Just because your relatives are cabbages does not mean you can’t be beautiful.
For the second summer in a row I haven’t been far afield so I have taken endless pictures of flowers and tried a few new things like the mini wildflower meadow thanks to free packets of seeds from 38degrees and buzzy bee charities…and not mowing part of the ‘lawn’.
But every time we had a rainy spell it was mushrooms that grewor were they toadstools or fungii…
But flowers are still popping up in the meadow.
The tomatoes were a great success, both of them.
Mr. Nosey Potato got left behind at my house then there was another lockdown so I planted him in a pot…
But someone didn’t want to eat Mr. Nosey’s children.
This was my best shot of the Bournemouth Air Festival – I missed the wing walkers flying over the back garden and a Red Arrow flying over the roof…
When Christmas was cancelled I left the Chreasterbirthdaymas tree in the front garden and tied a ribbon on for each day of lockdown. This month it is a Breastmas treeas October is Breast Cancer Awareness month.
This is the newest garden development Chez Tidalscribe, a wheelie bin store with deluxe plant shelf and self filling watering can. Thanks to Strobe Interiors. And it’s that time of year when gardeners can cheat and buy lots of cyclamen at the greengrocers ( and just about everywhere ) for instant colour.
Yesterday morning I had session Three of chemotherapy and the cannula went straight in, all positives, so I wanted to do a quick blog. The only hiccup was something going on in the hospital pharmacy and they neglected to tell any of the staff on the ward that there would be delays so they could phone us all to come in later. We all had to wait for our drugs. But the four of us were so busy chatting from our socially distanced chairs that time flew. Three ladies with more problems than me and all different cancers ( though I did have the trump card of being widowed ) and great senses of humour. We talked about everything including the after life. I am part of a real club! And I should add that we all agreed the medical staff are great.
How did you all manage without Facebook etc yesterday! Of course I thought it was technical problems Chez Tidalscribe till I tuned in to that much older medium the radio and The News!
It is a good while since I was working on a novel, with all that’s been happening, though I have never stopped writing short stories. I keep wondering how on earthI managed to write forgetting that I have written five novels. I think Three Ages of Man remains my personal favourite, it is the second of the trilogy, but can also be read as a stand alone novel. It is about ordinary folk, but they do tend to have extraordinary experiences and you may find out how we are going to manage the planet and our health in two centuries’ time…
Week Three after my first chemotherapy session included an appointment to oncology outpatients to see a nurse. I told her how fit I was feeling and she reassured me the fatigue would get worse each time ( perhaps she said slightly worse ) and it was amazing how fitness levels dropped. She also said this was the week when hair thins… but she did order me mouth wash for next time; sore mouth and food tasting like mashed cardboard is probably the worst part. But like the fatigue it had suddenly got better and food tasted wonderful.
Sure enough, two days later my hair did start falling out; yay, no need to bother with the cold cap next time and I could get out my collection of colourful scarf/hat Chemo Chic wear, mostly ordered from Hannah Bandanna. It didn’t all fall out and I look rather like my grandmother, who even when I was young had very sparse wispy white hair. We just took this as being what a grandmother looked like, along with the large pink plastic whistling NHS hearing aid box that hung on her chest. Now I wonder if the hair loss was upsetting for her and was it the stress of bringing up three children while Granddad was away in World War Two ( away in Southport with the civil service, not on the front, he had already done that in WW1) or perhaps genetic, her sister was completely bald and hung her wig on the bed post overnight.
Sunday ‘chemo eve’ I went with my son to the beach hut and we had a swim in the sea. He probably got more than he bargained for; walking along the cliff top we met a couple I know, who hadn’t heard about the big BC. He has lung cancer so lots to chat about! On the way home, walking along the promenade, we met more friends at their beach hut and she recalled her bowel cancer treatment… You’re never alone with cancer!
In the ward on Monday was the young lady from last time with a full head of hair and about to put on the cold cap, proof it can work. The lady opposite me was sitting quite happily with her bald head uncovered. They were trying to put in her canula, while she repeated she didn’t usually have any trouble. At the chemo group chat the sister had said they can always find a vein. I gather putting a canula in is a nerve wracking rite of passage for medical students and I would certainly not like to try putting a needle into and not straight through a thin or even invisible vein.
