‘…well not exactly sore, my tongue is sort of tingling… and when I took my temperature this morning it was 36.9 and then thirty minutes later it was 37…’
‘Okay Harry, it sounds as if there is nothing to worry about, just let us know if…’
‘…and I didn’t go this morning do you think I should take the laxative?’
Harry the hypochondriac had never been so happy since being diagnosed with cancer; after forty years at last somebody believed he was ill. He was no longer worried he might have cancer now he actually had it. Now he had started chemotherapy he even had his own hot line to call anytime, twenty four hours a day, if he had any symptoms. That was lucky because he had a lot of symptoms.
At the group chat for chemo beginners he had been the star pupil, it was rather like being back at school only with tea and cake. The nurse praised him for asking plenty of questions, though his classmates kept looking at their watches. She emphasised they must ring the hot line, even if they did not think their symptoms were important.
At home Harry checked his home made charts. He had a good collection of lateral flow tests which he did daily, one could not be too careful with Covid. He took his temperature every hour after the nice chap on the hot line said there was no need to take it every thirty minutes. But he was still worried when he thought of all those white blood cells that had been destroyed. When he had told Pam across the road all about his diagnosis, treatable and curable, she had patted his arm…
‘That’s what they said about my John, but his immunity was shot to pieces and it was the pneumonia that carried him off.’
He liked Pam, she understood his worries.
‘Now Harry, you be careful that district nurse gives you the right injection, our Julie went into that anaphallic shock…’
The district nurse came every day to give Harry an injection to boost his white blood cells. They were very nice and listened sympathetically when he updated them on all his symptoms, though he seemed to get a different nurse each time, so he would have to tell the story of his diagnosis right from the beginning… If they were not there by one o’clock he would ring to check they had not forgotten.
He was quite sad when the seven day course was complete, but at least he would see them again after his next chemo session. He kept the yellow plastic ‘sharps’ tub on the mantlepiece so visitors would appreciate the seriousness of his condition.
Harry began to worry again… supposing they had got his diagnosis wrong. Surely they should have operated first, those scanners might have missed something, perhaps he had another tumour of a different sort…
The group chat on chemotherapy for beginners I saw as a last chance to be out and about. I had been to a similar thing with Cyberspouse in autumn 2018. In those pre Covid times we all sat round a big table in a small classroom and it was a very jolly affair, with our English compulsion to make jokes in medical situations. Most people brought their spouses and there was tea and cake in the middle. This time we were in a church centre opposite the hospital in a large hall with spaced out chairs in rows. Everyone was heading for the back rows so I thought I would be helpful and choose the second row. A mistake as I couldn’t see everybody else properly. We were all given a home work pack and a cup of tea.
All you need to know from this chat is that chemotherapy kills fast growing cells, if it killed all cells we would be dead presumably. Fast growing cells include not only malignant ones, but those we need, such as white and red blood cells, also those we like such as our hair. All chemotherapy is different, a variety of chemicals depending on which part of you they are targeting and every patient can react differently. What is for certain is we all lose our immunity and get fatigue, a variety of available drugs and vast medical experience should prevent nausea and vomiting these days. The Big message was Ring the Hot Line, the number on the Red Card, the number written on every piece of paper and leaflet issued. Any symptom that you normally ignore Ring the hotline from toothache to temperature.
That done I walked down to the shopping centre in the sunshine and headed for Beales’ department store, ironically still open, though its flagship store in Bournemouth closed down even before Covid. The new very bright café upstairs is quite spaced out and quiet, people are still asked to wear masks in shops, even though Boris says we don’t have to and I did not want to catch anything before my Covid test in a few days. The top floor had turned into a clearance section and I bought a few little things plus my fabulous bargain of lined curtains, intended for interior decors, but ideal for my beach hut… once I have made a very big hem. Curtains are actually very heavy and I had to ask for a carrier bag which fortunately was environmentally friendly and edible. The bus driver said how nice it was to see a Beales’ bag again. I felt like I had had quite an exciting day!
