The gap between my blogs seems to be getting longer, for no reason other than that I’ve been really really busy but I’m conscious that I need to update on various matters so here goes:
I had a great few days off at half-term with Dan & was immediately relieved when the clocks went back during the first weekend. Not sure if my reliance on the clocks changing has become worse since my diagnosis, or whether I’m just taking more notice but this year it really has made a difference to how I feel & to my “get up & go” in the mornings! Just before my leave I attended the Connect event for LLR at University Hospital of Wales. I really enjoyed listening to the speakers, caught up with a few people I’d met at previous events, &, took the opportunity (as I like to do) to mention to a few people how important it is that we focus on the holistic needs of patients rather than “just” their clinical needs. The analogy I have used a number of times recently is that we are winning the war but losing the peace – the war in this respect being the clinical battle & the peace, psychological support, because whilst you are on watch & wait, or in remission, the battle is predominantly mental. It was extremely encouraging to hear how LLR is using the outcomes of the Prioritising Patient Needs project to redefine the way forward & to incorporate those very real needs.
Also, during my time off, I travelled to London to take part in the project filming blood cancer patients about their experiences, which was very interesting. Having never taken part in anything like this before I found it a little disconcerting being on the “wrong” side of the camera but soon relaxed & everyone worked so hard to put me at ease! I’ve always been pretty open about my cancer & the impact that it has had on my life & am hoping that by doing this film, it will both help & encourage others to be far more open about their needs. It was also great to have the opportunity to meet a couple of people in Head Office with whom I’ve exchanged emails & telephone calls over the past 18 months & also to meet Andy Jackson who has always given me such fantastic feedback on my blogs. I find working alongside LLR incredibly rewarding & am now waiting in anticipation for my next “job”.
The paragraphs above were where I originally intended my latest blog to end, but as an addendum, something happened last night which brought me up short, & which illustrates I think perfectly, the battle faced by so many of us on watch & wait….
I sat down with Dan to watch The Santa Clause 3 ( I LOVE Christmas films even in November !) & all of a sudden Dan said that when he was older he was going to be a blood donor. I remarked that I wished I could give blood & he said that I couldn’t because I have blood cancer. And with those words, my mask slipped & I started to cry & I found that I couldn’t stop. As part of my attempt to hide my upset from Dan, I leaned over my phone & typed in a post to the online support network that I have mentioned in previous blogs. No pun intended, this was a bit of a watershed for me since I openly admit that I struggle to ask for help, & I was completely humbled by the messages of support that poured in (24 at last count). I’ve said before that I often feel like a fraud, a “fake” cancer patient but Dan’s comment had completely unintentionally opened a wound which was soothed by some incredibly kind & generous people who took time out from their own daily struggles to offer support to me.
I’ve said many times that the challenge for myself & many others is currently predominantly mental & I suppose I shouldn’t really be surprised at my mood since I’m coming up to my next psychology appointment. I was however absolutely stunned at my reaction to an extremely matter of fact remark from my wonderful son who has accepted so much at such a young age. I think we can all learn a great deal from children, who see things in a much simpler way, viewing everything as either black or white whereas for me there are so many shades of grey & this contributes to my battle to stay on the straight & narrow. It just goes to show, that in my current mind-set, it takes very little for the mask to crack.