Going round the bend you cannot see what lies round the corner, be careful where you end up.
If you know where you are, let me know… and if you want to go somewhere really strange…
READ ONE OF MY BOOKS…
Going round the bend you cannot see what lies round the corner, be careful where you end up.
If you know where you are, let me know… and if you want to go somewhere really strange…
READ ONE OF MY BOOKS…
‘…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…
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…
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.
‘Claire, Claire, where are you?’
The back door flew open to reveal my husband dressed in his bright holiday shorts and business shirt and tie.
‘Where did you think I was, I told you we were going to fill up the paddling pool.’
‘Nice to be some…’ said Tom.
‘Come and join us later, surely you’re allowed a break?’
‘Depends how long the conference call goes on for, I just came to tell you we’re out of coffee.’
Covid had a lot to answer for, especially the idea of working from home.
‘Can’t you get it, I can’t leave the little ones with the water. Why don’t you have a cup of tea or a smoothie for now?’
Tom spluttered in disgust.
‘A green broccoli smoothie is not going to get me through that conference call… anyway you know what we always get.’
‘Okay, you stay out here and keep an eye on the hose and the children… and put your phone away.’ I dropped my voice and mouthed ‘it only takes a minute for a child to D.. R.. O..W.. N.’ then raised it ‘Oscaar… hose in the paddling pool not on Daddy.’
‘Don’t be long’ pleaded Tom.
‘Do you want the variety box, latte, expresso, americano…?
‘Yes, yes the biggest box they do.’
I went upstairs, pausing on the landing to look out the window and make sure Tom had not forgotten he was in charge. The hose was now snaking out of control across the lawn. In my so called office I logged in to Coffee Zone, repeat order, multi pack, check delivery times… Yes, coffee would be here in time for his bloody conference call. What did they actually do on conference calls? Probably played X Box like my forty year young brother. I had no idea what Tom actually did at work when he went to the office every day and now he worked from home I was still none the wiser. Whatever he did he had been head hunted a couple of times and with the amount he got paid I didn’t mind spoiling him. My on line upcycling craft business hardly brought in enough to feed the dog and the cat.
I looked at my watch, twenty minutes to get ready for the coffee. I dashed back into the garden.
‘Tom, where’s the dog?’
‘You only told me to look after the children.’
I waved a packet of dog treats and Zeus bounded out of the herbaceous border, he was soon locked in the laundry. The children would be harder to get under control.
‘Ten minutes then indoors.’
‘But we haven’t done paddling yet.’
‘Why don’t you come in and watch Octonauts and have some parsnip crisps while the sun is warming the water. Then you can come back out after the coffee has arrived.’
With the children safely indoors I still had to find the cat, but there was no time to look. Hearing Zeus’ frantic barking I rushed back in and locked the door, the dog always heard it before me. Keeping watch through the patio door I saw a glint over the trees. 10.45am, exactly on time. The Coffee Zone Drone circled, I hoped it’s aim would be better this time. My stomach lurched as, too late, I saw a familiar black and white shape slink across the lawn then freeze as the warning siren started. The drone was higher than usual when its undercarriage opened, the large bright orange box dropped down onto the lawn, narrowly missing the paddling pool. I dashed out, but as I got close my mouth went dry. Sticking out from under the hefty box was a black tail. I knew from previous deliveries the box was too heavy to lift on my own and I was thankful to hear Tom’s voice. I turned to see him holding the cat and laughing.
‘He’s a quivering wreck, he doesn’t like drones does he?’
My relief was short lived, had we killed the neighbour’s cat?
‘Quick, lift the box.’
I closed my eyes. When I opened them Tom was holding up the squashed body of the shabby toy cat the children had insisted on buying from the charity shop.
FOR MORE SHORT STORIES OF ALL SORTS READ ONE OF MY COLLECTIONS
Read no further if you are squeamish, read on if you are going to have an operation or look after an operatee.
Torrential rain immediately after my operation meant helpers did not have to water the garden and I wasn’t missing much in the outside world. I wasn’t as incapacitated as I expected, but for nearly two weeks I was attached to a long tube which led to the wound drainage bottle – a contraption the district nurse said she hadn’t seen before, patients often have bags that are changed daily. A green concertina device showed if the vacuum was still intact, the same principle as syphoning petrol.
In the days when people spent a good few days in hospital after an operation they would be attached to all sorts of tubes putting fluids in and taking other fluids out; people who managed to avoid hospitals would know little about such mysteries. One of the the district nurse’s daily tasks was to measure output and replace a bottle if the suction went. Carrying this bottle, even with the handy bag sewn by a kind patient who had invented them, was like never being able to put your shopping bag down. I was also constantly forgetting it was attached. If I had known that the amount of tube inside me was about a foot long I would not have worried so much about pulling it out. Family and visitors wondered what was going into the bottle to make the ‘strawberry smoothie’ – some blood plus a lot of lymph fluid that wasn’t sure where to go after all the lymph nodes were removed. We all know about blood circulating and kidneys etc, but the lymphatic system is unfairly ignored by most of us!