Isolating or not isolating for chemo in covid times is still rather vague, urged to be very careful, but told to carry on with normal life as much as possible. Friday saw me back at the hospital for a Covid test; this time I went straight home. Saturday night I cooked a roast chicken for the four of us, my daughter had a long weekend pass and Sunday we walked to the beach hut and went swimming. At this point I was feeling very fit, I have been walking more than five kilometres and doing loads of gardening…
Monday was chemo day at the cancer centre in the Yellow Zone of the hospital. My daughter took me. In pre covid days you could bring a friend for company. Now no extras set foot past the front desk. Having been told I would be there for four or five hours on the first visit and to bring things to do and lots of layers to keep warm with the cold cap, I was the only patient there with a large overnight bag. Our little ward had four reclining chairs and one young woman had a cold cap on, looking like something out of a brain transfer in a science fiction film. I asked if it was her first time and she said no and you get used to it.
As I had to have an anti nausea tablet which takes one hour to work, but lasts for five days, it seemed worth filling in the waiting time by at least trying the cold cap, which has to start forty five minutes before chemo. First your hair is sprayed with water, then a rubber cap on, then the metal helmet which must be tight fitting. Cotton pads are put on your forehead to stop it rubbing, but the water and pads made me think of the electric chair… The weight was probably worse than the cold in giving a bit of a headache, it turned out I could have brought my own paracetamol. You are allowed to stop if you don’t like it…
I was the only new person, one old / older lady said she enjoyed the day out and we had all chosen a hot lunch from the menu. My chemo actually only took seven minutes for red stuff in a syringe into the canula and then a drip for twenty minutes, but followed by another ninety minutes of cold cap. I was allowed to go straight away; three hours and ten minutes and I had only looked at my newspaper and phone, puzzle books and kindle untouched.
Back home I thought I would recline on the sofa with a cup of coffee and heard my daughter on the phone telling her brother and husband I was asleep on the sofa, no I wasn’t… later on I thought I would get up and get the washing off the line and water the garden, but I only took one thing off the line and felt wobbly…
In the days that followed I had seven daily injections given by the district nurse, these boost your white blood cell production. On the first visit she took my temperature and it was too high, so I did have to phone the hot line; fortunately it was borderline and I had no symptoms, so I was told to keep checking my temperature. In the following days I did virtually nothing and my mouth got more sore, another side effect, but I was still eating. So this was the famous fatigue; just like when you feel wobbly recovering after an illness only more so, wondering if you will ever leave the house again or how you could possibly have thought it would be easy to post blogs while you were stuck at home. This is just a tiny insight into what it must be like for people with long term chronic conditions and those who now have Long Covid. Apart from that there was nothing else to complain about and low and behold I was back pottering in the garden on Friday and walked round the block this morning. Tomorrow, two weeks after chemo, is a visit to oncology outpatients to see the nurse, then Friday will be another Covid test and blood test to see if I’m ready for the next round…
If you are squeamish or do not like dark humour read no further.
One of the leaflets I received, produced by Breast Cancer Care is called Understanding Your Pathology Results, but most of us can only glean the meaning of some of the main terms. After all, the surgeon, oncologist and anonymous people in the laboratories have spent years studying human cells and what can happen to them.
When we went back to the Ladybird Suite ( pink zone ) to see the surgeon three weeks after my operation, the first item on the agenda was an examination. She pronounced the work of her colleague to be excellent; she was hardly likely to say ‘Oh my God, what on earth has he done!’ The whole area felt like a water bed, but this is normal, all those lymph fluids that were going into the wound drain bottle had nowhere to go, but eventually are absorbed – unless you are unlucky and have to have a bit of plumbing work done!
Then through the magic door into the consulting room where my daughter-in-law joined me as another pair of ears and moral support. The consultant said ‘We made the right decision to take everything away’ – she did not word it exactly like that. In layman’s terms there were lots of bits including quite a few lymph nodes. ‘So all the cancer is gone BUT you Must / Need / We Recommend chemotherapy followed by radiotherapy and then hormone treatment.’ WHAT!
Just because your aunt had a mastectomy years ago followed merely by tamoxifen for five years and your friend is just having radiotherapy, does not mean you will get away with it. Everyone is different and there are all sorts of tumours and grades. Basically our useful lymph nodes are also good at spreading cancer anywhere so the chemotherapy is a preventative attack. Next on the agenda was a CT scan of everything except my arms and legs to check if any cancer cells had turned up elsewhere.
