By Ashley Walker. 29th November 2024
Copyright (text and images) Nature’s Rainbow unless otherwise credited. Header photo taken by Sharon Cooper.

Warning! The contents of this post is a warts and all account of the last few weeks and days of Susan Dye my wife and partner of the last 35 years. It makes very sad reading so if you don’t wish to be upset please read no further. I’m publishing the account here because its the only way I can do it and although plant dyeing does have a background part to play in the story it is the people here that are important.

I took no notes or made a diary of events so the exact sequence and timing may not be 100% accurate. My memory may also be poor about some things, (my memory is always poor about some things). Writing this has been a coping strategy for me. It was very hard to write and will make harder reading but if it helps anyone identify the symptoms of stomach cancer, avoid the mistakes we made or get through a similar situation it will have been worth the tears spent in the recording. It also highlights the shortcomings of the National Health Service in the UK which is simply incapable of responding to difficult to diagnose and fast onset cancer. This is in our opinion due to successive Tory governments running the service down.

Susan’s message

Susan published this on social media after she was diagnosed with Stage 4 cancer:

Thank you for everyone’s support, good wishes, practical advice, healing and prayers since I shared my health crisis information here.

Sadly we learned a few days ago that my cancer (probably but not yet definitively proven an adenocarcinoma) is more widespread than the stomach. This rules out curative treatment. I am in a palliative care scenario. We don’t know, but it seems likely I have a short life expectancy of months or even less. No-one can say.

The task now is to make peace with the reality of endings, decide order of priorities and organise practical matters. 

Some of you will know well the weight this imposes on Ashley. The shock of news like this is big. It takes time to adjust.

Ash and I have had the privilege to home hospice three dear people at end of life (see the about page on naturesrainbow.co.uk). So I feel that so long as we are gifted enough time, my ending at home can be as good as possible.

Many of you will never know how much fulfilment you have given us with your passion for colour from plants. To have contributed to this community through our website these past nine years has been a joy.

Ashley is the powerhouse of horticultural knowledge for Nature’s Rainbow. We still both hope that Ashley will write the book on growing dye plants which we have talked about for several years. That would be a good legacy.

Meantime I want to say death is waiting for us all, a part of the cycle of life and entropy.

In an unexpected way, for me, the inevitability of death simplifies and reassures. This is now my task: with the help of dear friends, family and palliative cancer care specialists, to make my remaining days as good as they can be.

There is an aspect of me which is a ‘rabbit caught in the headlights’ but this is not the whole of me. I will be seeking the meditative stillness I have learned from tai chi. Preparing. 

I wish you dear friends, who share a love for colour, strength and courage in your paths ahead. Live well.

Much love, Susan

The beginning

Susan had been suffering from certain symptoms all year but these were erratic and would disappear for weeks at a time. At one point she did get an appointment for an ultrasound scan after visiting the GP complaining of abdominal pains but the appointment was for months in the future and in the meantime Susan felt sufficiently better to cancel the appointment. One can only imagine how different things might have been had they been able to give her an earlier appointment or she not cancelled. The main symptoms were what appeared to be indigestion and constipation pain in the abdomen and the production of gas which would be expelled via belches. This went on for I don’t know how long but gradually towards late Summer it became worse until eventually nausea would be associated with the discomfort. I bought some laxative to ease constipation which Susan was convinced was the main problem. She had trouble going to the toilet and often ended up straining to get any kind of bowel movement.

Eventually it got to the point that Susan would eat a meal and then after around two to four hours would suffer terrible indigestion and gas. This became a regular thing and she would complain if I gave her a normal sized portion. I don’t know how long things went on like this but probably over a month with it getting worse all the time. In hindsight what she was experiencing was aversion feedback causing Susan to distrust food.

By the second half of July and into August Susan began to be sick. Vomiting up everything she had eaten. There were no signs that any of the food she ate was being digested. We were tearing our hair out with frustration and after one particular bad night of pain and vomiting we decided to go to A&E at the Lister hospital in Stevenage.

The doctor who examined Susan said it was a classic case of a stomach ulcer and dismissed our concerns that it might be something more serious. Incidently we did find out much later that the incidence of stomach cancer in North Hertfordshire is relatively low so its likely that few young doctors have any practical experience of it. In addition where the cancer invades the stomach lining the tissue becomes very ulcerated. With this type of cancer there is no tumour as such. The A&E doctor put Susan on a saline drip to restore her fluid levels and prescribed Omeprazole an anti acid drug to treat the ulceration and then sent us home.

