My Cancer Battle
Wednesday 26th July 2017 is a date that will be forever indelibly etched in my mind. It was the day Mr David Monk, consultant general and upper GI surgeon at the Countess of Chester hospital told me I had oesophageal cancer. Cancer, the very word freezes you even thinking you could contract it. When I was told I had it I went numb, the cold realisation I had this deadliest of diseases in my body slowly manifested itself in my head over the next few hours because it doesn’t hit you straight away, this happens after you leave hospital with the consultant’s words still resonating in your head. I can’t remember what else Mr Monk said to me in the fifteen minuets or so meeting I had with him, I had to ring Kate Holloway, the head GI Macmillan nurse who was also present that fateful day and ask her what I was told by Mr Monk. However, believe it or not, this wasn’t the worst day as i’d already prepared myself that I may be getting some bad news on this day in July.
The worst day was a couple of weeks prior to 26th July when after seeing my GP about a food swollowing problem I had been experiencing for about three weeks, Dr Magrath (My GP) examined me and told me he was going to send me for an endoscope test as soon as possible as he wanted to make sure that my problem wasn’t cancer. I must admit I was puzzled by this but not afraid in any way as I didn’t have cancer, thats something that effects people who are unhealthy and smoke (I was reasonably fit, healthy and didn’t smoke) The following Monday I went to the Countess of Chester hospital for the endoscope test. Once the test was complete I was sent to the recovery room where I was to wait for the endoscopy practitioner to join me with his report on what had been found. After about 20 minutes or so the endoscopy practitioner entered the room with his nurse colleague and I thought this doesn’t look too good and I was correct. I was told that they had found a tumour in my oesophagus and that this tumour may well be cancer. This was the worst moment for me, the realisation I had a possible cancerous tumour inside my body and the fact I may have cancer, yes, that word again cancer, it’s horrible. I was upset, holding back the tears and unable to really comprehend what i’d been told. When the nurse started telling me that it was amazing what they could do with modern drugs and surgery nowadays, I knew i’d got a big problem. I had to wait another couple of weeks before the confirmation I had indeed got cancer, undergoing more tests and living with the uncertainty whether I had got the dreaded disease or not.
On the day my cancer was confirmed, I left the hospital and phoned my brother, some family and friends to tell them the dreaded news. I then walked back into town in a fit of different emotions. As I walked up Liverpool Road from the hospital a funeral cortege went past on it’s way to the crematorium which believe it or not made me laugh as I thought how ironic is that. I was very angry at first as i’d got this horrible disease. I was upset, scared, worried, confused, what do you do when you’re told you have cancer? Go through a lot of different emotions thats what. I was eager even at this early stage to know what the doctors were going to do next to fight back against this uninvited thing in my body, I wasn’t going without a fight and I wanted to start fighting back. I was given dates for a CT scan and another endoscope test over the next couple of weeks but I also had another very important job to sort out, I had to get my own head straightened out for the battle of my life. The day after my cancer diagnosis I went to a place called Lake Vyrnwy in North Wales with a good mate of mine (Bob) This is just one of my favourite places for disappearing to with my cameras to shoot personal work or to just chill as it has a magical vibe to it, it’s a wonderful place. I did a lot of thinking that day unsurprisingly, I wandered off on my own when I knew I was going to break down and cry, I took some photos which helped me think, I did some more thinking and then some more thinking and slowly the news I had cancer began to sink in but so did the seeds of my attitude towards it which would become more prevalent in the coming few weeks with some rather good news. But for now, I needed to get the new tests done before another meeting with Mr Monk my consultant. Something else I realised that day too came to life via a phone call to another good friend of mine who had been in remission from cancer himself for five years. My good mate Al Lloyd had a massive battle with cancer some five years earlier. He’d been ill with a tumour in his stomach for two years before being diagnosed himself, his cancer was a lot worse than mine but he pulled through. That phone call that day and subsequent visits gave me inspiration in my own battle. Two pieces of advice he gave me were you can’t fight your battle with cancer on your own and do everything the doctors tell you to do. I am doing exactly what the doctors have told me to do naturally. He was spot on that I can’t fight this thing on my own, you really do need the support of family and friends. Just talking to someone about my cancer certainly has helped me come to terms with it especially the Macmillan support team who have been fabulous and so helpful. One more thing came out of the Lake Vyrnwy trip, my cancerous tumour got a nickname, alien.
