Preface
My charity walk and blog have now been going for approx. 90 days which is a lot of miles (54), a lot of writing and a lot of reading. For those of you that joined me at the beginning you will now know a lot about me as a person and will know the trials, tribulations and trauma of what it is to suffer from Cancer via “My Cancer Journey” story which we have serialised over 11 chapters. For those that joined later or very recently who haven’t had the time or inclination to go back to the beginning I have decided to include the story again but into a single read.
Once again I cannot thank enough all those people who made a donation to the fund. Your money has been well spent.
The Full Story
This is not a story to be read and enjoyed. It’s a story of enlightenment and the true story of the dedication and expertise of all the staff in the Surgical and Oncology units at Queens Hospital Romford who saved a man’s life. My life. It’s the story of, not just of my treatment, but the care that was provided and the speed with which my serious illness was dealt with and the successful outcome.
It’s a story of “What Ifs”.
What if my G.P. had delayed his decision to make the original decision to refer me to the hospital by two weeks or maybe more.
What if the first scan (Endoscopy) had been delayed by two weeks or more.
What if the first appointment with a Consultant Surgeon had been delayed by two weeks or more.
What if the times between assessment appointments had been delayed by two weeks or more.
What if the later scans and procedures had been delayed by two weeks or more
What if the surgery I needed had been delayed by two weeks or more.
If all the “What ifs” were added together how would that have affected the outcome of the treatment of my Cancers
What if my treatment had run over into the Covid period, would my treatment have been completed and how might my body have coped with Covid. Would I be writing this story?
If you believe that the “What ifs” is overly dramatic could I point you to the current NHS waiting list times for all treatments not just Cancer. The delays are frightening and lives are being lost unnecessarily because of those delays.
This story has not been dramatised it simply tells of the trauma and drama experienced by me and my wife (carer).
The equipment myself and my hardworking team are endeavouring to raise the funds for, won’t solve all those “What ifs” but it will speed up one aspect of a patients treatment, and it could be the difference between a life saved or a life lost. It will also provide early vital information to help the doctors and surgeons assess the best treatment necessary. This equipment will save lives.
Let me go back. The year 2018 was a vey busy one for me. At the age of 74, working In my garden was becoming more of a chore and less enjoyable than it used to be. My wooden fencing had deteriorated to the point of collapse and too many plants were taking up too much of my time so I decided that the time had come for a complete redesigning of the garden along with brick walls rather than fencing. Plants that were no longer part of the new design I removed and took down to St Patrick’s church, 200 yards away and replanted them in the grounds that surrounded it. It was a solo project and it took me a whole year. The last piece of crazy paving to cover the areas where there would be no plants was laid in the early part of January 2019. I had been disciplined in working from 8 a.m. in the morning, every morning, weather permitting. I was strong, fit and apparently healthy and was looking forward to my new revamped garden coming to life in the coming Spring. I had no inkling of what was lying in store for me. I took my wellbeing for granted.
Within a few days after my project was finished I started to have problems swallowing my food. It was getting stuck halfway to my stomach and Pat, my wife, said she thought I was eating my food too quickly (probably true) and not chewing it properly (probably true). As any dutiful husband would, I heeded her words but the instances began to occur more frequently and the time taken for the blockage to clear was taking longer and longer. Meals were constantly being interrupted and in many cases not finished at all. Several weeks had passed and the problem was slowly getting worse. it was time to make an appointment to see Dr. Rhandhawa, my G.P.
Dr.Rhandhawa was an excellent ‘old school’, a ‘no messing about or dithering’ type of G.P. who knew his trade and inspired confidence, certainly in me. Sadly he has now retired. Having inspected my throat he gave me several possible causes of my problem none of which I can remember now. What I can remember quite clearly was his words “and of course we can’t discount Cancer, I’ll make a referral to have a proper look at your throat after which we will know a bit more than we do at the moment”. That last comment lingered in the minds of both myself and Pat while we awaited the appointment date.
