Idle Thoughts of a Tidalscribe

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…

Tuesday Tale – Questioning

Emelda Forsyte had little experience of hospitals until her diagnosis, so she looked upon her first chemotherapy session as an ideal opportunity for research for her next novel. Her diagnosis was treatable and curable, positive and hopeful, but she would give her heroine, Jolie Jansen, a very likely terminal prognosis. It would add a cutting edge to the fifteenth book in the series.

Jolie had not been nervous about her first chemotherapy session until the lady in the reclining chair opposite died.

‘Good morning.’ A nurse’s voice startled her out of the opening chapter forming in her head. What did that nurse say her name was? They all looked the same in their uniforms and masks.

‘Name and date of birth please.’

‘Emelda Forsyte, 5th July 1964.’

Even with a mask on the nurse looked very puzzled.

‘Oh sorry , I must have the wrong patient. I have you down as Jane Brown.’

‘No, I apologise, Emelda Forsyte is my nom de plume.

The nurse looked even more confused.

‘I’m a writer, you know, my private detective novels, Jolie Janson, third series on ITV Sunday Drama set in the wilds of Bedfordshire.’

The top half of the nurse’s face still looked blank.

‘Ah, I’m not into all that crime stuff… so you are Jane Brown and your date of birth is?’

Emelda looked at the patients in the other three bays to check if they might be listening in, no doubt they were if they had heard there was a famous author on the ward. She removed her mask and mouthed something.

‘Sorry, I didn’t hear.’

‘10th May 1949’ Emelda whispered.

Emelda watched carefully as a needle was inserted into her hand, more than the slight prick she was told to expect, but hey, Jolie would not flinch, that was nothing compared to the injuries she had experienced. At least the blood being drawn out looked a good colour.

‘I suppose even those tiny phials of blood would be enough to clone me’ Emelda joked.

‘Oh no, they just go to the lab for testing, make sure you are well.’

‘Hmm, but if someone stole them from the lab I could be cloned.’

The nurse chose not to hear and slipped away.

In a short while she reappeared with a bag for the drip and another nurse who asked her name and date of birth.

‘I already answered that.’

‘We double check each time, just making sure the right patient is getting the right drug. This has just come up from the pharmacy with your name and details on it.’

‘That is reassuring, but have you ever had a rogue pharmacist, I mean there could be a fatal dose or a deadly poison in that bag.’

The two nurses exchanged glances.

‘Now dear, it’s quite natural to be nervous your first time, but you are in very safe hands, no need to worry.’

I am not nervous, just thinking about research for my next novel.

‘Okay so let’s go through the prescriptions you have to take home. Now these injections must go in the fridge and on Friday the district nurse will start coming round to give you one injection each day.’

‘District nurses, do they still have them, she won’t be in uniform will she?’

‘Could be a he and they will be in uniform and PPE, you will be perfectly safe.’

All Emelda was worried about was the neighbours seeing, district nurses were what old people had visiting them. Hopefully they would have to park round the corner and not draw any attention. Then she had an idea.

‘How would I know they were real, could be an assassin in disguise with a lethal injection, like that chap who pretended to be doing Covid vaccinations.’

‘Just ring your surgery if you have any worries…’

Emelda examined the contents of the paper bag from the pharmacy and withdrew a box of tablets to read the instructions.

‘Read the leaflet inside carefully when you get home, you must take those tablets as instructed.’

‘So what would happen if you made a mistake, or your husband or daughter were in charge and intentionally gave you too many… or perhaps a wife might look at her husband lying in a drunken stupor and stick all those needles in him at once.’

‘Any mistakes and you must ring the hot line straight away or even dial 999. Who is at home with you?’

‘Oh I live alone, ditched Mr. Brown years ago and became Emelda Forsyte.

‘I am sure you will manage your tablets fine, just remember to lock all your medication out of reach of you have grandchildren visiting.’

‘None of those thank God, humans under the age of twelve are to be avoided at all costs.’

Emelda was glad to be up and feeling fine, calling for a taxi and bidding farewell to the nurses who looked relieved to see her leaving.

‘Now take it easy and be prepared for the effects to kick in tomorrow.’

‘Oh I shall be fine, see you all in three weeks’ time.’

Before Emelda arrived back at the main entrance she was surprised to be stopped by a man in a suit who quickly produced a warrant card.

‘Mrs. Jane Brown?’

‘You would probably know me better as Emelda Forsyte, crime writer, is that why you stopped me?’

‘Never heard of her, I am only interested in Jane Brown; security gave us a call, your nurse rang the patient alert hot line about some inappropriate conversations and questions. Can you confirm you have just had a session of chemotherapy?’

‘Yes, it went very well, lovely staff, I don’t understand what you are saying.’

‘Hospitals have to be very careful that medication is not taken away to be misused, if we could go somewhere private to have a little discussion?’

‘No, you misunderstand, I was merely doing research, anyway I must go, taxi arriving any minute.’

‘I could invite you to come to the police station to help with our enquiries.’

For a moment Emelda was most offended, more because he had not recognised her as a famous crime writer than that he might think her a criminal. But this could be a research opportunity. Jolie Janson had more than her fair share of run ins with Bedfordshire Police, but Emelda had never actually been inside a police station…

Gaia Has Chemotherapy

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.

Hot Line

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.

Chemo Club

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…

Needles

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.

May not be accurate representation of Tidalscribe

UK Stylish Chemo Hats And Headwear For Cancer Patients. (annabandana.co.uk)https://www.annabandana.co.uk/

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…

Friday Flash Fiction Five Hundred – Harry H

 ‘…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…  

Week Three

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

We missed the Tuesday bargain…

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In The Yellow Zone

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…

In The Pink Zone

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.

https://breastcancernow.org/