Hi all, I thought it was about time I gave you a little update on recent events.
The last few weeks have been a bit of a drag though unfortunately, for several reasons.
Firstly, about a fortnight ago I fell down the stairs in quite spectacular fashion, with one leg out in front of me, the other trailing behind me. There was a loud ‘snap’, which at first I thought was my trailing leg, but thankfully turned out to be one of the bannister uprights breaking. Given the height and awkward manner of my fall I was quite lucky not to break something other than the house.
What I did manage was to scrape a big patch of skin from my left foot, just above my big toe – right where the strap on my flip-flops sits. I have been wearing flip-flops all summer because; firstly, I like flip-flops; and secondly, with my back I couldn’t bend down to tie shoelaces. Only with a big open wound on my foot I could no longer wear shoes or flip-flops – I did try dressing it and going out one day, but it just aggravated the wound and set the healing back (as well as letting an infection get in there).
So regardless of cancer, this time due to my own clumsiness (and some lethal novelty slippers) I have mostly been confined to limping round the house, willing my foot to heal so I can actually don some form of footwear and go outside – which has been a bit tedious.
Having said that, it was nice in a way to have some enforced rest, as the cumulative effect of the chemo cycles seems to be taking it’s toll on my energy levels. I’m still suffering with dizzy spells, headaches and ‘near fainting experiences’. We think this is due at least in part to anemia and iron deficiency caused by the chemo, perhaps in combination with something called ‘postural hypotension’ (basically a drop in blood pressure and blood supply to the brain when you move from sitting or lying to standing). The effects are usually short-lived, but it’s becoming more and more regular – and the headaches have started cropping up when I am sitting or lying still.
The chemo also seems to be screwing up my veins – I have always had fairly ‘good’ veins, with nurses never struggling with blood tests or putting in a cannula. However, for cycle four of the chemo it took three nurses five attempts to get a cannula into me – which was no fun from where I was sitting I can tell you. Apparently the chemo can scar the inside of the veins and make them brittle, so perhaps there is some kind of negative effect on my circulation contributing to the feeling faint and headaches.
Last week the enforced rest came to an end unfortunately, with four hospital appointments in four consecutive days (including two days in London), which was fairly exhausting. Fortunately my foot had healed just about enough from my stair-diving antics for me to be able to limp around the various hospitals. I had my fifth cycle of the chemo on Friday – after we had driven back from London Sally dropped me outside the house, intending then to go and park the car. Unfortunately as soon as I got out of the car I had a particularly severe fainting moment and collapsed in the middle of the road, convulsing and breathing heavily.
I imagine it looked like a seizure, but I don’t think it was. I was conscious and aware of what was happening, and it just felt like an extreme version of my previous feeling faint episodes. When the worst of it had passed Sally and a kindly passer-by helped me into the house – once I was sat down again I was fine. But I think it gave Sally a bit of a scare. That’s the second time that I have had an extreme episode directly after chemo, so we will have to bear that in mind for the next cycle.
So yes, in summary the last few weeks haven’t been great in terms of my energy levels, or getting out and about anywhere other than hospitals.
This Wednesday we travel to London (yet again) for my first dose of the cancer vaccine – the final piece in my new(ish) treatment plan. As I have mentioned previously we have been waiting for this vaccine for a few months – it finally became available a couple of weeks ago, but despite this we have had two recent appointments for the first treatment cancelled – so fingers crossed that it will actually go ahead this week.
Supposedly it works well in partnership with the chemo I am on, so we’re glad it’s finally available and we’re keen to start as soon as possible – another branch on my cancer beating stick!
To finish on a lighter note, I found something which made me laugh a bit, and I thought I’d share with you. In the background workings of the blog you can see what people typed into Google (other search engines are available) to arrive at the blog. So in most cases it was some variant of the blog title, or ‘Ben Edge Cancer Blog’, or something similar.
But my personal favourite by some margin, was ‘herbal solution for Weebles’. I really would love to know what that person was actually looking for – perhaps some kind of herbal ‘final solution’? Whilst I am not keen on Weebles, I certainly wouldn’t wish that upon them.
That’s it for now – I will report back after the vaccine.
Sensible boring slippers from now on Ben! – or how about slipper socks, remember them, I bet you used to get a pair every Christmas, I know Michaela and Bryony did (still do sometimes when Santa’s run out of ideas!). Sounds like you’ve been having a rough time just lately with the treatment which is horrible but I’m sure things will turn around and I’m so pleased you’ll be getting the vaccine soon. Loads of love to you all xxxx
Hope the vaccine isn’t cancelled again, and that it works for you. My husband is a diabetic and his hypos can be distressing ,so very slightly understand how Sally may feel., but our love for our husbands keeps us going. God bless you all and lots of to you all. Xx Julie friend of Justin tuck and Sally
And spinach in those mega juices Sally preparing every day. Next box will also contain liver …… pate 🙂 And just stop throwing yourself all over the place – down the stairs, into the middle of the road – so not good for the image!! MEGA HUG for being so brave and dealing xx
Blargh. I knew it was going to be a rough week just in terms of the array of doc appointments and treatments…let alone curve balls. Thinking of you all…hope the vaccine wasn’t postponed again. xo
Dear Ben, Sally and Saskia,
Once again you have done an amazing job letting us know how things are going. We do hope that you have had the vaccine today and that the effects will be positive.
We must also say that the photos of Saskia are BEAUTIFUL!
She is so lovely.
Our thoughts are with all of you and PLEASE stay on your feet, Ben!
Lots of love and positive thoughts to all of you.
Ron and Nancy
xxx