After I had the new CT scan and endoscope ultrasound tests, I had another meeting planned for Tuesday 15th August to see my consultant surgeon at the Countess hospital in Chester. I don’t think anything significant happened in the world this day but for me, it was a fantastic day. I had been told prior to this meeting that my tumour was small and no signs of it spreading into other parts of my body had been found. It’s when these tumours decide to go walk about in your body that the real problems start to manifest themselves. My last meeting with Mr Monk was in what I can only describe as the condemned room in the Countess hospital. To say it was gloomy, grey and drab fitted the occasion well. This time the room was a well lit office with a big window and it was a sunny day. Surprisingly I wasn’t nervous that morning, I just wanted to know what stage the tumour was at, was there any spread ditected after the two new tests and what was going to happen next as regards my treatment. I walked into Mr David Monk’s office with Kate Holloway and straight away I sensed a better mood from them. I sat down in front of Mr Monk after shaking hands and exchanging pleasantries he started to talk about my cancer. I will try and write down what he said word for word, it may not be 100% accurate as i’ve been through a lot since then but it means a lot to me so here goes. “Right Mr Hughes you have cancer of the oesophagus as we already know. We (Mr Monk and his various expert colleagues meet once a week to discuss their patients treatments) have studied all your test results from the CT scans, endoscope and blood tests and we can’t find any spread from the tumour into any other parts of your body which is great news and I can say to you that you are one in four people who will sit in front of me today who I can say to you that you’re cancer is curable” I replied “Oh goody” The man who gave me the worst news in my life a few weeks earlier had just given me some unbelievably fantastic news and all I could say was “Oh goody” It hadn’t sank into me yet though, it never does, it’s always later. Mr Monk continued to tell me that I had all my tests so quickly as they wanted to get going with the treatment as they suspected the tumour hadn’t spread and that I had done myself a big favour by going to see my gp so quickly then being referred to the hospital. “How do you feel” he asked me at the end of the meeting, I replied “Well I had wanted to lose a couple of stone in weight but I hadn’t intended to lose it by catching cancer” I laughed, Mr Monk & Kate wanted to I know but just held back and smiled. I left Mr Monks office and went to the Macmillan information centre they have in the hospital to wait for Kate Holloway to join me as I needed a grant form from them. Kate joined me and asked how I felt, “daunted” I said. Kate replied “Daunted? why, Mr Monk has just given you some fantastic news, you’re cancer is curable, normally i’m sitting here with patients talking to them about palliative treatment” Kate continued “It’s plain sailing from here, you’ll start chemotherapy in a couple of weeks, then you will have your operation to remove the tumour, then more chemotherapy after that and thats it” I was still feeling daunted, but I now knew what the plan was going to be and this made me feel better. Being told my cancer was curable started to filter into my mind as I was leaving the hospital to make my way home. As I made my way down the main corridor to the exit I started talking to myself in my mind “Right you little bastard (alien) thought you could just invade my body and spread your germs everywhere willy nilly did you, well you little shit I’ve got some news for you, we’re coming to get you and you is toast. If you think i’m going to be another one of your statistics think again, I aint going to be” I was smiling and the start of my positive attitude to this and the fight back had begun. I was about half way home and I burst into tears at the relief of what i’d been told earlier. Told you it always sinks in later on didn’t I. I also telephoned my GP Dr Macgrath and thanked him for helping to save my life after sending me for the first endoscope test. He said “I was just doing my job Mr Hughes” No, he did more than that and I will be forever grateful to him.