It was with some trepidation that on the 10th March 2019 I duly presented myself at Queens Hospital in Romford to have a Endoscopy and a nurse explained that I would be given a sedative prior to the procedure so I would be awake but would feel no more than a bit of discomfort, possibly some gagging. I would then be taken back to the holding ward for 4 hours before I could be taken home. I had to be accompanied when I left and driving was not an option. Pat and I had agreed a time for her to arrive at the hospital to take me home but she arrived much earlier than I expected and idled away the time in the waiting room. Obviously she was as nervous as I was although we weren’t expecting a diagnosis that day. The procedure appeared to go well but It couldn’t have been more than an hour later when a nurse came and told me that the doctor who had performed the procedure wanted to see me. I firmly believed that I was only going to be signing the usual release documents until Pat was also brought into the consulting room. Neither of us was expecting this and we were both very tense not knowing what to expect.
Gently, we were advised by the doctor who carried out the procedure that he had found Cancer in the oesophagus. Everything went quiet for a moment until I queried at how he could know so quickly. “I’ve been doing this for a long while and I know Cancer when I see it” was his reply. He went on to tell us that the result would be checked officially and then the hospital would contact us to advise the next steps. Whether it was the sedative still in my system I don’t know but I don’t remember feeling any particular emotion. Pat also showed no emotion but later she told me that she just went numb but was determined to be strong for fear of upsetting me unnecessarily.
I don’t know the name of that doctor and never saw him again but he was one of many, many back room personnel that I came across that never see the limelight but whose contribution to a patient’s well being is vital.
Normally when we walk together Pat holds my arm, not a form of endearment, but because otherwise, she says, I am always five steps in front of her but as we walked through the hospital and then to the bus stop we were holding hands. Neither of us spoke a word. What was there to say? The silence continued until we reached home and like all sensible people we made a cup of tea.
I had had time to think while we were on the bus coming home and thoughts raced through my mind. How was I going to tell Roy, my son? How was I going to tell my three grandchildren? I couldn’t tell them and I decided that I would have to leave that to Roy. And what about Pat’s family? Finally I decided that we should keep the diagnosis to ourselves for no other reason than in the circumstances nobody could help and I did not want constant phone calls or visits nor neighbours constantly asking me how I felt. In truth I didn’t feel ill nor did I look ill, I just wanted to go about my life as normal although normal didn’t exist anymore. A few days later I recanted on that decision when I realised that I was not being fair to Pat. There would surely be times when she needed someone to talk to so we decided that we would confide in Pat’s cousin Lynda and her husband Alan, but only on the basis that they were sworn to secrecy. Pat and Lynda are more like sisters than cousins and our telephone bills are testimony to that. Alan and I are good mates and the banter between us flows freely. They live relatively local to us so they were the obvious choice. Quite apart from anything else I could not see the point of having family and friends worrying unnecessarily about something they could do nothing about. A “problem shared is a problem halved” is not always true.
From the moment we had been told that I had Cancer an imaginary big black cloud descended over us so thick it seemed it could have been cut with a knife and there was a lot more black cloud to come over the coming months. Life was never going to be normal again.
Five days later we were sitting with Consultant Surgeon Mr Mukherjee who had confirmed the Cancer diagnosis. He outlined the next steps to be taken which involved a C.T scan, a P.E.T scan and another Endoscopy but this time it would have a special fitment that would not only show the exact location of the Cancer but could also measure its size and probably other necessary data. Mr.Mukherjee was very optimistic that the Cancer could be removed successfully which was reassuring. At worse I had a 50/50 chance of survival and at best the odds were much better. I was also appointed two specialist nurses with a dedicated telephone number that I could call at any time and, if in the event they were not immediately available, I would receive a call back within 24 hours at the latest. Throughout the whole of my treatment we only had to use this facility once but it was another reassurance. All was not lost so it seemed. The black cloud was going grey around the edges.
In the meantime my oesophagus problem continued which by now meant lots of soup and other easily swallowed delicacies.
The C.T scan was done four days later after which Pat and I had to have another serious discussion. Some months previously Pat had booked a two week holiday to Cyprus but felt in the circumstances that she should cancel it rather than leave me on my own. It wasn’t unusual for us to have holidays apart as well as going together. The best of both worlds. She added that even if she went she wouldn’t be able to enjoy it. I didn’t agree. It was my opinion that there was no reason to cancel because I had no appointments or procedures during the time she would be away so it would be a pointless gesture. I accepted that she would continue to worry about me but I didn’t feel ill and pointed out that there was likely to be some rough times ahead and a rest from housework, cooking etc would do her the world of good and stand her in good stead for the days ahead. After much to-ing and fro-ing it was finally agreed that she would go but only if I promised to phone her every night. This was before we had ever heard of the likes of FaceTime and Zoom. Agreement was reached at last.
