I can’t believe I’ve been dead this long, not that I know how long it’s been, that’s the trouble with eternity; it just seems a long time as I’m still waiting to register. Not sure if you will get this ether mail, I haven’t grasped the technology yet. I would not have promised to keep in touch if I knew how difficult it was going to be.
I can understand why they are so busy, more people than ever to process, what with the population on the earth plane increasing exponentially. Haven’t seen anyone I know yet, I was a bit miffed there was nobody to meet me, perhaps that’s why it took me a while to realise I was dead, which also explains why I am only just getting in touch.
Nobody else knows what’s going on either, lot of milling around, I gather the trauma cases get dealt with first which is fair enough. Can’t actually remember what I did die of, so can’t have been anything violent. When I say I haven’t seen anyone I know, I am not sure what they will look like. I can’t see what I look like, no mirrors. Hard to describe what people look like this side. Those we see in pairs or groups must have come over together, we’re all newbies, so not likely to meet friends and family till after we’ve registered. Right old mix we are too, from all over the earth plane; obviously only one portal. That makes us all equal, thought that would please you and language is no barrier as there is no language, just thought reading, a real babble, lucky we don’t feel pain as it would give me a right headache, interesting though.
Have to finish off now, looks like something is happening. Not sure what else to say… how are you, what you been doing, I can’t seem to remember what you did like doing. In fact I’m finding it hard to remember what you looked like let alone what our hou… ho.. what was the word? Where did we li.. where did I l…
I recently had a revelation which will simplify our understanding of the human brain. Reading about yet another celebrity relieved to get a diagnosis of autism in their fifties, or to discover they are on a spectrum of some sort, they report that this explained why they always felt different. But aren’t we all different? Whether you are a psychiatrist or a brain surgeon, nobody understands how the brain works, how that grey jelly holds a universe of knowledge and creativity…
‘A synapse is a structure that permits a neuron (or nerve cell) to pass an electrical or chemical signal to another neuron or to the target effector cell. Synapses are essential to the transmission of nervous impulses from one neuron to another.’
So where does that electricity come from, how did it get into your brain, charged up by your mother’s solar powered battery when you were in the womb?
Enough of scientific talk. The only term you need to know is neuro diverse, it covers everything. The human brain is so amazing it would be strange if it didn’t work in many diverse ways, no one is wrong, just different.
Most of us are not as clever as we think we are. We know that humans are super intelligent because we build cities and space stations and create sublime art and music. Alas, most of us could not even build a garden shed or write a knitting pattern ( the original binary system ) let alone create a computer. But we still have the capacity to find our way round a big city or experience the joys of culture.
When experts are inventing new syndromes they are more interested in our interactions with each other and our talents only come into the equation when everyone assumes autistic people must be brilliant at ‘Something’.
A person who identifies as autistic may feel unable to cope with parties or too much stimulus of noise or lights, but have a wonderfully heightened awareness of music or nature that passes others by. Of course we will never know because we don’t know what others see, hear or feel and if we are experiencing the same sensations. We don’t even know what is mind and what is brain and what is ‘mental health’. I cringe when I hear people say ‘Then I had to leave work because I had mental health.’ Noo , if you had mental health you would be fine…
If you are in the fortunate position of understanding your own mind and everyone else’s, let us know. In the meantime the rest of us have a good standby to cover work and social life.
‘I’m Neuro Diverse.’
‘Oh, so sorry, we’ll move your office desk to a different position and give you a bigger computer screen.’
‘You must come to our special quiet screening of the film.’
‘Would you like someone to accompany you to your hospital appointment?’
For plenty of neuro diversity, why not read one of my books?
Try out the latest Windows 12 Programme here and see how you get on…
For photos of all sorts pop over to visit my picture gallery.
As COP 26 draws to a close, or not ( at the time of typing it officially closed yesterday, but they are still talking ) we wonder what treatment Gaia will undergo next, another round of chemotherapy?
With my fourth round of chemo, a different drug with different side effects, it dawned on me how much chemotherapy patients have in common with Gaia. Like us she is infused with poisons and chemicals that go against her normal healthy, natural lifestyle. One bizarre effect was my face and backs of my hands looking and feeling sunburnt, symbolic of the raging wildfires that Gaia suffers.
Chemotherapy kills fast growing cells, healthy ones as well as cancerous. A sore mouth is proof how efficient your body normally is at keeping the delicate lining of your mouth healthy. We regularly assault our mouth with crunchy toast, sharp potato chips, barbequed ribs, hot spices and throat searing whisky. It is amazing how quickly your mouth returns to normal in the week before the next round of chemotherapy. If we stopped Gaia’s chemo, how quickly would her healthy cells return to normal?