The drug may have helped with the discomfort but it did not stop most of the symptoms and Susan was unable to eat anything without nausea and vomiting. We thought it might be a food intolerance so we tried all sorts of food and researched the type of foods that are often involved. We really tried hard but it was no good as eventually we realised all food seemed to cause the problem. We went to our GP practice and saw one of those partially qualified doctors who felt Susan’s abdomen and said she could feel some lumpiness. This was a bit of a breakthrough in that none of the other doctors she had seen had felt anything out of order. All Susan’s blood tests had been normal with the exception that her vitamin D levels were very low indeed. This doctor prescribed a high dose vitamin D tablet and referred Susan to a cancer pathway specialist on the strength of what she had felt with her fingers. In due course an appointment came through to see a doctor at the QE11 hospital in Welwyn Garden City two weeks after seeing the GP.

So we had to wait two more weeks and all the time Susan was getting worse and worse. Losing weight and looking paler by the day while we continued to try and find foods that Susan could eat. The only place she did not seem to lose weight from was her belly which was now becoming more prominent like a false pregnancy. During the time between the visit to the GP and the appointment at the QEII we did phone 111 one evening and got an appointment with a doctor at the out of hours service at the Lister. This is a little used service as we found out. When we turned up at the hospital around midnight there was no duty doctor and they had to phone around eventually co-opting a doctor from Bedford who drove over to the Lister. When he arrived he was helpful and prescribed some anti sickness drugs (cyclazine). However he also advised we shouldn’t go to A&E unless absolutely necessary so off we went back home hoping the Cyclazine would work some kind of miracle.

Somehow we got through the days and the date of the QEII appointment arrived by which time we were desperate for help. We were seen by a young specialist cancer doctor and a cancer nurse and I have to say the pair of them were utterly useless. They said they would book Susan for a scan in two weeks time and told us to go home and for Susan to eat soups and soft food. We told them that were it not for this appointment we would be at A&E because Susan was suffering so badly. Once again we were advised against going to A&E if we could avoid it. I protested that Susan needed medical attention right away but these two did not like their judgement being questioned. I asked the doctor if her husband was in the same situation what would she do? They tried to reassure us, they said there was nothing wrong showing up in her blood samples but in my opinion these two were profoundly incompetent in their assessment of Susan’s condition, they did not listen to what Susan was telling them.

We went home bitterly disappointed by their ill considered reassurances and we tried to wait. Two days later Susan had another bad night and woke up with a racing heart so off we went to A&E again – this was an early Sunday morning. This time Susans vital signs were obviously not right and we were ushered into the A&E inner sanctum.

By this time we had become deeply distrustful of young inexperienced doctors. Susan had been told by a friend to insist she was seen by a senior doctor so when another young doctor came to see her in A&E Susan asked what her qualifications were. This doctor then asked Susan if she wanted to see someone more senior and Susan said yes. No doubt the young doctor was put out but agreed to call in a registrar (senior doctor in the NHS) and after only a hour’s wait we finally saw someone who took Susan seriously. He listened and realised Susan was seriously ill. He pulled rank and got Susan a fairly quick CT scan. We were there all day and it was getting late before the scan results and report came back. The doctor gave a copy of the report to Susan with the news that Susan’s Stomach was blocked (pyloric stenosis) and seriously deformed. He made arrangements for Susan to be admitted to the gastrology ward and a senior gastrologist came round to see her and confirmed her condition. The registrar came round one more time as he was going off shift to wish Susan well. We believe he suspected the full seriousness of what was happening. He was extremely nice and warned Susan it would be a long journey. Of all the doctors who saw Susan this man was only one of three who really did their utmost to help. All in all Susan was seen by upward of twenty doctors at one time or another. Most helped a little but some contributed nothing at all, only three doctors went out of their way to help. I was left with the impression that most doctors knew little more than the average man on the street and relied exclusively on diagnostic blood tests to guide their practice. White coats or not most were just pretty ordinary folk.

Unfortunately the ward to which she was admitted had two disturbed patients who made a lot of noise which made it difficult for any patient to get any sleep. You find out a lot about fellow patients while in hospital – all their mental and physical health problems, their home life and whether or not they have any family that cares enough to visit them and what they like to listen to and watch on their screens. The patient opposite Susan was an anorexic with serious mental health issues. She was unfortunately obsessed with watching a medical drama over and over again with the volume on high. The story was very formulaic and could have been written by a suitably educated 14 year old. During the course of Susan’s stay in that ward patients came and went. Some were a joy to have around like Lady P, others were positively unpleasant and rude to hospital staff. Anorexics were surprisingly common and frequent visitors by all accounts. Towards the end of her stay the ward quietened down. The two patients next to Susan were real stoics who faced their serious illness’s with real bravery and courage. Susan being Susan tried to reach out and help the other patients particularly one of the young women with anorexia.