Smugly I assumed mine would go smoothly, but my nurse also had trouble. I have only one arm they can use – the arm of the lymph node removal is apparently out of bounds for everything including doing blood pressure. Inevitably the desperate tapping of veins etc has to be performed with the patient looking on, which can’t help, but third time lucky. Meanwhile it was about fourth person lucky, a nursing assistant, who managed to get into the vein of the lady opposite.
The ‘red poison’ is put in slowly by syringe; it is so strong they must keep a close eye to make sure it doesn’t go into surrounding tissue. The second drug just goes in by drip and was only supposed to take fifteen minutes, but no sooner had I messaged my lift that I wouldn’t be long than the alarm beeped. The drip had come to a halt; much tapping of the tube and fiddling with the box the tubes feed through between the bag and the arm. In the end the nurse removed the yards of plastic tube, dumped it all in the bin and started with a new length of tube; an idea I had been tempted to suggest myself. All was well until just two minutes left when it stopped again, luckily she was able to restart.
Soon I was ready with my bag of prescriptions to take home, the large bottle of mouth wash making it deceptively heavy. I followed the WAY OUT signs, but luckily paused at the entrance to rearrange my stuff and glancing in the prescription bag realised the seven day course of injections ( which stimulate white cell growth ) was missing. The centre is actually in temporary accommodation in a large ward while the regular place is being upgraded; I had great difficulty finding my way back through the maze of desks, little rooms and other bays till I found Bay Three. My needles were still in their fridge.
At home three days later I was waiting for the district nurse to come and do my first injection, they can call any time between 8am and 5pm, but I had this funny feeling the hospital may not have contacted them and phoned up before noon to make sure. No they did not have me down and did I have the prescription form? NO, I had not thought to look in the bag and check. They cannot do injections without the oncologist’s prescription form on which they have to stick a tiny label peeled with difficulty from the syringe and write the date. What number to ring? After searching through my bundles of information I had no idea, but actually phoning the main hospital number and working through the options is the easiest approach and I did end up in the right place. The nurse said notification should have ‘gone to the hub’ and then out to the district nurse. I was home alone and no I couldn’t send anyone to fetch the forgotten prescription. Fortunately she agreed to phone the district nurse and email them the form… I wasn’t totally convinced and had almost given up hope when the nurse turned up at 4.55pm.
Now my aim was to learn to do injections myself, it looked quite easy. In the stomach is not as bad as it sounds, subcutaneous, under the skin, just a matter of taking a fold of fat skin. I’m sure there are many people out there used to doing injections on themselves for various conditions, but this was my first time. The next day I did it under supervision, no problems, yes I would manage fine by myself tomorrow.
The nurse said the cap on the needle point is very stiff so you have to grip tightly and pull hard. Next morning I did exactly that… the plunger came out and liquid sprayed into the air. I had broken it. I took out another syringe and made sure I gripped the right part, success. Perhaps I would keep quiet and not tell anyone about the broken one…
It turns out to be true. Week Three of chemotherapy you feel back to normal. Perhaps even halfway through Week Two; watering the garden and a little light dead heading turned into a pile of branches in the middle of the lawn grass as I attacked the buddleia ( common or garden variety, well known for colonising railway banks and derelict buildings ) that was taking over the garden.
Even going over to the letter box seemed an adventure, then a walk round the block to confirm I was back in the land of the living…walk to a friend’s house and by Wednesday it was time for a proper walk across the River Stour to meet some writer friends for coffee then back by ferry… 6Km circular walk according to my phone. The weather has been hot and sunny so come along…
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.
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.
When I woke up there was a strange man in blue standing by my bed, then I remembered I was not at home. He spoke.
‘The operation went well.’
I felt a sensation of total relaxation, the sort of calm people spend hours doing yoga or meditation to achieve. I looked at the clock, it was 5.45pm. I had not woken up during the operation and it was all over, a quick feel revealed that the right side had been operated on. Now I need do nothing except lie there and relax.
It’s only now that my writer’s mind brings forth alternative scenarios, what might be said to you when you wake up…
‘I’m very sorry, the operation went wrong…’
‘You’re in hospital, you had a massive stroke when you were in the operating theatre six months ago…’
‘Do you understand, you have dreamt the past thirty years, you are not a writer, you are in a high security mental institution…’
Fortunately it was still Friday evening and I was soon down/along/up? on the surgical ward. The four bed bay was devoid of other patients, I was not by the dusty window, but sitting up had a view of the harbour. Dinner was not an option. I had been amused when my friend told me she managed to eat quarter of an egg sandwich over three hours after her operation and the walk to the bathroom made her sick. A cup of tea and a nibble of ham sandwich was welcome. Getting out of bed is encouraged, a relief not to be involved with bed pans, but the walk to the bathroom did make me sick.
