No more trips to the chemist to collect your prescriptions? No more standing in a queue while the beleaguered pharmacist looks for lost medicines and other customers collect paper sacks full of their repeat prescriptions? Yes, no more trying to say your address and post code, your voice muffled by the masks we are still wearing in a ‘health care setting’. I heard the other day that in future we will use our 3D printers, which we will all have by then, to print out our tablets, probably combining more than one drug. Leave your computer on overnight to calculate the exact dose to suit your body mass and genetic make up. These tablets will be far more efficient, your doctor or consultant will no longer have to guess a dose that will work, but not blast you with bad side effects. Of course there is always the possibility we patients might accidentally give our computer the wrong instructions…
One thing many of us probably know about breast cancer is that you have to take tablets for five years after your main treatment, probably tamoxifen which comes from Yew trees. Looking this up I was rather disappointed to discover that it is taken from the bark of the Pacific Yew from North America. I had always fondly imagined scientists at dead of night picking berries from ancient yews in English churchyards. The early Christians built their churches on Druid sites; the Druids planted Yews as they regarded them as sacred; proven right because the Yew held the magic of healing.
It turned out that I am prescribed Anastrozole and I can’t find any romantic or ancient origins for it. Like tamoxifen it is a hormone inhibitor to protect against the types of breast cancer that love oestrogen. This is a tiny tablet to take once a day and because oestrogen is good for your bones I also have to take a very big tablet twice a day called imaginatively Adcal – D3, full of calcium and vitamin D3! Luckily these big tablets are chewed.
On my final appointment with the oncologist he said five to seven years, funny, he said five years earlier on! Perhaps I will be on Anastrozole long enough to be printing out my own tablets. Every breast cancer patient is under the hospital for five years after the main treatment, with breast care nurses at the Ladybird Suite – at my hospital, presumably other hospitals have other cute names – who can be contacted any time.
With one in seven women getting breast cancer ( six in seven Not getting it! ) at some stage, the system seems to run on very efficiently, with charities like Breast Cancer Now providing a great deal of information and help, from leaflets at the hospital to phone and on line help always available.
Covid has not gone away by any means, but officially in England we are back to normal; yesterday was the second anniversary of the day we went into the first lockdown. I have had my end of treatment visit to the oncologist so officially I am back to normal. For all of us the past two years have been strange. Perhaps because it is spring, or because Ukraine makes us appreciate our mundane lives, but everything seems more vivid, interesting, exciting even. I haven’t been further than a walk round Poole after my hospital visit but every walk, every coffee stop is ‘an experience.’
But we do have to face the fact that our town centre shops were already in decline and life is going to be hard and drab for many people with the economic disaster of Covid and Ukraine. Shopping therapy is going to be a thing of the past, though there is still coffee…
Looking on the positive side people have made new on line friends, got to know their neighbours better and become more empathic, helping those who have been isolated and those whose financial struggles were made worse by Covid.
For those of us who have lost partners and loved ones we see the proof that life always does go on, returning more and more to our previous lives doesn’t seem right, but unless we move to a different place or go sailing round the world, it is almost inevitable and a comfort. Some parts of my life have been rejigged while others miraculously slot back into place. Our writing group has resumed in the library; our tutor and founder is now ninety, recovered from a broken hip and more on the ball than the rest of us!
A few weeks ago my friend was making coffee for the new monthly coffee morning at my local library – one of their activities to welcome real human beings back into the library. I went along for moral support, just as well as only two others turned up, both mature chaps who have just returned to England. We had a really interesting hour and it turned out one of the men, Mike, went to a writers’ group back in the USA. I told him about our weekly group and he turned up the next week and has really enjoyed his two sessions. Our tutor was glad to have someone else who also remembered the war ( WW2 ) for our new chap was born in 1935 and spent fifty years in the USA after he and his wife emigrated. He is adamant that he is back in England for his ‘last years’ ( he is very spritely so there could be a good few last years), despite leaving all his family behind; a story that is his to tell not mine, but he is obviously making new friends as well, with the philosophy that every day he is going to engage in conversation with a stranger. This week another new bloke turned up at writers’ group, invited along by Mike.