When Susan was admitted we did not know it was a cancer that was causing all the trouble but the person who wrote the CT scan report clearly thought it was a strong possibility though they were not willing to commit without further evidence. That further evidence would have to be obtained from a gastroscopy to see directly what the stomach lining looked like and to obtain tissue samples for a biopsy. To make that gastroscopy possible the stomach contents (mostly secretions by this time) had to be removed so the next move was to insert a nasal stomach drain. This is a tube inserted through the nose, down the throat and into the stomach. This was tried late one evening and was a very uncomfortable procedure. The first nurse to try this failed. At a second attempt by a more experienced nurse it was done. Turns out that the inner structure of Susan’s nose was non standard! The drain would also help stop Susan from feeling nauseous. The drain tube went into a transparent bag that Susan had to carry around with her. We found a suitable textile bag made by my mam years previously to cover this up. After about four days from being admitted she was finally ready for the gastroscopy but during this time Susan could not eat or drink anything so the procedure was getting urgent. All fluids and medication had to be administered via a drip going into a cannula fitted to her wrist.

As part of that first gastroscopy the doctors said they would try to insert a feeding tube past the obstruction. However, this proved too difficult and Susan returned to the ward without it. The doctors said their last resort was to insert a PICC line (peripherally inserted central catheter), This is a tube inserted into the upper arm and fed down a large vein to a position just above the heart. A liquid food can then be dripped directly into the blood stream. It’s a last resort because there is a high risk of infection and its a very expensive procedure. The kit costs around £2,000 and has to be inserted under sterile conditions. So 4 nearly 5 days after being admitted the PICC nurse came to fix Susan up and it wasn’t long after that they hooked up the first nutrient drip and started feeding a white liquid into Susan’s vein. This was probably the first nutrition Susan had had in about 3 weeks. The amount fed into Susan was increased in steps daily to a maximum of 1.5 litres per day. Each bottle of nutrient took a good part of the day to be pumped into her veins so if Susan wanted to escape the ward she had to take the drip with her on its wheeled rack.

Other drugs continued to be administered via a cannula in Susan’s other arm near the wrist. Drugs included paracetamol, the anti acid omeprazole and anti sickness drug cyclazine. Everything had to go in intravenously and the only thing Susan could put in her mouth was the anti-thrush medication Nystatin. Susan wanted me to get hold of some cock-tale umbrellas to put in the Nystatin bottle as it was her only opportunity to taste something with a sweet flavouring.

This was when we first became aware of the extensive diversification of hospital medical staff. Each doctor and nurse seemed to be specialists in a particular area of the body or a particular type of procedure. So in the Lister hospital there is one senior nurse who is the PICC line insertion expert and she does nearly all of them. Other nurses have reputations too and would be sought out unofficially when something specific needed to be done. One time Susan’s PICC line became blocked so a nurse in the ward below was sent for to unblock it.

I could talk a lot about the culture of the staff in Hospital and how it differs between wards. All the staff in a particular ward from cleaners to doctors are assigned to that ward so you could get to know them all and they you. Fortunately Susan’s gastric ward had a wonderful staff team, caring, funny, and talented. There was a lot of humour on the ward and in many ways this contributed significantly to everyones wellbeing.

The results of that first gastroscopy did not make good reading. The lower stomach lining was badly ulcerated and a real mess. They took tissue samples for analysis and initially these looked negative for cancer. However, the gastrologists had seen what they had seen and knew different. They asked for the samples to be examined again, this time with thin section slides under a microscope. While we were waiting for the results the doctors decided to give Susan some antibiotics just in case the ulceration was the result of bacterial action. Unfortunately these antibiotics destroyed Susan’s sense of taste and the flavour of the Nystatin changed to something nasty. The confirmation of a cancer diagnosis came just two days later but once started a course in antibiotics has to be finished for fear of bacterial resistance developing so Susan’s taste did not improve for a long time.

It took a few days before the second analysis came back to us and cancer cells were identified in about half of the samples. This was the first of a number of big blows. A specialist cancer nurse came to see us to tell us the news and outlined some of the possibilities we might expect for future treatment. She reassured us that it was unlikely the cancer had spread and suggested that the most likely scenario was some sort of surgery and this would entail a trip to the Hammersmith Hospital in London which is a specialist centre for gastric treatment. She also explained that cancer cells in ulcerated tissue are very difficult to detect and this is one of the main reasons why stomach cancer is so difficult to identify.

The next move would be a second gastroscopy to get another biopsy which would hopefully provide a clearer analysis and at the same time to try again to insert a nasal feeding tube through the obstruction at the base of the stomach. This second gastroscopy went better and they did get the feeding tube in this time. This was a clever tube within a tube. The outer tube to act as a stomach drain and the inner to feed nutrients into the gut. So now all Susan’s food was once again going through her gut and the PICC line was redundant. However it was left in place just in case it was needed again. It was a constant source of anxiety for Susan because of the risk of infection. Her uncle had died of sepsis after a botched liver biopsy. Late one evening a junior doctor used the PICC line to get a blood sample and the sample contained little droplets of the intravenous food fed to her earlier. Later just before the third gastroscopy Susan persuaded the gastrology team to flush the PICC line out which should have been standard procedure but had not been done.