Monday 4th September, my first chemotherapy session. The previous day I was working in Manchester on a job that lasted all day plus I had to do a lot of editing of my photos that evening to get everything cleared for the big day on Monday. This helped a lot as it took my mind off what was waiting for me in the next twenty four hours. I went to bed at 12.45 that evening extremely tired after a very long days work and ready for some sleep, got into bed and bang! I couldn’t sleep, my mind just kept thinking about the start of my chemotherapy in a few hours time. Prior to this, i’d been sleeping fine, not at all worried about the fact I had cancer, positive in the fact i’d been told I was curable, but for some unknown reason this night my mind went awol. If you are about to start this journey reading this, go & see a psychiatrist before starting chemo, it may help you sleep. I don’t know why I was worried as my first session of chemotherapy was painless (Apart from the injections prior to my pic line being put in to my arm) You sit in a chair for six hours attached to a drip which administers the chemical into your body. Like being told the news you have cancer sinks in after you’ve been told, chemotherapy hits you later on too. It was Thursday after my first treatment that I felt worse, feeling lethargic, tired and always thirsty. This is normal, it can be a lot worse. Chemotherapy effects different people in different ways, it certainly helps if your young, fit and healthy as you will be able to take it better. It will also play havoc with your taste buds and you will find foods you once enjoyed you will go off then find new foods you prefer all of a sudden. Personally I went off ice-cream, biscuits (made my mouth too dry) orange squash, soup (even though I made a freezer full of home made soup and was given a parcel of Waitrose soups, thanks Helen and Van, I found I much prefered carbonated water (Get this from Aldi, £0.89 for 6 bottles) pineapple, satsuma oranges, I found these countered the dry feeling in my mouth caused by the chemotherapy really well. I can also recommend sherbet lemon drops for countering the metallic taste from chemo. It can have a detromental effect on your appetite which is why you are given strong steroids to counter this. I found my appetite went in the opposite direction and I found I actually ate more than I would normally which is a good thing. A big bowl of porridge with banana would be my normal breakfast but now i’d have this followed by four rounds of toast, pineapple fingers and sometimes a bowl of rice crispies. Lunch would be bigger as would my evening meal. Whilst eating well to keep your strength up is obviously very important, so too is keeping yourself hydrated as chemotherapy will dehydrate you. As stated earlier, I found carbonated water was my preference so stocked up on it and drank loads of it. Of the side effects chemotherapy can give you, it’s the steroids the nurses give you to counter the effect of loss of appetite caused by the treatment that gave me the worse problem, insomnia. The second and third week were the worst by far. I did get some sleeping tablets off my GP which helped but I was reluctant to take too many and only used them eight times I think when I was in real need of sleep. Insomnia is a small price to pay though if it means you can beat cancer. Chemotherapy can give you a real nasty metallic taste in the mouth too, fortunately I only had this for two and a half days after I had my third session at Clatterbridge hospital but it was more than enough, absolutely horrible taste, bleh!!. I think my body had become saturated with the stuff by then though. One thing I found worked for me to counter the bad taste and dryness of the mouth was to brush my teeth after a meal and also brushed my tongue too. Swilling my mouth with salt water which I made myself helped also. Don’t buy mouth wash from a chemists or super market, the home made salt water solution works better and is a lot cheaper (Thanks Clatterbridge chemo nurses for that tip)
One of the perils of having a pic line in your arm is they can cause blood clots as I found out unfortunately. I had been into town for something and when I got home I found my picc line had been bleeding and my arm was swollen and tender to touch. Following medical advice I found myself in the A&E department at the Countess of Chester hospital where after blood tests, a chest X-ray, some other tests and five hours I was admitted to hospital with a suspected blood clot. It turned out I actually had two blood clots, one in my arm where my pic line was and one in my right lung. The next four days were spent on ward 43 where I received 10 injections a day to break up the blood clots and stop any infections I may have had in my body. I had never had to spend a night in hospital in my life up to this point so my only dealings with doctors and nurses (My GP visits aside) were two visits to A&E I had made over the years and even those were for minor things like a broken arm and a cut to my hand which needed stitches. I never had any feelings towards the NHS and it’s staff other than they do a great job, and constantly get kicked by politicians who want to privatise it. This stay in hospital and the treatment I had been given for my cancer up this time changed my slight feelings of admiration for what the NHS does to one of total admiration, respect and support for them. One thing that I witnessed and the dedication of two nurses who treated me during my stay on ward 43 helped change my perception and attitude towards the NHS. It was Saturday night in hospital whilst I lay on my bed incapable of sleep thanks to my chemo and steroid induced insomnia, a man in his late 70’s was brought onto the ward at around 2.15am. All on his own, he was obviously very upset & obviously very ill. A couple of porters helped 2 nurses get him into a bed on the ward then left. The 2 nurses, both in their early twenties then spent a good hour getting this poor chap from a frantic nervous wreck if you like into a calm, coherent relaxed state. The care, respect and sheer professionalism they showed this guy in taking him from his state on admission to a calm & then sleeping patient brought a lump to my throat. Most girls their age would be out on a Saturday night pubbing and clubbing but these two girls showed unbelievable care and love to a guy in a complete state. Marvellous to witness, it really was. Also, earlier that evening, my picc line needed it’s dressing changed and a general clean up as it had been in constant use with my blood clots. They had been short staffed all that day on the ward which is why my pic line hadn’t been treated up until then but nurses Nicki (Can’t remember her surname) and Jesse Joy who had actually finished their shifts for that day and could have gone home, remembered this and went about treating my pic line with total care and professionalism, no rush job here at all, thank you ladies. It’s been the same attitude right through my treatment, you hear all the constant bad press written about the NHS, be it in the newspapers, online news services or TV but somehow the good that these people do never gets written about. I hope i’ve started a new trend here as i’ve nothing but praise for the NHS, they’re fab!!
