Author: tatgibbon

As we have all found in these strange old times, life goes on.

Steve and I have gone to bootcamp together for years, and now, for the first time really, due to lock down and general apathy on my part, I find myself at bootcamp without him. We have a lot of mutual friends, and I spend a good amount of time answering “how is Steve?”

Quick answer? “He’s doing OK, thank you”

Honest answer? He’s alive, and the last scan showed that the tumours have signicantly reduced in size, but right now he’s actually as poorly as he was when he was first diagnosed. The treatment appears to be making him as fatigued as the cancer did, and he still gets terribly short of breath with even the slightest exertion.

He’s tried going back to work, but has struggled and after a 4 week phased return, he managed less than 2 weeks full time before being signed off again.

I’m struggling with a lack of….. Direction? Clarity? I know it’s not an exact science, that nobody can tell us what the future is going to hold, but apart from the time we spent with the consultant when we first discussed treatment options, all we have had is a 2 minute phone call each month to say that his blood test results are OK and he’s good to go for that treatment cycle.

I feel like I need more than that. I feel like I need someone to help me understand if this is as good as he’s going to be, or whether this will improve. I feel like I can’t plan anything – and nobody is volunteering that sort of information to us.

Steve feels like he knows enough, and I respect that, but our heads work very differently to each other lol!

Maybe I just need someone to tell me that they can’t tell me what I’m desperate to know?

In the meantime we carry on carrying on – grabbing moments when we can, planning our days to optimise the times he is feeling better.

And Wednesday I finally get to have my haircut. And I’m sure suddenly all will seem well in the world once more!

Steve has had all the treatment he can for the time being, and we are just waiting on the scan which will tell us how well it has worked. His pain is under control, the fatigue is the new normal, life goes on.

I guess this is what they call “living with cancer”?

Yesterday we did our annual “bauble shop”. Every year since the girls were tiny we have taken them out at the beginning of December and they have chosen a special bauble each. It gets labelled with their initial and the year, and every year it goes on the tree. The idea is that when they leave home and have a tree of their own, they will take their collection with them and have a starting point for their own tree.

When that day comes, there will be some I will miss seeing on the tree, others…. not so much lol! There are some particularly sparkly monstrosities from the early days!

So Christmas is under way, and this year we’ve decided to spend the day itself with just the 4 of us – the Christmas Covid rules appear to be complicated and easily mis-interpreted, and too many decisions to have to make. “Just us” is the easiest, safest option – just us in a bubble, and outdoor walks with friends and family.

Oh, and Steve has promised a Kahoot quiz to get us all together virtually!

After the crazy flurry of activity of the first few weeks after diagnosis, life has settled into a new normal – Steve is weary but otherwise seemingly fit and healthy (if we ignore the amount of morphine he is taking daily to keep the pain and cough at bay) and it’s been easy to push the thought of his illness to the back of my mind and almost feel as if this isn’t actually happening, and that everything is going to be alright.

Today we had a visit from one of the nurses from the hospice, to introduce herself and talk about the team and what they can offer for all of us.

She expressed her shock at how quickly this had all happened for us, and said that it was unusual to be as far along the process as we are, this soon after diagnosis.

We both got emotional while we were talking to her, it was a very honest conversation and as we spoke about symptom control and the future, for me it was a real reminder that, actually, my husband is really poorly.

And I’m classed as his “carer”, and will be considered his main carer as “the disease” progresses. This worries me – I’m not a natural carer. I was always the patient when we played hospitals as kids, when we were looking after Dad in his last days, I was “communications”, Lou and Mum were “carers”. I’ll do it, of course I will, but I’m just not sure I’m going to be very good at it.

Hopefully this will all be a long while off, but today just brought it all acutely back into focus for me, and the tears which haven’t been around much in the last few weeks have flowed again today.

(This was all typed yesterday – this morning I sobbed on Steve, he reassured me, and we have been for a 2.5 mile dog walk in the pouring rain, and I’m feeling more positive again)

2 short months that have felt like a lifetime.

It’s still hard to imagine that 2 months ago on 6th September we woke up normal people, with normal lives.

By lunchtime on 7th September one of us had incurable cancer.

Next time anyone gets to have a look at the tumours will likely be just into the new year, to give the immunotherapy a good chance to make an impact and do it’s thing.

I’m desperate to know what is happening. At the moment we just don’t know at all.

We are doing everything we can, and we have to be patient.

I’m using the Royal “we” – Steve is doing everything he can, the rest of us are his support crew.

But for the first time I’m feeling hopeful – whilst he’s exhausted, Steve appears to be doing well – there are niggles and symptoms, but today he walked the dogs with Kira for the first time since the week after the diagnosis, and that makes me hopeful that maybe we’re in this for the (relatively) long haul.

Keep rooting for us! 🙂

4 days before 3rd immunotherapy session – over half way through the initial 4 sessions.

One more after this one, then a scan – to see what effect the treatment has had on the tumours, and we’re hoping to see that, at the very least, they’ve not grown.

This treatment carries on working for months after you take your last dose – you can expect new side effects any time up to 6 months afterwards – that’s quite some hangover!

After the initial diagnosis and flurry of activity, which was entirely overwhelming for all of us, we’ve entered limbo land. The land that time forgot, the land where we can do nothing more than attend appointments as they come up, do what you’re told to do, and wait.

Steve is relatively well, he’s still very tired and he feels guilty about the amount of time he is resting, but his body is literally fighting for it’s life, and that is exhausting. And I genuinely don’t resent him for that.

