05 Jul 2018

Paul’s multiple myeloma journey

Paul, 50, was told he had multiple myeloma two days before Christmas 2016. Alone and in shock, his first concern was how to break the news to his family. Only later did he start to take in what the condition meant for him. Here, he describes how counselling helped him cope with treatment and focus on the future

I’ve always been fit and healthy and have enjoyed participating in sports all my life, especially and most recently long-distance running. I’d just been on an autumn walking holiday where I’d climbed Mount Snowdon when the first symptoms of my condition started.

I noticed I was getting very tired more easily than usual and in a short period of time had started to have bone pain in the upper part of my body. By December, this had escalated considerably, resulting in my having difficulty in walking and undertaking basic movements such as getting out of bed.

My appointment with the haematology consultant was on 23 December 2016. I remember this date well because it was the last working day before Christmas and I was the last person to be seen.

I’d gone on my own as I hadn’t been expecting very bad news. Even when the consultant nurse specialist sat down with me I didn’t realise the enormity of what I was about to be told. Indeed, I remember even joking about how well I was being looked after with having a private nurse.

Coming to terms with my diagnosis

When the consultant told me I had incurable bone marrow cancer I initially took the news quite well. I was more worried about how I was going to tell my family, especially with it being Christmas. I have an identical twin and a sister, both with families, my partner and my parents too.

It was only later, when I got home, that the news hit me and I broke down. As well as being told the cancer was incurable, although treatable, I didn’t know why I’d got it, how I’d got it or when I’d got it. There were a lot of questions which were unanswered.

About two months after diagnosis, I started seeing my haemo-oncology counsellor, Surabhi. By now I’d started an intensive chemotherapy and the pain had started to subside quite quickly.

Sometimes, I find it easier to talk to somebody other than close family or my partner because while they do understand and they care and love you, I find I can talk more freely to someone I don’t know. It’s not just about your illness, you can talk about anything and everything going on in your life. It’s a relaxed atmosphere and you can talk about anything to get it off your chest.

For quite a long time after receiving my initial diagnosis, I couldn’t stop thinking about that moment when the consultant told me I had cancer and my life would change forever. It was going over and over in my mind all the time, word for word what she had told me.

Counselling helped me move on

Having counselling has played such an important role and helped me move on. It’s stopped me dwelling on things I couldn’t control or questions that remain unanswered, because you can tie yourself up in knots thinking about all the negatives.

If I hadn’t spoken to Surabhi about my condition and instead bottled up all my feelings and emotions, I don’t think I would be in the positive position I’m in now, both mentally and health-wise. I truly believe that other conditions, for example depression, could have affected my wellbeing and ability to get through the intensive treatment that was being administered.

We all have our bad days, sometimes we don’t stop thinking about what we’ve got. That’s one reason why I try to keep as active as I can. I’m a big advocate of trying to stay positive and, for me, it helps to keep busy. I can’t run anymore, but I still help at my local running club by supporting the races and being a time keeper. I can remain active by cycling, swimming and walking, all of which I try to do as frequently as possible.

I also find group therapy sessions with other people who have my condition are a really useful tool in openly speaking to those who understand. They are attended by people who are newly diagnosed through to those who’ve been in remission for 10 or more years. That’s what you want to hear.

In remission but still benefiting from counselling

I had a stem cell transplant in the summer of 2017, which was very tough mentally and physically, and I continue to have chemotherapy. I am now in remission. I see Surabhi as and when I need her – I know I can always ask her for an appointment if I need to talk something through because ultimately, worrying can affect your health and potentially have an effect on what you’re being treated for and how you react to this.

I’m still involved in a trial, which will mean my having chemotherapy until June 2019 which, for me, acts as a form of security blanket as my condition is monitored every week, so I know how well I am on a regular basis. The test for me will be next year when those weekly tests will stop. I think then I will probably be seeing Surabhi again because that’s another hurdle to get over.

What makes myeloma one of the rarer cancers is that it relapses, so you have to go through being told you’ve got the condition time and time again. That, psychologically, is very hard to accept and this is why I think it is so important to have somebody like Surabhi to talk to to.

I try not to dwell on when that moment will arrive. I know it’s going to happen, but it could be years away and that is the focus I need to concentrate on.

Life has changed and my health is now the priority, but it’s boding well for me – I’m looking to the future and not thinking in the short-term.

Leukaemia UK has funded the first service of its kind to offer dedicated counsellor and clinical psychologist support for haematological patients at King’s College Hospital in London. We anticipate that the first Leukaemia UK Mind & Body team will find that patients recover faster, need fewer medications and can be released from hospital sooner when they feel supported. Leukaemia UK hopes to fund more services like these across the UK.