WE’LL SEE WHERE THIS ENDS UP
It has been a long time since I put anything up on the old blog. After the end of chemotherapy I made a few tentative efforts but I could never get into it properly. I left off writing for a long time and, when you try to get back into it, there is a sense of forcing it. I don’t think I have ever written anything under any form of ‘inspiration’. The play for young people I had published* was written because I had a group of students I wanted to write something for and I also wanted to write about a group of young people who were nice, decent kids and not full of angst — the lead character is a bit of a nob but even he’s basically a good kid. My favourite British comedy film is ‘Gregory’s Girl’ which presents the young people as having problems but they are not a problem in themselves. God knows I would not want to go through my teenage years again but my teaching experience made me realise that the vast majority of young people were, most of the time, kind and thoughtful and wanted the best for themselves and others. They made mistakes, lost their rags at times but emerged as good citizens. That I am able to keep in touch with so many via Facebook is, I think, testimony to that.
[‘Can’t Explain’ — available from Lazy Bee Scripts website — http://www.lazybeescripts.co.uk/Scripts/Results.aspx?iSc=894 If you want to put on a play for secondary schools or youth theatre]
I recently wrote a short story which I am now having second thoughts about. I’m going to leave it a few days and then review it again to see if it needs editing, expanding or scrapping. The basic idea was that I write a story to the fit the title of a Beatles song chosen at random. The one that came up was ‘You’re Gonna Lose That Girl’ which is a great song. The idea came quickly, not necessarily a good sign, and I wrote the four thousand words or so over three writing sessions — about 5–6 hours in all. These sessions were spread over three days as I get tired very quickly. My days are characterised by the steady pace at which I have to do everything. If we have an early medical appointment I have to get up early to ensure I can fit in a nebuliser session [20–30mins] throat clearance [don’t ask] wash and teeth clean [15mins] and feed session [20mins]. I do not call my meal times as breakfast, dinner, tea or whatever as, there is no pleasure in any of them. It is the time I put nourishment into my stomach which keeps me alive. One of the drawbacks of Facebook is being constantly confronted by pictures of people enjoying lavish meals or drinking sessions. Most of the time I can ignore it but there are times when I resent it bitterly.
Sorry, whinge over — back to my short story. When I reread it the day after I finished it I suddenly felt very self-conscious about it. It has a very strong autobiographical element and whilst the characters and setting are real the story is a complete fabrication. It is, in effect, a part of my life story, with hindsight, as I would like it to have happened. I also chose to put the central voice in the head of the character who wasn’t me. Obviously I am giving that character, a real person remember, thoughts and feelings which I have no idea he actually felt, although I wouldn’t have blamed him for feeling negatively about me. The person in question always kept his feelings very much to himself and, even if he did feel anything like what I ascribe to him , he was much too kind to express them. The reread brought accusations into my head of smartass trickery [Pretentious? Moi?] and banality — it is a very ‘domestic’ story much concerned with washing and cleaning.
There was also another consideration. Could I put a work of fiction , however autobiographical, up on my blog which has been, largely, a description of the vicissitudes of my cancer and it’s treatment. In the past few weeks I have had several messages remarking that people have been disappointed that there has been nothing new on the blog for so long. There have been times since starting it when I have been overwhelmed by the kindness of the responses my writing has had and I have been very grateful for that support. [It is, however, a rather weird feeling to think that people are getting ‘enjoyment’ from my suffering — ghoulish bastards! I know that is not the case but I do not seek ‘escapism’ in music, literature or film — only television — which is why I love ‘Strictly’] I thought that to put up a piece of fiction might not be appropriate and that a piece explaining where I am now would be more helpful. Trouble is I have no idea where I am now.
I have had seven fortnightly treatments of immunotherapy with the drug Nivolumab. There has been a great deal of success with this drug with other cancers and giving it to me is, in many senses, experimental but, obviously, I had nothing to lose. Apparently only three other patients with similar cancers to mine are getting this treatment.There have been no side-effects from the treatment and the MRI scan taken after the third session showed that the tumour had stopped growing. I have my eighth session on Wednesday 6th November and another scan on the following Monday. The hope is that it has gone beyond halting the growth of the tumour and there may even be some shrinkage — fingers crossed. I refuse to speculate beyond that at the moment as I have had my hopes dashed before.
Weirdly it is my ongoing health issues beyond the cancer which are of the greatest concern. I have written at length about the the problems I have with mucus [song title — ‘Welcome to Snot City’] This is, at times, overwhelming and gets me very angry and depressed — so would you with a mouthful of snot it is impossible to shift when you can’t spit properly because of you’re swollen tongue! I actually began this blog two days ago [Saturday] but had to abandon it because I was constantly coughing up this filth from my mouth and, as a result, being sick. It does not exactly encourage clear thought or creativity. I have had a viral infection which necessitated a 5-hour trip to the acute oncology ward on Thursday night/Friday morning for blood tests and a chest x-ray. Didn’t get home until 2,30am — bummer all round for Sandra as much as me.
