Thursday, May 23, 2024
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2020 – The Year Of The C Words

When COVID, cancer & Christmas collide

The year 2020 has been a pretty abysmal one for everyone from start to finish. We’ve had lockdowns, self-isolation, thousands of deaths, a crashed economy, mass enforced loneliness, a mental health crisis, redundancies by the bucket load and the seemingly never-ending months of home-schooling.

But when you combine the misery of COVID with one of the only C Words that is even more horrific – cancer – it really takes things to a whole new level of awfulness. Our year in a nutshell could quite accurately be described as a shitshow – one where you look back and can’t quite believe it’s actually happened. Although to be fair to 2020, everything started going wrong in late 2019.

Towards the end of Summer 2019 my dad had started to complain about struggling to swallow certain types of food. The first time we noticed was when he was round our house one day helping with some DIY and seemed to be having problems with a fairly crunchy bread roll.

None of us thought too much of it at the time and dad said he’d keep an eye on it. Over the next few weeks he noticed it a few more times, always when swallowing bread-based food. As most of us probably would, he decided to wait a bit longer to see if it would improve with time. The problem continued and when he was away on holiday with my mum and aunt in late September he was really struggling so decided to get it checked out when he got back.

At the time we all assumed it would be some kind of restriction of the oesophagus and that he might need it stretched a bit or have it relaxed with medication like a few other people we know had had done in the past.

After managing to get a doctor’s appointment on 28th September he was referred off for an endoscopy in the hope of finding out what was going on. Unfortunately the earliest date for an appointment on the choose and book system was 29th January 2020, FOUR MONTHS after the doctor’s appointment! Obviously can’t have been that serious then, we assumed…

The weeks went by, with no improvement until dad went back to the doctor in November to talk about something different. He saw a different doctor and at some point in conversation his endoscopy appointment, or lack thereof, came up.

The doctor checked the booking and found he’d been referred to ENT rather than the Upper GI clinic by mistake. They managed to get him an appointment at the right type of clinic – and in just two weeks’ time. So instead of waiting until the end of January he finally got to have an endoscopy towards the end of November instead! Definitely an improvement, albeit still two months after his first appointment with the doctor and three months after he started to struggle with swallowing.

Long story short, the endoscopy showed some kind of mystery blockage and dad was referred off for a CT scan and then an appointment in Bracknell with a consultant who we Googled and appeared to specialise in cancer and general surgery. It was that bit of Googling that gave us the impression that maybe the swallowing problem was something a bit more serious than we’d expected!

The consultant said that nothing sinister had shown up on the biopsies taken during the endoscopy. However clearly there was something in his oesophagus that shouldn’t have been there and therefore the consultant said they were going to treat it as if it was cancer.

From films and TV shows and other people’s experiences I had expected there to be some kind of defining moment when a doctor had announced that my dad had cancer and that the world would have fallen apart. But that never really happened. My dad maybe had cancer but they weren’t sure. Potentially life changing, potentially not.

The order and timing of events is all a bit of a blur now, but somewhere over the next few weeks there were a few appointments with the consultant, another endoscopy to take another biopsy, and a PET scan. Oh, and the other of the most famous C words, Christmas!

A Christmas which was generally fairy normal, apart from the fact we were all a bit worried about whether my dad had cancer. He struggled to eat any of his Christmas dinner due to his continued swallowing problems and looked to be in a lot of pain trying to eat anything at all.

I think we all knew that the next year was going to be a difficult one, although at that stage we probably hadn’t anticipated quite how dreadful 2020 was really going to be…

January came and by that stage dad couldn’t eat anything at all, and was even struggling to get water down. The PET scan confirmed that he had cancer of the oesophagus, he had a feeding tube inserted into his stomach and a PICC line into his arm and eventually in early March he started chemo, some 7 months after his symptoms had started.

The consultant had said that the time delay shouldn’t be too much of a factor because it was a generally slow-growing cancer and dad had needed to build his weight and strength back up before chemo could begin due to not being able to eat much for months. But all of us, especially my dad, just wanted to get it started.

Dad ended up on what we were told was the most aggressive type of chemo available, the FLOT chemo. This was a combination of 5 different chemo drugs, some of which were administered at the hospital and some via a pump that he would wear at home the following day.

Assuming the chemo was successful in shrinking the cancer he would then undergo surgery to cut out the offending section of his oesophagus. He would only ever be able to eat smaller meals after that but at least he would still be alive. Being the optimistic person I am I assumed all would go well and that by Christmas 2020 all would pretty much be back to ‘normal’, both for him and for COVID.

On the first day of chemo on 6th March I remembered the ward being where I’d had my tonsils removed back when I was 6. It was covered in green and white tiles, with lots of inlayed tile versions of pictures from children’s stories.

The C Words - chemo begins

All the beds of my childhood were gone and had been replaced with comfortable chairs around the edges of the ward on which patients sat whilst receiving their concoction of chemo drugs.