But this waiting, this feeling of completely helplessness, of not knowing “what next” is hard. There is literally nothing we can do except sit and wait.

And I’m not great at that.

I think it’s easier if I don’t try and play catch up, Steve has notes he’s written from the start, I didn’t do that, so I’ll just write how I am doing, how we’re doing, from now.

We’re 8 days after the second dose of immunotherapy.

“How’s Steve?” I can answer that one. He’s tired. Very tired. He sleeps, a lot. I wake him up and get him a cup of tea and his morning meds before I go to work, and when I get home from work he’s usually back in bed, and either trying to sleep or asleep. I wake him up for dinner about 7, he eats, watches whatever we are watching on tv, and generally goes back to bed about 9.30. He’s got some odd niggles, but so far the side effects seem to be going relatively easy on him (touchwood, fingers crossed etc etc)

“And how are you?” is usually the follow up question. And I don’t know. I genuinely don’t know how I am.

I am sad. I am sad that it’s likely my husband isn’t going to be around for all the exciting times we had planned for when the kids didn’t need us anymore. For the trips and holidays we were going to have together. I am so sad for the girls, and for the big things in their lives that he might not get to see. I am sad that I don’t really get to see him. I’m sad that he’s going to die, and leave me on my own.

I am cross. I am cross that suddenly my life, our lives, revolve around cancer. I am cross that this wasn’t the plan, we had kids young, we got a mortgage young, so that we could spent our middle age doing the things we didn’t do when we were young. We have 3 years left of the mortgage, we have both kids grown up and well able to fend for themselves, we had just begun to enjoy time away together. We had begun to settle in life as a couple again, and it was good, but now that future is unlikely to be long. I am cross at the disruption cancer (and Covid) has brought to the girls life’s when they should be having the time of their lives. I am cross. And I am sad.

I am irrationally cross. I am irrationally cross that suddenly everything around the house, all the little jobs, all the dog walking, all the “getting stuff fixed”, all the boring, mundane stuff like emptying the bins and the dishwasher – suddenly everything is down to me. And I am irrationally cross with Steve about that.

I’m feeling sorry for myself.

And I’m feeling selfish about feeling like that. I’m not the one who’s got cancer, who’s being pumped full of drugs every 3 weeks to try and extend my life – and I know he’s not doing it for himself, he’s doing it for me and the girls. And I’m getting cross and slamming cupboard doors because….. well, last Friday it was because he’d been able to go out for breakfast, but he hadn’t emptied the dishwasher.

But generally, the answer I give to the question “and how are you?” is “I’m OK thank you” Because it’s easier, so much easier than going into all of the above. And because, compared to Steve, I am “OK”.

Katie x

Steve has invited me to become a contributor. And I hope to add some insight as to how it is from “the other side”.

He says everything so eloquently, and for a man who is hard to get much out of in a conversation (those of you who know him will know what I mean lol), he writes beautifully and it helps him process what is happening.

He’s already posted about his end of the diagnosis process but here is some of it from my view point.

That first night, when he was admitted, all he told me was that they “had found something on his lung” – oh well, I thought, they find things on lungs all the time, it’s likely to be some scarring from that nasty nasty chest infection he had that literally floored him for 3 months in early 2019. He didn’t tell me that he had been told it might be cancer. I (honestly) thought he was being overly dramatic, and that in the morning they’d do another few tests and we’d bring him home and all would be well.

The next morning I went to work, I told my boss I’d have to take him home at some point, and that I was sure it was nothing to worry about.

(Perhaps I should mention at this juncture that Steve’s glass is always almost empty, mine is always almost overflowing – we usually balance each other out nicely :))

Then I get some messages from Steve saying he’s seen a consultant who has told a bit more about what they have seen on his chest CT scan, and that there’s lots of dots. And that the next thing they want to do is a pelvis and abdominal CT scan to see if there’s anything else to worry about.

My glass very rapidly empties.

In the last few weeks he’d been having blood tests, and one of the things they had identified was that his iron levels were high, and they had done further tests to make sure his liver function was OK, as this could be a cause.

My head immediately went to “what if it’s liver cancer, it must be liver cancer, and it’s already gone to his lungs”. My colleagues and my boss told me that was obviously a very bad worse case scenario, but honestly, I was jumping to conclusions and I shouldn’t worry just yet.

Because of Covid, I can’t go and see Steve. I’m in the same building, it’s frustrating. His consultant “is going to come and find me” and talk to me – hours later (probably only 1.5, but it seemed like a lifetime) I track her down, and she asks me to come down to the ward. I see her and she puts me in a room and says they’ve just got Steve’s second CT results, and he wanted to go through them with me with him. Did I want her to go through anything first, or get Steve in. I ask her if it’s bad news, and she tells me “it’s worrying”

She goes and gets Steve, and it plays out as he has explained in other posts.

He goes back to his bed. I go back to the office, except I get as far as the office of a wonderful friend and colleague, and I fall in her door and sob. She mops me up, we have an honest conversation. Kidney’s are ten a penny – you can live without one of those. Tumours in both lungs – that’s bad news. I’m not daft, she knows I’m not daft, she’s a senior nurse and tells me straight.

I get back to the office – I sit in my corner and retreat into myself. My wonderful colleagues listen and offer what support they can. They remain my rocks.

I go home, I tell Kira. We go back and collect Steve. We bring him home.

And we cry, and cry, and cry. And Hug. A lot of clinging to each other happened in those first few days.