As a result of the infection I also missed out on the Halloween party Liam and Becky had arranged for the boys, a trip to the Redgrave theatre to see a ballet production of ‘The Wizard of Oz’ and an adult trip to see ‘Much Ado About Nothing’ at the Tobacco Factory. I know anybody can get ill and miss out on things but this felt particularly painful. It was not made any better by England’s defeat in the Rugby World Cup Final. I was saying ‘the best team won’ through very gritted teeth. Having had an awful Saturday evening I then had a good night’s sleep and felt champion on Sunday morning — bouncebackability triumphs again.
I have been getting treatment at the Lymphoedema Clinic but the swelling persists. I am still not sure if the swelling in my tongue is linked to the lymphoedema [a side-effect of the radiotherapy last year] or is connected to the necrotic ulcer. I don’t think the doctors know either and, perfectly understandably, their priority is treatment of the cancer. I could be in the position that my cancer is placed well under control yet I will have to deal with these wretched chronic conditions for the rest of my life and, if the immunotherapy is successful, that could be a long time. I should make it clear that I have been given no timescale regarding success or failure of the treatment. I’m going to be around for a while yet.
Over the last few months I have met several people who have been given quite definitive prognoses and all, so far, have gone beyond it. My good friend Tim Stacey [magician extraordinaire, Bowie obsessive, singer/songwriter and all round good chap] was given a very limited time which he has now breached and he is planning a special Christmas with his loved ones. I knew Tim before our cancer diagnoses as we both frequent The Star on Fishponds Road {best pub in Bristol by universal acclaim] and both were regulars at the Sunday Open Mics. I have had to resign myself to the fact that I am highly unlikely to ever play and sing again and I cannot pretend that it does not hurt like hell — however much my potential audiences might disagree] Is it wrong to envy Tim as he can, close as he may be to the end, still do his magic, play and sing and enjoy good food and a drink?
For the last few months I have been getting a great deal of support from St. Peter’s Hospice. When I was first referred to them my response was one of horror — that is where people go to die! I was not aware that they provided a whole range of support services which focussed mainly on palliative care and management of your condition. I was first offered the chance to use the facilities of their Day hospice. Every Thursday for twelve weeks I went there, free transport provided, from 10am — 3pm. Various activities were offered including Art Therapy, massage, counselling and relaxation classes. It’s greatest asset, however were the people there. The staff were a group of Nurses and Occupational therapists who,like the Macmillan nurses we have to come to rely on, mixed professional expertise and practical support with great empathy — they were happy to give you a cuddle if you needed one. There were a team of volunteers who ranged from a young Italian student, Adrian, who looked terrified on his first morning to Rose, an eighty-year old wave of energy and goodwill who lit up the room.
The ‘patients’ in the group were a remarkable range of ages and medical conditions, I was surprised at first that they were not all cancer patients — they just all had ‘life-limiting’ conditions, which is the remit of St. Peter’s. I loved the art therapy so much that I have acquired some sketch books and paints and fully intend developing my skills in that area. It is, like with my writing, not about the end result but about the creative process itself allowing you to lose yourself. It can help, I hope, to fill the void singing and songwriting have left. We had lots of free time to chat with others [or snooze] and it was great to talk about sport or the news [I had to avoid a couple of arguments about Brexit!] and not about our conditions. Obviously that did come up but we we were not defined by our illness. Interestingly we had a conversation one day where all the cancer patients there who had been through chemotherapy agreed that they would refuse it if offered it again — it really is the pits!