Pat was due to depart for her holiday on the 27th March but a few days before, I received a call from Rose, one of the specialist nurses, while Pat was out shopping, telling me that a vacant appointment was available for the P.E.T. scan on the day that Pat was going on holiday. Pat was going away early in the morning and the appointment was later that morning which gave me time to get her to the local tube station, wave her goodbye, then get to St.Thomas’s hospital on the south side of Westminster bridge to keep the appointment. I said YES then immediately rang Alan and asked him to look after Amber, our Golden Retriever, while I kept the appointment. It’s approximately just over an hours journey from my home to St Thomas’s so I couldn’t take the chance of Amber being left on her own for too long. Alan agreed straight away as I knew he would, but I had to make him swear he wouldn’t tell Pat. Let’s be clear here. I didn’t lie, I just forgot to tell her. It happens.
On the 27th everything went to plan, I took Pat and her suitcase to Upney tube station, waved her goodbye and then returned home to await Alan. I arrived at St.Thomas’s on time, was seen to on time and was on my way home in no time. Before it was time that evening to call Pat I received another call from Rose asking if I could travel to ‘Queens’ the next morning as Mr. Mukherjee wanted to talk to me. I thought that 8p.m. was a bit late for a call but then put it out of my mind. I also forgot to tell Pat about that during our phone call. It happens.
The next morning my Consultant explained that the results of the P.E.T . scan had identified an anomaly and it would mean undergoing a Colonoscopy examination to identify what that problem was. Not another problem and procedure to go through was what went through my mind. What choice did I have but to agree? The pressure was obviously affecting my memory because I forgot to tell Pat about the latest development.
The procedure was set to be done 5 days later. The appointments were coming thick and fast and I barely had time to get used to what was going on.
Like the Endoscopy, the Colonoscopy is done under a sedative so some mild discomfort is all I would feel. What went before was the worst part. In order to “clear out” my bowel it was necessary, the night before the procedure, to take a laxative mixture. Litres of the nastiest liquid I have ever tasted had to be downed. By the morning I was drained of energy and much more. Once again, I had to call on Lynda and Alan as I had to be collected from King George’s Hospital and as usual they were there for me. The sedative was to be administered in a holding ward while I was awaiting my turn but my veins decided to go into hiding. It took three different nurses of increasing rank to finally succeed. This was to become an increasing problem as time went on. I felt exhausted even before I was taken into the theatre. Procedure completed and after one hour resting in the holding ward, I was taken into to see the doctor. Deja Vous. “We found three polyps which were not cancerous, but may have become cancerous later, which we have removed”, I was told, a sigh of relief from me “but the bad news is you do have a cancer growth. We will send the results to your Consultant”. This time I was stunned. I had been optimistic of being cured of one Cancer but two was surely too much to survive. When I was finally released into the custody of Lynda and Alan I looked a wreck. It was hard enough telling them the news, but how was I going to be able to tell Pat and when?
Back home, Alan offered to stay with me but I had to decline, all I wanted to do was sleep but first I would have to phone Pat later that evening. Would you believe it, I forgot to tell her what had happened that day. It happens. Many weeks later Pat told me that that evening was when she suspected something was not quite right. It was my voice that gave me away but she had assumed it was depression at me being on my own. Amber knew more than anyone else that something serious was going on. She was even more loving than usual and rarely left my side during those two weeks. Women and dogs share a special sense in that respect.
Things had changed. Dramatically. On the 6th April there was another meeting with Mr. Mukherjee and Rose but also present was Consultant Surgeon Mr.Boulton. The two surgeons had conferred about how my treatment could continue and I was given three options to choose from. Remember that Pat was still on holiday and was not aware of the second Cancer. I could have waited for her return to discuss it with her but I wanted no delays, the quicker the decision the sooner the nightmare would be over, one way or another. Every operation no matter how seemingly minor carries a risk but there are degrees of risk to consider. The Oesophagus operation carries quite a high risk and also what has to be considered is the chances of infection and just as important how quickly I could be operated on.
