cancer

Gaia Has Chemotherapy

~ tidalscribe.com ~ 17 Comments

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

~ tidalscribe.com ~ 33 Comments

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

~ tidalscribe.com ~ 39 Comments

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

~ tidalscribe.com ~ 34 Comments

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

~ tidalscribe.com ~ 19 Comments

 ‘…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…  

In The Yellow Zone

~ tidalscribe.com ~ 38 Comments

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

~ tidalscribe.com ~ 36 Comments

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/

Life in the Third Decade.

~ tidalscribe.com ~ 46 Comments

Whether you consider it started at the twelfth stroke of midnight, first of January 2020, or a year later, I think we can all agree the third decade of the Twenty First Century has not started well. But even if we have lost loved ones, friends or fellow bloggers, life inevitably goes on, though ‘normal life’ still seems a long way off. My life took an unexpected turn a few weeks ago when I was diagnosed with breast cancer; treatable and curable, so at my age ( not that I’m that old… ) can’t complain! It IS tragic when young mothers get the more aggressive forms of breast cancer, it is tragic when any young person or child has cancer, life is not fair and none of us know the rules of the game…

In the space of a few weeks I have entered the system, had all sorts of tests and my operation brought forward. The NHS has come up trumps, but it is true that breast cancer has had a lot more attention and research devoted to it than other cancers. It is also true that if you have other undiagnosed chronic conditions you are not funnelled so swiftly and kindly onto a pathway.

Many of us have tests of various sorts over the years with all the wonderful magic waves, magnetism, ultra sound that exist these days, then feel a bit guilty when it turns out nothing is wrong, you were just anaemic or it was just a pain, nothing serious.  Then one day the atomic super scanner does find something; to say it’s unexpected is not true. I have lived with cancer all my life, brought up on the stories of my grandmother, who died of bowel cancer at 56 when I was little; the only grandchild she would get to meet. My grandfather had died suddenly the year before, also 56. A short time before, he had been saying how good life was, with lovely little me and my grandmother returning from hospital after a ‘successful’ operation. Family legend has it that Grandma ‘gave up’ after losing her husband; the reality was that there was no cure for bowel cancer then. But it is true that my mother walked into her mother’s bedroom one day when she was undressing and saw lumps on her body. She was shocked that her mother had not told them or gone back to the doctor. I seem to have always known this story with its vivid image of cancer bursting out all over the place.

 Few modern women can be unaware of cancer, expecting or fearing our wombs, ovaries or breasts to be invaded at any moment, not to mention all the other parts of our bodies. I am not a doctor or scientist, but the simplest explanation I have read is that it would be a surprise if people and other creatures did not get cancer; our bodies are a mass of living cells designed to constantly reproduce, sometimes they go awry. When my aunt in her seventies sailed through her mastectomy I said I would never be afraid of having one; my mother had a mastectomy in her nineties and took it in her stride, living long enough to die of old age. With my father dying of leukaemia and my sister surviving cancer a long time ago I have glibly assumed it was just a matter of when, not if I would get cancer. Humans are living long enough to increase our chances of succumbing; there are no magic bullets because there are a multitude of cancers, lots of people get better or have a long remission, others don’t. I have no more right to survival than anyone else, only to not cause my family any more stress after losing their father nine months ago. The Game of Life is strange; a local friend has just had a mastectomy and my old school friend was having breast surgery the day before I got my diagnosis, I am certainly not alone.

Warning Cancer Joke

Doctor: ‘I’m sorry to have to tell you the tumour is malignant.’

Patient: ‘Oh thank goodness, I was worried it was cancer.’

And more irreverent thoughts…

Daughter on phone trying to sort out my iPhone account…   Me:  ‘Just tell him I can’t sort out my phone cos I’m a widow and I’ve got cancer’–  Yay, now I have two reasons for not doing things…

Yes there are plenty of positives. I can’t go to the camera club AGM as I’m isolating ready to go into hospital on Friday – oh hang on, roadmap delayed, AGM will be on Zoom, I can go…

Our family has a tradition of feeling guilty, about pretty much everything and now a weight of guilt has been lifted off my shoulders. I can hold my head up high and look others in the eye. No longer feeling guilty for going around being healthy while others have so many medical burdens to bear.