I had a lovely counsellor called Jo who listened attentively and responded supportively. It was a difficult time as we had received the news that my dear friend Phil, who I wrote about in ‘Squeezebox and Shuttlecocks’, had deteriorated rapidly and died as a result of Dementia with Lewey Bodies. My emotions ranged from utter grief at the loss of a dear, true friend; sadness for his dear family who had been through so much in the last few years; guilt that we had been able to do so little to support him and his family in the last few years to relief that his suffering was over, then guilt again about feeling relieved. Jo helped me make sense of it. Here was a man to whom I had owed a huge debt for all my life and knew I had to make the funeral. Given my routine of feeds, meds and flushes of my stomach peg, travelling is very difficult. The train journey up was on time, the transfer at Birmingham New Street was smooth and Phil’s son Peter met us at Coleshill station. Going into Phil’s house was very difficult but I realised it was his family’s house in which we had all spent so many joyous hours and would always be so. Seeing hid dear wife Tilly there, surrounded by family and friends was comforting. At the funeral itself, in the local church where Phil was a member of the choir, his daughter Rachael gave a wonderful eulogy. She had asked people to send memories and anecdotes which she carefully incorporated into her text. I was in tears of joy and sadness as she proceeded and it was a fitting tribute to a wonderful man. We were asked to go to the crematorium for the brief cremation service and then on to a local pub for the ‘wake’ where good memories of Phil continued to be exchanged. Rachel had done a photo display and it was warming to see Phil at his best and so many of us on our joint family holidays
This is where I have to speak about he problem which cast a shadow over the rest of that day and was a problem during the days at the hospice, particularly in group situations, and many other events before or since. Because of my swollen tongue and the added issues of the mucus and hypersalivation there are times when speaking is a nightmare. I am aware that I become almost indecipherable to most people and even Sandra struggles on some days. Given my compulsion to communicate it is intensely frustrating, particularly at an event like Phil’s funeral, when you feel you can’t participate in conversation. It is easier when you are amongst lots of familiar faces who know of your condition but harder amongst relative strangers who look at you ‘cockled’, as my Mum used to say. It also makes using the phone impossible — the odd silences I get if I answer the phone are quite funny at times.
There are times I can rise above it however. Last week we had a joyous occasion. My cousin Bindi and her fabulous husband Paul were paying a brief trip to Bristol to visit on their current world tour [they are circumnavigating the world] We had not seen them for many years and contact via Facebook is no substitute for the real thing. What was even better was that they had persuaded another cousin [Jo, now a resident of Zurich] to briefly join them for the Bristol leg of the trip as an added surprise for us all. My niece Rebecca put on a great spread for us all and the whole afternoon was a delight. When I had first met Bindi and Paul on an earlier visit twenty[?] years ago there had an instant rapport, a shared sense of humour and the ability to chew the hind legs off donkeys. The poor donkeys are generally a lot safer with me nowadays but I think I kept up my end that afternoon as my mouth was a little easier. They are in New York at the moment and their Facebook posts of wonderful views of the NY skyline and, it has to be said, food and drink — bastards!
Back to St.Peter’s. When my twelve week course was done I was offered a five-week course on ‘Wellbeing’ but this time it was being offered to Sandra as well. We have done three weeks now and, again, it is very relaxed and even the medical professionals are in ‘civvies’.There is a programme of sorts with demonstrations of relaxation techniques, including visualisations and T’ai Chi — we particularly love the latter and are going to find a local class to pursue it further. The joy is the requirement to focus and move thoughtfully and rhythmically to the extent that you do get lost in the moment. I suppose I have never had a problem with that; in fact it could be said I have often, in the past, found it all too easy to block out the world. It is probably why I have never really suffered with anxiety and why I have often found myself immersed in writing for hours when I feel ‘on a roll’.
What has been most remarkable has been the openness of the group to sharing their experiences. In only three weeks there is already a sense that anything can be said and nobody will be shocked or be tempted to censor. In the second week we were introduced to a ‘Wellness’ technique [I’m ot a fan of the word to be honest] called ‘River Of Life’. I must admit that, after only a few minutes, I was having doubts about it as it was both banal and rather patronising. The professionals acknowledge that these things don’t work for everybody but might be a help for some of us. Near the end one of the discussion a young woman I will call Sammi made the valid point that the ‘boulders’ in her river could not be negotiated as she had cancer all over her body, had been given a terminal diagnosis and indeed had gone the past the end date she had been given. She was living from day to day and never knew what would happen as she rose each day. The story was sad enough but made worse by her relative youth. Her testimony was honest, blunt and poignant and we were all affected by it. The professional running the session had the good grace and sense to ease it to a close — then we all went for a cup of tea and talked about cakes.
If you get a chance to visit the St. Peter’s Hospice in Brentry, Bristol then please do so — they are always looking for volunteers. It has recently been rebuilt and the work they are now doing on the gardens is fantastic, creating a real haven. I will complete the course and continue to get as much advice and support as possible from the professionals I am so lucky to have at my disposal. Had a rather different reminder of my debt to the N.H.S. this morning. From 2012 until 2016 I had a series of eye operations, including left and right cataracts without which I would not be able to drive or function. I had a follow-up appointment this morning and all is good with my eyesight unchanged. I have never had good vision but I can move around without that to limit me — thank you, Bristol Eye Hospital.
The next few weeks, particularly when I get the result of the MRI scan, will clarify my position and we can then proceed on that basis of knowing what progress is being made. They have said that the immunotherapy will continue as long as it is having a positive effect. I will let people know where things are as soon as we know.