The three options were:-
Have the operation to remove the cancer of the Oesophagus first, allow time to recover, then have the bowel operation.
Have both cancers removed in a joint operation carried out by both surgeons. This operation would take approx. 12 hours (9 hours for the Oesophagus and 3 hours for the bowel). The risk for this option would be higher because of possible internal seepage which could increase the infection risk.
The third option was to do nothing. “Which cancer” I asked, “will kill me if I take this option?” “Toss a coin, either way you will be just as dead.” No mincing with words there.
I had no hesitation in choosing the second option mostly because at 75 I couldn’t afford a prolonged spell of treatment. Successful treatment or not I didn’t want to waste any of the time I had left in this world. For no reason I can give you I still believed that the skill of Messrs. Mukherjee and Boulton would see me through. If not, then, we all have to die sometime and I doubted that I would be the exemption to the rule.
That agreed, my next appointment would be with Professor Tahir to discuss the Chemotherapy I would have to undergo prior to the operation. After that I would have one final procedure to give additional information to the surgeons, an Ultra Sound Endoscopy.
The appointment with Prof. Tahir took place on the 10th April and was basically a question and answer session.
Two procedures and four appointments in the two weeks that Pat was away is good going by any standards. I hate to think, that had the periods between these been much longer, what difference it may have made to my chances of survival. Delay is too often the difference between life or death.
It was late the evening of the appointment with Prof. Tahir that Pat arrived home from her holiday. It was immediately apparent to her that I was not at my best. The bags under my eyes and drawn features told their own story but it was too late that night to tell her the truth of what had happened during the last fortnight. I decided to let her have a goodnights sleep first. Unsurprisingly a good nights sleep completed eluded me. How was I going to tell Pat in the morning? What could I say to ease the pain of what I had to tell her?
Morning came and it was crunch time. I could tell by Pat’s appearance that the holiday had been beneficial and that on some level, she had enjoyed her two weeks away. Unfortunately there were other things to discuss first. There was no way to dress up the facts so I simply said “there is more bad news I’m afraid, I have Cancer of the bowel as well”. There was no emotion but I could see from the look in her eyes the same shock and disbelief that I had already experienced. The same thought was going through her mind, just as it had mine, that there was no chance of surviving two Cancers. Like the black cloud the silence was so thick you could cut it. In a way it was lucky that the Ultra Sound Endoscopy was scheduled for later that morning and it gave us both the chance to collect our thoughts. I would like to have been a little more descriptive of things like the weather etc. but the truth is that the Cancers and my treatment seem to have extinguished everything else.
As previous, it was agreed that I would go to ‘Queens’ on my own and Pat would come up later to collect me. The sedative was administered but the procedure was more uncomfortable than the first time, possibly due to it being a somewhat more extensive procedure. I did experience some gagging but this was nothing in comparison to what was to come later. An hour after I was taken to the resting ward I was wondering whether there was going to be any further unpleasant surprises but gladly not on this occasion.
The time had come to accept the possibility that life, especially for Pat, might be changing. I had to put my affairs in order. For the next few days I was glued to the phone and making notes on all the bureaucracy that Pat would have to contend with in the event of my demise. There was no point in trying to hide from the possibility so I phoned every company or establishment that Pat would need to contact and had them talk me through which department’s, telephone numbers and documents she would need to inform them of the new situation she could now find herself in. Going through the bureaucracy process after a loved one has died is the last thing anybody wants to be going through so I wanted to make it as painless as possible. We even visited three funeral parlours to determine the service that I wanted and the prices of each. We were amazed at the difference between them for exactly the same service. I had already settled on the music that I wanted played and each parlour was amused that I wanted the people leaving the service to do so dancing to the Conga. I wanted my life and death to be celebrated and for people to remember me as the person I am and was for good or bad.
Visiting funeral Parlours is not normally a bundle of laughs even if it was being done with the best of intentions. Pat’s job, as she saw it, was to support me in any way that she could and that included staying strong. The stress on her wasn’t obvious but it was there being very carefully hidden. Every time we had a meal she was watching for the signs of my difficulty in eating. Talking about anything related to the future was extremely difficult and upsetting but sometimes it just could not be avoided.