December 6th 2017, the day of my operation to remove alien materialised and I presented my self to the nurses at the Wrexham Maelor hospital to book me in. I was under no illusion to how big the operation I was about to undergo was. I was having one of the biggest operations they do on the human body but I was never worried about it at all, I even had a fine nights sleep the night before. As Mr Stewart my surgeon said to me, there is nothing to worry about as you will be unconscious then when you wake up it will all be over. Cool, nothing to see here and all that. My brother Geoff waited with me whilst everything was finalised and my op could go ahead. I think he was more nervous than me. After much form filling in I was called to the anaesthetist room where they got me ready for my op. My anaesthetist tried to put an epidural in my back for morphine to be administered but he was having difficulty doing this so he said “Clint i’m having a problem getting the epidural to locate properly, can I do this after the operation, is that OK with you” I replied “Hey pal i’m just the oily rag your the engineer so I will do what you say” which caused much amusement amongst the various medical staff in there. In fact we all had a good laugh between ourselves in there waiting for theatre time, this is the one thing I remember because I don’t remember anything else, not even being knocked out. The last time I looked at a clock it was about 10.30 am, the next thing I knew there were 4 nurses in masks looking down at me all asking me various questions and generally making sure I was waking up and my various bodily parts were functioning ok. I asked when the operation was going to take place to which they all started laughing and told me i’d had my op. “No, can’t be” I said “I’ve only been here 10 minutes” More chortling amongst the nurses at this incoherent nonsense from me then I noticed a clock and it was 5.40pm, wow, i’d had my op. I was then moved to the high dependancy unit and was hooked up to many wires, tubes, monitors etc by the wonderful staff they have on the ward. I slipped in and out of consciousness throughout the night, woken occasionally by nurses checking my blood pressure etc. The next morning I was woken at 6.30am to have my blood pressure taken and various other checks done. I thought I may of got a lie in after what I had gone through the day before but no, medical stuff takes precedent here. At around 8am, Mr Stewart my surgeon made his first post op visit to see how I was doing. He told me the operation had gone well and he was pleased with how it went. He also said whilst I had had a major operation the day before, he didn’t want me to lounge around in bed all day (Easy for him to say, he’s not the one who’s just had a big op etc, just joking) Enter stage left here, Martine, head physiotherapist. Martine is an extrovert French lady whom I met a week or so before my op. I knew then we would get on and I wasn’t proved wrong. Martine just has this marvellous bedside manner that makes you want to dance around the ward with her. Anyway, after what I had gone through the day before, I didn’t expect that Martine and two of her colleagues would sit me up in my bed, get me coughing before getting me out of bed, gave me a zimmer frame, pick up all my monitors then get me walking up and down the high dependancy unit I was in. That’s exactly what happened, I was gobsmacked but it is common practice and I felt marvellous after doing it. This happened for the next 7 or 8 days and I actually looked forward to the physio as it made me feel better. I always thought of physiotherapy as something you have when you break a leg or similar but no, it has a much broader church than that and I for one was grateful for it. Martine is a very special talent, thanks for making me feel better Martine. As i’ve already said, I had many tubes and wires sticking in me after the op, one of them being a drain to my right lung which was collapsed during the operation to gain access to my oesophagus. As the morphine was reduced, so the pain from this drain became more acute, especially when I was moved, I’ve never experienced pain like it before. Over a weekend I dreaded being moved from my bed to a chair as the pain was so severe. I was actually given a morphine injection by a doctor on the Sunday after my op before being moved as the pain was just too much. That day after this, a male nurse who was called Matt I think, along with Martine the physiotherapist came to get me out of bed ready for more physio. I explained about the injection I needed before being moved, not necessary they said. I protested but they were having none of it and proceeded to get me out of my bed. They did this by doing one little movement at a time and giving me a rest then moving me again and eventually got me out of bed and into a chair without any pain what so ever. Amazing. Thank you. I was a very happy bunny when that drain was removed a day or so later. Another amusing thing that kept cropping up day after day was the friends and family who came to see me all said how great I looked after what I had been through, trust me folks, I didn’t feel it. After 7 days on the high dependancy unit I was moved to a normal ward. After 2 days on here, Mr Stewart my surgeon came to see me to assess my condition and he said do you want to go home tomorrow? “YES!!” I said. “I think you can go home tomorrow as your progress has been super” I thought he was joking. The next day I was given the all clear to leave hospital and after nine and a half days of having one of the biggest operations the human body can have I was on my way home. I know I’ve been absolutely determined to fight the alien but I never thought I would go home so soon. I’m obviously made of tougher stuff than I thought but the hardest part of my treatment was yet to come.
