I am working with pastel on my earlier fine-liner pen drawings.
I have not drawn from life for six months.
These are my first tentative, explorative and experimental steps on a path which I feel will become a new and fascinating journey.
A full explanation of my recent life, and my absence from the life studio, is published in the previous post 'Life drawing to a close'
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6My last life drawing was on July 6th 2023. Soon afterwards I was diagnosed with Acute Myeloid Leukaemia. My life changed and I could no longer continue with my usual activities. Things are now so much better and the content of this posting describes where I now find myself both with my art and with life in general.
LIFE DRAWING TO A CLOSE
We are now well into 2024. My chemotherapy treatment continues but blood counts and bone marrow activity are getting back to normal. And I feel good. Any side effects from the treatment have gone. I am currently fascinated by the transition I am making from a strict day-to-day ‘survival’ lifestyle to one in which space and time is opening up before me. One activity which came to a halt is my life-drawing.
Just as
MY LIFE WAS DRAWING TO A CLOSE
so I anticipated
MY LIFE DRAWING WAS DRAWING TO A CLOSE.
But part of this transition has found me attempting reconnections with my art. I started to look through recent drawings, and I found them most difficult to understand. They seemed to have been produced by a stranger. Here were fairly abstract shapes, but clearly having strong figurative connections. Some I had to study for some time to understand what the pose was I had been responding to and more specifically I was frequently unable to recall the sequence of arrival of the parts upon the paper to create the final composition. I started to apply a transparent medium of a number of colours to unravel the mystery. At hand were pastels which I have had extensive experience of many years ago, and I knew that my line drawings using fine-liner pens would show through thereby maintaining my spatial, superimpositional and transparency approach of recent years.
So I will be posting the first of these explorations. Tentative and explorative, with uncertainty as what sort of path these steps will lead to. Not yet discussed with anyone, so unsure of the genre ahead. So far, in my note book, I have recalled my earlier ‘surreal cubism’, have linked with Picasso and Matisse, and the work of three artists new to me Horacio Quiroz, Quentin Monge and Soren Selleslag.
Now there follows a detailed description and explanation of what I have experienced over the past year but particularly over the past six months:
WHY THESE NOTES?
I am starting the notes for this diary on New Year’s Eve, December 31st 2023 as it seems to be the right time to do this. But exactly what the authorial intention is I am unsure. If to be useful to other sufferers then it is too lengthy, needs editing, together with a lot of checking on accuracy of medical aspects. If it is just the product of the author wanting to get it off his chest and to draw a line at a time when things seem to have improved and started to think about time ahead, then it has probably served its purpose. But I am specifically prompted to start writing after reading case studies written by people who have AML and who have obviously survived, as I feel I myself have been through a similar set of experiences and have come out feeling an increasing optimism about my condition and having started to engage with the concept of space and time ahead for me, So not only is tomorrow the start of a new year but tomorrow is the start of a new life for me. Today is also our 57th wedding anniversary which is a further marker of the significance of this moment.
PRE-DIAGNOSIS
Early months, probably starting February, may have been earlier, lacking in energy, feeing ‘under the weather’, possible virus (unusual, as I rarely have a cold)
My GP doctor prescribed an anti-biotic, then saw her again on April 24 go down to Chepstow Hospital in the afternoon for an Xray to check heaviness on lungs, etc (lungs OK), later a second anti-biotic May 23, and she made me an appointment to see her July 17 (seemed a long way off but I believe she assumed I would be OK by then and she just wanted to check up on me) but I rapidly felt weakish most days e.g. difficulty walking up track to open up hens in the morning; e.g. when attempting a walk, OK on the level but difficulty in walking up lane slope to start with. I’d given up doing most things outside as I just didn’t have any energy in my body.
In the Leukaemia Support website patient written case studies, about one third of 60 or so have AML, and without exception before they were diagnosed with AML each had experienced a period of many months of cold like symptoms, loss of energy, etc which was doctor diagnosed as something other than leukaemia, and often excused by the patient as tiredness as the result of an unusual event or activity, e.g. moving house, looking after an elderly parent, working hard and late, etc.