A pre-assessment meeting took place with Prof. Tahir on the 17th April and on the 24th my first chemotherapy treatment was administered. A blood test had been taken some days before and the worrying trend of the shy veins continued. I have never had a problem with needles and during my life I had given over 100 blood donations so I can only assume that my age was a factor.
I arrived at ‘Queens’ at the appointed time and took my place in the short queue at the reception desk. I didn’t know what to expect and trepidation is the only word to describe the way I felt at that moment. I watched the lady receptionist and noted how efficient she was and the professional but friendly way she dealt with the people soon to have, like me, their Chemotherapy treatment. Having been ticked off the list I was asked to wait in the waiting room until my nurse became available. As I walked from the reception counter I thought to myself that if the rest of my experience that day was going to be as good and professional as this lady was I really had nothing to worry about. I later learned that the receptionist’s name was Tracy and I don’t believe you could find a better person for that position than her. I described her as the shop window to the Chemotherapy unit and have never forgotten her calming effect on me.
Let me say straight away that Chemotherapy is an essential part of many Cancer sufferers treatment despite its well known side effects. I had been given a list of those side effects most experienced by patients but it was far from a comprehensive list. Each person however responds to the treatment in their own unique way. Everybody’s experience differs. Even patients being given the same treatment react differently. Don’t think that you know what a person is going through if you know they are having Chemotherapy treatment. You don’t and you can’t. Only that person knows and rarely do they have the words to articulate how they feel about what they are going through.
Chemotherapy doesn’t target Cancers directly, it is indiscriminate and attacks every part of your body and organs including your brain. I described it later to Prof. Tahir as being medieval and he agreed but rightly pointed out it was the best we had and it works.
The Chemotherapy course was to last for 9 weeks and was divided into 3 replica segments. On day one the cocktail of drugs were administered intravenously which took some hours. Every day after that in the 21 day cycle I had to take two tablets at home, twelve hours apart, and to use gloves when doing so. Toxic.
The treatment on that first day went without a hitch and I felt fine. Pat had arrived at the hospital some time during the treatment and sat with me as we watched the nurses constantly on the move setting up drips and making sure that all the patients there, maybe 20 or possibly more, were alright. No loitering in that department that’s for sure. The treatment over, under Pat’s watchful eye and with her support, we made our way home on the bus.
“How are you feeling” Pat asked when we got home “okay, it wasn’t nearly as bad as I thought it was going to be” I replied. Famous last words.
I went to bed that night expecting to sleep like a baby and I did, at first. The events of the day had drained me of energy and I felt so tired but at some point during the night I sneezed and, for what seemed like an eternity, although it was probably no more than five seconds, I had flashing lights and siren and bell noises going off in my head. The same thing also happened each time I coughed. That wasn’t on the list of side effects I had been given and was so unexpected it was frightening. This only happened on the three nights that I had been fed the Chemotherapy cocktail intravenously. Many of the days during that 9 week period I was like a zombie, I couldn’t think properly or think at all in many cases. It was only with Pat’s help that I could manage to get in and out of bed, in and out of the shower or up and down the stairs. My taste buds disappeared completely and were followed by my appetite. I went through a period of constipation that became so acute that, during an assessment interview with a nurse from the Oncology unit, it was so noticeable that I was unwell I was rushed into the unit where the Chemotherapy was administered and a doctor summoned to prescribe something to help me. At home I wasn’t capable of doing anything at all. Everything was now having to be done by Pat which was not only physically demanding but mentally stressful too. Watching someone you love go through what I was experiencing was going to take its toll but somehow Pat did it without a murmur and I felt too ill to notice the effect this was having on her, not that I could have done anything about it. I had no aches or pains I just felt Ill but couldn’t explain in what way. Pat stopped asking how I felt because there were no good days just days that weren’t quite as bad as others. The whole Chemotherapy session was a nightmare except for one amazing incident. It was the only morning that I woke up with a clear mind and was lucid. In my mind was a short story completely written and etched on my mind. I am told, although whether it is true or not I don’t know, that this happened to Paul McCartney but in his case it was the music and lyrics to a song. Having got down stairs and comfortable I got out my iPad and started to write the story down. After 15/20 minutes or so the lucidity vanished and I became incapable of proceeding any further so it was left barely started.