The nurses were friendly and helpful and it felt like quite a relaxed environment. I sat with dad for a while chatting, then popped home for a few minutes before my mum and I came back at the end. It wasn’t a great place to be, but at least we had started fighting back against the cancer and at least dad wouldn’t have to sit there each fortnight on his own.

Unfortunately by the time the second round of chemo arrived the world had changed. Visitors had been banned from going into the actual wards, so all I could do was drop him off at the waiting room and pick him up again afterwards. By the third session I couldn’t even go in the waiting room, with the car park being as far as I could take him.

Until you go through chemo or have a close relative going through it, you don’t realise how much of your lives revolve around it. There was a constant stream of fortnightly chemo, consultant appointments, PICC line clinic visits for flushing the line through and blood tests, along with scans every few weeks and even a few blood transfusions.

You couldn’t really make any plans as you were never sure whether any of the appointments would be pushed back a week or rescheduled due to COVID or if my dad’s blood levels were too low to go ahead.

The whole cancer centre at the Royal Berks Hospital closed for a few weeks at one stage due to COVID restrictions meaning a longer trip to Bracknell instead, intermingled with scans at Oxford and Thatcham.

Then factoring in the fact that my dad would be feeling rough a few days after each chemo session, and the chemo itself putting him into the shielding category for COVID meant that he couldn’t really see any friends or family for support. I carried on driving him to all his appointments, despite not being 100% sure I was allowed to, but apart from that he didn’t really get to see anyone apart from my mum for the whole chemo programme.

On the plus side, the chemo didn’t wipe him out quite as much as expected – he kept most of his hair and he only felt really rough for two or three days per fortnight which wasn’t bad considering.

Anyway, chemo continued for 6 sessions, once a fortnight and at the end came the next scan to see how effective it had been at shrinking the cancer. We were cautiously optimistic when the consultant appointment came on Wednesday 20th May that we would get some good news and that she would give us a date for when my dad could have the operation to remove the cancer.

Unfortunately, as most things in 2020, it didn’t go quite to plan! The consultant started the appointment well enough, by saying that the chemo had in fact reduced the size of the cancer in my dad’s oesophagus as planned. Then in the space of a few seconds the world pretty much collapsed around us as she said that unfortunately the cancer had spread to the liver and that therefore the operation was no longer an option and that there was now no chance of a cure.

I’m a generally positive person and tend to expect the best even in the darkest of situations, but there wasn’t really any ‘best’ in that situation to find. I remember my dad saying to the consultant that she had just given him a death sentence, as I sat there and stared into space, not quite believing what had just happened.

As I walked back to the car afterwards I remember everything sinking in and my mind starting to think of all the things that would be different in life in the future without my dad being there. Until that moment I had assumed everything would be OK after the operation. I knew there would be tough times but I thought it would all be OK. Now I knew for a fact that it definitely wasn’t going to be OK. Nothing was going to be OK in fact.

The next few days were a miserable muddle of people asking how my dad was getting on and when his surgery was going to be. It turns out that having to tell lots of people that your dad only has a few weeks / months to live and that there will be no operation isn’t much fun.

I remember one of my colleagues at work telling me that about his own father’s terminal diagnosis. He had been treated for cancer of the oesophagus too and that within a few weeks of it spreading he couldn’t move, was in constant pain and was dead within the month. Thanks for sharing…

Normally when faced with the news that someone only has a short time left to live you would try to make as many memories as possible and pack in as much happiness as you could. COVID restrictions, and the general fear of my dad spending his last few months battling breathing problems on top of cancer obviously kicked that plan firmly in the arse.

So instead of having lots of visitors and family gatherings and daytrips and meals out we went for a last-minute short break to the outskirts or Bath in a Hoseasons lodge, a few days after lockdown had ended. The restaurant and most of the facilities were closed due to COVID restrictions but we had a lovely few days away from normal life and my dad was actually feeling pretty happy and healthy that week. I’m glad we managed to get away together for one last time.

At the follow-up consultant appointment the decision was taken for my dad to have another batch of chemo to try to keep the two cancers at bay for as long as possible. Given we had assumed that nothing more could be done, the fact that chemo was still an option felt like great news at the time. He was also able to have a stent fitted in his oesophagus, meaning he was able to swallow a lot easier, which actually made a lot of difference.

The Macmillan nurse even told us that dad would definitely make Christmas, so that was another positive to hold on to…

It did mean we were back to the routine of fortnightly chemo, albeit a different type this time, and the cycle of my dad feeling awful for a few days, followed by feeling slightly less awful for a few days.

Unfortunately, this time around the chemo took much more of a toll on my dad. The bad days lasted longer with each session and the good days were only slightly better than the bad days. We still tried to do some things – walks and DIY – that my dad normally enjoyed but he was generally knackered within a few minutes and had to give up. I think that was the part my dad hated more than anything else – the fact that he couldn’t do the things he enjoyed and the fact he felt he was letting everyone down.