How lucky that my younger son and his fiancée have given up their rented home and are moving in with me this week as part of their plan to be in a better situation to buy their own place. Their planned seaside break next week has turned into being carers, not so lucky for them…

My NHS daughter will be organising her brothers and the NHS as she did last year; as she is a physiotherapist she will make sure I do my exercises.  

It has rained a great deal, summer solstice was a wash out, but at least my garden won’t need watering for a little while because…

As I am having lymph nodes taken out as well there will be lots of things I can’t do with my right side like gardening, cooking, housework… More importantly maybe I won’t be able to type much – good excuse for blogging being erratic, though perhaps I’ll post lots of pictures.

To go with my garden pictures here’s my favourite happy garden tune ‘English Country Gardens’, an old folk song arranged for the piano by Australian Percy Grainger and played with gusto in this original recording.

Percy Grainger & Eugene List play Grainger “Country Gardens” – YouTubehttps://www.youtube.com/watch?v=T8cBGRiQwlU

The Game of Death – New Players

~ tidalscribe.com ~ 9 Comments

Warning: If you want to avoid the topic of death and dark humour read no further.

Covid 19 has made people think and talk about how people should die, with emphasis on not being alone, preferably with family. Covid patients in isolation have been unable to see loved ones.

In reality most of us cannot choose where to die or plan the scenario; victims of murder or major disasters certainly don’t have the luxury of dying in their own beds comforted by family. Awful circumstances such as terrorist attacks find total strangers holding the hand of a dying person, giving their death some dignity. As no one comes back to tell us, we cannot know if the surroundings and company or lack of it make any difference to their own unique internal solo journey. Celebrities often seem to have died ‘peacefully at home with their family present’ but folk lore and family tales seem to indicate that dying people often wait till the very moment loved ones pop out of the room.

Most terminally ill people will probably get the chance to opt for palliative care at home, though it can’t be guaranteed; they may need to go to hospital or a hospice eventually, but Covid has made it even more desirable to stay at home and leave hospital beds free for others. Unless everyone in your family is a medical person, carers will need help along the way or near the end; team work and various bits of equipment are required to make life easy for patient and carers. There is nothing to stop you ordering wheelchairs and all sorts on Amazon and getting next day delivery, but the National Health Service is geared up to lend what you need and the various teams helping you will be busy arranging equipment. The largest item is the hospital bed; you might die in your own home, but probably not in your own bed, however romantic that looks in films. The beds have to be plugged in and do all sorts of things. The bed and other items come with wheels and stiff pedal brakes impossible to put on or off if you are only wearing your slippers!

In the first few months of the lockdown I coped fine by myself with Cyberspouse. District nurses were trying to avoid going in any homes, but they phoned regularly with advice and to arrange some of the medications. They were ready to come out with their protective gear if necessary. Cyberspouse was happy not to have any visits, medical or otherwise, relaxing at home in the exceptionally sunny weather we had.

Later on, family help was more vital than keeping isolated and they took turns to come and stay; it was only in the last ten days that the district nurses came and arranged for Marie Curie nurses to parachute in with four visits a day. A helpful bright yellow book arrived promptly in the post. We were also glad a few times to ring the emergency numbers that had been sitting by the phone for months; night duty district nurses and 111 doctors. Marie Curie were excellent, compassionate and caring ladies and one chap. Visits rapidly increased and they made sure I had a night nurse for what turned out to be the last night, one of the few nights I was going to be by myself. They told me I was going to have wonderful Linda who had been doing the overnighter ‘forever’.

Linda arrived with a huge bag, rather like a mature Mary Poppins. I explained yet again that none of the family lived nearby, but they had all been to visit and my daughter was coming back the next day. It was a busy week in real life with two grandchildren just back in the UK and starting a new school and my daughter’s son starting school! Younger son had just got engaged. Linda was there to make sure Cyberspouse was comfortable, to organise the practicalities and make sure I didn’t miss the moment…

I later got a nice card from Marie Curie and they have rung me a few times to see how I am getting on. They are a charity well worth supporting.

Handy Home Hints

You might think your loved one is past the point of seeing the GP, but it is the GP who has to prescribe the drugs and you will have to go and sign for the ‘just in case’ controlled drugs as well as collecting various ongoing prescriptions.

