Since I last blogged in October I have very slowly been getting better but seemed to plateau in December. I read a bit about blood clots and found that if they have been around for a long time (mine started in May last year but we mistook the symptoms for sinusitis) they can leave residue like scarring which is permanent. Dr Alexander and Pip Penny (my oncology team) brought together a cross functional team including haematology, vascular surgery and interventional radiology to look at my case. After considerable discussion and contemplation they arrived at a potential solution which they named ‘angioplasty gentle’. The plan is to go in and try to alleviate the restriction in flow by using a traditional ‘balloon’ approach, check it’s effectiveness with ultrasound inside the vein (wow!) and if that’s not fixed it, insert a stent. They don’t really want to have to insert a stent because it’s very rare to put one into the jugular and there is not much evidence of their longevity so if that is the outcome, it will have to be closely monitored… I’m pretty much in that place now so it shouldn’t make much difference!! This was scheduled to be carried out 02/04/2020.
Hurrah! At last, some light at the end of the tunnel. It has taken 3 months to get from the ‘I’m just not getting any better’ discussion to this point.
And then Coronavirus kicked in.
It’s the most bizarre situation. It’s like having cancer doesn’t matter, we’re all in the same boat together. People are saying “isn’t this great having all this extra time, but so hard not being able to get out and about to do what I want to do”. I have pretty much been in this situation since September! I can count on my fingers the number of times I’ve been out other than to the hospital or doctors! But then having cancer does matter, we realise that if we’re classed as vulnerable, we’re put in a different boat. The ‘shielding’ is as much about protecting everyone else as it is about protecting ourselves. Basically it feels like we’re being told ‘please protect yourselves because we’ve got more important people to protect’ and I get that but I think that message may be damaging for many people. My mum who is a very young 72 says she had never felt old, until this, having it pointed out on such a regular basis makes her really feel it now. The thing is I think I’ve had this sense that I needed to contribute since my diagnosis (as you’ll know from reading my blog) but it’s only now that I’m seeing I have this underlying guilt that I am draining the valuable resources of the NHS and wider universe so I’d better be sure that I’m worth it 😍
When my surgery was cancelled, it was for two reasons really… they said that I was too vulnerable to risk being in the hospital for surgery and because this surgery is not life-saving (they’re quite rightly prioritising the stretched resources). It will hopefully be life-changing, hugely improving my quality of life, but I won’t die if I don’t have it so I can wait another who knows how long (but at least 3 months) to have it. At least the light is still there and I know that something can be done when the time is right.
I was talking to my friend Liz across the field about it (digitally of course!) and said I feel that we’re so lucky in so many ways, I can’t complain and she said, “the lucky people are those who can see how lucky they are”. I love that ❤️
I have been procrastinating over writing a blog because I was waiting for good news or at least closure to a story (there have been several running through this last few months) but I realise that sometimes I need to just say something to let you know where I am and what I’m doing so I will try harder from now on 😍
Next Friday at 09:45 I will be on Facebook live at Mand’s Laughter Yoga doing a 45 minute session of laughter and relaxation. Why not join me from the safety of your home? Laugh with me or at me, you’ll benefit either way, I promise!
Please stay safe
Talk to you soon
Lots of love, Mand ❤️