This long attachment precluded any serious attempt to get dressed or try on the surgical bra and foam falsie, but haven’t half of us lived in our dressing gowns since Covid started? So what to do except sit and receive visitors, cards and flowers? I soon got bored with resting; thank goodness for the back garden, I could sneak out and do some dead heading when the rain stopped. I tried to avoid the kitchen; family were great with meals and coffee and tea for visitors, but there was a relaxed attitude to washing up and tidying the kitchen!
The wound was sewn up with dissolvable stitches, sealed with ‘superglue’ and a hundred steri strips and to my relief the dressing stayed put for the required two weeks. The super glue allowed showering, though soaking in the bath was not recommended. The whole area stayed numb for ages and I felt like a first stage Cyborg, half my rib cage replaced by a steel plate. There are exercises to do from day one, then more after the drain is taken out and continued for ever… Lifting is forbidden to start with and reaching up for things catches you out.
I was glad to get out for walks once the bottle had gone, now there was another week to wait before going back to the hospital for pathology results.
Missing out on the Olympics, wish you were there?
Why not hold your own Olympics at home?
If you are purposely going into hospital for an operation, perhaps purposefully, elective, not elected… you will probably be filtered through the system with all the operations for that morning, afternoon or day; so make sure you get the right operation and don’t assume the time on your letter has anything to do with the actual time you
meet your doom go to the theatre.
The basic procedures are much the same for all of us and after our many lockdowns and isolations at least we get to talk to lots of people and answer lots of questions, again, from nurses, anaesthetists and surgeons. This is your opportunity to remind the surgeon which side they are doing. You can also mention to the anaesthetist that documentary you saw thirty years ago about patients who wake up during their operation, but can’t alert anyone because their eyes are taped over and they are paralysed. Point out this is in the notes on general anaesthetic under Rare Risks AWARENESS, just above Very Rare Risks – DEATH. Anaesthetist reassures you that there is only a very slight possibility of waking up, just wave your arm if you do. You have more chance of being involved in a road accident on the way home… reminding you of something else to worry about. Of course, there is also a very good chance of waking up at the right time in the recovery room.
In this long corridor of waiting rooms and little consulting rooms and long waits, at some stage you will have to change into a hospital gown, tight black stockings which are hard to pull on ( ladies, you needn’t have worried about shaving your legs after all ) and your dressing gown and slippers, which hopefully you haven’t forgotten to bring. Then you realise the overnight bag you brought isn’t big enough for all your street clothes.
When I went for my interview with the breast care nurse the week before, she produced the consent form for me to sign and it said mastectomy left hand side ‘NOoo, it’s the Right side’
‘That’s funny, only the second time that’s happened to me in twenty years, I’ll do a new form.’
Because I was slotted in at an earlier date I hadn’t met the surgeon who was going to do my operation. He asked if I was happy for him to examine me or did I want a nurse present. I thought hmm, not worried about being molested at my age, but I just said ‘No, that’s fine.’ I was tempted to add ‘well you will certainly be the last chap to play with that breast… ‘ I did add ‘…as long as you know which is the right side, which is the right side…’ He did some drawing with his felt tip pen, saying don’t worry, it will come off.
The worst part was being back in the waiting room in the middle of the afternoon with no food since 7.30am and no water since 11am and more waiting; there were not many patients, but they all seemed to go before me...
Then at last yet another nurse comes to collect me, my bags are
confiscated secured and tagged. Now the long walk to the theatre, the walk down long corridors, this is why you bring your slippers. It was a relief to get moving and stretch my legs and interesting seeing all the secret parts of the hospital. Everything is blue; corridors, doors, uniforms, scrubs…
These days patients wear masks as well as the medical staff, so naturally I was wearing my favourite mask to get Brownie points. My last general anaesthetic was in 1978 and most of those involved tonsils or teeth. I had all my caesareans with epidurals and some hand surgery under local anaesthetic, so I didn’t miss out on what was going on…
Destination anaesthetic room, next door to Theatre Number One; the nurse let me peer through the porthole where people in blue scrubs were getting everything ready; all that just for me! My elderly neighbour who had the same operation a year ago had reassured me that being an anaesthetist is an actual job, an important job and my friend who watches all the hospital programmes said they look after you all the way through the operation!
Everyone who has an operation will tell you that they put the canula in, put an oxygen mask on and tell you to take some deep breaths, next thing you know you wake up in the recovery room. I kept taking the deep breaths and I was still wide awake, it wasn’t working! Then the anaesthetist said ‘Okay, I’m going to start putting the drugs in now, first the pain killer, tell me when you feel funny.’
It was a lovely warm glowing feeling and then…
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.