No problems finding the CT place; I had already been to the blue zone for my MRI, not far from Costa Coffee and the main entrance. But somehow I couldn’t find CT. I asked at the MRI reception and she said We’re minus 1 you need to be on zero. Follow the green wall and turn left at the end, then go up in the lift.LIFT! I don’t do lifts, but luckily there was a set of stairs. There is not much drama for the CT, except you have to drink lots of water and have a canula put in your arm so dye can be injected. The scan doesn’t take long fortunately after all that water.
By the time the oncologist appointment came round it was the school holidays and Team H came to stay for the first part of their summer holiday, so my daughter could come with me. We went to town early so we could go to Marks and Spencer, actually try clothes on in the new ‘post Covid’ freedoms, though still wearing masks. Lunch out, still a novelty for me, then a stroll up the road to the hospital and back to pink zone. Oncology outpatients is down on Minus Two Floor, but strangely we were on ground level with a pleasant courtyard outside.
Our temperatures were taken ( Covid reasons ) and I was weighed and my height measured.
Warning cancer jokes…
When my aunt was receiving treatment for secondary cancer ( yes it came back years later ) she joked to the nurse ‘Well I have discovered one thing, if you don’t eat you lose weight’ then realised the nurse was a very big girl.
The waiting room was quite nice with the usual relaxing seascapes; I thought it would liven things up if they had darker paintings like Edvard Munch’s The Scream or a few Hieronymus Bosch paintings of hell.
We didn’t have to wait long to see the oncologist and my breast care nurse was also there for support. No one can force you to have treatment of any sort; it’s at this stage celebrities go off to live on a diet of raw vegetables and try alternate therapies. The rest of us do our best to make an informed choice and writer me likes asking questions.
The CT scan was clear, excellent news. But chemotherapy was still recommended. I asked about the base line of doing nothing; fifty fifty chance of cancer returning in the next ten years, the odds only going up by 8% with chemo. That didn’t sound much, but radiotherapy added another 7% and the five years of hormone treatment another something or other. Cancer could spread to the lymph nodes in the neck, which is exactly what happened to my aunt, though she had made it well into the new century and her eighties by then… My daughter was trying to read the indecipherable charts on the screen … Statistics don’t mean a lot, they could say forty % of patients who had no chemo died within five years, though some were in their nineties, others had heart attacks, a few got run over by a bus and one fell in a volcano doing his bucket list.
I had hardly any of the risk factors for breast cancer, so we can never make assumptions and you can never know for sure the alternative outcome. Nor can they tell you how the chemotherapy will affect you as everyone is different, except, annoyingly a guarantee your hair will fall out! What would you decide?
Yes, might as well give it a go. After I signed the consent form we went into another little room with seascapes to chat with the nurse about all the downsides and I had to decide if I wanted to book the cold cap, which may or may not stop your hair falling out.
Next on the agenda is the ‘group chat’ in the church hall opposite the hospital; learning about chemotherapy. Also a home visit by the community oncology support nurse and then start treatment on 23rd August. Everything is very efficient.
In the meantime I have been swimming in the sea and gardening and walking.
Whether you consider it started at the twelfth stroke of midnight, first of January 2020, or a year later, I think we can all agree the third decade of the Twenty First Century has not started well. But even if we have lost loved ones, friends or fellow bloggers, life inevitably goes on, though ‘normal life’ still seems a long way off. My life took an unexpected turn a few weeks ago when I was diagnosed with breast cancer; treatable and curable, so at my age ( not that I’m that old… ) can’t complain! It IS tragic when young mothers get the more aggressive forms of breast cancer, it is tragic when any young person or child has cancer, life is not fair and none of us know the rules of the game…
In the space of a few weeks I have entered the system, had all sorts of tests and my operation brought forward. The NHS has come up trumps, but it is true that breast cancer has had a lot more attention and research devoted to it than other cancers. It is also true that if you have other undiagnosed chronic conditions you are not funnelled so swiftly and kindly onto a pathway.