The results of the second biopsy came back negative so now the doctors were getting frustrated. They knew what they were seeing but could not pin it down with good biopsy results. They started to talk about moving Susan to Hammersmith Hospital for a laparoscopy and cancer staging. This is where a camera is inserted via keyhole surgery to look at the outside of the stomach and take a biopsy of abdomen contents.

Meanwhile Susan took every opportunity to escape the ward. First to the ward day room which had a fantastic view of the countryside between Stevenage and Hitchin. We could see one of the giant Redwood trees planted by William Ransom at the turn of the 19th century. Then there was the cafe on the ground floor which though frequented by hospital staff did not feel like a hospital and always had plenty of seats and light airy spaces.

As time went on and the times Susan was unhooked from the drip became more predictable Susan became bolder and I arranged for friends to give us lifts out into the countryside which Susan craved. At first these trips were made without hospital staff knowlege but they did not object once they knew. Once out in the green environment Susan could relax.

As part of making plans for a move to the Hammersmith Susan’s records including all the biopsy results, CT scan and gastrology data were sent off to the Hammersmith specialists for further analysis. By this time Susan had been in hospital for over two weeks. Later I got a call from the cancer specialist nurse asking me if I was with Susan. This was ominous particularly as she said she would be on holiday that particular day. I was just on my way to Susan’s ward and she said she was coming to see us and when she arrived she was not wearing her uniform.

She then proceeded to tell us that the specialists at the Hammersmith had seen a lot more in the scan than the Lister people had. She said they could see that the cancer had spread to the pancreas and to lymph nodes in the abdomen and that consequently Susan was now diagnosed with incurable stage 4 cancer and Susan would now only be eligible for palliative care. There was a tentative diagnosis of adenocarcinoma. All the talk of surgery and a trip to the Hammersmith was at an end. It was all over. Utterly devastating!

After a while we realised we had been effectively dumped in the no hope pile!

The doctors in charge of the Gastrology ward now had only one concern and that was to patch up Susan sufficiently so that she could go home and they could have her bed back. Some of the doctors were quite honest about this but would also make it clear that being home was the best place for Susan under the circumstances and we certainly agreed with that. In order to send her home they wanted to first remove the feeding tube and stomach drain and decided to try and fit a stent which would open up the obstruction and allow Susan to eat again.

Before the stent was put in Susan was referred to an oncologist and was given an appointment in the Cancer unit while still on the gastrology ward. This turned out to be the most bizarre event of Susan’s stay in hospital. First we were expected to go to the Cancer unit as the oncologist was not going to come to Susan. David, Susan’s brother came on that day specifically to attend the meeting. So when the time came we three trooped off with Susan’s food drip rack on wheels to the other end of the hospital. When we arrived at the Cancer unit reception we were told by the receptionist that the oncologist would require Susan’s paper records from the ward. OK so that was now our responsibility?! In the end I offered to go get them, the receptionist said they would probably not give them to me but clearly no one else was going to do it so back I went and I was lucky enough to find the ward doctor still there and as he recognised me he gave me permission to take the records which I did. This was clearly breaking procedure and a warning that all was not well in the cancer unit.

Then after a stay in the waiting area we were finally ushered into the oncologists office. He then proceeded to backtrack on everything we had been told about the diagnosis. We had to strongly challenge him in consternation at this which he wasn’t happy with. He seemed to want to say that the diagnosis wasn’t that bad and in any case it wasn’t at all clear and more evidence would have to be gathered before any treatment could be prescribed. When you’ve been told you have an incurable cancer the last thing you want is a senior doctor telling you that you need to go back to square one and start again. We did have a go at him and I suggested he should try being honest. Eventually we did get over that plodding attempt at communication and he agreed that the diagnosis was a stage 4 cancer. I suspect he is one of those people who would rather not mention the reality in case it upsets people. Probably not surprising given his job. He rallied after that setback and made a great play about wanting to find out exactly what type of cancer (first name and surname) it was so he could prescribe a suitable course of palliative treatment that could prolong Susan’s life by months or even years. To this end he said he would request a third biopsy to be made at the same time as the stent was fitted. He implied the tentative diagnosis of adenocarcinoma was insufficient. He said there was a very small possibility that the cancer could be a lymphoma which is very treatable. He said treatment was his religion and that Susan looked fit and healthy. He said no-one wanted to see an oncologist but Susan said that on the contrary she was glad to see someone who might be able to help. He then said he was running out of time and we should go. At this point Susan asked him to sign a form that would allow Susan to access a small pension pot tax free. If you have less than a year to live this is a standard benefit and we thought at the time it might give us enough money to take a short holiday. He refused point blank to sign it, no doubt afraid he might be taking a risk of some sort. But to me he just came across as an uncaring coward. He was a strange man with little ability to judge his patients for their capacity to take the truth. God knows why he chose oncology to be his speciality.

