So much has been happening since I last put finger to keyboard (and I do mean finger), that up to now I haven’t had the time or headspace to sit down and write. So here we go…
In January, my son Jacob went on tour, dancing as part of the Urban Strides Senior Crew. This entailed 5 weeks touring arenas in Sheffield, Birmingham, Manchester and at the O2 in London.
I am lucky enough to have been their official photographer for the past 5 years, documenting Jacob and his friends’ maturing, growing skill and ability. They performed, as part of the Young Voices Tour, in front of audiences of 15-25,000 every evening.
These photos are from a medley which included a wonderful Star Wars choreographed dance/fight at the end, which always brought the house down. I cannot tell you just how wonderful these young people are, and how important their friendships have been to both Jacob and our family; I was invited to spend a week with them in Manchester at the end of January.
Too much time has passed for me to write in any detail, but what I want to tell you of is the truly amazing amount of love and support that has come my way since this all began almost 6 months ago.
At work, my managers have been extremely sympathetic and I was given time to spend time with family. I communicate regularly with them about my condition and treatment, my Occupational Health appointments and work pattern, which has been extremely stress free and mutually beneficial. My colleagues have been wonderful; not making too much of a fuss, whilst showing concern and support. It has been extremely important for me to get back to work after Christmas; returning to the job I still love. Luckily, throughout my therapy I have not become neutropenic, which has enabled me to work wherever I’ve been needed in the department, though I have had to take some more time off sick more recently. During the last shift I did I became extremely tired and short of breath after just 4 hours, and despite taking a break, only managed to work for another hour. As a result it has been agreed I will remain off work until I have completed my therapy in April, and my next Occupational Therapy review.
Friends have gifted me books and flowers, lovely messages and even letters. I have had an Olive tree planted outside a Hospital in Gaza, a dissertation was dedicated in my name, and our family tattoo was carved in wood. The generosity, kindness and care is very humbling and, at times, quite overwhelming. One of the most lovely way friends have supported me is in transporting me to and from appointments, or in joining the parties we throw during treatment sessions around my bed. I don’t think the unit, or the other patients, have ever seen anything quite like it. They make these long sessions a thoroughly enjoyable experience, where we put the world to rights, plan action and laugh, a lot. Colleagues working on site often drop in to say hello, and it is a source of great pleasure to see nurses I employed as a manager 10 or 15 years ago now wearing the uniforms of Matron, CNS or Operational Manager.
My children have been magnificent. I cannot express how much their love and support has meant; how it has kept me motivated and my mood positive. The girls have taken me to most of my appointments and therapies, often taking days off, which they then have to make up later. They have both been very well supported by their managers. I often sit and read aloud to them, which is a real delight; this was something that had stopped naturally, many years ago. I remember the last book I read Abbie was Harry Potter and the Chamber of secrets, which I got half way through before she took it off me. Hattie and I are reading 1984, which is probably my favourite. I do sometimes wonder how they really feel about all that is happening, and I worry that I will not be there, at their sides, to comfort them as they grieve.
The children and I have had a meeting to discuss the contents of my Will (not that there’s much to leave), and plans for my Funeral. This was a conversation I never, ever wanted to have, at least not for many years, but is something that had to be done to try lessen their distress, and the workload once I am gone. Everything has been documented, and though there were a few tears, we walked round the house discussing particular items they would want to keep; relief came when went out for a meal in the evening, which meant the day ended in chatter and laughter.
Thanks to the People’s Assembly, I was able to address approximately 60,000 at a demonstration in Whitehall against the continued cuts, and crisis in the NHS, on February 3rd. The most amazing thing was to have my Brother Mike join me on the platform, having flow all the way from Delhi to attend, along with his wife Montse, from Asturias in Spain.
Thanks to friends, I have visited Cornwall for the first time. Squeezing onto a bunk bed every night, in a room not much bigger, which provided some amusement as we did our best to do so without banging our heads, or take off a layer of skin. The girls shared a double bed. My mate Chalky had come over from New Zealand to visit; we got to meet Danielle’s Nan, and eat her proper Cornish pasties…
In mid March we’d been invited by 2 Scottish Nurses, Holly and Aimee, with whom I’d worked in A&E, to visit and stay on Skye, at their Mum’s B&B. Abbie, Lee, Hattie and Louis joined me for a wonderful holiday week. The weather was beautiful and so was the Island; truly magical…
How am I doing?