I was left alone for 11 weeks after getting home to build my strength back up after my major operation. It was very difficult trying to find out what food I could eat normally as I had a symptom called early dumping syndrome. This occurred because my stomach was much smaller now and my food passed through me much quicker and this causes you to become light headed, nauseous and in my case give you bad diarrhoea. This made me very weak and I started losing weight but the worst was yet to come. After 11 weeks, I started the second phase of chemotherapy which was administered to clear up any possible residual bits of tumour left behind after the operation which may or may not have been left behind. The first session of my chemotherapy before the op I flew through, this second session absolutely clobbered. I lost my appetite due to having the most horrible metallic taste in my mouth and feeling nauseous all the while. I was wandering round super markets heaving as I simply couldn’t face eating and all the time I was losing weight. I went from fourteen and a half stone before any treatment began in July 2017 to nine stone eight at the sixth week of chemotherapy. My oncologist, alarmed at my weight loss, decided that my third and final 3 week session of chemotherapy wouldn’t be administered to allow me to gain weight as my muscle loss was frightening and affecting my walking. I have never felt so ill in my life, I was a mess. Remarkably, just a few days after being taken off the chemo, the taste in my mouth went away and I started to eat again without feeling sick. I have since started to put weight back on but it will be a while before i’m at a healthy weight for my size. I would just like to stress here that I am in no way negative about the wonderful staff at Clatterbridge hospital who administered my chemotherapy, without it I wouldn’t be here full stop, it’s a neccessary evil. It’s just that it is a very nasty process and I hope one day soon an alternative will be found so nobody else has to experience it, it’s bloody horrible. It’s completely bonkers too as one day like I found out you will be mad for certain foods, toast in my case. When I had the first session of chemo before my operation, my appetite was mad, I ate more than when I wasn’t on the chemo & I ate toast like it was going out of fashion. On my second phase of chemo, I couldn’t eat toast or bread at all, bleh, vile stuff my body told me. Now i’m back eating bread and toast again. As I said, it’s bonkers.
After ten months of treatment I am still learning to eat with my post operation stomach. Am I in remission, I don’t know and neither do the medical staff looking after me yet. I have had a recent M.R.I scan which has shown no secondaries anywhere and no spread into my bones which was fantastic news just yesterday as I write this. Other complications have set in namely muscle loss due to lack of eating because of the second round of chemotherapy. I am getting stronger and putting weight back on but it is going to take time to get well again. Those reading this just starting out on this journey, I urge you to be patient, it’s not a quick process to get over. I have a neurologist and orthopaedic specialist to see as i’ve lost so much muscle mass plus I have tears in a vertebrae in my upper and lower back. The tears aren’t down to the cancer, more likely my 22 years working as a freelance photographer carrying all the heavy kit I have to trudge round with. I will be having tests on my body for a long time to come but as far as i’m concerned i’m over the worst. Alien (the tumour) now lives in a specimen jar in Wrexham Maelor hospital. The M.R.I scan has given me great hope that things are looking good for the future and I shall carry on being positive that alien has been well and truly smashed.
How do I sum this journey up so far. Is it over for me, absolutely not, I will be having tests for the foreseeable future and visiting hospitals to be assessed maybe for the rest of my life. Will a new tumour start a new battle, I don’t know, I will do my upmost to make sure it doesn’t happen but if it does I will simply adopt the same attitude i’ve had from the day I was diagnosed with this rotten, horrible disease, I will tell it to go and do one whilst I simply refuse to let it beat me. Your attitude towards this also makes a huge difference. From the day back in August when Mr Monk told me I was one in four people that would sit in his office and he could say my cancer was curable, i’ve just believed that I wasn’t going to be beaten and cancer wasn’t going to claim another victim of it’s relentless onslaught. I believe you need to adopt that attitude with cancer full stop irrespective if you’ve been told like me your curable. As far as i’m concerned, dwelling on it and letting it get the better of you isn’t the answer, that will destroy you. Telling it to go away and getting on with your life whilst all the time being positive is the way to go. Also, as was advised to me by my good friend Al who is now in his seventh year of remission from cancer that was a lot, lot worse than mine, don’t try and fight it on your own, you won’t do it, full stop. I couldn’t have got through the last 10 months on my own, no way. Family, friends, sports photographer colleagues, Macmillan help, The Oesophageal Patients Association, doctors, nurses etc, etc have all helped me get through this so far. In fact I didn’t realise so many people looked out for me, it was quite humbling to discover. Macmillan run a course called The Hope Course. This I found was very good as you could meet up with other cancer patients and talk about what we had been through which I found very useful indeed. Just talking to someone about what your going through helps, don’t bottle things up, telephone the Macmillan help line or talk to a friend or relative, you will feel better afterwards. What do I do next, get on with the rest of my life. I still have lots of things I want to do. Having gone through the last 10 months has focussed my mind on what those things are going to be so I am just simply going to go and do them. If I can beat cancer, I can do anything is my new attitude. Look out world, i’m on my way.