As an appointment was due I put off seeing the doctor even though I was increasingly weak, had lost weight of one stone, and although I was attempting everyday tasks it was with increasing difficulty.
THE DIAGNOSIS
Appointment day Monday July 17 at10.00am arrive at surgery to find my GP was involved in an emergency so was seen by a trainee doctor. I went through my symptoms with him, he was very thorough, he then asked me to wait while he consulted my Doctor, (a first but only slight suspicion of something more than a simple virus) to my surprise they both returned, and carried out an investigation, an Electrocardiogram (ECG) Asked to come back next day Tuesday July 18 at 10.50am for a blood test, and I think I recall also a urine test. Next morning, early Wednesday July 19 received a phone call from Surgery, this time from another Doctor who I later learnt dealt specifically with sensitive issues in the elderly, she asked me (told me) to go straight away to Nevill Hall Hospital, Abergavenny, to the Haematology Unit for a blood transfusion (big step up in my suspicion stakes: ‘a blood transfusion!’ Why? What is suspected). Suggested I pack a bag, but unlikely to stay in, but possible overnight for further tests. My wife drove.
Had transfusion, an Xray, further blood test, then given a room for isolation. In the evening told I was to be taken the following morning Thursday July 20 in an ambulance to The Grange (a spanking new, state of the art hospital) in Cwmbran.
A day of tests, observation, a nurse every hour or so. Second day, repeated close and continuous attention, Third day my Consultant came in sat down and explained my situation my wife had already arrived for this appointment.
Basically, as far as I can recall, “you are very poorly, diagnosed with AML, surprised you have been doing what you have been doing (jobs, walking, art), statistical prognosis of max 8/9 months based upon your condition, but on the positive side you are in good health “it’s rare to have such a healthy 81 year old”, so we can start treatment very soon, and you may be able to go home at the weekend or Monday July 24th, your health means we can administer a stronger chemo drug, but at your age a bone marrow transplant if necessary is not possible, would be OK at 60 years old" Signed a Non-Resuscitation agreement for whilst in hospital. Later signed one for afterwards. It was explained to me that if I was about to completely die then I would not enjoy at all my quality of life if resuscitated. It was bad enough at the moment but a resuscitated future sounded unbearable. So no question of not signing.
At weekend was told they would keep me in for observation during the start of the treatment. Reported sore mouth on 26th see later notes on side effects. Azacitdine and Venetoclax chemotherapy treatment by injections into the stomach. Intended benefits: prolong survival, control symptoms, reduce transfusion needs, improve quality and quantity of life. Pills: anti-fungal, anti-biotic, anti-sickness Mouthwashes. (on 27th after a bit of concern on my part things appear OK) Red count 74.
My mind and my concerns:
1. From the above the reader may deduce that I was fully conscious of events, of where I was, and of meetings with medics and the conversations. But in fact there are whole gaps in these first few days of which I have little or no recollection particularly the arrival and first events at Nevill Hall, then the night there. Nothing of going to the ambulance but my recalls become clear as I was woken from my semi-unconscious state by the bumpy fast drive in the ambulance.
2. But the main issue to fully pre-occupy my mind for these first 3 days was my bees. I lay at night concerned about them. Not about my health. One of my hives was doing really well and had five full supers on when I was taken in to hospital. I had started to put a new super together but it was in bits on the shed floor. How to relieve the bulging bees? Mentioned this to Anna my daughter, she told Jenny who worked at Bees For Development and the next day I was shown an image of Jenny and Nicola in their bee outfits next to my hives putting on a new super. They later returned on two or three occasions to put porter escapes on. Weeks later Grandson Jack helped me extract and at the end of November I potted 90 one pound jars of honey.
3. One interesting issue arose much later in the chronology of this journey. I always referred to me having ‘Leukaemia’ whenever I met anyone or when I talked on the phone or emailed a friend. I don’t recall ever saying or even thinking that I had ‘Cancer’. I did explain on one or two occasions that my AML was a cancer of the bone marrow and a cancer of the blood. But this is different to saying I have cancer per se, and using the word cancer as the principal term. I believe in referring to myself having leukaemia somehow softened the impact on my mind. Cancer is a loaded word and is commonly used in an alarming way. At the point when I did use the term ‘cancer’ I recall I became somewhat alarmed at its implications. (Enough of this issue, except to say that I do know that AML cannot be cured, that my life can be terminated by an infection, and that my leukaemia can spike up at any moment. On the other hand people have lived with their treatment of AML for many years).