Controversy about the cancer diagnosis continued. Fitting the stent was essentially irreversible without major surgery so the small possibility that it might be a lymphoma rather than adenocarcinoma complicated the issue. If it was a lymphoma the gastrologist assigned to fit the stent told Susan he would not be happy about fitting it. During this period we began to mistrust what the doctors were telling us. The uncertainty around the cancer diagnosis was deeply concerning. Initially we had been told the biopsies were inconclusive. Then we were told that further analysis by experts identified it as an adenocarcinoma but the oncologist implied he didn’t trust that diagnosis as it was only based on a second opinion from the very first tissue sample. The second biopsy had showed nothing. Susan was duly taken off to have the stent fitted and she got into a good conversation with the gastrologist who apart from mentioning his concern about fitting the stent also said he had received no instructions from the oncologist to take any further tissue samples. And you have to wonder, was the oncologist just talking out of his arse when he said he wanted more information? To give the gastrologist credit he immediately phoned up the oncologist and inquired about the further biopsy request. The oncologist confirmed that he wanted these doing. The gastrologist then went on to flush out Susan’s PICC line for good measure. That gastrologist was an absolute star and was one of the three doctors that made a difference. But it was clear that fitting the stent had to go ahead. The operation was successful and the feeding tube was removed. Now Susan had to learn how to eat again.

The results of the third biopsy were also negative so the oncologist never did get his definitive confirmation of cancer cell type and we were told this as if it was an irrelevant fact. We were never told any details and the whole controversy of cancer cell identification was skilfully brushed under the carpet by one of the specialist cancer nurses. I wonder even now if that third set of biopsies was ever analysed. Susan and myself were left wondering how much pressure the Lister doctors were putting on the Hammersmith specialists to confirm the diagnosis of adenocarcinoma from those very first tissue samples. Susan and I talked about it much later and we decided that the whole approach by the oncologist was a bogus attempt to inspire some (false) hope. To be kind it may be that the cancer specialists at the Hammersmith had overruled the oncologist at the Lister and he was too embarrassed to admit it, or it may be that he simply did not have time to do a proper job and again did not wish to admit that the NHS was failing. The latter does seem likely. What is true is that our interaction with the oncologist was simply a waste of time and all it achieved was distrust.

After the stent was inserted the gastrologists wanted to make sure that Susan could eat again before they could discharge her. She tried and managed to eat some tiny amounts of soup and a bit of mashed potato with gravy which she declared to be delicious.

To me this seemed like nothing but it was good enough for the doctors. Susan was in fact petrified of eating anything with even the tiniest lump. She was extremely wary of eating more than a tiny amount. She had been warned that with the stent she must only eat soft or liquid foods which she took to heart big time. Only 3 days after the stent was put in she was home. She had been in hospital for nearly a month and for most of that time had not been able to eat anything. The feeding via tube had increased her weight marginally from when she was admitted but she was still thin and pale.

The final job before she could be discharged was to remove the PICC line. There had been talk of using it to administer chemo therapy drugs but this was a red herring. When it came down to it the doctors said it was too much of a risk to let her go home with it. In any case no chemo had yet been scheduled so the PICC line had to come out.

At home the battle was on to try and persuade Susan to eat enough to maintain strength to resist the effects of chemo. This was almost impossible as Susan had developed a distinct aversion to eating and by the time she had collected enough courage together to try and eat more she had already lost another big chunk of weight. She never was able to take “normal” portions of food but did try her best and took servings of liquid Complan food to supplement her meagre meals. Pretty soon the fridge and cupboards were full of high fat foods: cream, creamy deserts, quality meats, butter, soft cheese and snacks that would dissolve in the mouth like Cheesy Whatsits. Food was the hardest thing for me to deal with because I am the chief cook at home but try as I might I could not cook anything that Susan wanted to eat. I tried everything and huge quantities of food got wasted while I tried to tempt Susan with tasty morsels. I read a NHS website statistic that about 80% of all stomach cancer patients basically starve to death.