Alien 2, Cancer Returns
I was really looking forward to the future after the chemotherapy ceased in May 2018. I was battered by all the treatment but my tumour was gone and all the discomfort, pain and sickness had been worth it, especially when I was told of the results of a CT scan I had in May 2018 which showed no spread into my bones and no residual tumours detected. I needed to get myself better to carry out my new business plan and the things I had decided I wanted to do after all the treatment. Two things contracting cancer had made me realise is you have one shot at life, don’t waste it and if you want to change your life for the better, just go and do it. This is what I intended to do, nothing was going to stop me or get in the way as I had a vision of my future and I liked what I was seeing.
2019 began a new year for me, my body was healing at last, I was putting weight on, eating better and I was able to get back involved with my photography which was sheer joy. I had missed my job so much and at last I was doing something to get myself back into doing a thing I loved. I had shot some new portraits for my commercial website and portfolio, my niece’s partner Steve had designed me two new fabulous websites and at last I was about to market my black and white fine art photography, something I have been guilty of neglecting for far too long. I was at last looking to revive my business and had a renewed vigour to move my business away from covering football which I have no love of and start doing the type of work I wanted to do. It was a lot of hard work to get to this position after what I had been through with my cancer but I was in a happy place and looking forward to the future. With renewed energy and determination to move forward, what could possibly get in the way?
After I was told in August 2017 by Mr David Monk, consultant general and upper GI surgeon at the Countess hospital that “I was 1 in 4 people who will sit in front of me today who I can say your cancer is curable” a friend asked me a week or so later what I would have done if I had been told my cancer wasn’t curable. I replied I don’t know because that would have been a different scenario to get my head around and I simply didn’t know how I would have reacted. Unbeknown to me at the time, I would be finding out how I reacted to such dreaded news.
Shock and Disappointment
It was a Friday in late August 2019 and I was eating some lunch when I had a very slight swallowing problem, a minor thing compared to the same problem in 2017. This carried on over the weekend so on the Monday at 11 o’clock I was sitting in front of my GP Dr Macgrath. I had already got a six month appointment the following Monday with my surgeon at the Wrexham Maelor hospital but getting checked out early the last time saved my life. I said to Dr Macgrath that I hoped I wasn’t being alarmist by visiting him with such a minor thing again. He leaned forward and said “Mr Hughes, you would be an idiot if you were not here” I agreed. The following Monday I met with my surgeon Mr Stewart in Wrexham. After telling him about the swallowing issue and an examination, I was to have a CT scan the following week followed by another endoscope test. I had the CT scan and was due to have an endoscope test on the 30th September at the Countess hospital but an appointment was made on the same day to see Kate Holloway the Macmillan Head GI nurse with the results of the CT scan. I’ve known Kate since the treatment began back in August 2017 and i’ve kept in touch with her throughout my treatment, she has been a rock, always happy to talk if I needed to ask about any issues I was having.
I must admit, I wasn’t prepared for what Kate was about to tell me, I really wasn’t. Kate met me in the waiting area and took me through to the consulting room she was using. Kate asked me how I was doing and I told her about the swallowing problem occurring again along with a dry cough that I had for around two weeks. Kate then proceeded to give me some very bad news. “I’ve seen the results of your CT scan, they’re not good” she said. I asked what was wrong. “Your cancer has come back, it’s back in your oesophagus where it was originally and it has spread to your liver, there are two suspicious lumps in your chest also” I was shocked, really wasn’t expecting this news. I asked Kate if it was curable “No” was her reply. I just stared at the floor and asked how long I had to live, Kate replied “Months not years” Now at this stage, I would imagine a lot of people would fall to bits and quite rightly so, but the overwhelming sense that gripped me was one of immense disappointment. I didn’t fall to bits and start crying, I just felt hugely disappointed that after all the things I had gone through, the wonderful work that all the NHS teams I had passed through to help save my life and beat cancer the first time, it had come back only this time a lot more serious, deadly serious. Kate told me that she worked with three surgeons at the hospital and it would normally be one of them that told me the grim news. However, because Kate had known me for so long, she asked the surgeons if she could tell me about the results and they all agreed. If you could win a gold medal for telling someone they had incurable cancer with all the compassion, professionalism and thoughtfulness that was shown to me that day, Kate would have won it, I am so glad it was Kate who told me and not some doctor or surgeon i’d never met before. Thanks Kate.
