I can’t abide reviews of the year, any year and especially not the Terrible Twenties! Sport, politics, war, disaster or disease, I don’t want to see or hear reviews; it started days before the chimes and fireworks …
Revitalizing, reviving and rambling is what we need. You can ramble around having exercise or you can ramble on when you are blogging…
A BOXING DAY RAMBLE – FOR ONE DAY THE WEATHER WAS PERFECT and I was going to write a blog about it... but
I haven’t completely left 2021 behind; Christmas was delayed for three days Chez Tidalscribe, so I am a bit late arriving in 2022 and I have only just started reading the book for tomorrow’s Zoom book club.
Two days later… well it turned out only one person in the group had read the book and the lady who runs the group had not even opened it. Everyone cited Christmas as the reason.
Four more Christmas cards just arrived, one of which I will definitely have to answer with a review resume an update on 2021. Just when you think the Christmas card nightmare is over… remember those days in the December twenties when you realise you have not sent out cards early to tell old friends and relatives you have moved, got cancer, been widowed, made redundant… or you realise you did not reply to those old friends and relatives who wrote last January to apologise for not sending a Christmas card because they had been widowed, busy moving house, got a cancer diagnosis, lost their dog …
Covid has given us a whole new string of excuses for not sending cards, or more importantly getting out of actually seeing anybody next year…
We must get together when things settle down.
Would love to take you up on your invitation to come up and stay, but I’m working 24/7 at the hospital.
Just tested positive so New Year’s party is cancelled.
I’ll send you the link for the Zoom funeral, such a shame you can’t come, Dad would have loved a good turn out…
CHRISTMAS EVE – THAT GREAT BRITISH TRADITION; A CLIFF TOP WALK IN THE RAIN FOLLOWED BY MULLED WINE AND LUNCH AT THE BEACH HUT.
THE OTHER GREAT CHRISTMAS EVE TRADITION IS THE MORNING PHONE CALL… WHICH STARTS WITH ‘BAD NEWS..’ AMIDST ALL THE COVID TESTING, BOOSTING AND WAITING TO BE TRICKED BY THE PM INTO A LAST MINUTE LOCKDOWN, THERE ARE OTHER WINTER LURGIES LURKING. NOW WE ARE DEFERRING CHRISTMAS FOR A FEW DAYS UNTIL TEAM H HAVE NEGATIVE PCR RESULTS AND FEEL BETTER.
ELVES ALWAYS ENJOY CHRISTMAS
BUT SOME GET A BIT TIRED OF THEIR COMPANY…
IT’S STILL RAINING BUT WE’VE HAD A GOOD DAY, GOOD LUNCH, FACETIMED, WATCHED ‘ARTHUR CHRISTMAS’ AND EVERYBODY GOT MORE LEGO…
I HOPE YOU ALL HAD A PLEASANT DAY WHATEVER YOU PLANNED OR HAD TO REARRANGE…
Why Omicron, what happened to the other letters before that. I keep forgetting what it’s called… Omicrom, onicrom, Covicrom… What is your favourite Greek letter? I rather like Epsilon.
For ordinary folk everyday chit chat is banal, but the life blood of family, friends and hum drum jobs; the antidote to World Crisis, disasters and politics. It means nothing to outsiders and sounds very dreary.
Six boxes short on the crisps and they haven’t delivered the sandwiches!
Hardly a Global Crisis, but to the three workers on the team it is a big drama.
I saw Phil when I was in Aldis!
A remark full of significance when you relate your shopping trip to your friend, in fact you messaged her before you even left the store.
Our regular banal conversations are now littered with remarks that meant nothing two years ago, testing positive would probably have referred to pregnancy.
Sharon’s tested positive. Have you had your results yet? Evie’s going back to school on Friday. No she can’t think where she got it from and her friend had to come and collect the dog.