Many of us have tests of various sorts over the years with all the wonderful magic waves, magnetism, ultra sound that exist these days, then feel a bit guilty when it turns out nothing is wrong, you were just anaemic or it was just a pain, nothing serious. Then one day the atomic super scanner does find something; to say it’s unexpected is not true. I have lived with cancer all my life, brought up on the stories of my grandmother, who died of bowel cancer at 56 when I was little; the only grandchild she would get to meet. My grandfather had died suddenly the year before, also 56. A short time before, he had been saying how good life was, with lovely little me and my grandmother returning from hospital after a ‘successful’ operation. Family legend has it that Grandma ‘gave up’ after losing her husband; the reality was that there was no cure for bowel cancer then. But it is true that my mother walked into her mother’s bedroom one day when she was undressing and saw lumps on her body. She was shocked that her mother had not told them or gone back to the doctor. I seem to have always known this story with its vivid image of cancer bursting out all over the place.
Few modern women can be unaware of cancer, expecting or fearing our wombs, ovaries or breasts to be invaded at any moment, not to mention all the other parts of our bodies. I am not a doctor or scientist, but the simplest explanation I have read is that it would be a surprise if people and other creatures did not get cancer; our bodies are a mass of living cells designed to constantly reproduce, sometimes they go awry. When my aunt in her seventies sailed through her mastectomy I said I would never be afraid of having one; my mother had a mastectomy in her nineties and took it in her stride, living long enough to die of old age. With my father dying of leukaemia and my sister surviving cancer a long time ago I have glibly assumed it was just a matter of when, not if I would get cancer. Humans are living long enough to increase our chances of succumbing; there are no magic bullets because there are a multitude of cancers, lots of people get better or have a long remission, others don’t. I have no more right to survival than anyone else, only to not cause my family any more stress after losing their father nine months ago. The Game of Life is strange; a local friend has just had a mastectomy and my old school friend was having breast surgery the day before I got my diagnosis, I am certainly not alone.
Warning Cancer Joke
Doctor: ‘I’m sorry to have to tell you the tumour is malignant.’
Patient: ‘Oh thank goodness, I was worried it was cancer.’
And more irreverent thoughts…
Daughter on phone trying to sort out my iPhone account… Me: ‘Just tell him I can’t sort out my phone cos I’m a widow and I’ve got cancer’– Yay, now I have two reasons for not doing things…
Yes there are plenty of positives. I can’t go to the camera club AGM as I’m isolating ready to go into hospital on Friday – oh hang on, roadmap delayed, AGM will be on Zoom, I can go…
Our family has a tradition of feeling guilty, about pretty much everything and now a weight of guilt has been lifted off my shoulders. I can hold my head up high and look others in the eye. No longer feeling guilty for going around being healthy while others have so many medical burdens to bear.
How lucky that my younger son and his fiancée have given up their rented home and are moving in with me this week as part of their plan to be in a better situation to buy their own place. Their planned seaside break next week has turned into being carers, not so lucky for them…
My NHS daughter will be organising her brothers and the NHS as she did last year; as she is a physiotherapist she will make sure I do my exercises.
It has rained a great deal, summer solstice was a wash out, but at least my garden won’t need watering for a little while because…
As I am having lymph nodes taken out as well there will be lots of things I can’t do with my right side like gardening, cooking, housework… More importantly maybe I won’t be able to type much – good excuse for blogging being erratic, though perhaps I’ll post lots of pictures.
To go with my garden pictures here’s my favourite happy garden tune ‘English Country Gardens’, an old folk song arranged for the piano by Australian Percy Grainger and played with gusto in this original recording.
Warning: If you want to avoid the topic of death and dark humour read no further.
Covid 19 has made people think and talk about how people should die, with emphasis on not being alone, preferably with family. Covid patients in isolation have been unable to see loved ones.
In reality most of us cannot choose where to die or plan the scenario; victims of murder or major disasters certainly don’t have the luxury of dying in their own beds comforted by family. Awful circumstances such as terrorist attacks find total strangers holding the hand of a dying person, giving their death some dignity. As no one comes back to tell us, we cannot know if the surroundings and company or lack of it make any difference to their own unique internal solo journey. Celebrities often seem to have died ‘peacefully at home with their family present’ but folk lore and family tales seem to indicate that dying people often wait till the very moment loved ones pop out of the room.
