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Bristol Trips, Baldiness, Future Fundraising and Stuff…

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?
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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)

I want to think of more positive things, stuff I’ve done and am doing. Which brings me onto announcing our next RemissionPossible fundraising event….. A Santa Run!
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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

Keep Smiling!

Emily 🙂

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!

Recovery and Progress: No matter how it may seem

Today I am officially 6 months and one week post transplant. Counting the weeks I know 27 have passed. A quick search on my phone tells me that it was 187 days I received new life, but that could be lies seeing as I stopped counting days at 100.
Wow.
I meant to write a post on the actual six month, but hospital admissions got in the way of that, and what is a blog unless you feel like it. I guess that’s the element of “no matter how it may seem” about all this.
Because in the past week, I have taken the single biggest step since having the transplant in way of.recovery.
It’s probably the most exciting step as well….
I HAD MY HICKMAN LINE TAKEN OUT!!!!
Anyone who has ever has to live with any sort of permanent central line will know what a huge deal this is and how much it means.

Admittedly, I had it removed due to infection (not my fault may I add) but the fact it hasn’t been replaced shows how I am no longer dependant on electrolyte and blood product infusions. Less than two months ago I was having    blood every fortnight, platelets almost 3 times a week and magnesium at least twice. I’ve come a long way.
I may still have CMV, but I’m having a new form of treatment for that, so that’s all good. I still have this mysterious para – influenza, the flu that doesn’t make you feel ill, and we can’t get rid of….but that’s all good. I probably still have mild GvHD. Clinically I look a bit shifty still, but even my consultant has to admit in that person I don’t really match up to my notes, I’m too well!

I’m a great believer that if.youre well enough to be bored, you can’t be that ill, and this past hospital admission has really shown that. Thankfully I was discharged today!

I am so happy with where everything’s going. I’ve had a Chinese takeaway, something we couldn’t have dared do without a decent neutrophil count, however the removal of my stiches today has lead to the most exciting development…

I have had a PROPER bath for first time in 9 months!

Yes, this is a weird thing to share, and yes I have been washing since November, let’s make that clear.

You see, living with a hickman line isn’t all about just having a tube you can see. It’s a tube that genuinely goes inside of you, meaning anything that tube is exposed to can too. Meaning washing becomes a fiasco of tape and towels, and not getting the dressing wet and being careful and most definitely not having a deep relaxing bath.

Having one today was freedom. Bubbly, hydromoly, blissful freedom.

I am very glad the bathroom is a private place because if anyone had seen the way I was smiling just laying in the bath, I fear I may be off a rather different type of hospital for sure!

Just imagine though (if you’re a bath kinda person) how great a deep, hot, bubbly bath on a bog standard day…
Now imagine it after being discharged
from hospital, after having to have a cannula placed, needing a relax AND having been deprived of a proper bath for almost 9 months. You can see why I’m a happy chickie right now.

Don’t take the little things for granted, because they are great. I’m not saying that to make you be ‘inspired’, make you reassess your life or suddenly start crazy philanthropy. People with cancer are ordinary cool people with the short end of the stick. I’m saying it because life is awesome. Especially the bits with baths and Chinese food and steak. Hickman lines and transplants and doctors and all that are pretty great too, but it’s better when we don’t need them.
I hope you’re all doing well and that you get in touch with how your lives are going 🙂
Keep Smiling,
Emily

P’S. In case you were wondering, because these things are of great worldly importance, yes my bath did indeed have a rubber duck 😀

Next stop : The Beach!

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Herman is no more!

Becoming a Hybrid Human…

Let’s get ready to rumble!

I am booked in as a patient, the consent forms have been signed, and the chemotherapy is up- I have officially begun Bone Marrow transplant prep!

It’s a little scary I have to admit. Though it’s obviously more daunting for me, I imagine many of you will be quite innocent to the transplant process, so I’ll try and break it down best as possible, so you get some of the things I will be talking about in the coming weeks and months!

The most important news first- I have a match!!!!

Of course I wouldn’t be stating the transplant process if they hadn’t found m a match, but the decision has been up in the air between different donors, and I didn’t find out the outcome of the decision until yesterday morning.

I am so incredibly grateful to this anonymous Spanish person, that I may never know who is doing such a big thing for me. Words can’t explain how much I feel I need to be able to thank them, because I will literally have their blood in my veins!

To start, did you know these things about transplant?

  • A bone marrow transplant, unlike the transplantation of organs, doesn’t require an operation. The actual transplant itself is seen as the easiest part in fact! Receiving the cells, is an infusion much like having platelets.
  • If the donor of the cells has a different blood group, the recipient’s blood group will change! My own donor is the same group as me, B positive- so my blood will stay the same group (just different genes!)
  • As mentioned, my blood will be completely ‘new’ after the transplant! It will have the genetics of my donor, so a genetic comparison of a cheek swab and a blood test after transplant would come up as different people. As my consultant says, I will be a hybrid human from now on!

A bit more insight on me….

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I have reached a new level in boredom…

Today (Saturday 17th) is day -10 on my transplant protocol, meaning I have ten days until I have the transplant. This is made up of 2 days of chemotherapy, then 4 days of radiotherapy, then 2 days of monoclonal antibody therapy, then a rest day, then a day to start the anti-rejection/immune suppression drugs..’.Then FINALLY the transplant itself!!!

It’s going to be a bit of a long slog- once I’ve had the transplant I’ll remain in isolation for between 3-6 weeks afterwards, and I will have to semi-isolate myself from people for at least the first 100 day after the transplant. Hopefully, when I reach 6 months beyond, if I don’t show any signs of GvHD (graft versus host disease) I can have my immunisations as soon as possible, and go back to normal. Even if I’m not quite right, and am having GvHD- which is the graft battling against my own cells and causing issues, I’ll be well within the next few months.

This treatment will keep this pesky, evil cancer away for good- the rest of my life is so worth doing this for! Though I know it will be hard work, I am looking forward to getting it done, being done with side effects. The monoclonal antibody therapy is known to cause fevers and rigours, and is nicknamed ‘Shake and Bake’ so I’m looking forward to getting that behind me.

I am super thankful for all the support so far and am pretty bored (and I’m on day -10) so please send me blog post suggestions, links your own blogs, funny clips on YouTube and cake recipes (?!)

Once I reach Day 0 of transplant (the day I have the transplant) I will be doing the #100daysofhappiness challenge, to document my journey up to day +100

From the 27th I will be Welsh outside, Spanish inside…and I can’t wait! Perhaps I will discover a passion for flamenco, or suddenly be able to catch a tan, instead of remaining my ghostly speckled self…..

Keep smiling!

Emily