Boredom and Beating Blood Cancer.
Is it possible to be busy to the point of mania, yet chronically bored at the same time? That’s how the past few weeks have felt to me at least.
Yes, I’ve been back in hospital again… but was discharged on Wednesday and am ready to get into the Christmas spirit!
There’s been nothing different to what we’re usually dealing with, more CMV issues and a line infection, but in true RemissionPossible style I’ve cleared the infection, saved the apheresis line and my suggestion for continuing CMV treatment appears (so far) to actually have been the best decision we could have made… Go me!
Most of the manic stress has come my need to micromanage my care and make sure all the different people who need to communicate with each other and do things actually communicate and do them. Assumptions have caused me a lot of issues… If you want something done, do it yourself is the case sometimes I feel, and have felt quite a lot recently
Adding uni deadlines and Christmas to all this certainly hasn’t helped!
Somehow, but predictably there’s been such boredom….. The longing to be out of hospital walls has been overwhelming at times. No lie, there is a new F1 doctor who didn’t want to have to see me yesterday….not for there having been issues in care but because I had literally cried on frustration, anger or sadness every time he had ever seen me! Bless him, he was terrified of having to deal with that again. That’s how it’s been though, me twiddling my thumbs, wondering when on earth my body is going to sort itself out!
But I’m out now, and ready to get all festive so I’ll tell you about the few genuinely interesting things I’ve been up to recently. The two things that I’ve been most excited to tell you about are both Bloodwise related!
The first was a bit of a while ago now….
Back in November I attended Bloodwise’s research open morning, where they showcased he current research going on in Cardiff (and gave all the ‘regulars’ a chance to catch up!)
You all know I’m a total science geek so attending a morning where numerous scientists were talking about their work and at the complete mercy of my questions was fab. The work the researchers are doing is simply mind blowing, and seeing the innovative way they were working to solve problems was inspiring for a girl aspiring to be one of them. Most know my discomfort around the word inspire, so that’s a big thing for me to say.
The morning had a very informal format where the researchers were available in the labs for you to wander between and chat to, which allowed a very different experience to usual conference type events.
My favourite thing was seeing a model that had been built of blood vessels to do investigation into endothelial cells that would reflect how CLL cells actually act in the blood – petri dishes can’t show the impact pressures and other factors have on how leukaemia cells actually behave. The main reason for using it was to see what potential treatments would stop chronic leukaemia cells entering passing through the endothelial cells into lymphatic tissues, the thing that allows the condition to worsen. The cases that result in a build up of leukemic cells in the lymph glands are generally the hardest to treat and the most aggressive.
Hearing about targeted therapy was also incredibly exciting, because it will lead to less harsh treatment, better survival and ultimately the day when we don’t see people having to endure numerous regimes before finding one that works – lab work will soon be able to guide clinicians to choose a treatment that has already been proven to work on a sample of that patient’s cells. I’ve seen people go through the anguish of treatments failing, or having resistance, so the idea of ending that is very hopeful.
I am aware I’m not explaining this very well at all, and that it probably comes across as boring but I assure you that it was fascinating!
There was a lot of talk about targeted therapies across the different researchers, with some using flow cytometry to see the abnormalities in patient blood components at diagnosis, then monitoring as they normalise, to looking a how the telomeres on the cancer’s DNA can indicate the level of treatment needed.
I’ve also been invited to spend a bit more time watching the team do their work, which I’m looking forward to.
If all that above meant nothing to you (or if it should have and I recounted it terribly!) here’s something I heard that’s a little less PhD and more personal blog and an analogy very befitting to this time of year.- Cancer being that guy at the party, the one who shows up, parties hard, drinks hard, drinks everything, then when everyone else is exhausted by him, cancer carries on, stealing every last remnant of food and drink from everyone else, until he’s the only one left going and everyone else (the cells) are passed out, done….
Paints a picture, right?
So the other things that we’ve been up to with Bloodwise is running! We held our Santa Run last Saturday and I feel it was a huge success. Though I’m still not sure on fundraising totals, we had around 115 Santa’s and elves running, all of them looking absolutely fabulous.
All sorts got involved, with a few buggies getting in on the action, and a scooter thanks to my sister. Some ran it in a breeze, others struggled…all finished and got themselves on Santa’s Good List for this year!
Big thanks to Griffithstown Harriers for helping organise, Be the Best Military Fitness for the fab warm up and The Olive Tree for selling tea/ coffee and giving us use of the room.
Everyone who ran, or donated are helping to fund the work I witnessed in the labs and are helping to cure blood cancer. The money that was raised will make a huge difference in meaning those scientists are funded in doing their work so passionately.
That’s it from me for now. I hope everyone else is beginning to feel a lot like Christmas!
Keep Smiling (and scrolling for Santa pics….)
Posted on December 18, 2015, in Charities special to us. and tagged beat blood cancer, Bloodwise research, bloodwise santa run, bone marrow transplant blog, life after cancer, science nerd, transplant problems. Bookmark the permalink. 4 Comments.