During this Chemotherapy treatment I had to attend several assessment interviews either with a nurse or Prof. Tahir and also with my two surgeons. A C.T.scan was carried out just before the treatment was completed and blood tests done although the problem of finding a vein was becoming more frequent. A close eye was being kept on me on a regular basis but I was becoming exhausted. To my immense relief, on the 26th June my Chemotherapy treatment was over but Pat’s problems would to continue for a long time to come. The pressure on her was relentless and there must have been times she despaired but she never let on.
The next stage of my treatment would be the surgery to remove the Cancers but before that there was no real time to rest. A meeting with both surgeons and the anesthetist took place along with an ECG and a heart scan. The anesthetist was present to ask my permission to use a new method of administering and controlling the anesthetic which was being trialed which I had no hesitation in agreeing to.
I still had not told my family about the Cancers but I couldn’t put it off any longer. My son and his family live in North Yorkshire so luckily all our contact throughout this period had been on the phone. I arranged to meet Roy in a little pub next to Blackfriars station in London and it was there that I broke the news. His shock was tinged with annoyance that I had not told him earlier but reluctantly accepted my reasoning for this. I had also made up my mind that, other than Pat, I wanted no visitors in hospital before or after my operation. I didn’t want my grandchildren especially to be upset at the sight of me. I’m hardly a work of art at the best of times
The surgery date was set, the 26th July. All my affairs were in order and a letter given to Pat expressing my love for her to which I added a P.S stating that if I survived I would deny all knowledge of the letter. Got to keep her on her toes. There was nothing left to do, it was now in the hands of the surgeons and their teams. It was crunch time.
My understanding is that the Oesophagus operation took place first (9 hours) through my back, followed by the Bowel operation (3hours) through the front, and both by keyhole surgery. I have heard any number of Cancer survivors proclaim that they have ‘beaten’ Cancer but I don’t prescribe to that view. Whilst those two surgeons and their teams worked tirelessly to remove the Cancers, probably not even taking the time for a Tuna and Sweetcorn sandwich, what was I doing? I was fast asleep, hardly a worthwhile contribution.
The drama came immediately before the operation in an ante room to the operating theatre. This was the room where the anesthetic would be administered ….if a vein could be found. There was the problem and it took several attempts before success was achieved and, I am convinced, a few curses made. Obviously I was fully conscious at that point and starting to get really concerned. Please don’t abort the operation I prayed, I can’t go through all this again. Minutes later I was oblivious to everything.
I awoke in the HDU (High Dependency Unit) ward and the first face that I saw was Pat’s. I have no idea what I must have looked like but Pat later told me she had counted twelve tubes in me. I never found out what they were all for but I don’t think there was one orifice that didn’t have a tube in it except for my ears. The stoma bag that had been fitted was not apparent to her at that point and would be removed at a later date. This was the first hole in the black cloud which hovered over us for months. A glimmer of light at last.
After two days I was transferred to a general ward which I still believe was too early but can only surmise that pressures on bed space could have been the reason. The week in the general ward not easy. At first I was fed intravenously but slowly was introduced to clear liquids, then onto other liquids and finally onto some more solid food. I hardly ate anything. The food simply was not to my liking and I had very little appetite anyway. I couldn’t get out of the bed without the aid of a nurse because of all the tubes that were attached so trying to get a little bit of exercise by walking around the ward was difficult. In addition I was bored to tears. I got by because I had Pat’s daily visit to look forward to. During my time in the hospital I had to have regular blood tests which became another problem because of my shy veins and invariably, each time, a very experienced nurse of some sort had to be enlisted. The time came however when I was deemed fit and all the tubes had been removed but I was not allowed home until I could satisfy the physiotherapists that I would able to cope in my home environment and could walk unaided both up and down a flight of stairs. At every opportunity I insisted that I be helped out of bed and walked circuits, adding one more every time, around the nurses station until I could fulfil their criteria. I wasn’t going to stay any longer than was absolutely necessary. I was on my way home two days later on the 5th August.