When I had my phone consultation with the oncologist he said ‘How are you?’ and I replied that I had a list… He decided I should have a 25% reduction for my final two rounds, not because all food tastes disgusting and my hands look like a zombie movie, but because of peripheral neuropathy in my hands. Lots of conditions can cause this tingling, pain and numbness, but so can chemotherapy drugs, sometimes permanently. I wonder if COP26 will result in an agreement to a 25% reduction in Gaia’s chemotherapy dose?
What I have learnt so far.
Losing your hair is nothing, losing your normal taste is far worse. If we are lucky enough to have food to eat it is a civilised pleasure and one of the Covid Comforts.
For the normally healthy person Chemo is a little insight into the world of chronic health conditions. Fatigue in long Covid, loss of taste in lots of Covid cases, the wrecking of the immune system that the early AIDs patients suffered and the nerve damage suffered by conditions such as multiple sclerosis.
You can have Ibuprofen and paracetamol at the same time! But not if your doctor has told you Not to have Ibuprofen.
Baby toothpaste is excellent if you have a sore mouth.
Pamper parties on Zoom are a real thing. The hostess sends a box of tiny sample tubs and you only have to provide a bowl of warm water. We all tried each sample out together and with the hostess not actually being present there is no pressure to buy. Having wondered what I should wear and which Hannah Bandanna scarf to choose, it turned out we didn’t need to dress up for this party; a couple of sisters were lounging, tucked up under their throws as many of us do for a cosy night in with the television. It occurred to me that some people in Covid isolation might join in the party just for the company with no intention of buying. The lotions and potions were lovely.. and expensive, but I had already had some as a birthday present so I knew they were good. As soon as my face started cracking up I was on line ordering my organic repair kit.
I am lucky my doctors’ surgery is one of the local centres for vaccination. I queued up with lots of others one Saturday for our flu vaccine, everyone semi dressed with arm ready, in the front door and out the back door in seconds. In the meantime The Bournemouth East
collective Collaborative Primary Care Network ( who makes these names up? ), which I didn’t know existed, took all calls about Covid jabs and were very helpful as I had to have the jab in Week 3 when my immunity was back on track. On Wednesday evening there was no queue and we all went in the back door of the surgery and came out the front door. It was very quick, until we realised we had to spend fifteen minutes sitting in the waiting room afterwards, hence the reversal of doors. Our exit time was written at the top of our leaflet on possible side effects and a volunteer stated the time every five minutes, no chance of an early escape! Everybody is having Pfizer and the jab is the same whether it’s a booster or primary 3 for anyone on chemo or immunocompromised – another new term most of us have learnt during Covid – we get a booster in six months. The volunteer asked us if we would like a sticker, I was the only one to accept. One lady was adamant that the minute sticker could provoke Antivaxers, as if there were hordes of Antivaxers protesting outside…
Funnily enough I had no side effects at all from the vaccine. I know plenty of people do, but they are happy to put up with it because Covid is not going away. DO get your vaccine or booster, or whatever you are due for.
If you enjoy medical mysteries you will find plenty in this novel. Enjoy some winter escapism… have a peep inside.
When we had our beginners’ chemotherapy group chat I was sure I would not be calling the Hot Line, despite the long list of reasons we were given for calling it. I don’t like making phone calls or bothering people. First reason is if your temperature is above 37.5 degrees Celsius ( 99.5 Fahrenheit ) or below 36. A high temperature may be sign of an infection and if you have just had your immunity zapped this can lead to the frightening sounding Neutropenic Sepsis. My expensive Boots thermometer handily beeps once for normal range, three times for 37.5 or over and goes berserk if you hit 38 degrees.
The first time I rang the hot line, early on a Sunday evening, the nurse asked me lots of questions and I answered No to all of them. I thought I had got away with it, then she said ‘I’ll just chat to the doctor and call you back.’
She rang back and said ‘Come straight to Accident and Emergency and bring an overnight bag. Our team are on till eight o’clock and we’ll meet you there to do emergency blood tests.’
WHAT, I was getting a whole team to myself?
She soon rang back to tell me to come straight to the oncology ward. My son had been about to serve up dinner…
Blood tests are to check for infection and you have to wait for results. An injection of antibiotics straight away, just in case and a thorough check up with the doctor who said I looked well. Because it was only seven days since my chemotherapy and week two is when your immunity is at its worst, they had decided to call me in. If there is an infection it means an overnight stay on an antibiotics drip. Yes you guessed, my blood tests were all fine. I asked how often I should take my temperature, they said once a day was fine.
I kept an overnight bag ready after that and it wasn’t long before I had to call again when my temperature was 38degrees. ‘Can someone bring you in?’