It has been a strange few weeks. I received an email from my old high school friend in Australia who I have not seen or heard from since we were teenagers at college; fifty years of having no idea how both our lives panned out. She is helping with a research project on founder members of the college and with some difficulty ( as with all the girls who had married and changed their names ) managed to track down this website and found my email address on the contact page; I think that is the first time someone has used the contact page! It was really interesting catching up, though I have no idea what she looks like now!
If you walk dogs, walk or cycle everywhere and work in your front garden, you see familiar faces and smile or chat. Since Covid people seem even more likely to engage, with the silent sub text ‘Isn’t it nice not to be wearing masks and be out and about?’
A lady often passes by on her bicycle with a sweet poodly dog attached alongside, ears flying in the wind. I can’t help but smile and she gives a cheery nod. The other day she was on foot as I arrived back at my front gate and stopped to admire my front garden. It is hardly worthy of Gardeners’ World, but has burst into colour with bulbs out and the addition of the ubiquitous primula to fill in gaps in my tubs.
‘Are you a friend of Carolyn?’
I was pretty sure I didn’t know a Carolyn.
‘Carolyn and Amos round the corner?’
‘No, I definitely don’t know a Carolyn and Amos.’
‘Oh, you would certainly remember if you did know them. You look like one of Carolyn’s friends.’
I am still pondering if I have met Carolyn and Amos, perhaps anonymous faces I pass by often. And did she mean I am a twin of a particular friend or just look like the sort of person who would be a friend of Carolyn’s? Has the lady with the bouncy auburn curly coated dog only been greeting me for several years because she thought I was a friend of Carolyn’s?
Do you feel your life is back to normal, have you made new friends or found old ones during Covid?
My last radiotherapy session was on Tuesday. On Monday there was a phone call from the radiotherapy department; I wondered if they were ringing to say there had been a terrible mistake that morning and I had been given ten times the right dose. Not just double; it’s more likely a decimal point or zero might get misplaced… actually they just wanted to ask if I would mind coming in later as the engineer was coming to fix the machine… hmm wonder if it WAS working properly in the morning?
It was rather sad saying farewell to the lovely staff, though on the previous Friday I thought I might stay there forever. I had breezed out of the main waiting room after my treatment, yay it’s the weekend ( Not that there was anything special happening at the weekend except not going to radiotherapy ) saying farewell to the chaps drinking water getting ready for their prostate treatment. I sauntered up the corridor only to find the double doors closed and locked. This had happened to me once before. That time I had been relieved to hear voices behind me; some of the staff were going for their coffee break and swiped a card on a box. This time there was not a soul in sight or sound.
I returned to the waiting room, but there was nobody on the desk. Who to ask, who to find? One can hardly go barging into treatment rooms, or disturb radiologists in the control room when their patient is being irradiated. I could only hover by the changing cubicles hoping to catch someone collecting their patient. Fortunately, from another set of double doors that said Staff Only emerged a chap in plain clothes, one of the numerous persons, with lanyards and ID cards to distinguish them from patients, who stride purposefully up and down corridors and stairs. I alerted him to my plight.
‘This always happens on Fridays when they test the fire alarms.’
He went into detail about magnetic doors as we marched up the corridor. As we reached the doors he said
‘Hmm, let’s hope this works.’
I had assumed it would. Luckily it did.
Meanwhile back to my last session… The third zap above my collar bone, targeting lymph nodes, has been the only one where I can look up and see the square screen through which invisible rays are emitted. Strange shutters above the glass move in and out, up and down, but it is usually quick. This time things seemed to come to a halt. I waited for the familiar buzz, wondering if the machine had broken down and when no one spoke over the intercom, fearing they had all gone home. I was tempted to move my arm as my shoulder felt sore and I began to imagine the horrors of the rack or crucifixion. Then the buzzing started.
I was given a help sheet to add to my collection. The effects of the accumulated radiation carry on for another couple of weeks, not that I had had any bad effects. I do now have a big square and a smaller square that look like sunburn. I had imagined the target areas being round. I was told to keep the area protected from the sun. ‘For how long?’ I asked. ‘Forever’ was the reply.