I now had to make sure that I didn’t get an infection so Pat set about, once again, scrubbing the house from top to bottom. The pressure on Pat was being ramped up again.
The speed and the meticulous care I had been given right from the start of my original diagnosis had been amazing and had been as good as I would have received anywhere in the world. Perhaps anybody reading this will understand more why I feel so strongly about giving something back to all those wonderful and hardworking people who saved my life and are saving lives every day of the week. month, year.
A major problem then, as it is now, is that any ‘after care’ is not automatic and not joined up. It was up to us to arrange for district nurses to visit to clean and re-bandage my surgical wounds but the calls on their services were such that they weren’t always available. This is not acceptable and politicians need to put aside their party differences to put together a comprehensive plan that operates in a similar way to the rest of the N.H.S. Yes, it will cost and it probably won’t be perfect but the care of the people of this country should be paramount and should not be fractured and fragmented as it currently is. Pressures on families, especially carers, are already high without having to spend time trying to organise help that should be easily accessible to them. While trying to raise the funds for ‘Queens’ is my specific goal, raising awareness of this issue is also very important to me.
During the time I was hospitalised Mr Mukherjee and his team visited me everyday and Mr.Boulton and his team every few days. Given how precious the Consultants time is I felt very privileged. Pat had visited me every day despite me protesting it wasn’t necessary. The journey to and fro to the hospital was tiring but at least she had some time at home when she could get on with other things and even have a rest for a few minutes now and then. It’s hard to imagine how she kept going but things for her were going to get harder not easier.
Home, sweet Home. Amber was so excited to see me but Pat had to shield me from her in case what stitches remained got torn or she knocked me over which wouldn’t have been difficult given that I had lost a great deal of weight.
Pat was now back to having to do everything just as she had during the Chemotherapy treatment. The difference was that I could hold a conversation and at least be somewhat sociable, not that Pat had much time to sit and talk. We’d been able to do plenty of that in the hospital.
Because we weren’t going to be able to rely on the District nurses being available every day, a nurse at the hospital had shown her how to give me a daily injection using a pillow as the patient. No vein was necessary but I’m not sure which of us was the most nervous when the first one had to be done. As it was she did it perfectly and it became just another part of our daily routine.
Within a short time, however, the surgical wound in my back started to become painful. When Pat looked at it she wasn’t happy and suggested we go to the hospital to have it checked but I felt it could be left until the appointment that had been made for me at what was termed the “hot clinic” which was in a couple of days. Bad mistake. By the time we arrived at the ‘hot clinic’ the pain was considerably worse. The doctor we were due to see had been called away to an emergency and while we waited, for what seemed an eternity, the pain became unbearable. When we finally got to the doctor and he looked at the wound, he immediately sent the nurse assisting him for items to clean the wound which had become badly infected. This had been caused by the fact that the hospital had removed a number of the stitches before I had been discharged but had left some in place because the wound hadn’t completely closed up. The doctor removed the remaining stitches and dressed the wound. The relief was palpable.
More assessments were to come and more procedures were to follow at a pace.
On the 14th August I had a Gastro X-ray taken then later, after just two weeks, I underwent, much earlier than had been planned, further surgery to my bowel to right a minor problem and remove the Stoma bag. Another five days in hospital and more visits from Pat to heap even more problems on her shoulders.
After my discharge it was time to meet up with Mr.Mukherjee again. At this time I believed my treatment was over and it was purely a matter of recovery. Wrong. It was felt necessary for me to undergo a further 9 week session of Chemotherapy. I was very much against the idea bearing what I had gone through during the first session but the Consultant explained that it was important to kill off any Cancer spores that might have remained but could not be detected. He and I debated this for nearly an hour but the score remained at 1-1. I turned to Pat to seek her opinion which put her in a very difficult position. She didn’t want me to go through any more suffering and so her advice to go through the Chemotherapy again caused her great anguish. It was 2-1 and time had run out. No penalty shoot out beckoned. I had no choice but to reluctantly agree.
Over the next few weeks I had to attend several more pre-assessments with Prof. Tahir who decided, after I had described my experience during the first session, that he would lower the drug dosage just a little.