I looked out of the window and the road was completely deserted. Neighbours and friends are always saying ‘Don’t forget if you need any help, lifts etc’ but of course you don’t actually know what everyone is doing on the spur of the moment… working from home, but probably doing a conference call to New York… It occurred to me that I could just call a taxi (memories of elderly relatives saying ‘oh yes, our taxis are very good’ ).
They are very good, even though a robot answered. It knew my address, creepy, I have only used them a few times ever. We soon established where I was going, the fare and then the robot said it would be there in four minutes – the taxi not the robot. Frantic dash to lock up the house and get ready. Perhaps the fact that there are always several of the company taxis parked up in a quiet road round the corner helped.
This time I had missed my lunch, but I did get a sandwich, luckily as I was there all afternoon. Fortunately the bloods were fine again and all that was left to do was a urine sample, with complicated instructions involving a bowl and a cardboard bed pan in the spacious disabled toilet I was sharing with two men in our bay. But I was getting off lightly as I heard a nurse saying to a chap in the corridor ‘Wee in the bowl and the poo goes in the paper bag.’
I was relieved to be going home, especially as I had forgotten to put my Kindle or any book in my overnight bag, that would have been a nightmare. It was now 5.30pm, a call for a taxi produced a message saying there was a forty five minute delay, so as I was feeling fine and they said I was fine I just crossed the road to the bus stop.
My third call to the hot line was for a tender spot on my upper chemotherapy arm and I asked if it could be blood clot, the nurse said it was just a bit of inflammation. I should have rung back again sooner, but several days later I spent the afternoon at the hospital. I was in a bay with three other ladies, the eldest of whom looked very grumpy. Blood was taken, but when the doctor came she was sure it was a blood clot, not an infection and I needed an ultrasound, but she couldn’t book me in till 8am tomorrow.
Luckily, after a while there was a flurry of activity and a nurse came to gather several of us to go down to ultrasound. Grumpy Lady suddenly piped up and said ‘I’ve been waiting seven hours for my kidney scan.’ No wonder she had looked so miserable.
It was a peripheral blood clot, not serious like deep vein thrombosis. Back on the ward I had the first of two months of blood thinning injections. I administered it myself to prove I would be able to do them at home. As I was getting ready to go a nurse came to Grumpy Lady and told her she was ready to take her down to the ward. She looked surprised as no one had told her she was staying in overnight.
She had done it, she really had done it, no one believed she would, but here she was on her first climate protest and she was the first of the group to turn up. It had been easier than expected, hardly any traffic and the few vehicles that passed had taken no notice of her. Come to think of it, it had ben a while since any vehicles passed, it should be getting busy by now and none of the others had turned up. She shifted awkwardly, having both hands glued to the motorway was not conducive to comfort. As she eased her hips a few degrees her phone slipped out of her pocket. On the screen the opening words of a message lit up…
Just to confirm you have all heard about massive pile up on M25, Junctions 24-26 closed to all traffic, protest to take place at J29, don’t forg…
Yesterday morning I had session Three of chemotherapy and the cannula went straight in, all positives, so I wanted to do a quick blog. The only hiccup was something going on in the hospital pharmacy and they neglected to tell any of the staff on the ward that there would be delays so they could phone us all to come in later. We all had to wait for our drugs. But the four of us were so busy chatting from our socially distanced chairs that time flew. Three ladies with more problems than me and all different cancers ( though I did have the trump card of being widowed ) and great senses of humour. We talked about everything including the after life. I am part of a real club! And I should add that we all agreed the medical staff are great.
How did you all manage without Facebook etc yesterday! Of course I thought it was technical problems Chez Tidalscribe till I tuned in to that much older medium the radio and The News!
It is a good while since I was working on a novel, with all that’s been happening, though I have never stopped writing short stories. I keep
wondering how on earth I managed to write forgetting that I have written five novels. I think Three Ages of Man remains my personal favourite, it is the second of the trilogy, but can also be read as a stand alone novel. It is about ordinary folk, but they do tend to have extraordinary experiences and you may find out how we are going to manage the planet and our health in two centuries’ time…
Week Three after my first chemotherapy session included an appointment to oncology outpatients to see a nurse. I told her how fit I was feeling and she reassured me the fatigue would get worse each time ( perhaps she said slightly worse ) and it was amazing how fitness levels dropped. She also said this was the week when hair thins… but she did order me mouth wash for next time; sore mouth and food tasting like mashed cardboard is probably the worst part. But like the fatigue it had suddenly got better and food tasted wonderful.