I was back in the Pink Zone for my Radiotherapy planning. Despite the long instructions in the letter for finding radiotherapy I was flummoxed when I found myself back in the familiar Oncology Outpatients. As it is on floor minus 2 and has a low ceiling I assumed this area was a dead end; unfortunate choice of words perhaps…
Luckily a lady in grey ( one of the health care assistants who pop up helpfully everywhere ) asked if I was lost and took me through a door that hadn’t been there before. Then she asked if I wanted Chesil, Furzey or Varian. I had no idea what she was talking about so produced my appointment letter ( always take your hospital letter with you ) and she took me to reception. I was soon given a gown and taken to get changed in a cubicle with the fatal words ‘Just come back to reception when you are ready’ assuming you are going to remember the way back…
I did find my way back and was soon in a room having a CT scan and lots of measurements taken. They give you four tiny tattoos as guide lines, apologising that they will be permanent. I am hardly likely to worry about that when I have a long scar and no breast, but at least they are acknowledging you still own your body. I asked for a butterfly tattoo, but they said they don’t have the artistic skills.
When I arrived for the start of my fifteen daily treatments ( weekends not included ) a couple of weeks later, I smugly assumed I knew where I was going, but at reception she asked if I was Chesil, Furzey or Varian. No idea, but she soon returned with the answer. I had to find Varian 2 and was directed to turn and follow and turn down several corridors. Every time you go through a double door a whole new hospital seems to unfold before your eyes…
Chesil and Furzey are local place names, but who, what or where was Varian? Lord Varian, the famous Dorset benefactor or Planet Varian from Star Trek… ‘Captain, the Varians are attacking.’
Varian is the manufacturer of the machines under which we patients lie in treatment rooms Varian 1 and 2. We arrive at the pleasant Varian waiting room from where we are called to the sub waiting room on the intercom. There we change into the gowns with three armholes which we are allowed to keep for all our sessions. From here you can see the lighted red warning signs when the radioactivity is active and staff must leave. The radiologist soon comes to fetch you and take you round the curving corridor. The actual zapping with rays is brief, most of the time is spent adjusting you to exactly the right position with the two radiologists talking numbers and degrees. They take a three year degree to learn all this. The weird grey machine makes various beeps and noises, but all we have to do is keep our arms raised holding on to the bars and stay completely still. When out of the room the staff are watching you on closed circuit TV and you can wave to them if there is a problem… All the staff are very friendly and reassuring.
After a few sessions I thought I was getting the hang of the routine; three buzzes and staff must leave the room. I have three zaps from three different directions and in between, the Great Varian grinds and moves. A long buzzy beep is the actual dose of rays. One time it had just started when the room lights suddenly came on. Over the intercom a voice said ‘Don’t worry, we have an interlock, we just have to wait five minutes before we can restart.’
This was definitely out of Star Trek… ‘Captain we have an interlock with the Varian ship.’ I was about to go through a time shift or into another dimension. After what seemed like twenty minutes the voice said ‘Only two more minutes to go.’ The staff returned and so did normality.
All my appointments have been quite early and very specific times. 9.06am, 9.18am 9.03. I have usually been called in on time or early, but one morning I was sitting by myself, no one on the reception desk and the screen said Varian Two On Time. Time passed, other patients came in and we compared appointment times. I was first, what was going on? After the interlock incident of the day before I wondered if the machine had broken down, but why had no one come to tell us? Had Varian Two taken all the staff through a time shift or zapped them all with a mega dose of radiation… more time passed and at last I was called. The explanation was more prosaic than my imaginings. They were busy, short staffed and had no time to update the screen in the waiting room.
Strangely, my trips down the corridors have got shorter with familiarity. The route is lined with paintings and the area is bright and pleasant. The shiny wooden floor squeaks when anyone walks, it is not just my new shoes. A look at the health ap on my phone shows I have walked less than a kilometre from the hospital main entrance and back again, not the miles it seemed.
Some of the questions I have been tempted to ask as a writer, but haven’t yet…
‘Do you get many patients who panic?’
‘Has anyone accidentally been given a mega dose or forgotten about?’
‘Have you ever had a rogue/insane radiologist who tampered with the machine?’
As a patient I don’t think I will ask as they are all very professional and sane and nice…
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…
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.’
‘Noneof 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’tunderstand 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…
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.
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…