In the lead up to the hospital visit there had been much discussion on what I would take in with me. There were numerous leaflets written pre and post Covid and pre and post our three local hospitals suddenly deciding to call themselves University Hospitals Dorset NHS Foundation Trust and changing the phone numbers.
The main message seemed to be Don’t bring too much stuff, Don’t bring valuables. I was certainly not going to bring my brand new iPhone, which according to my younger son who looked it up after my older son bought it for me is very expensive! And I had managed to lose WiFi on it. I had brought my old phone which still had its sim card, but I couldn’t log in to NHS Wi-Fi in the pre op waiting room, because you had to confirm when they sent you an email and I didn’t get the email as I didn’t have any Wi-Fi… Nor was I going to bring any bank cards to log in to the bedside television, wifi etc which I was sure I would not be able to work; the leaflet said just bring small change. My Kindle would be enough entertainment, though it would be a shame to miss Gardener’s World...
I couldn’t imagine they expected every patient, however old or unconscious, to leap out of bed and rummage around in the locker for their smart phone to contact their family as soon as they arrived on the ward. Patient notes have next of kin and a phone number and you only want two messages sent to someone responsible‘still alive after operation’ and ‘come and fetch me.’
It turned out they did try and ring the hospital but there was confusion over phone numbers and they weren’t to know how late I had gone down to the operating theatre…
A closer view of Poole Harbour
The nurse did ring my daughter so I sat back and relaxed for an evening of blood pressure and pain tablets, each time asked my date of birth, presumably to check I was still alive or still the same patient. One more patient arrived in the opposite bed. The nurse said she would be back at 11.30pm with the anti blood clotting injection so I didn’t bother turning off the light or tying to sleep. At 12.30am she still had not arrived and I wondered at what time my blood would start clotting.
At 1am I had the injection and presumably went to sleep because a cheery voice said ‘Good Morning’ and checked my blood pressure. I was looking forward to breakfast, but it looked very dark for a summer morning. When I asked the time the nurse said quarter to four! After a wander to the bathroom I asked the nursing assistant what time breakfast was – 8am. Then asked if I would like a cup of tea and a biscuit. YES
Custard creams, yuk, bourbon, no.. or digestives. Yes please. When the mug of tea arrived there was a packet of three Crawfords digestives, I refrained from saying ‘Haven’t you got Macvities? and it turned out to be the best tea and biscuits ever.
Breakfast was a nice bowl of porridge and toast, all I could imagine facing when I ordered it the evening before. The elderly lady opposite was bed bound and mouthed something, I realised she was whispering I’ve had half my bowel removed. I got out of bed and searched for her lost pen unsuccessfully, then lent her mine so she could fill in her menu. Also I had a good look through the dusty window at the views and took photos, my old phone had come in handy for something.
Another view of the outside world
A doctor came round and said I could go home after lunch, so I went and had a wash, dispensed with the hospital gown and put on my new nightie. Any moving around involved lugging the wound drain bottle and the long length of tube I would be attached to for the next week or so.
I had just got back into bed and a different doctor came by and said I could go home right now. The nurse asked if I wanted to ring home. I tried to explain the phone situation and asked if she could ring. A sensible request as she knew the system and I didn’t. Getting from a ward to the ground floor and then endless corridors to the multi storey car park had seemed a logistical nightmare, but my daughter was told to park in one of the few bays near the main entrance and ring the moment she arrived and the nurse would wheel me down. A better exit than my arrival in my son’s builder’s van. On the way from the ward we passed the machine for purchasing access to the television which had remained perched up by the ceiling above my bed. I hadn’t even needed the small change as in Covid times no one comes round with trolleys and newspapers etc
My departure was exactly 24 hours since we had arrived thirty minutes early the day before and about 21 hours since I had gone to the theatre. Sunday would bring the district nurse on the first of the daily visits...
In July it has been raining and I am not complaining. Better than horrendous heat and no need to water the garden. Enjoy a potter round the garden without getting your feet wet and drop in for tea.
Times and Tides of a Beachwriter 