Sure enough, two days later my hair did start falling out; yay, no need to bother with the cold cap next time and I could get out my collection of colourful scarf/hat Chemo Chic wear, mostly ordered from Hannah Bandanna. It didn’t all fall out and I look rather like my grandmother, who even when I was young had very sparse wispy white hair. We just took this as being what a grandmother looked like, along with the large pink plastic whistling NHS hearing aid box that hung on her chest. Now I wonder if the hair loss was upsetting for her and was it the stress of bringing up three children while Granddad was away in World War Two ( away in Southport with the civil service, not on the front, he had already done that in WW1) or perhaps genetic, her sister was completely bald and hung her wig on the bed post overnight.
Sunday ‘chemo eve’ I went with my son to the beach hut and we had a swim in the sea. He probably got more than he bargained for; walking along the cliff top we met a couple I know, who hadn’t heard about the big BC. He has lung cancer so lots to chat about! On the way home, walking along the promenade, we met more friends at their beach hut and she recalled her bowel cancer treatment… You’re never alone with cancer!
In the ward on Monday was the young lady from last time with a full head of hair and about to put on the cold cap, proof it can work. The lady opposite me was sitting quite happily with her bald head uncovered. They were trying to put in her canula, while she repeated she didn’t usually have any trouble. At the chemo group chat the sister had said they can always find a vein. I gather putting a canula in is a nerve wracking rite of passage for medical students and I would certainly not like to try putting a needle into and not straight through a thin or even invisible vein.
Smugly I assumed mine would go smoothly, but my nurse also had trouble. I have only one arm they can use – the arm of the lymph node removal is apparently out of bounds for everything including doing blood pressure. Inevitably the desperate tapping of veins etc has to be performed with the patient looking on, which can’t help, but third time lucky. Meanwhile it was about fourth person lucky, a nursing assistant, who managed to get into the vein of the lady opposite.
The ‘red poison’ is put in slowly by syringe; it is so strong they must keep a close eye to make sure it doesn’t go into surrounding tissue. The second drug just goes in by drip and was only supposed to take fifteen minutes, but no sooner had I messaged my lift that I wouldn’t be long than the alarm beeped. The drip had come to a halt; much tapping of the tube and fiddling with the box the tubes feed through between the bag and the arm. In the end the nurse removed the yards of plastic tube, dumped it all in the bin and started with a new length of tube; an idea I had been tempted to suggest myself. All was well until just two minutes left when it stopped again, luckily she was able to restart.
Soon I was ready with my bag of prescriptions to take home, the large bottle of mouth wash making it deceptively heavy. I followed the WAY OUT signs, but luckily paused at the entrance to rearrange my stuff and glancing in the prescription bag realised the seven day course of injections ( which stimulate white cell growth ) was missing. The centre is actually in temporary accommodation in a large ward while the regular place is being upgraded; I had great difficulty finding my way back through the maze of desks, little rooms and other bays till I found Bay Three. My needles were still in their fridge.
At home three days later I was waiting for the district nurse to come and do my first injection, they can call any time between 8am and 5pm, but I had this funny feeling the hospital may not have contacted them and phoned up before noon to make sure. No they did not have me down and did I have the prescription form? NO, I had not thought to look in the bag and check. They cannot do injections without the oncologist’s prescription form on which they have to stick a tiny label peeled with difficulty from the syringe and write the date. What number to ring? After searching through my bundles of information I had no idea, but actually phoning the main hospital number and working through the options is the easiest approach and I did end up in the right place. The nurse said notification should have ‘gone to the hub’ and then out to the district nurse. I was home alone and no I couldn’t send anyone to fetch the forgotten prescription. Fortunately she agreed to phone the district nurse and email them the form… I wasn’t totally convinced and had almost given up hope when the nurse turned up at 4.55pm.
Now my aim was to learn to do injections myself, it looked quite easy. In the stomach is not as bad as it sounds, subcutaneous, under the skin, just a matter of taking a fold of
fat skin. I’m sure there are many people out there used to doing injections on themselves for various conditions, but this was my first time. The next day I did it under supervision, no problems, yes I would manage fine by myself tomorrow.
The nurse said the cap on the needle point is very stiff so you have to grip tightly and pull hard. Next morning I did exactly that… the plunger came out and liquid sprayed into the air. I had broken it. I took out another syringe and made sure I gripped the right part, success. Perhaps I would keep quiet and not tell anyone about the broken one…
Everyone is worrying about transport; panic buying at petrol stations because of a shortage of petrol tank drivers, what alternative transport would you use…
Panic about empty shelves because of a shortage of HGV drivers; turns out the food does not appear in shops by magic, perhaps other means of delivery should be considered…
But it is no fun being a delivery driver; nowhere to park and rest in big cities…
…and poor facilities at driver stopovers…
They can only dream of better.
Why not continue to escape reality with one of my short story collections…