A couple of posts ago I mentioned that Liz, my long-suffering wife (hey, someone had to volunteer for the thankless task of looking after me, and she drew the short straw), had penned some words regarding how a partner copes when their other half develops cancer. I’d like to share this with you. Oh, and don’t be distracted by the mention of Ted – it’s what they call me round these parts.
I thought it would be interesting for others to read about dealing with Cancer from the partner’s perspective, especially the times where I felt least able to help, but also where I could provide most support. It goes like this…
On my way back from the hairdressers one evening, my mobile rings. I never answer it whilst driving so I waited till I got home and listened to the message. It was Ted; he had just been in with the consultant at Lincoln County and the news was not good – he had cancer. Obviously I knew about the lump on his neck, but this outcome hadn’t occurred to me: it really felt like being hit with a baseball bat. Once I had picked myself up, I rang him back and got a few more details. It was a squamous cell carcinoma.
My initial concern was that he got home safely but having convinced me that he wasn’t about to do anything silly, I found myself doing what we all do nowadays – I Google’d it. This was a mistake: I scared myself silly. If you find yourself in this unfortunate situation then please, whatever you do, avoid going straight to the internet: while the sites you will come across can be informative and mostly accurate, they may not refer to your particular cancer or the stage of cancer you have to deal with.
The websites I found – and there are many full of doom and gloom – did not give a good prognosis. I immediately decided not to undertake independent research but rather to wait for the professionals to give their prognosis and best advice. When Ted got home he was very positive – he has a background in project management and this was just another project that he was intent on managing: more to the point, he was going to beat this thing.
I obviously had lots of questions, some of which he could not answer. The consultant had indicated a better than 50% odds of a full recovery, but what about the care he would need, and what was the timescale? We also had two holidays planned – one in Devon in September and one in India in October – did we need to cancel these?
Marie, Ted’s Macmillan nurse (who he had just been introduced to) answered her mobile straight away, even though by this time it was past 7pm. She answered most of our initial questions, but where she couldn’t, she came back the next day with a more complete response: she was an absolute angel.
We now had a basic game plan – the next four months were put on hold and our efforts would be concentrated on getting through this and beating the unwelcome visitor – and beat it we would. Ted had promised me that we would grow old together and he wasn’t getting out of that one…
Then we had the difficult task of telling our nearest and dearest. Our tone was always positive and we mostly allayed fears of impending doom and gloom. More importantly we asked for their love, help and support, which they gave without hesitation or restriction. Their understanding of where we were at was wonderful.
And so we started our journey…
Firstly, over the next few weeks there were lots of tests, biopsies and scans. Then came the outcome meeting: this is when you are told exactly what it is you have and how it will be treated and, most importantly for me, what they calculate your odds for recovery to be. It was possibly the most important day of our lives and I had a business meeting in Spain which I could not get out of: I was devastated. However, one of our many wonderful friends agreed to go with Ted, make notes and ask questions – and most importantly, hold his hand. I have to say that it was the most terrifying day I have ever had: my mind went constantly from the positive to the negative and I was so relieved when Ted rang and told me the final prognosis – cancer in the throat region with a 70% treatment success rate, which is about as good as it gets.
The next ordeal was Ted having his feeding tube fitted. It is really hard watching someone you love in pain and trying to encourage them and keep their spirits up – you feel so helpless and there is nothing you can do but hold their hand.
Then the radiotherapy and chemo started – we seemed to sail through it in the first few days. Ted was eating normally and we both thought that this may not be as awful as was expected, but it wasn’t long before things started to go downhill. The first effect was his ability to taste, then to eat dry food (and when I say dry, I mean anything that does not come with a bucket full of gravy or sauce). It was not long before we started to eat different things – we always ate together though, but even eating beans on toast made me feel guilty as he looked longingly at my plate.
What was really hard was convincing Ted that he had to eat – we both love our food but there is no joy in eating when you can’t taste it, or it’s too acidic, and you aren’t able to deal with textures. And so I became the bully: “what have you eaten today? You need to eat more.” I started to sound like a typical Jewish mother.
Then there were the mood swings; gentlemen, I now understand why you cower in front of pre-menstrual / menopausal women (I can remember the days of Ted coming through the door, taking one look at me, and instantly apologising), but I understood that it was just his frustration at where he was in the treatment cycle and what he was going through, so I bit my tongue. Only once during that whole period did I have to lock myself in the bathroom so that he couldn’t see me cry. I always had to remind myself – this is not about me, this is about Ted and providing him with the love and support he needed.
The worst period seemed to be after the treatment had stopped. His neck, which had been red beforehand, now had what looked like third degree burns and his ability to eat anything completely vanished. We were now down to the feeding tube only and more nagging from me: “How many shakes have you had today?” “You must have more.”
Ted’s spirits seemed to go downhill a lot during the first few weeks post-treatment as, even though I could start to see him turning the corner, he couldn’t – though I think that was just his frustration at things not happening quickly enough. Again all I could do was watch and hold his hand. Oh, and lots and lots of cuddles.
The first consultation, six weeks after end of treatment, was amazing. We weren’t expecting much; in fact we thought that we would not be told how it had gone until late-January, but there we were in mid-December being told that they had ‘got it’. Wow…I sat there in disbelief: “are you sure?”
Since then, there have been two follow up consultations and both reports are the same – all looks good. I know that the first two years are critical – and there are still daily symptoms that Ted has to deal with – but we are now planning ahead. Holidays are booked and I’m not cancelling this time!
I know that our journey is far from over and that we will not get the all-clear for five years, but we have come so far in the last eight months: we truly believe and hope that, bar the monthly check ups, the road ahead is clear. Each further appointment is another box ticked.
I just want to end this by saying a few thank you’s:
Thank you to our respective families who did not panic but gave us their love and support throughout.
Thank you to our dear friends who were always there for us – those who came to visit, those who sent flowers, those who took Ted to and from hospital if asked, those who attended consultations with him, those who emailed and telephoned and those who sent silly presents that made us laugh.
Thank you to Macmillan – you are amazing – when I realise my “business plan” (winning the Euro Millions), you are at the top of the list!
Thank you to all at Lincoln County Hospital’s Oncology Department – you did it!
Thank you to the angel who took the blubbering fool she found in a petrol station home with her and gave her a hot water bottle she needed, because we didn’t have one. One day I will do a shopping list covering the essential items for the newly-diagnosed.
To you all – we could not have done this without you.
Thank you finally to Ted – you came through this with such strength and all the time (even through the most embarrassing episodes) you kept your sense of humour.
Theo Pywowarczuk: Radioactive Man 