Most terminally ill people will probably get the chance to opt for palliative care at home, though it can’t be guaranteed; they may need to go to hospital or a hospice eventually, but Covid has made it even more desirable to stay at home and leave hospital beds free for others. Unless everyone in your family is a medical person, carers will need help along the way or near the end; team work and various bits of equipment are required to make life easy for patient and carers. There is nothing to stop you ordering wheelchairs and all sorts on Amazon and getting next day delivery, but the National Health Service is geared up to lend what you need and the various teams helping you will be busy arranging equipment. The largest item is the hospital bed; you might die in your own home, but probably not in your own bed, however romantic that looks in films. The beds have to be plugged in and do all sorts of things. The bed and other items come with wheels and stiff pedal brakes impossible to put on or off if you are only wearing your slippers!
In the first few months of the lockdown I coped fine by myself with Cyberspouse. District nurses were trying to avoid going in any homes, but they phoned regularly with advice and to arrange some of the medications. They were ready to come out with their protective gear if necessary. Cyberspouse was happy not to have any visits, medical or otherwise, relaxing at home in the exceptionally sunny weather we had.
Later on, family help was more vital than keeping isolated and they took turns to come and stay; it was only in the last ten days that the district nurses came and arranged for Marie Curie nurses to parachute in with four visits a day. A helpful bright yellow book arrived promptly in the post. We were also glad a few times to ring the emergency numbers that had been sitting by the phone for months; night duty district nurses and 111 doctors. Marie Curie were excellent, compassionate and caring ladies and one chap. Visits rapidly increased and they made sure I had a night nurse for what turned out to be the last night, one of the few nights I was going to be by myself. They told me I was going to have wonderful Linda who had been doing the overnighter ‘forever’.
Linda arrived with a huge bag, rather like a mature Mary Poppins. I explained yet again that none of the family lived nearby, but they had all been to visit and my daughter was coming back the next day. It was a busy week in real life with two grandchildren just back in the UK and starting a new school and my daughter’s son starting school! Younger son had just got engaged. Linda was there to make sure Cyberspouse was comfortable, to organise the practicalities and make sure I didn’t miss the moment…
I later got a nice card from Marie Curie and they have rung me a few times to see how I am getting on. They are a charity well worth supporting.
Handy Home Hints
You might think your loved one is past the point of seeing the GP, but it is the GP who has to prescribe the drugs and you will have to go and sign for the ‘just in case’ controlled drugs as well as collecting various ongoing prescriptions.
It is helpful if someone in the family works for the NHS or has a friend in palliative care nursing … my daughter is a physiotherapist and had that very friend to ask for advice. She always made lists of questions and sounded professional on the phone, so we were well prepared.
After the death a doctor has to come and certify the death, either the GP or the on call ( 111 ) doctor at night. After that you must call the funeral director, but you can decide if you want them to come as soon as possible or wait a while.
Afterwards you will have to return all the drugs to a pharmacy, especially the controlled drugs, but unused needles have to be returned to the doctors’ surgery.
Darkly Funny Moments.
The next day, Thursday, the funeral directors phoned to say they had not had the notification from our GP of the death. The on call night duty doctor had sat at the kitchen table typing into his lap top, saying ‘everything is going straight through to your doctor’s surgery’ but my writer’s mind thought ‘I have no proof he’s even been here, no piece of paper, was he actually a doctor?’ I was slightly reassured that nurse Linda knew him. When my daughter tried phoning our surgery she couldn’t get through and in the end resorted to using her internal NHS email. Luckily the information did end up in the right place.
One thing the district nurses requested unsuccessfully was a hospital bed extension, we had been expecting it for weeks. When a chap with a truck arrived at the door on Thursday morning I thought he was very quick to collect the hospital bed until he said cheerfully ‘I’ve brought the bed extension’. Poor bloke was embarrassed when I apologised that it was too late.
We had not seen much of the palliative care team from the local hospital who originally got us organised. One of the nurses had phoned the previous week saying ‘I’ll touch base with you on Friday.’ Sure enough on Friday the phone rang and she said brightly ‘Just calling to touch base’… so I had to tell her the news.
