happens, my passport lapsed back in July, so I headed into town to get new passport photos taken. I read the rules for the correct photo type and discovered that head coverings were acceptable for religious and health reasons, so although I fancied wearing my favourite bobble hat, I thought it more suitable to don the bamboo cap! Of course, you’ve probably already worked out that this will be my passport photo for the next 10 years! I can only hope that I am well enough in the next 18 months to be able to make use of my passport and should my plans to take some extraordinary trips with my son, Charlie, come off, I’ll be so delighted, I won’t bat an eyelid handing over my ‘baldie’ passport over at passport controls! I started this post explaining that I was on the ‘downside’ of my treatment journey, and what I’ve written so far probably sounds reasonably upbeat; however, things have been really tough during this cycle. My ‘long bone pain’ has been unbearable and so my consultant and GP have created a pain management regime which sees me taking slow-release morphine tablets and oral morphine sulphate for breakthrough pain. Whilst I appreciate the ability to manage the pain more effectively, it has by no means eliminated it altogether and the side effects of high doses of an opioid are not inconsequential. Bearing in mind my commitment to being honest in this blog, I’ll just say it – the constipation is a real pain in the butt – literally! In addition, I feel sluggish and this, combined with the natural fatigue of my condition, means I find it very hard to be productive. This is probably the hardest part of my journey. I still cannot reconcile my previous high energy, high speed lifestyle with the sloth-like existence I now have. I feel like I’ve lost my core identity and lack purpose in life; being unable to help others, having to remain static for days on end and losing the social contact I loved has all taken its toll on my mental well-being. Of course, my purpose is now to enable my body to heal and respond to the treatment, but although this should be sufficient in itself, I find it hard to accept. Well, that’s just about all my news for this post. I am trying hard to feel excited about Christmas and I should be positive about this year as my son is coming up from Chichester to spend the festive season with me. I spent the last 2 years alone at Christmas due to shielding, so at least this year I shall have the company of the person I love most in the world! I am sure that I’ll get into the mood when I start wrapping gifts and get the tree, but right now, that’s just another couple of things to add to the list of things I am just too fatigued to do…