Medication continued without any real hitch though a lot of trips to the chemist were needed as new prescriptions were made and additional supplies were sought. Susan’s pulse rate continued to be very high and had never really come down to a normal level. Now it seemed to be increasing so Susan decided she needed to see a GP again. So we got a lift down to the surgery and saw only the third doctor who we felt really tried to help. He was very thorough and not only asked Susan to describe all her symptoms but tried to rationalize her medication and made a physical examination which few of the doctors to date had done. After taking all the evidence into consideration he decided there was a distinct possibility that Susan had a pulmonary embolism (blood clot on the lung) and suggested that Susan go to the same day treatment centre at the Lister to get it checked out. Susan was up for this so he did the paperwork and off we went. We were in there most of the day and were surprised how safe we both felt being back in the hospital environment. Susan was eventually taken off for another CT scan, this time just of the lungs. The results sure enough showed a blood clot so full marks to that GP. Susan was prescribed blood thinners and these may have extended her life a little.

Trouble was the scan showed up a lot more than just the clot as we found out the next day with Susan’s second appointment with the oncologist.

Susan felt quite sorry for him! We could tell he had prepared an optimistic story to tell us about how Susan’s tissue type indicated she would be suitable to have immuno as well as chemo therapy. But the results of the lung CT scan the day before showed the cancer had invaded the lymph system in Susan’s lungs causing extensive inflammation. He showed us the layered scan with large areas of milky inflammation. He tried his best to maintain some positivity but admitted that with this latest development the prognosis was very poor. He said Susan would get treatment in two weeks time. Everyone in that room, oncologist, nurse, Susan and myself knew that would be too late. I asked why they could not do it earlier and he made excuses. I suggested that the NHS didn’t have the capacity to work more rapidly. The nurse said yes but he just made more excuses. I really don’t know why some doctors have such an aversion to telling the truth – perhaps they are afraid of people recording their words and holding them to account for the failings of the NHS.

Susan died two days before treatment was due. I have to say that our dealings with the oncologist were essentially a complete and utter waste of time. He added nothing and didn’t listen. He was dishonest and probably made up the story of Susan being compatible for immuno therapy in an effort to appear positive. He provided not a shred of evidence in support of the assertion.

Brian and Richards visit and a new understanding of the word “hope”.

A few days before Susan went into the Garden House hospice our good friends Brian and Richard came all the way from Devon to see Susan over two days. I cant remember much of the first day except it was a relatively short visit at home. But on the second day Brian and Richard brought a gift from Allegra Galvin at Wild Wood Studio. This was a plant dyed quilt of great beauty. I cannot convey how happy this made Susan. Immediately she wanted to take it down to Ransom’s Rec. (the local park) and dance with it. I was unsure if Susan was going to be able to make it there and back but off we all set. I guess we were there for around 2 hours and Susan held the quilt and twirled it around her. We took lots of photos. Susan glowed with joy. To see her face was one of those intense experiences that make lifelong memories.

While we were there other people we knew came through the park and they too were able to share in our joy to see Susan. To end the trip out we went back via the Nature’s Rainbow dye garden which sits beside the park. The garden had become overgrown a bit but was still full of Autumn flowers. It began to rain so we headed home and Susan made it back all the way.

There were other good days too. Meeting Susan’s Tai Chi teacher Chris and his teacher also in the same place in the park. And of course the days we escaped from the hospital. On one escape we went to the Sadie Center in Letchworth where I used to work and keep bees and where Susan and Rejane ran drumming sessions. We met up with Cora Wall the young fashion student with whom Susan had collaborated on a community project to make a plant dyed dress. The Cafe there was officially shut but the manager made us drinks and a smoothy for Susan.

These days confirmed my new understanding of the word “hope”. I had always associated hope with denial. When there is certainty of a bleak future there is little point in “hoping” it won’t happen. But although we knew Susan would not live long I discovered we could “hope” for good days with an expectation that was within the bounds of reality.

Around about the same time Susan received through the post another rare gift of enormous value. A small and super soft blanket dyed with Japanese madder (Rubia akane). This was from Sugimoto San a Japanese natural dyer who had revived the ancient practice of dyeing Japan Red with his native member of the Madder family. See an article about him by Deb Donnoly here. Susan had been instrumental in helping bring Sugimoto and his family to this country where he ran workshops in the use of Akane. he was originally going to come here to North Hertfordshire to run a workshop and have a look at the dye garden but when it became clear that Susan would not be well enough to meet him the plans had to be changed and in the end we were not able to meet him which was another great sadness.

Back at home a “just in case” pack of medication had arrived after Susan was referred to the community palliative care nurses. This consisted of end of life sedatives and pain killers which can be injected. There are supposed to be six palliative care nurses covering the area but two were off sick. However, we were seriously impressed by these nurses who had the power to request prescriptions which came through very quickly. Susan was taking paracetamol all through her stay in hospital and this continued when she got home but after a week the prescribed amount (four x two dispersible tablets) per day wasn’t enough to keep the pain under control and she started taking more during the night when pain and discomfort levels rose. A palliative nurse who came to see Susan was not happy with this and suggested she start taking the Oro-morph (a liquid form of morphine taken by mouth) which had been prescribed earlier. Susan was reluctant but she did eventually try it but only a very small dose which had no significant effect.