During my days at The Grange I was visited by numerous doctors, sometimes each was accompanied by other medics and students. Apart from my consultant there was his brother also a haematologist, another doctor on July 20th who said I’d had leukaemia for at least six weeks, that I would need to stay in over the weekend, that I would feel very tired, but there were already improvements in my anaemia and white cells, and we would know more by Friday pm. She also on July 21st who looked at the spots on my stomach likely to be shingles, another doctor on July 24th who reported my white blood count was going down and that I was responding well, but I would be one more week as an inpatient. Apart from possible shingles there was tinnitus at times quite loud but continuous and I noted a particular discomfort lower left chest which was likely to be my spleen, for which I went down for an Xray. By this time my mouth was becoming increasingly sore so regular mouth washes took place but some foods were painful to chew, so I had to be very selective when the menu lady came around to take my order for the day. Fluid build up in my lower legs (edema) became noticeable, more than usual. A red skin rash (purpura) appeared on my legs to start with then spread to torso and partly on my arms. Then there was the amazing friend who turned up.
She is a haematologist working in a number of the linked hospitals with a base in Nevill Hall. She is a close friend of my daughter Anna and a soon as she learnt I was in hospital paid me a visit, then later she often came to see me on my frequent visits to Nevill Hall. She knew all the nurses and doctors and was able to access my database and kept herself uptodate with my progress. So took the trouble of finding out how I was and offered support and advice to me which became most valuable in helping me understand what was happening. She provided a different perspective as a friend but one who also had a full medical understanding of my condition and future prospects. Amazingly valuable. She talked of support services available, the sort of infections I must avoid at home, getting help on the land, etc. She gave me her phone number to use anytime I needed a chat or help. A true friend.
First Treatment of 7 jabs: I received 4 jabs during second week in hospital, went home on Tuesday August 1st and then three daily visits to Nevill Hall August 2/3/4 for the remaining jabs.
As soon as I got home from hospital I had a phone call the next morning from MacMillan Support re benefits (£101.75/week starting immediately) other support and Blue Card arrangements. Very comforting.
Some notes from my diary:
Questions such as: When will I be vulnerable to infection? Answer: Now. Hair loss? Answer: just thinner (this has been the case but no effect on beard).
A record of blood transfusions most days during the first 10 days in hospital.
How to mentally engage with and address the coming months?
How to handle one’s death or Living day-to-day?
How to approach the maximisation of enjoying and making the most of each day?
That the end is immanent is a fact so that cannot be changed.
What can be influenced is each day: the quality, the enjoyment, making the most of things. How to focus on this is the key question. But, What is the mechanism? What is the process? What are the techniques? Engaging with as many everyday tasks as possible including walking. BUT Is there an additional mental/psychological trick to employ? This I will research. Who has/is in this situation?What is written about it?
PAST – everyday tasks were all part of working towards and carrying out ‘the vision’.
NOW – everyday tasks are a matter of maximising survival and quality of life, on a day-to-day basis……… AND I am suggesting this needs help.
End of diary notes.
My room at The Grange: is one of 8 in the Haematology Unit. Unlike all the others which face into courtyards and a view of opposite walls and windows, mine looked westwards through the floor to ceiling window across the tree floored valley of the southern part of Cwmbran over the central buildings and athletic arena to the hills beyond. On the skyline to the south I had a good view of the Iron Age hill fort of Twmbarlwm which instantly kept me in connection with our own hill fort of Gaer Fawr.
