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COVID-19 as a patient
For two and a half years I have been having telephone consultations with my consultant. Would you believe that it was only recently (after these two and a half years of telephone appointments) that we got to have a face-to-face consultation!
The telephone consultations were odd as they didn’t involve any blood tests so they were a complete and utter waste of time. He couldn’t feel the lump in my neck over the phone and they had no blood results to say the white blood cells have got either worse or better!
COVID-19 and shielding
In March 2020, my partner and I were politely asked to leave the house we were staying at in Wales, so we returned home and locked the door behind us – that was the start of it.
For me, it is okay to be in isolation. I know if I don’t isolate, I put my health at risk. However, there are an awful lot of people like me who have a partner. Our partners and families are also suffering because they could go back to normal (or whatever we call normal now!), but instead, they’re still doing their best to shield. It’s having a big impact on immediate families.
My partner and I are now only just coming out of our self-imposed isolation, however, nobody has been in our house and we only visit our daughter’s and my son’s house. We’ve been in nobody else’s house, so it’s been hard work.
We will be keeping away from people as much as possible until Autumn. We are doing this as Fiona, our daughter, will be getting married in September and she wants me to walk her down the aisle, so she doesn’t want me to get COVID-19 and not be there. That’s the goal we’re keeping our heads down for. However, what we did do was go to a garden centre where there was an outdoor canopy where we could find a table that was isolated and sit and actually behave like normal humans. We’re trying to get back into that idea as pubs and restaurants are no-go areas for us.
Recently, my best pal and cousin both think they got COVID-19 from relaxing too much over the last month and as 60-something-year-olds, they both went into a pub. Nobody knows where you’re going to pick it up from, so we’re backing off pubs, restaurants and retail – life can’t get back to normal yet.
The only risk we take is by my son, daughter and their families. Those are the people we have to take a risk on, because if you don’t see them, what is the point in hanging around and waiting for nothing? So, you’ve got to make that risk assessment of how do I keep myself as safe as possible but still keep a quality of life.
Watch and Wait
Come November, I’ll celebrate 20 years of being on Watch and Wait. It’s weird because when you first get told you have cancer, you have all this denial and fear and tell yourself to get over and on with it. But when you’re trying to get on with it for 20 years, that’s what the new normal becomes (even though I’m not a fan of the term “new normal”). You’re just waiting for something to happen and nothing has happened. We’re sat here touching wood.
For the first 18 years of Watch and Wait, I found that it was doable because someone was holding my hand as we had consultations every three to six months dependent on how the cancer count went.
But then, all support just fell off and this is exactly what happened quite recently when I had a face to face consultation for the first time in two and a half years. We’ve had to keep pushing the system and I’ve been telling my GP to keep up to date and to do my blood tests. Nobody else was going to do that for me, nobody else was looking after me apart from my GP daughter, who is over the phone constantly telling me to contact my GP.
That’s the message I want to get to anybody who feels like me. I sometimes think, “Hang on, I’ve got leukaemia, but nobody’s checking up on me?” Because rightly so, everyone’s focused on those dying of the virus.
It’s got to the stage now where we have to look after ourselves. Now that’s okay for me because I’m a bit ballsy and I know which buttons to press, but there are CLL patients out there who are struggling, who are not feeling very well. They’ve been struggling with Watch and Wait for years, but they’re quiet, an introvert and they’re not going to kick up a fuss because they don’t want to upset anybody and they know how busy everybody is.
But hey, don’t forget me because when this is all over, I’m years down the line still with “terminal cancer” as they describe it. It’s not been easy for anybody. There are lots of people with CLL who will still be struggling because you feel trapped and you can’t do what you want to do.
What needs to be improved?
Looking back on the 20 years of being on Watch and Wait, the one thing that might have been good to have in our case is the ability to call up the health authority and have a quick chat with a haematology nurse or someone similar.
With the Northern Health Authority, you have this kind of fleeting visit to the hospital every three to six months depending on the results. I’ve been to Warrington Hospital for the quickest consultation you could possibly have once every six months for 20 years. And apart from that… nothing. The only help we get is given by Leukaemia Care and other charities.
So one thing that might be nice and I believe other authorities do it, is to have a person who you could just phone up at the health authority like a haematology nurse or somebody that you could just have a little chat with.