Kate took me through to the Macmillan information centre they have in the hospital where Gaynor and Koren who run the centre were waiting to see me. After hugs all round and half an hour to get my head round what I had been told, I decided to walk home. Kate advised me to get a taxi but I wanted to walk, it would help get my head together I told her. Kate asked me to telephone her when I got home to make sure everything was ok. I telephoned my brother on the way home with the news, he told me he would drive over to see me straight away. I got home, I was pretty emotionless with the news i’d just been told to be honest, it always hits you later on. My brother turned up, we sat in the kitchen and I ended up consoling him, I was still in an emotional numbness. The rest of the day revolved around phoning some close friends and family with the situation I found myself in. I telephoned Kate Holloway at the Countess to tell her I got home OK and she told me she wanted me to get a taxi home as she was concerned about me walking home with the news I was told and me crossing roads safely etc. For the rest of the day, I chilled, listened to some music, my therapy as I like to call it. I went to bed later that evening and slept fine. I was doing some editing the next day and just broke down, it always hits you later on you see, i’ve been here before. This lasted five minuets then I kicked myself up the backside, pulled myself together and just carried on editing.
My first battle with cancer was made easier by being told it was curable. It was still a daunting thing to go through make no mistake, but I was told It was curable and this made my attitude of “I will beat this” all the more easier. Now here I was in a much darker situation. How do I get my head into fighting back mode? That question asked of me “How would you deal with it if you had been told your cancer was incurable” kept haunting me, how do I deal with it. I didn’t know because my head was still trying to come to terms with the situation.
I was referred back to the Clatterbridge Cancer Centre hospital on the Wirral. This is where I started to get my head back into fighting mode. I had an appointment with Dr Cossar, an oncology doctor in October 2019. I remember the day vividly, my brother Geoff came with me to the appointment, I didn’t want to drive as I was waiting for confirmation of some serious bad news on my cancer returning. We were both nervous wrecks waiting in the reception area then I get called for my appointment. Like Kate Holloway, Dr Cossar was fabulous at explaining everything that was going on in my body, again, with great compassion, professionalism and thoughtfulness, I was quite emotional explaining everything I had gone through so far in my battle with this horrible disease, glad my brother Geoff was with me, like I have said before, you can’t fight this thing on your own. Doctor Cossar explained that she wanted me to start nine weeks of chemotherapy after which I would have a CT scan to find out what was happening inside my body. I had to sign a form to accept the chemotherapy. Doctor Cossar asked me what I wanted to do. I took the pen from her hand and asked where do I sign. The alternative was simply a no go for me, I wasn’t going down without a fight!!.
I had my pre chemotherapy check up at Clatterbridge Cancer Centre with nurse Debbie. Debbie remembered me from 2018 when she did my check up back then. We discussed my situation and I mentioned the fact i’d been told I had months not years to live. Debbie dismissed this straight away, she told me about patients that had been told similar things five years ago or more and they are still here. “You are living with treatable but incurable cancer” she told me, also, I wouldn’t be receiving this treatment if the doctors didn’t think it was worth it Debbie told me. The fight back had just begun, I am now living with treatable but incurable cancer but this is me and I don’t give in ever to this horrible disease full stop!! There, my head now had something to work with, thank you Debbie, you super star. Next step, break everything down into little segments and deal with each stage of my treatment like last time. I’ve been here before and used the same tactics and it worked. It will work again I told myself.
My chemotherapy began, I was on capox via an intravenous drip in the hospital and had capecitabine tablets to take at home, six a day, ugh. Two things of battling this disease for two and a half years, I am sick of taking tablets for all this time and I am fed up of feeling ill. But, I am still here so can’t really complain I suppose.