The second session was due to start at the end of September but had to be aborted because I could not provide the necessary blood test sample. The veins again. A few days later a successful blood test was obtained and I arrived at the Sunflower suite to meet up again with Tracy and ready to undergo my treatment. Disaster. The Cánula couldn’t be inserted so the treatment had to be aborted again. Just when it seemed that the sun was breaking through the black cloud there it was blocking out everything I was mortified and when I was advised that the only way forward was to have a Pic line inserted in my arm my resolve had hit rock bottom. I didn’t know what a Pic line was or what it entailed. I left the hospital knowing that I would be home before Pat left to meet me but as I stood at the bus stop I was as close as I could be to suicide, the many months of stress had come to a head. My despair was that great. Was this ever going to end? I sat on a bench for sometime before I realised I didn’t have the courage, nor did Pat deserve such selfishness after all she had gone through, to do anything other than get on the bus and go home.
Not for the first time it was left to Pat to pick up the pieces and maybe she felt in some way responsible because she had advised me to have the extra Chemotherapy, I don’t know, but she persuaded me to have the Pic line inserted and complete my treatment. It turned out that putting the Pic line in was a very quick and painless process and although it had to stay in place for nearly three months it never caused me any problems.
I now had to start the process again, first a blood test then back to the Sunflower suite. By now we were into October. As much as I liked Tracy I would rather had been some place else and couldn’t wait for the next 9 weeks to go by. It was still a bad experience but not as bad as the previous session although the pressure on Pat was continuing unabated. We got through it, or rather Pat got us through it. There is absolutely no way I would have coped without her and I often think about how those people who have no one to care for them and to help them both physically and mentally, manage
On Christmas Eve I took my last Chemotherapy tablet and had a C.T scan which showed I was clear of Cancer, although I wouldn’t get the news until after the New Year because of the Christmas festivities. What a wonderful Christmas present, belated though it was.
A fairy tale ending? Yes, in a way, but it wasn’t the end. My scars are visible but Pat’s scars are mental ones and are not visible. Mine might fade but it’s doubtful that hers ever will. Even now she watches me like a hawk while I’m eating for signs I might be suffering in some way. Having lost a part of my Oesophagus, a part of my stomach and a part of my bowel my lifestyle would have to change. I had lost nearly two and a half stones and was advised it was unlikely I would ever put the weight back on. On one occasion, after I had had a shower, I plucked up the courage to look at myself in a full length mirror and
I was shocked. I have never been a vain man with regard to what I look like and don’t believe that even a Savile Row tailor could make me look any better than a ‘bag of spanners’ but a ‘bag of bones’ I was not going to put up with. That would have to change.
I was advised to try and go for walks to help me get my strength back, but within weeks Covid came along. Being on the ‘at risk’ register I was confined to my home, as was Pat, obviously. I would not have survived Covid in my frail state had I been infected by it. This placed even more pressure on Pat as she constantly and relentlessly cleaned everything in the house to prevent any risk of infection. I was confined to the house and Pat only went out when absolutely necessary. It was still not possible to lead a normal life although ‘normal’ was going to have to have a new interpretation.
I cannot, even now, enjoy a restaurant meal because I can only eat a very small amount at a time. Trying to explain this to waiters/waitresses is embarrassing although I’m sure they understand but I do not want to deprive Pat of her enjoyment so I take her out then sit and watch her eat. At home it is a case of ‘little and often’ so I’m constantly snacking and on holiday it has to be buffet style so I can pick and choose what I want and how much.
I can now work in my garden and do the housework duties I am responsible for but I have to limit what I do and take plenty of breaks. The same applies to walking.
This doesn’t prevent me from enjoying life in general and has prompted me to do some new things such as painting and to continue with my drawing, reading and listening to music.
To go back to something I mentioned when I was going through the first phase of Chemotherapy, in an idle moment during Covid I came across the short story that I started to write but never finished. Amazingly, the story was still etched on my mind so I finished it. It was a simple and gentle story that everybody who read it said they enjoyed. My eldest granddaughter pressed me to write another and I then went further to write a novel which I had two offers to publish but declined for financial reasons. Subsequently I have realised that it isn’t good enough anyway but hope to go back to it some time in the future to improve it.
Please donate via my JustGiving page