At home I kept a daily record (Aug 2nd to 27th) of readings: under-tongue temperature, blood pressure, oxygen level, pulse rate. Thereafter I did occasional readings. Previously my wife had equipped the household with all the equipment. I also kept a daily record to check that I was taking: mouth wash, pills, and unusual bowl movements etc. including water intake.. I needed 2 to 3 litres per day for kidney flushing (3 preferably)
From August 7th to October 18th I had weekly visits to Surgery and Nevill Hall for numerous blood tests, blood transfusions, Aug 22 bone marrow (2nd bone marrow later on October 31).
My consultant kept me up to date with progress….Sent me by email tables of counts.
Here are a few recalled Consultant quotes indicating my progress. These ranged from:
“Red count is extremely low, white count off the scale so you are extremely vulnerable to infection”
“You were extremely poorly”
through to
“There is no overt evidence of leukaemia in your bone marrow”
“still evidence of leukaemia”
“Blood cells up with time”
“I am very pleased with your progress”
“Your good progress has been up to your efforts”
Second treatment of 7 jabs Sept 19/20/21/22/26/27/28. Covid and Flu jabs on Sept 11th: checked to see if any conflict with treatments. Actually the surgery moved dates to avoid simultaneous injections. I also had swollen lower legs and feet, not unusual for me, but now much more severe. Possible causes: kidney disease, age, response to a drug, compromised immune system.
Starting around the time of my second treatment three conditions developed none of which were very pleasant:
1) weekend Sept 23/24 constipation and urinary block causing extreme and agonising stomach pains. Leukaemia Emergency phone call at 4.00am on Sunday, Royal Gwent Urinology Unit at 6.00am, Clear out and catheter fitted. RG prescribed prostrate pill. Now two; one for surface shrinkage and one for longer tern reduction in size, but probable no signs for 6 months. Contacted District Nurse in Usk, catheter dislodged, infection, swollen foreskin, new catheter at District Nurse. Catheter removed and all clear after three weeks at Royal Gwent. Still uncertain about the cause of this. The drugs can cause constipation but so can changes in diet. Also I have had for a number of years an enlarged prostrate (getting up to wee 4 or 5 times a night) but on this occasion I was up every hour. The conclusion is that the combination of being constipated, in my case described as faecal impaction, plus the enlarged prostrate put pressure on the urinary channels. It was unfortunate for me that this condition emerged as apart from that I was feeling quite well, and having no side effects from the treatment or from the numerous pills I was taking (it can be quite alarming to read of the side effects described on the literature attached to each packet of pills).
2.) a red rash appeared firstly on my thighs, then spread to lower legs, torso and my arms. Small blotches to start with, beneath surface of the skin, which then joined up. My consultant had not come across this condition and decided to investigate. I started my own research and asked nurses about it. Apparently it is a fairly common with a blood cancer, and would eventually subside. I had it for about two months or so until it started to fade and eventually disappear. Known as Purpura.
3) my mouth generally became very sore, my gums swelled and partially grew over the teeth, but the condition thank goodness did not extend into my throat, but the throat entrance and ears and the right jaw joint all became irritated and were a constant source of discomfort. The softest of toothbrushes was like using a heavy duty wire brush, I could not chew anything without extreme discomfort. My teeth were pushed together so much so that floss could not pass between them. Again this condition is fairly common with cancer. All my food had to be liquidised. Soups, yoghourt, juices dominated with vegetables cooked and liquidised, apples stewed, etc. Mouth washes, gell for the gums, were prescribed. Again this condition lasted for about two months or so until it gradually but finally disappeared.
Apart from these three conditions I felt reasonably well and had none of the other side effects described in the literature.
Oct 9 Dietry phone appointment. This had been arranged by my consultant in order to discuss best diet for my illness (I was keen to discover whether the advice in the literature I was given should be followed word for word, and to discuss the great irony I was dealing with that the diet which over 40 years had produced such ‘a healthy 81 year old’ should now be abandoned for pasteurized and processed foods) However the emphasis in the conversation focussed on some very helpful advice as to how I might put on weight and build up energy level. In summary: snacks between meals, eat frequently (5 times a day), processed foods nothing raw or unpasteurized, emphasis on calories and protein.
Oct 19 No blood transfusion required as red count over 80. AND none since.
Oct 30 second bone marrow test. Bone marrow working.