It is helpful if someone in the family works for the NHS or has a friend in palliative care nursing … my daughter is a physiotherapist and had that very friend to ask for advice. She always made lists of questions and sounded professional on the phone, so we were well prepared.

After the death a doctor has to come and certify the death, either the GP or the on call ( 111 ) doctor at night. After that you must call the funeral director, but you can decide if you want them to come as soon as possible or wait a while.

Afterwards you will have to return all the drugs to a pharmacy, especially the controlled drugs, but unused needles have to be returned to the doctors’ surgery.

Darkly Funny Moments.  

The next day, Thursday, the funeral directors phoned to say they had not had the notification from our GP of the death. The on call night duty doctor had sat at the kitchen table typing into his lap top, saying ‘everything is going straight through to your doctor’s surgery’ but my writer’s mind thought ‘I have no proof he’s even been here, no piece of paper, was he actually a doctor?’ I was slightly reassured that nurse Linda knew him. When my daughter tried phoning our surgery she couldn’t get through and in the end resorted to using her internal NHS email. Luckily the information did end up in the right place.

One thing the district nurses requested unsuccessfully was a hospital bed extension, we had been expecting it for weeks. When a chap with a truck arrived at the door on Thursday morning I thought he was very quick to collect the hospital bed until he said cheerfully ‘I’ve brought the bed extension’. Poor bloke was embarrassed when I apologised that it was too late.

We had not seen much of the palliative care team from the local hospital who originally got us organised. One of the nurses had phoned the previous week saying ‘I’ll touch base with you on Friday.’ Sure enough on Friday the phone rang and she said brightly ‘Just calling to touch base’… so I had to tell her the news.  

Because of  Covid we were saved a trip to the registry office; instead I had a nice phone chat to Polly the registrar including Cyberspouse’s no funeral request. After taking most of the details she asked me my occupation. Oh oh, was I going to fail this part? I replied that I had done all sorts of things and she said ‘How would you like to be known in a hundred years?’ Well who in a hundred years would know I didn’t earn a living at it, so of course I replied  ‘A writer!’

https://www.mariecurie.org.uk/help/support/terminal-illness/preparing/what-to-expect

The Game of Life – Final Rounds.

~ tidalscribe.com ~ 32 Comments

When my mother planned her funeral five years ago she could never have imagined the service at her local church would be streamed live across the world. Covid has changed how we deal with death, before and after. Mum had outlived my father by twenty four years, at 94 she was happy and ready to go. She was the same age as The Queen and David Attenborough, who are still hale and hearty, but that’s the game of life.

I wrote my first Game of Life blog in November 2018; here is part of what I wrote.

We have to leave Summertown, the days of being recycled teenagers are over. There is a very real possibility that Cyberspouse will be outlived by the Duke of Edinburgh and my mother.

https://tidalscribe.wordpress.com/2018/11/07/the-game-of-life/

Cyberspouse outlived my mother by just over a month, he has been outlived by the Duke of Edinburgh. In this Covid world those with terminal illnesses are among the many who have been isolating and shielded at home, not to cheat death, but to have it on their terms. Cyberspouse achieved his aim of never going near a hospital again; happy sleeping a lot and just doing what he felt like doing. For most of those six months we were on our own, though with various medical teams at the other end of the phone. You can read about our life in lockdown here.

https://tidalscribe.wordpress.com/2020/05/20/the-game-of-life-covid-19-edition/

 Covid restrictions eased in August and we soon needed to make up our own rules so family could come and help. It was only in the last fortnight that the district nurses and Marie Curie nurses parachuted in; they were marvellous and worthy of their own blog.

There has been plenty of dark humour along the way. Cyberspouse was always adamant he did not want a funeral, very handy as traditional funerals are difficult or impossible with Covid.

Anyone dealing with cancer or illness reading this, don’t let it scare you; every case is different. Friends much older than us, sending sympathy cards, have had cancer and other dices with death years ago… open heart surgeries, body parts removed and they are still here, that’s the game of life.

Colin Campbell Gogerty 24th January 1952 – 2nd September 2020

Coming soon – The Game of Death 2020