This article was originally published in late September 2019

As I sit here in a little slice of paradise thanks to the largesse of a much loved friend, it brings to mind the comments from many dear friends following my first post in this series and it’s a topic I do want to return to – support.

Support is critical. Without it, we exponentially increase the complexity of the emotional, psychological and practical elements of dealing with the illness. I call it my ‘support army’ and as the kind and generous comments about my first article demonstrate, they are out in force and I love every single one of them!

Balance is everything – you don’t want every conversation with family/friends to be about your illness – that’s just not healthy for you and even less fun for your support army. But just having people you can talk to or rely on for help is of critical importance. For example, one of my experiences of CLL is frequent dizzy spells and nausea. As a result, I am not allowed to drive so you might just need the practical help of a friend to give you a lift somewhere. You don’t need to talk to them about your illness – you just need a lift!

I am blessed to have the most extraordinary, wonderful brother and sister and the most magnificent (and kind) friends. Most of all, I have the strongest, most resilient, selfless, caring -and tough – wife on the entire planet. I am more grateful to every single one of them than I am capable of putting into words.

Thanks to my fantastic support army, I came to terms with the whole terminal illness thing relatively quickly. In fact, it’s almost liberating. No, honestly – it is. Knowing that you have an illness that will kill you puts a lot of things into perspective. You learn to live (responsibly) for ‘the now’. Everyone deals with it differently and there is no such thing as the right way or the wrong way – there’s just your way. People may tell you you’re wrong, or criticise your attitude because someone might find a new treatment or cure. Ignore them – deal with it your way. Most of all, don’t rely on false hope – if some new treatment or cure comes along, then that’s magnificent, wonderful – the all day party’s on you. But you can’t deal with the things you need to deal with if you are relying on that possibility. Be realistic but practical and pragmatic. My way was to tell everyone about it, others choose to keep it to their close circle. Whatever you decide to do, that’s the right choice because it’s your choice.

However, while I am not scared of the outcome, in the early years and from time to time still now, I do have a really rough time with the ‘night terrors’. Those ‘3 o’clock in the morning unable to sleep’ periods. When every fear and anxiety seems magnified. Those were the times when I got really scared (and tearful) about what the treatment would be like in the later stages of the illness; or what happens if we run out of money – stuff like that. I’ve seen too many loved ones go through hell in the final few months or have their final months/years lost in the anxieties of financial concerns. The darkness of fear and anxiety magnifies the worst possible scenarios in our brains.

But then, like a shining beacon of hope (oooh! Aren’t I getting poetic this morning – it must be this clean Scottish air!) is Macmillan. Julie was my assigned Nurse and she dealt with every question and was unbelievably helpful. There are questions and concerns that you simply can’t discuss with family and friends because they don’t have the answers and you don’t want them to worry too much. Sometimes an outsider is just what you need.

As soon as you are diagnosed with a relevant illness, you are assigned a MacMillan nurse. I urge you to use them to deal with all those questions you have that no-one else can answer. They’ve escorted literally millions of people through their cancer journeys. The breadth and depth of knowledge is immense – whether you need financial help/ advice, emotional support or just practical knowledge – they are truly brilliant. And if you have a few pennies spare, please consider giving to them. They deserve it.

If you’re reading this, you already know about the magnificent Blood Cancer Uncensored site. It tells you absolutely everything you will ever need to know and features interviews and commentary from people who are the most erudite experts in the field of blood cancer. If you use no other site, use that one and MacMillan’s.

Finally (and I’m not getting through this bit without tears), I cannot write an article about cancer support without talking about two people who were very special to me and Karon. In the last year, Karon and I have been to way too many funerals of dearly loved ones, prime amongst them, My Mum and Karon’s brother, Ted. But we have also lost two principal members of my support army. People with whom I shared a special bond because they also had terminal illnesses and we were able to have conversations that only people in our situation can have.

Bill Carroll was a dear friend for many years. We went swimming together, golfed together and chatted for hours about absolutely nothing (usually about Liverpool or Spurs!). We laughed all day together. We had so much fun. Sadly, his progression from diagnosis to death was cruelly quick. But I will treasure the conversations we were able to have as they helped me so much – I hope they had the same effect for him.

Heather Montoute was not only a deeply loved friend for many years for me and Karon, she was my counsellor. When I was diagnosed, she offered to counsel me. This was what she did for a living, but she offered her help, selflessly for free. That was Heather: Fiercely loyal, endlessly generous to her inner circle and resolutely independent. It is her passing that triggered my need to write these articles (so you can blame her!) as I had lost my primary venting mechanism (she would laugh when I called her that!). Her journey was even quicker than Bill’s but the help and tools she gave me still bear fruit today. I will never forget her telling me that there are few things more stress-relieving than loudly (and privately) shouting “fuck” for no reason whatsoever. She made me laugh so much. I am just so pleased that I was able to be of some little support to her in her final months when we reversed our support roles.

I miss them both more than I can express. But, from every shitty situation, there is always a bright light of hope and joy. Had Karon and I not met Bill and Heather and go through those experiences with them, we would not have the joy of having Natasha and Jack in our lives – our ‘surrogate’ children who we love with all our heart.

No matter how dark, there is always some light.

To my deeply beloved sister and brother, to my hugely loved friends and particularly, my simply magnificent wife, thank you all. I owe you all far more than I could ever repay. Your support means the world to me.

Stay strong. Fight hard. Smile lots