Well, after being nudged by the Macmillan on-line team I have just joined this group and thought I'd drop a quick line to say 'Hello' and give a little overview of my wonderful life - visualise the classic clown car that backfires and the doors fall off! I think that currently sums up our family but, like the clowns, we never stop smiling. Apologies, as this may be a little long.
My wife was diagnosed with breast cancer in 2018 and whilst chemotherapy has been very good at holding the wee beastie at bay, it did get a chance to spread and reach out into the chest and the lungs. She’s on daily chemo and that has been really good, bar some side effects, however there are signs that things ‘may’ be bubbling once again. It’s far too early to say but two lymph nodes are slightly enlarged with, we think, one pressing onto the nerve supplying her vocal cords. We found out only last week the left one is paralysed, and she’s had a chronic hacking cough that she’s had for 7 ½ months now. It got so bad she broke a rib at some stage! She’s coughing away as I type this. However, I have had a play with a bedside atomiser that I’ve used with some oils designed to help breathing. We’re four nights in and the improvements have been stunning to say the least, lots more testing to do to prove it but wow, she’s sleeping through the night now.
For me, I’m the lucky soul with Myeloma, a blood cancer that I’d never heard of before and represents around 2% of all cancers. I was diagnosed in 2019 and this double whammy hit our teenage daughter very hard, she’s still struggling with it now, although there are some promising signs at the moment as she starts to mature and move from school to college.
I had chemo that worked very well and brought my paraproteins down – these are the readings from the blood that indicate the general level of activity of the cancer at any point. We did however have to stop this early, as I started to lose parts of my vision in my left eye, we thought it ‘may’ be due to the chemo but there was no past evidence of the chemo used causing issues like this before. I had some high dose chemo followed by a stem cell transplant which proved to be a pretty brutal five weeks in an isolation room followed by around 11 weeks of being Covid positive – this was when it first really hit the UK in March 2020. I ended up with Long Covid for best part of a year I think, it was hard to tell at some points if the long covid or the myeloma were the cause of certain side effects. The other prize I won was that 24 hours after I had the high dose chemo, the vision in my right eye was also damaged so I’m now visually impaired. The worst thing was that I ended up losing my licence and when I was diagnosed, I was just about to take my advanced motorbike test to qualify to become a blood biker for the NHS – Bummer.
Roll forward to December 2022 and whilst I had reached a form of remission I was always in pain and never fully well. I could however feel a change starting and all the way through this year my blood readings started to show a rise of the dreaded paraproteins. I knew it would come back and it’s something I’ve not been afraid of; I’ve taken it head on and, in all honesty, I’ve had a really good run on the first remission.
I officially released in August 2023 and we’re watching the bloods to see when we start my 2nd line of chemo, as they don’t want to jump the gun and used one of my options up too early. So, as I have a little break before chemo, I am rushing in my 2nd full shoulder joint replacement surgery which is currently pencilled in for December 18th Ho Ho Ho… I am currently practicing to open presents with one hand and my teeth as I’ll be in a sling for a wee while. I’m also going to get the Christmas lights up early also, God knows when they’ll come down though.
Lovely to be part of the group and apologies for the long pile of drivel above. I have a tendency to write quite a bit once I get going.
Annette,
Thank you so much for the info on the profile page etc. I've got things to learn on how the Macmillan pages work as I never realised you had separate profiles for different groups. I'll aim, to have a look at this tomorrow with a bit of luck and try and sort that out.
Sounds like you guys are going through the wars also, so sorry to hear about it all but I guess we are all in the right group. One of my old school friend's husbands is going through bowel cancer, although in all fairness I don't know much as I've only recently reconnected with her on Facebook. My father in-law had bladder cancer that spread, and he went through multiple operations to try and sort things. Luckily, he managed to come out the other side, but he went through hell with multiple operations to the point now he's refused anything else. He's got a hernia the size of a tortoise! Both of my in-laws are not doing well now and are probably on the radar for trouble as they are in and out of hospital through COPD and possible mini-strokes etc.
Sadly, unless some Lab Rat comes up with something soon my remissions are set to generally be 50% of the previous so I have a rough guide as to how things are likely to progress. However, I'm okay with that it's more the effect things will have on my wife and daughter that concerns me more.
Thanks a million for the message and I'll try and work on the profile bit tomorrow as I'm starting to flag after a busy day - what a knacker I am eh? 