By the end of October, I seemed to not have any side effects and was beginning to do tasks outside (such as reclaiming my vegetable garden from the invasion of nature) without feeling at all tired. Energy seemed to be returning although time spent on any task was quite limited at perhaps an hour or two on any one day, then not everyday. I was not required to have further blood transfusions so visits to NH were only for chemo jabs and a face to face update with my consultant.
Third treatment of 5 jabs Nov 21/22/2428/29. This was a welcome return to NH for a few days as I was able to talk with the nurses who helped me gain insights into my progress, but also to meet with other patients with whom I had shared experiences during earlier visits. Sitting in a bay of four stations, each patient having a transfusion or other drugs administered, for anything from two up to six hours, over a period of about three months, there developed a community of individuals each with their own particular experiences, who in most case talked freely with sometimes intimate detail. To listen to their stories I gained so many insights into my own condition. People talked of how their life is often dominated by a day-to-day existence, but nearly all despite their terminal condition conveyed an enthusiasm for life, an optimism about their future. I became aware that many were becoming role models for me, and I was able to add a ‘futures’ dimension to my thinking to what had become a rather self-centred, day-to-day way of existing. I had gradually understood that the nurses and the other patients had become a support group. But now without these regular visits I began to miss it and realised its importance.
Dec 12 phone appointment: good news all round re progress and counts, Red count 120 (normal is 130 to 180) and news of fourth treatment. Following my realisation of the role of support groups I had started to research what support existed, i.e. MacMillan, etc. I raised this with a nurse who described a trial run of a meeting of patients a month or so ago at NH. She said that they were now planning a regular programme of support meetings and I asked to be kept informed. I am fairly desperate for a particular kind of support in the form of people just talking about their experiences and so feeling part of a ‘community’ of like minds. I have benefitted immensely from reading the case studies in the Leukaemia Support mentioned above, but to talk face to face would be so much more beneficial and productive. Isolation during Covid continued for me with my lack of immunity. I came across the local Cancer Cafe which I must look into.
Fourth treatment of 5 jabs Dec 19//20/21/22/27 Straightforward, either side of Christmas.
December 31st started writing these notes, continued on New Year’s Day.
My Welsh NHS experience:
The Grange Cwmbran, Nevill Hall Abergavenny, District Nurses Usk, my local surgery with nurses and my GP, Haematology at The Grange and Nevill Hall, Urology at Royal Gwent, Dietry (by phone). In addition MacMillan Service. Exceptional, friendly, loving, caring attitude throughout the system. It is the group of nurses in Haematology at Nevill Hall, two of whom also looked after me at The Grange, whom I have met regularly and frequently and have come to know well and have learnt of their dedication, devotion to duty, knowledge and respect they have for their patients. A number of hospital doctors contributed and my consultant is amazing.
A final thought on some factors contributing to my positive response to my leukaemia and to my treatment (and the comment that “we rarely have such a healthy 81 year old”):
a) OUR WAY OF LIFE: 0ver 40 years of growing own food, organic no herbicides or pesticides; little or no processed food, physical outdoor activities of building house and working the land
b) IT’S IN THE GENES: and not really thought about the significance of this until recently, that Mum & Dad left us, both at the age of 91. (Mum had a bowel cancer for about six months and Dad decided he could not live without Mum, an amazing mind over matter, he went four weeks later. As he lay in his bed he said to me on the Thursday I will not be here next Wednesday. And he wasn’t!).
c) AND ABOVE ALL ELSE MY AMAZING WIFE: Such a rock. She has lived her own life whilst resurrecting mine: riding her lovely horse Holly, playing her Welsh folk music, learning and talking her Welsh language, constantly nurturing the flora to the grounds of our home, reading profusely, running the household, engaging with children and grandchildren.
.Between chemotherapy treatments:
1 to 2: 6.5 weeks
2 to 3: 7.5 weeks
3 to 4: 2.5 weeks
Nos 5 will start on January 16th 2024.
Weeks since starting to feel a bit ‘under the weather’: 48
Weeks since diagnosis: 24
Weeks since last blood transfusion: 12
The above text completed by Robert Fowles on 02/01/2024.