Susan’s pain control during the nights rapidly deteriorated. We learnt from a desperate call to the Garden House Hospice help line that timing was important and giving Susan a dose of paracetamol and morphine together in the late evening helped. Often the pain would strike sometime after 10pm and stop Susan from sleeping. She wasn’t keen to take more morphine as it caused a lot of confusion and brain fog. But it seemed the only way forward so the doses of morphine gradually increased. After one bad night I had to call the Hospice again. It was suggested that Susan be taken into the hospice in order to get the pain under control and in only 3 days she was admitted.

Staying in the hospice was a mixed blessing. I felt Susan was being taken away from me again and we had no direct control over Susan’s medication any more as this was all kept in a locked bedside cabinet. The hospice bed they gave her was a disaster, she found it uncomfortable and preferred to sleep in the reclining chair beside the bed. The mattress was changed to something better and she was eventually persuaded to go back to it. This was a very difficult time for Susan and myself because Susan was fighting for control – of medication, of her immediate environment and for her sanity. The opioids were causing her enormous confusion and this made her resist their effects. Larger doses did not seem to work on the pain and just made Susan more confused and more determined to fight them. One of the night nurses recognised what was happening and applied some psychology – basically they started to be reluctant to give Susan doses of morphine and the paracetamol which she had become psychologically dependant on. They would ask Susan what her pain levels were and if Susan said the pain was low they would not give the pain killers. During this trauma I had to stay with Susan through the night a few times and this was hard as I didn’t get any sleep. The strategy seemed scary to me but it worked! After just over a week at the hospice she was discharged back home. Pain control back at home was still patchy but considerably better.

Getting the pain under control was a relief but during her time there her physical condition continued to worsen. When she went in she could walk quite a distance but by the time she came out this was getting difficult. From this point onwards everything seemed to accelerate forward and much of it has become blurred in my mind. Susan continued to have bad nights and confused days. Her ability to do anything required more concentration than she could summon. The arrangement of things in her room was becoming problematic, everything was in the wrong place all of a sudden.

The agony of putting things in the right place

All through Susan’s illness she was intent on creating a “nest” at home where everything could be organised so anything she wanted would be within easy reach of her bed including the bathroom. Even while in hospital she wanted to have everything she needed to maintain control to hand. Initially Susan thought she had only weeks to live so there was a great deal to do. Cleaning the house and emptying the Nature’s Rainbow storeroom nearest the bathroom. Our good friend Tracey Ballard played a key role in clearing that room. I did a deep clean of the bathroom in between long visits to Susan in hospital. I don’t think any of us realised just how close Susan came to not coming home at all.

I spent a great deal of time running around trying to get Susan what she wanted. As a patient in hospital you have so little control over your environment that I knew the only way for her to have a sense of control would be via her control of me. In my professional job as horticultural therapist I had become aware of how important is to peoples mental health and wellbeing. Take that away and depression and anxiety sets in. Clothes, books, notebooks, cushions, puppy-dog, laptop, skin cream, medical meters, paints, pyjamas, blankets etc. All sorts of stuff. Some things I just couldn’t find.

When she did finally get home we didn’t have a bed to go in her nest room. At that time Susan was still able to get up and down stairs so for the first few nights she slept in our bed on the top floor with me. Quickly however Susan got David her brother to take us to “Mattressman” in Stevenage where we bought a single bed and a comfortable mattress. Susan wanted a single bed so there would be plenty of room in the bedroom for visitors. I didn’t like being separated from Susan but her logic was flawless.

Once installed in her “nest” everything had to be arranged just so and to begin with this was generally possible but as time went on and Susan became less mobile this was more difficult and Susan became increasingly frustrated. During the last week it even became hard for her to reach things beside the bed.

At no time did Susan want to rely on us to reach things for her and she would get annoyed if we tried. Similarly Susan liked to keep track of what and when medications were taken. I don’t think that was because she distrusted anyone else to take charge of this, it was simply a matter of maintaining some sort of control. These final days where Susan was losing control were a terrible source of pain for her and myself. Eventually even texting on the phone became really difficult for her and then I got COVID!

And then I got COVID

I had a strange night feeling spaced out and wobbly on my legs and woke up in the morning with a headache and sore throat. Susan suggested I take a COVID test which I did and there it was, the first positive COVID test I’ve ever had. A week earlier I had a COVID booster and flu vaccination but nurses said it usually takes a couple of weeks to provide protection. Susan had had a similar jab before she went into the hospice so was probably better protected but nevertheless she was frightened I’d give it to her and insisted that I isolate from her. I started wearing a mask straight away which probably helped – the test line was weak so probably i was not shedding much of the virus at that time.