Because of Covid we were saved a trip to the registry office; instead I had a nice phone chat to Polly the registrar including Cyberspouse’s no funeral request. After taking most of the details she asked me my occupation. Oh oh, was I going to fail this part? I replied that I had done all sorts of things and she said ‘How would you like to be known in a hundred years?’ Well who in a hundred years would know I didn’t earn a living at it, so of course I replied ‘A writer!’
When my mother planned her funeral five years ago she could never have imagined the service at her local church would be streamed live across the world. Covid has changed how we deal with death, before and after. Mum had outlived my father by twenty four years, at 94 she was happy and ready to go. She was the same age as The Queen and David Attenborough, who are still hale and hearty, but that’s the game of life.
I wrote my first Game of Life blog in November 2018; here is part of what I wrote.
We have to leave Summertown, the days of being recycled teenagers are over. There is a very real possibility that Cyberspouse will be outlived by the Duke of Edinburgh and my mother.
Cyberspouse outlived my mother by just over a month, he has been outlived by the Duke of Edinburgh. In this Covid world those with terminal illnesses are among the many who have been isolating and shielded at home, not to cheat death, but to have it on their terms. Cyberspouse achieved his aim of never going near a hospital again; happy sleeping a lot and just doing what he felt like doing. For most of those six months we were on our own, though with various medical teams at the other end of the phone. You can read about our life in lockdown here.
Covid restrictions eased in August and we soon needed to make up our own rules so family could come and help. It was only in the last fortnight that the district nurses and Marie Curie nurses parachuted in; they were marvellous and worthy of their own blog.
There has been plenty of dark humour along the way. Cyberspouse was always adamant he did not want a funeral, very handy as traditional funerals are difficult or impossible with Covid.
Anyone dealing with cancer or illness reading this, don’t let it scare you; every case is different. Friends much older than us, sending sympathy cards, have had cancer and other dices with death years ago… open heart surgeries, body parts removed and they are still here, that’s the game of life.
Colin Campbell Gogerty 24th January 1952 – 2nd September 2020
The Covid Chronicles were launched in March when presenter Evan Davis asked his audience to write in with personal accounts of life during lockdown. Perhaps this is what I would write, though I have exceeded the suggested 400 words.
The last day life was normal for us was Burns’ Night, 25th January 2020. Friends came round for dinner, my husband cooked. The day before, his birthday outing of choice was a trip to Ikea, our last outing.
Life hadn’t been completely normal since his cancer diagnosis in autumn 2018, but chemotherapy had gone well and 2019 was filled with what was normal for most of us last year, holiday breaks, long walks, family visits, going out with friends…
By February this year things had gone off at an unexpected tangent and downhill. Family were flying over, driving down, coming in shifts and helping out with stays in three different hospitals. We were aware of the virus, but the main defence was hand gel; how ridiculous that seems now. The main entrance of Southampton Hospital, where his major operation took place on 2nd March, was like an airport; twenty four hour Costa Coffee, shops, cafes and people, lots of people. The intensive care unit was a quiet little bubble away from all this; you had to phone from the waiting room to be let in, but that was the only restriction.
On two occasions we were called into a little room to talk to a doctor, but after a few days my husband was on a ward. In the background to our little lives hospitals were planning for the virus to get worse, suddenly he was transferred to our local hospital and we were wondering how this Coronavirus was going to pan out. Our physiotherapist daughter had already been organising the NHS and her brothers and now she made sure our house was ready, persuading the ‘social care team’ I would cope fine in my new role as carer. I don’t drive, but I’m fit, we have great local shops, family would continue to come and stay at regular intervals and friends would be dropping in for coffee and jigsaws, what could possibly go wrong? The reluctance to let my husband go suddenly changed to a flurry of Covid 19 bed emptying activity on his ward.
At home things went as planned, some friends were already voluntarily isolating, but others came round for coffee. Our last family visitors left the evening after Mothering Sunday, by the time they were on their way home, on Monday 23rd March, the Prime Minister was telling everyone to stay home and close everything. We were already confined to home, now everybody would be at home; though I certainly wouldn’t have wished for a world wide pandemic just to feel we were all in the same boat.