Covid, Christmas, Chemotherapy and restricted lives bring vivid dreams as our brains take themselves on holiday. Last night I dreamt I went to Manderley camera club in the church hall – in my dressing gown and pyjamas. Next minute a fellow blogger ( who doesn’t even blog about cooking ) was concocting the most delicious recipe, deep frying rich wraps of hidden delights. The food fantasy is understandable when chemo and sore tongue make food tasteless or vile. I am obviously missing an ideal opportunity to ascend to a higher spiritual state in which food is no longer important, or even vital. I do not have what it takes to go into the wilderness and live on leaves, but at least I have found that out now before going up a mountain or into the desert. The fact that millions of people do not have enough food does not stop me being filled with lowly envy when people drop remarks like
‘No, we’re fine, we stopped off at MacDonalds on the way.’
I hardly ever have MacDonald’s and have certainly never ordered a cooked breakfast from Tesco to be delivered to my door, but these are now things on my wish list for 2022. I have learnt a few things though. Expensive and fad diets are pointless, if you eat less you lose weight. If you want to try this without chemo, just picture honestly what you have eaten and drunk at the end of each day and cut out the sneaky biscuits, fizzy drinks, crisps, chocolate ( insert your favourite treats ) the next day. I do now have an insight into young children at meal times, or people with eating disorders; putting something into your mouth when you have no idea what it will taste like or cannot bear the idea of anything passing your lips. We glibly tell our children they are going to like strange textures and flavours with no notion what their tongue is telling their brain.
Your body in good health is a marvellous machine that repairs itself, with your skin and nerves protecting you from the outside world and your internal organs function efficiently without having to be programmed by a computer. You do not need expensive moisturisers or exotic food supplements. But there are the odd benefits to chemo interfering with your system. After decades of barefoot and sandal wear resulting in as many decades of pumicing and moisturising my heels ( in fairness to our bodies, the feet naturally grow tough soles to walk barefoot, much healthier than wearing shoes ) my heels just fell off, revealing the feet I had not had since I was baby…
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.
No one would know I have lost my sense of taste…
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.
May not be accurate representation of a Covid vaccination…
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.
Just because your relatives are cabbages does not mean you can’t be beautiful.
For the second summer in a row I haven’t been far afield so I have taken endless pictures of flowers and tried a few new things like the mini wildflower meadow thanks to free packets of seeds from 38degrees and buzzy bee charities…and not mowing part of the ‘lawn’.
But every time we had a rainy spell it was mushrooms that grewor were they toadstools or fungii…
But flowers are still popping up in the meadow.
The tomatoes were a great success, both of them.
Mr. Nosey Potato got left behind at my house then there was another lockdown so I planted him in a pot…
But someone didn’t want to eat Mr. Nosey’s children.
This was my best shot of the Bournemouth Air Festival – I missed the wing walkers flying over the back garden and a Red Arrow flying over the roof…
When Christmas was cancelled I left the Chreasterbirthdaymas tree in the front garden and tied a ribbon on for each day of lockdown. This month it is a Breastmas treeas October is Breast Cancer Awareness month.
This is the newest garden development Chez Tidalscribe, a wheelie bin store with deluxe plant shelf and self filling watering can. Thanks to Strobe Interiors. And it’s that time of year when gardeners can cheat and buy lots of cyclamen at the greengrocers ( and just about everywhere ) for instant colour.
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 earthI 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…
It turns out to be true. Week Three of chemotherapy you feel back to normal. Perhaps even halfway through Week Two; watering the garden and a little light dead heading turned into a pile of branches in the middle of the lawn grass as I attacked the buddleia ( common or garden variety, well known for colonising railway banks and derelict buildings ) that was taking over the garden.
Even going over to the letter box seemed an adventure, then a walk round the block to confirm I was back in the land of the living…walk to a friend’s house and by Wednesday it was time for a proper walk across the River Stour to meet some writer friends for coffee then back by ferry… 6Km circular walk according to my phone. The weather has been hot and sunny so come along…
Times and Tides of a Beachwriter 