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Looking for Support

Posted by
17 Feb 2016

Support noun: - a thing that bears the weight of something or keeps it upright.

It’s coming up to about two years since my original diagnosis for CLL, so I decided it was probably time to write something new in my blog. Especially as the nice people at Bloodwise (I’m not sure about the new name to be honest, as it sounds more like a character in a Norse Saga than a cancer charity) keep suggesting opportunities to help them out in one way or another.

In terms of my CLL, everything is generally ok. My latest blood results were still low and stable, which is obviously good. However, I was ill before christmas which took a week to shift and then again after Christmas. To be honest, it scared the hell out of me. Lucky it was just the chest infection probably picked up from my niece while I visited then in Wales over Christmas (I’m obviously not used to Welsh baby germs). It was the first time I’ve been properly ill since my diagnosis and I had to take time off work which is rare for me. To start with, I tried not to worry about it. But as it was still getting worse after a week, I thought I better speak with my GP and then the clinical nurse.

Fortunately, my next hospital appointment was the following week so we had a good chat at my checkup and she prescribed me some antibiotics which eventually sorted stuff out. I kind of felt a bit silly for worrying about getting ill as it was just a normal infection, but at the back of the your mind I’m always wondering if things have finally gone pear shaped.

When I was thinking about what to write about in this blog post, I thought about the different places I’ve managed to find support since my diagnosis. There are the obviously places such as GP and experts at the hospital but I don’t like to bother them unless I’m feeling ill. But if I’ve stuff on my mind or feeling down, it’s good to have other places to go.  Obviously, my family are there to help but I find it difficult troubling them with stuff and I’ve been single for quite a while so don’t have a girlfriend to confide in, but I’ve managed to find other places to turn to. My clinical nurse, put me in touch with Cancer Care, a local charity which helped my with counselling  and lessons in the Alexander Technique. But as they’re a charity they were only able to offer me a certain amount of sessions.

I enjoyed the Alexander classes and the relaxation they offered but struggled to adapt them to my actual life, so when the sessions stopped I decided to look at Yoga. I actually noticed that there was a Yoga teacher who hired a room at Cancer Care for one of her classes, so I thought that would be a good place to start. After googling them, I found the Lakes Yoga Fitness website and they sounded ideal as the instructor is heavily into the outdoors, hill walking etc like I pretend to be. I’d always a little wary of yoga in the past as I had the probably false image of everyone trying to become one with with their bodies, chanting and other arty farty nonsense. But I liked the sound of doing Yoga as a tool for gaining strength and fitness.

I enjoyed the first class, and it was a lot harder work than I imagined and you always get a sense achievement when you’re finished. Unfortunately, due to other commitments I don’t always get to go as often I would like. But when I’m able to attend for a few sessions in a row, I start feeling stronger.

My go to person when I’m feeling down, is one of my best friends. She the sort of person who doesn’t normally take any rubbish from anyone, plus people generally annoy her so I’ve never been  100% sure how we ended up as friends as I can be annoying myself a times! But I’m glad we are as she always manages to make me feel better about myself, no matter how I’m feeling. To give you an idea of what we’re like, when I told her that everything was ok after my latest hospital check up, she text back with something along the line of “It’s good to know you’re not dying yet ;)” Some may think that is inappropriate thing to say to someone with cancer but it just made me laugh. It always makes me smile when I see a text or a phone call from her. Usually it's to take the piss out of me for something I’ve said or done.

I can be a bit eccentric at times and definitely deserve the piss being taken! It's always great when she can spare the time for a brew or lunch or a look browse round the charity shops for the weird and wonderful, searching for a mutual passion of the retro and vintage. Sometimes, she also brings her daughter along with her. She definitely takes after a mother and I find it even more amusing to have the piss taken out of me by an 8 year old. I don’t have any kids of my own so it's great to experience stuff I wouldn’t normally get to do. I’ve been dragged through soft play areas, walked round graveyards (is it normal for an 8 year old to like looking at graves? But I know I like it!), wombling in supermarkets (you might need to google that) and attended a her birthday party. I love getting to pretend to be a kind of a Dad type person for a few hours, or maybe more a geeky uncle, but I have the advantage of not having to get involved when she’s being a madam when she doesn’t get her own way.

I know that if I didn’t have my friend and her daughter around, my life would be a lot less colourful and at times quite dark. I should tell her more often what she means to me, but I’d just get told to “Shut up and stop being melodramatic” which would make me laugh. But I know if I need support she’d be there for me, as I hope she realises I’d do the same for her.

One of the things my friend introduced me to was her local history group, The Lancaster and District Heritage Group. I first went along expecting to see a series of talks in dusty rooms about dusty subjects (I like that kind of thing) but they were actually busy preparing for an archaeological dig on a site near the Castle in the city.

I decided to get involved as I’ve always been a fan of time team and stuff like that (yes I’m a geek lol) and it was a really fascinating few days. Although it was hard work, there was a something quite rewarding being on your hands and knees scraping back the earth to reveal the past. I had a bit excitement dashed when I found a coin about 9” down, only to discover it was a one pence from 1991. However, as our digging descended into the ground, we did unearth part of a roman road. We’d all hoped to find something of that nature, but never actually expected we actually would.

I know that people aren’t as lucky as me when they’re diagnosed with Luekaemia and other blood cancers. I’ve been fortunate that haven’t had to have any treatment and hopefully never will. My life hasn’t really been impacted on in too many ways. It was hard to receive my diagnosis as I wasn’t in the best place personally at the time anyway. My life kind of stopped when I heard and it took a while to get it started again. But with the support of others, I’ve been able to change my life for the better and head in directions I never thought I would.

Sometimes, support doesn’t need to come from love ones or charities. Some of the people won’t have realised they were actually helping me. Before I was diagnosis, I never dreamed that two years down the line I’d know what a downward dog was, or that I’d be one of the first people to see a roman road in over 1500 years. I especially didn’t think I’d get to go down the big slide at a soft play area!

If you do find yourself in a similar position being told you have a blood cancer, feel free to panic because it's scary! But when you start to come to terms with things why not look for people and places that can offer support? If you’ve always wanted to take up knitting, pole vaulting or burlesque dancing but could never find in the inspiration to do it, why not start now? No one knows how long they have on this planet, so maybe it’s time to find something or someone to bear some of the weight and help keep you up right, as it might help you change directions for the better too.



Anthony, I just thought I would let you know that I really enjoyed your blog. I don't know much about CLL. I had Hodgkins (several times) and even now seem to pick up infections, especially in Winter. From hardly visiting my GP, apart from through my pregnancies, my diary seems to be filled with medical appointments, due to complications from the Hodgkins. Ah well! Still glad to be alive.

Your special friend and daughter sound just what everyone should have on prescription. My family and friends have been great, but especially being around my two grandchildren, who I might never have seen. Children tell it like it is.

Wishing you many more years of a fulfilling life. Best wishes

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