My husband soon got The Letter – the most vulnerable people to stay at home for twelve weeks; I was now a shielder as well as a carer. By now we all understood the theory, it was a duty for everyone not to get Covid 19. My humble Covid Challenge, my contribution to the NHS was to keep my husband out of hospital and not get the virus myself as I am his sole carer.
So here we are in our cosy little bubble, thanks to our kind next door neighbours and the local greengrocers, butcher and Co Op doing home deliveries, I don’t go near any shops. I only venture out for a walk and to our doctors’ little pharmacy; one customer at a time, the staff wear masks and shields. The amazingly fine weather and the garden have given lockdown a holiday feel. As a retired couple with lots of interests we’re used to having relaxing days at home; now every day is a relaxing day at home. Real carers are people who look after severely disabled children or partners or parents with dementia, for year after year. Apart from having to think what to have for dinner and cook every single day, life is easy and there is time for gardening, writing and blogging.
In the Game of Life, Covid 19 Edition, over 35,000 people have died in the UK.
We have been given another extra turn and got some bonus points; loved ones and friends have been safe so far. Lucky to have a garden, not have to worry about losing a job or trying to home school children. Lucky that what happened to us came just before lockdown.
Have you written a Covid Chronicle or kept a journal?
The Game of Life is being played on the biggest scale ever with the worldwide virus scare. A game of chance with good odds for most of us, but with the rules being made up as we go along and every team making up their own rules, or so we might think… But it is viruses that make the rules, mutating at will; do they have an agenda? It is not hard to believe that Gaia has her hand in this, as travelling and normal life grind to a halt it must be good for the environment and non human creatures.
Meanwhile, if we zoom in like Google Maps to my family, even without the virus there has been drama. Our daughter has clocked up five different hospitals visited, with her younger son and father in hospital at the same time. Luckily the little one is fine. After a year and more of being well, Cyberspouse’s condition went off at an unexpected tangent and he has been in three different hospitals. Now I am officially a carer, having persuaded the discharge nurse and social care team I would manage – not mentioning that once I was back on my computer writing I would probably forget all about him! Luckily our daughter is a physiotherapist and has been organising us, her brothers and the NHS. Our aim was to get him out of hospital before it went into virus lockdown!
Blogging and writing was put on hold and once my scheduled blogs ran out it was quite liberating to know there was no chance of writing anything or catching up with fellow bloggers. But what a fund of material I have acquired in my head; a blog about the NHS and patients and visitors…
Latest virus update… Cyberson 1 now back in the USA has to stay home as he has been to the UK within the last 14 days. Team H are now self quarantining as our son-in-law came home from work with a sore throat and cough. Cyberson 2 can’t come down as his boss’s wife has symptoms. We are lucky all the family got together before the virus kicked in. How have you and yours been affected by the virus?
Warning: Do you dare to play the game of life? If you don’t want to read about illness and death or you dislike dark humour please avoid this blog, but I hope you will continue to visit my Wednesday, Friday, Saturday and Sunday blogs. Do not seek professional advice here either!
The Game of Life continues with no rules; it is over a year since the Game of Life started play on Tidalscribe. Worldwide people continue to be out of the game in war and disasters – natural and man-made; even the blame for natural disasters is now laid at the feet of humans. What happens to individuals in their little lives means nothing in the bigger picture, but the bigger picture is too much for us to take in so we talk about people we know.
A storm, a phone call and an early Christmas card.
We had a big storm recently, not a typhoon, hurricane or flood. Out of all the people in Dorset the roll of the dice went against one older lady, a tree was blown on top of her car.
When my old school friend phoned one evening with ‘sad news’ it wasn’t hard to guess her elderly mother had died, but it had still come as a shock to her because of the circumstances and because she had been her mother’s carer for a very long time.
Just back from our little holiday in Wales, Cyberspouse browsed through the mail and opened a Christmas card. Without actually looking to see who the card was from he started reading the brief type written slip inside describing the peaceful death at home on Good Friday of someone’s husband. From the name I guessed, we only exchanged Christmas cards, but our mothers had been best friends when we were in infant school. Chemotherapy had not worked, but he had time to see family and another grandson born, loved ones take comfort from targets achieved.
