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….)
It’s been a while again, but I want to thank everyone for their well wishes regarding the treatment in Bristol. The first one went well, and I’m due to go for the next on Thursday and Friday this week. The process of the treatment was simpler than I had thought it would be, and was very relaxed- each day I arrive, get hooked up to the machine, and just sit in the chair (a nice one like the dentist’s) and wait for the machine to do its thing.
All whilst looking incredibly chic in my sunglasses and bobble hat! We went for coffee after the treatment on one of the days, and the photo below was the result of my ‘cool’ outfit and a very large plant. Whoever knew Bristol Royal Infirmary was so exotic?
Another update: I’m no longer an inpatient!!!!! I am finally home, though having to return to TCT daily for my infusions, I still need treatment for the CMV. Thankfully my bloodwork is showing the drugs ae taking an effect, so it’s all good.
The final thing I touched upon during my last ‘update’ blog was my hair. It continued to fall out over the past few weeks, so I have now shaved it off. And I’m not too upset. The transition from patchy-fally-outy to skinheadish is definitely a positive one. I may still be devastated that it has fallen out, but I’m glad I won’t have hair all over the place any more. Please remember: my being bald doesn’t mean I am suddenly more ill, or have cancer again. It’s just become a part of my post-transplant journey, something all transplantees will agree is weird, unpredictable and just plain doesn’t make sense most of the time. I’m still ill, but not. It’s a bit of a confusing place to be, this recovery phase and even more confusing to try and explain. Also, being bald DOES NOT mean I look like Sinead O’Connor. Or any other bald woman. Because I really don’t, you know except for the fact we have no hair.
I’m glad this next week is going to be a busy one, with Bristol, TCT Cardiff every day, being in uni and assignment hand ins because it’s also the anniversary of the week I found out I’d relapsed. Which means a year has gone by already. Can you believe a whole year has gone by? I’m struggling to, because though I feel like forever has passed by since everything went up sh*t creek, a year seems like such a long portion of time to know I’ve been in this way for. I may talk more about it later in the week. I don’t know. Urgh. And that means 2 years since diagnosis is impending, but also the mark of me being a year in remission (YAY)
There will be a full-on post coming about it soon, but get your Santa costumes, tinsel and baubles and be ready to run to beat blood cancer!
It’s going to be on the Saturday 12th December at 10am from the Olive Tree near the Oasis in Croesyceiliog, in association with Griffithstown Harriers and in aid of Bloodwise. It’s going to be fun for all, and at only 2 miles the whole family will be able to get involved! It’s only £5 to register and I can’t think of an easier way to get on Santa’s good list…
Keep your eyes peeled for more information over the next few days, but if you’re already sold, you can sign up at https://bloodwise.org.uk/event-challenges/run/family-santa-runl
PS. A HUGE thank you to the Knitting Cwtch at Llantarnam Grange for their amazing donation of hand knitted hats. The skill and craftsmanship that has gone into them is beyond belief, as is the number! There are hats going to the Noah’s Ark Children’s Hospital, Teenage Cancer Trust Cardiff and the Oncology Centre in Bristol. I will post some pictures of them being modelled when I can!