I have had a taste of the after effects of chemotherapy especially in 2018 when I had the horrible metallic taste in my mouth for six weeks when I was back on this horrible stuff. It’s a necessary evil but if one day it can be replaced with something less toxic on the body, bring it on. This time round it has been pins and needles in my face, hands and feet when it is cold and severe fatigue. I’ve never felt so overwhelmed with tiredness. As for the pins and needles, try peeling a potato and you drop the thing along with the knife as you can’t control your hands because the potato is cold and sets off the pins and needles, very, very annoying. You wake in the morning and get out of bed only for your toes to start hurting with the pins and needles as you’ve put your feet down on a cold carpet. It does not take long to start irritating the hell out of you. I don’t have the horrible taste in my mouth like the last time on chemotherapy so I can kind of live with these other after effects.
Best Christmas Present Ever
After 8 weeks of chemotherapy, I had another CT scan at Clatterbridge and a week later had an appointment to see doctor Cossar again with the results of my CT scan. This was three days before Christmas 2019. Eager for the news of the scan results, again accompanied with my brother Geoff, doctor Cossar gave me some amazing news, the tumour in my oesophagus and liver hadn’t spread or grown, the mass around the tumour in my oesophagus had shrunk so my swallowing problems had disappeared, this I knew from the first week of starting chemotherapy again. The suspicious lumps in my chest had shrunk too so the chemotherapy was working. To hell with the after effects, it was working. Doctor Cossar advised I had another six weeks of chemotherapy as it was having a positive effect. I signed up straight away!!
I had an appointment to see doctor Madi, another oncology doctor in February 2020 as doctor Cossar was on maternity leave. Doctor Madi advised me to have three more weeks of chemotherapy then he told me I would have a break of at least a month from the chemotherapy. He also referred me to Christies hospital in Manchester for any clinical trials relating to my cancer. I was well up for that, anything to help fight this rotten disease the better.
I was contacted by Christies hospital in March 2020 to ask if I would be interested in taking part in a new clinical trial called Platform. Cancers of the oesophagus and stomach which cannot be surgically removed and which are negative for a protein called HER-2 are normally treated with combination chemotherapy regimens. This treatment is generally stopped at around 4 to 6 months due to concerns about side effects (Like my pins and needles, severe fatigue etc) Patients then enter a period of check ups or “surveillance” with CT scans to monitor the disease. There has been a lot of interest in developing drugs which may be more tolerable than chemotherapy, which could be administered during this surveillance period to try to prolong the length of time until the cancer starts to grow, hence the Platform trials, the main purpose of this study is to see whether the addition of a maintenance drug treatment following the completion of chemotherapy may improve disease control and the length of time that somebody lives with cancer of the oesophagus or stomach. After having a pre trial check up at Christies, I returned last week to see what trial drug I would be getting. All the people undertaking the trial had their details fed into a computer and this data analysed, then it would decide which drug would be the best option (There are 4 different types of drug for the Platform trial) In my case, I was to be put under “surveillance” for 12 weeks rather than any of the trial drugs. This disappointed me somewhat as I was looking forward to having a new “tool” if you like in my own fight against this horrible disease. However, the drugs do have side effects just like chemotherapy, one of which is lowering the bodies immune system. With the Covid 19 pandemic creating it’s chaos at present, in a way i’m glad I am not having my own immune system compromised. The next 3 months with no treatments will allow me to build myself back up after undergoing 18 weeks of chemo which will help in the next round of whatever treatment awaits me.
My head now is in a better place thanks to all the NHS staff i’ve been to see since the recurrence of my cancer in August 2019. My family and friends seem a lot more confident in helping me deal with the situation I find myself in. Instead of “I’m sorry mate to hear about the bad news” which annoyed me, it is now “do you want to pop over for lunch on Sunday or need a lift to the hospital just ask. I’m not too annoyed about “Sorry mate to hear about the cancer” as it’s one of those things that your family and friends can’t really do anything about. Had I broken my leg say for argument, people can get their heads around the fact that for six or so weeks you will have your leg in plaster then you will start walking again and they can give you a lift to the shops, hold the door open for you etc,etc. With cancer, you can’t help medically and your family and friends need emotional support to help them through what I am going through, something Macmillan Cancer Support are working on as I attended a Macmillan workshop just after I had been diagnosed with my cancer returning on helping cope with the emotional side of cancer. I attended 2 more workshops this year related to this. I have also starred in the Macmillan poster campaign in Cardiff during the election broadcast there in 2019. I have been interviewed on live radio twice for them plus i’m the new face on the cover of their new oesophageal cancer booklet. I am ready to help Macmillan out when ever I can, it’s all part of my own fight back against this horrible disease. I have beaten this thing once, I fully intend to do it again. Onwards and upwards.