How many things can humans have fixed?
How many extra years does modern medicine give you? Cyberspouse met up with a friend he hadn’t seen for a while and was surprised to see him looking so well. Over a period of time he has had his rib cage opened up, heart surgery, cancer, other multiple conditions, plus various parts removed.
‘Eighteen months at the most I was told’
Wellseventeen, it was a month ago they told you that.
Wilko Johnson is an ageing pop star I knew little about, but a few years ago I heard him talking on the radio about being diagnosed with terminal cancer; he just made me laugh, after always suffering from bouts of depression he was feeling really cheerful, his calm acceptance of his imminent demise apparently impressed his friends and fans. He carried on with life without bothering about treatment. After doing farewell tours, circumstances led him to an oncologist who offered to operate with a 15% chance of survival. He survived.
Cyberspouse’s most recent scan showed everything still stable, nothing had changed since his previous scan and six months of no treatment, when we went in to see the oncologist she said ‘Oh, you’re looking well!’. Life carries on as normal; we’ve had trips away most months, north, east and west. There are no magic answers to cancer; if you are feeling okay you may as well get on with life and not waste time searching for ‘key lifestyles’ and new cures ‘overseas’. If a diet of raw vegetables doesn’t appeal to you eat what you like. The Macmillan nurse said at the start of all this, keep moving and feed yourself up, words taken to heart by Cyberspouse. We don’t look things up, but I find Quora quite interesting or amusing when it pops up.
Quora is a question-and-answer website where questions are asked, answered, and edited by Internet users, either factually or in the form of opinion.
Cancer is understandably a popular topic and most of the answers sensible. There is no miracle cure that someone somewhere in the world is hiding so they can make money. If there were, the rich and powerful would not succumb like the rest of us. It is not one disease, cancerous cells can pop up anywhere and move round the body to anywhere, cells have their own DNA and this can alter; every patient is different as to how illness and treatment will affect them. Cancer is not a battle to be fought, if it was the young with everything to fight for would not die.
People you don’t see, in laboratories, are busy researching, adding to the multitude of different chemotherapies and other treatments – adding new chance cards to the Game of Life.
His wife was glaring at him and mouthing something.
‘Oh… yes, I’ve got leukaemia…’
‘..apparently one of the volunteers at the centre has had to leave, she’s seriously ill.’
‘Oh Dear… what’s the matter with her?’
‘Non Hodgkins Lymphoma.’
A moment’s silence… ‘Oh… that’s me.’
Cyberspouse has had two visits to the oncologist since chemotherapy. One scan showing everything stable and blood tests ‘all in the black’. Another scan is booked before the next check up. Check up means just a chat ‘How are you?’ I don’t know what happens to other patients, but I guess the oncologist has checked results and can see if you are looking fine or not and judge which aches and pains have any significance.
Life goes on normally with DIY, trips to the rubbish tip, outings and mini breaks and more planned and it’s easy to forget there is anything wrong.
When the Game of Life goes wrong.
There came news recently that a cousin had committed suicide; something that has never happened in our family before, as far as I know. But shock was not the first reaction because this was a cousin we hardly knew, he had cut himself off from his family, his sister tried to keep up some form of contact, obviously enough to hear the terrible news. I know nothing of his life abroad, what was it that led him to take his life? The only further details to emerge are that his sister is now very angry at what happened before his death. My aunt and uncle are dead, spared this final disappointment with their son’s life. I wonder what people in his life have been left behind.
The saddest news this week is the senseless murder of a young policeman, Andrew Harper. The fact he was married only a month ago and was due to go on honeymoon soon has touched everybody and kept his death in the national news. Anyone can imagine what his family are going through and any police family would be chilled by the reminder that no police officer knows what each shift might hold.
Cyberspouse did his thirty years in the Metropolitan Police, he and his colleagues got their pensions and time to enjoy a new life. Andrew Harper will never have sons and grandsons. If the young get incurably ill it is terrible, but sadly that is the unfairness of life and we have to accept it, but no one has the right to take another life before their allotted time.