Well, I continue to lose weight, and my appetite and swallowing has continued to be very erratic. I never worried about my weight prior to all of this, and had put on about 2 stone over the past 10 years; We don’t own any household scales; now my weight has become important. I’ve lost approximately 3 stone over the 6 months, and I am now at 63.6 kg. I really can’t afford to keep losing 2kg every fortnight; I said to the CNS yesterday ‘ I want to die of Cancer, not starvation.’
The Chemotherapy has affected my taste, meaning that some foods that I loved, I can no longer tolerate; this is mostly cheese and chocolate. Sometimes foods get stuck – then I spend time in the toilet getting rid; this means that if we’re out I always have to know where the toilets are before eating. My swallowing is so erratic, that there are times when even relatively liquid soups and ice cream get stuck. I tend to snack more – crisps are out (sawdust), biscuits are in. Puddings are usually a good bet (I have always favoured savoury over sweet, but thats been reversed). My shopping bill is down, but I have also stopped cooking regularly, which is really upsetting. In the last 3 weeks my teeth have become oversensitive to anything hot or cold. This has been excruciating at times, waking me up at night and making eating and drinking difficult, if not impossible at times. Thank goodness Cathy introduced me to Sensodyne toothpaste and mouthwash, though paracetamol and Ibuprofen have been the best remedy.
The Dieticians have seen me on several occasions. I’m sure I frustrate them; they want me on a liquid only diet, but I just can’t tolerate that for more than a day. Eating is so much more than just a task, it’s a pleasure (or should be). It’s sight, taste, smell, and texture. This becomes even more precious when your appetite is reduced to a third, as mine is. So, I’m afraid, though I heed their advice, I also ignore it. I dunk biscuits in my tea, crustless bread in my soup. I eat pasta and rice, rice pudding and tarts, Brownies and ice cream, sticky toffee pudding and custard. I’m sure I frustrate the hell out of them.
I’m awaiting the last CT scan result, and some idea of my prognosis. Has the therapy helped to extend it, even a wee bit? Unfortunately it wasn’t reported when I was last I was in hospital, but hopefully I’ll have that discussion next Thursday.
In the mean time, in discussion with my Consultant about my outstanding issues with swallowing, it was decided to try a short course of Radiotherapy. My initial reaction was similar to that I experienced when I was told I would need Chemotherapy, fear. I’d asked if I could have a PEG (a Percutaneous Endoscopic Gastrostomy), a tube that is inserted via the oesophagus and out via the Duodenum, through the abdominal wall. I have cared for patients with these feeding tubes for many years; they are easy to insert and to give bolus feeds through. This option is still being discussed, but first the Radiotherapy, to see if they can shrink the Oesphago-Gastric tumour.
Firstly I had to attend a planning CT, to work out the depth etc required for the gamma radiation. Then an ink spot and a small pin prick below my sternum tattoos the site. The Radiotherapy began last Monday. It’s all very efficient. You scan a sticker on your schedule to book in, then take yourself to a waiting room. Within 5 minutes I’m laid on the table and the therapists ensure my position is exactly as it was in the planning CT. They check and double check my name and date of birth, then they’re gone and the machine swoops over me and around below me. The room is bright and then the noise of a reversing truck echoes as 4 Gy (Grays – named after Louis Harold Gray who developed an equation for the delivery of gamma rays and their absorption by different materials) are transmitted. The machinery whirrs and comes above me again; more noise. I count the beeps, 30, then it’s all over and I’m out within 10 minutes. There are many side effects, but so far I suffer none. I am receiving a fairly low dose, only 20Gy, when radiotherapy often reaches 40-60Gy for many cancers.
It is the same as it has been before, I put my trust in science, and my professional colleagues, who I know have my best interests at heart.
Abbie and Lee announced that they are expecting a baby in September. I never expected to live to be a Grandad, but now I am. I could not be happier. This is the best news, ever. I have named it Lentil, since that was it’s size when they told me (according to an app Abbie had on her phone).
Now to look forward to my graduation party next Thursday. Care to join me?