Before chemo took hold, my parents always went out for walks and to the shops and on days out and my dad would also always help us out with DIY projects at our house, but as the chemo progressed the harder it became for him to do anything more than reading on the sofa at home because he just felt so dreadful. I know he felt terrible about that because my dad was the sort of person that needed to be busy and needed to be helpful and wanted to do things for people and to have that sense of achievement.

His chemo programme was meant to stop for a few weeks at the start of December, but he was feeling so terrible after each session that in the end they decided to give him a break from the end of October in the hope that he’d get some of his strength back.

Unfortunately he never did feel much better. He developed back pain shortly after stopping the chemo and that worsened over the coming couple of weeks to the extent that I had to wheel him into his next scan appointment in mid November. That scan confirmed that the cancer had spread to his spine, meaning all the consultant could do was give him a high dose of co-codomol and some oral morphine and refer him to Sue Ryder for end-of-life support.

Within just a few days my dad’s back pain had worsened to the extent that even moving a few inches was unbearable, despite the raft of medication he was taking. The medication had also caused blurred vision, meaning he could no longer read books, and he had lost strength in his right arm, meaning he couldn’t even write. For a man who had always been proudly strong, independent, hard-working and active it was pretty hard to see.

Sue Ryder were planning on admitting him into a hospice, but sent him to A&E first just to check him over before transferring him to the hospice. Little did we know at the time but the resulting ambulance visit, with all of us wearing face masks and keeping 2m away from each other at my parents’ house would be the last time we saw my dad conscious. As he was wheeled into the ambulance we waved goodbye and said we’d see him again soon.

Due to COVID restrictions no visitors were allowed in the hospital so we didn’t get to see my dad during the 5 days he was in there. Due to his arm problems he also couldn’t operate his mobile phone, so it was also virtually impossible to talk with him as he physically couldn’t answer the phone. The nurses seemed constantly busy, as you would imagine, so even getting someone to answer the phone in the ward for an update was pretty challenging.

Fortunately on the Wednesday evening one of the doctors called me to give me an update and kindly offered to ring me from my dad’s phone so I could actually talk to him for a few minutes. He said he was doing OK and was looking forward to going to the hospice so we could actually see him again. I said it was nice to hear his voice again and that I loved him lots and that was that.

‘I love you lots, dad’ were the last words I ever said to him, on Wednesday 25th November 2020 at around 6pm.

On 26th November we were allowed to visit him in the afternoon for a few minutes for a farewell visit under COVID restrictions with my mum and aunt, but unfortunately by then he didn’t know we were there due to the medication. On the morning of Friday 27th November 2020 just before 4am they called to say he had passed away. After a year of fighting he was finally at peace, leaving a massive dad-sized hole in all of our lives.

He was a lovely man. He never wanted expensive cars, or foreign holidays or big houses. He had everything he wanted and was genuinely pretty content in life. He worked hard his whole life, and always put everyone else ahead of himself and literally no one had a bad word to say against him. He was easy to get to know, made people feel comfortable and always raised a smile. He was optimistic, level-headed, caring, giving, supportive and just a really, really decent man.

Many more people wanted to attend his funeral earlier this week than the 20 that COVID restrictions permitted. Just one of the many, many ways that COVID has made dad’s battle with cancer all the more horrific throughout this miserable year.

Now, instead of preparing something special for what we expected was going to be our last Christmas with my dad, the first Christmas without him is nearly upon us. It won’t be the same for anyone across the UK this year, but it’s going to feel even harder here I think, thinking of Christmases of the past and what we’ve lost this year.

We’re also left with a whole load of ‘what ifs’. What if he had gone to the doctor sooner? What if he had been referred to the correct type of endoscopy at the start? What if COVID wasn’t around and everything was able to be done quicker?

The C words – cancer, COVID and an empty, hollow Christmas with my dad, the life and soul of everywhere he went, missing are all coming together to make sure 2020 is the worst year I’ve ever experienced. One of loss, isolation and almost of giving up hope that one day it will actually get better again.

But as my dad always said, ‘it is what it is’. Things will get better. The sadness will be replaced eventually by happy memories. Despair will eventually once again turn to optimism. And Joshua will make very sure that we have the best Christmas that is possible in Tier 4 despite everything else going on around us!

We will always miss him and always think about him with happy memories. Rest in peace, dad. You deserved so much better…

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2 thoughts on “2020 – The Year Of The C Words

  • Stacy

    Your Dad sounded like a fabulous man. A tearful read of the heartache you and your family have been through. Thinking of you at the difficult time. If you need a chat with hot chocolate to try and make you smile you know where I am x Stace

  • Jackie Lewis

    What lovely sentiments James but a truly heartbreaking account. Virtual hugs to you and your family xx

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