By this time Susan was not capable of looking after herself but she was determined to try. I made an emergency plea to Jenny (Susan’s sister) to come over as soon as possible to take over as primary carer. District nurses were informed and they organised some hospice carers to come and visit twice a day. But that first day was traumatic. Tracey (a good friend) had previously arranged to come and see Susan that day and bring some stuff (DVDs etc.). She was not keen to come into a house with COVID but did so anyway and helped Susan get set up to help herself as best she could. But what Susan could actually do was very limited. At one point I overheard her telling herself “Come on, pull yourself together girl, you can do it!”

Susan refused any help from me and it was very painful to hear her struggling by herself. Fortunately Jenny arrived the following day but it was very hard for her to suddenly have to take on this role and she didn’t get any sleep the first few nights, and not much after. Susan complained of being lonely whenever Jenny tried to catch some sleep. I tried to help but Susan remained very reluctant so I spent much of my time in my room upstairs. The carers were good but couldn’t stay long. They would help Susan to get a wash – in bed now because she couldn’t make it to the bathroom. She had already started using the commode before I got COVID.

Susan declined very fast now and after only 5 or 6 days after I had tested positive for COVID Susan could no longer get off the commode and I had to call out a friend to help her get back on the bed. Susan tolerated my presence as I think she knew the COVID didn’t much matter any more. The carers came round later and got her onto the commode one more time but even two of them struggled to get her back on the bed. She didn’t have any strength left at all.

I stayed up with Susan all night for her last two nights. These days and nights were super hard. Twice she pleaded with me, “I’m sick of it now, can I come home now please?” and I had to reassure her she was at home. Then on the final morning it was clear she was dying. She was struggling to breathe and making a lot of noise. Her breaths were full of wheezing and crackling of fluid in her lungs. But despite all this, after dawn, she talked to me non stop for two hours. Jenny went off to get David and their Dad who had stayed overnight at Ann’s house. So, I was on my own now with Susan and trying to catch what she was saying and getting close to nodding off myself. I could catch some words and from the way she said things I could get some of the meaning. She appeared to be pain free at this point and much of what she was saying made made her smile and was clearly humorous. I think she also gave me advice on what I should do after she was gone and I was happy to agree to do it. It was a joyous outpouring which I’ll never forget. A gift of extraordinary generosity from an extraordinary woman. When I started to nod off I seemed to understand everything. But gradually the words started to slow and fade away.

Jenny, David and their dad managed to get there perhaps half an hour before the end for which I will be eternally grateful. I held her hands throughout except when I had to tell David and Jenny that she didn’t have long. I stood behind her the whole time so I could hold her hands which she had to hold over her head to be comfortable. Her breathing changed and the breaths became slower and then stopped all together.

We did this on our own with no one else present and at no point did I feel any need to call anyone else. We all knew intuitively what was happening and that it was all a natural process. I was with my mam when she died and that was an intense experience but being with Susan in her last hours was the most profound experience of my life. My grief is overpowering and impossible to alleviate. But here’s hoping for good days ahead!

 

I wanted to end this with a list of all our mistakes so people could maybe benefit from them.

1) If you are in a relationship don’t put all your effort into work. Take some time just to be with your loved one. Holidays are good for this. Don’t be like us and put them off.

2) Do not delay going to see a doctor if something is bothering you and whatever you do never allow pressure from the Health Service to influence you to cancel a diagnostic appointment.

3) If you get the opportunity always ask for a second opinion and don’t be afraid of asking to see a more senior doctor. And do this at an early stage preferably right at the beginning when you notice something wrong.

4) Currently the NHS is incapable of dealing with fast acting cancers so do not allow yourself to be forced into their streightjacket system of 2 weeks waiting for appointments. Go to A&E, phone 111, see your GP. Don’t wait!

5) Don’t believe what doctors tell you just because they are wearing a “white coat”. Question, ask them how they know that, probe their expertise, remind them that blood tests are not a definitive diagnostic. A good doctor will respect you for it.

And some thoughts on what we did right.

Seek out and maintain good friendships and be generous with your time. Without our many good friends Susan’s illness would have been much more difficult to bear. We had incredible help. Lifts to hospital and out to the countryside, accomodation offered, medication collected from near and far, food delivered, visits, healing, sorting out Susan’s bedroom, wonderful gifts, kind words and advice, cards, flowers and support of many kinds.

Thankyou to all who helped, you made the unbearable bearable.

Susan’s body was buried on the 22nd November at Wilbury Hills Cemetry green burial area in a wool felt shroud manufactured by Yuli Somme at Bellacouche decorated by Louise Drosdzol, Tracy Ballard and myself. The lace leaves were made by my mother many years ago. Mam thought the world of Susan.