SCT journey update No.4: Hi all, just to give you... - MPN Voice

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SCT journey update No.4

LFCLove profile image
19 Replies

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant.

Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway )

The drive over was the best so far with only one hold up for roadworks just outside Cambridge and parked up right outside Oncology department (bonus) shame it’s not always like that!

Lung function tests took about 30 mins. 1st tests were in a Plethysmograph! which is a closed perspex box!

Wondered why his 1st question was “are you claustrophobic?”

It’s basically designed to check your lung capacity, condition, strength and ability to pass various gasses.

As you breathe into the tube, it monitors your lungs as they work harder via various painless breathing exercises.

Happy with the results, I then had bloods taken, which showed an high C-Reactive Protein (CRP) level, but this was because I contracted an UTI last week and am on antibiotics.

Had a final consultation with my fantastic Clinical Oncologist who went through in detail the various issues and problems that can / may occur during and after the SCT such as Graft versus host disease, various major organ issues which made me feel slightly unnerved. We finished with me signing the consent forms.

He made sure that if we had any questions, they were answered and to call if we had any further questions.

After that, my last test was having an ECG which took no more than 10minutes!

All looking good.

Home 10 hours later, ready for that cuppa and feet up.

Small issue pushed the dates back by a week, but am now booked to have a Catheter (Hickman line) inserted on 6th August, on the ward the following day and start a week of chemo followed by the sct on 15th…

I am determined to be as positive as I can, there are moments when I question my abilities but know I have a great support group in our family. I guess it’s only normal to be slightly fearful of the unknown but just have to remember what the alternative is…

All the best to every one here.

🤓

* Transplant from an unrelated donor

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LFCLove
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19 Replies
hunter5582 profile image
hunter5582

You have a terrific attitude! Wishing you success and all the best moving forward.

LFCLove profile image
LFCLove in reply tohunter5582

Cheers Hunter, appreciate it.

Hatchie profile image
Hatchie

Hi mate, it's great to hear that all preparations are going well.

This week I was told it's time to go to transplant. Once I commit they are thinking September.

Have you also been experiencing bursts of anxiety and uncertainty?

I wonder if I would fell less anxious if I had a better donor than a 9/10 unrelated.

It looks like it's going to be a big year for both of us.

Wishing you all the best. Keep the updates coming.

LFCLove profile image
LFCLove in reply toHatchie

Cheers Hatchie, yes there are many times that I’ve felt anxious as this is so surreal, like it’s not really happening as I feel so well. I think this must be quite normal as a person who is perfectly fit and well will hardly ever worry about dying.

We just have to believe in the expertise of all the medical staff and in our own abilities to survive. In my case, I also feel some selfishness in wanting be here a while longer with my family and see my grandchildren grow up.

I wish you well matey and let’s fight this together.

All the best.

G

🤓

Tortina profile image
Tortina in reply toLFCLove

I can understand how you feel through your various comments .

I felt very much the same way before my transplant exactly one year ago . I wasn’t ready to leave the planet either as had a new daughter in law and a new grandson who was 9 months old . I really wanted to be around to see my grandkids and my sons and their families . That was a huge motivation for me and still is to this day. . I took photographs of them all into hospital with me which sat on the table in my room . I’m so glad I did that . They helped me through my journey especially as they couldn’t visit me during my stay in hospital .

I have a very supportive partner and family and some great friends who have helped me through my journey .

All the info the consultants give you prior to transplant can be a bit scary but they have to tell you all that . I just trusted the fact that the consultant would not be putting me forward for transplant unless she felt that the outcome could be a good one . I put my trust in the doctors and nurses .

My advice to you is to keep looking forward , never lose sight of better times, take one day at a time and even when things are tough just keep going . Stay positive and don’t forget to take photos of your family into hospital .

You are doing great snd I can tell you have the right attitude so go for it !

Wishing you luck on your journey .

Tortina

Spanelmad profile image
Spanelmad

Wow you had quite a day!! Good luck for the next bit! Think of it in bite size chunks and you'll be back.home in no time.

LFCLove profile image
LFCLove in reply toSpanelmad

Thanks for this, it’s hard not to be overwhelmed by it all, but you are right, my wife always reminds me that I overthink things and to take it one step at a time….but that is me in general!

I send you my best wishes and let’s fight this and understand that one day that medical science will eventually cure these disorders.

X

G🤓

Spanelmad profile image
Spanelmad in reply toLFCLove

😄

Ebot profile image
Ebot

Wishing you all the very best for the months ahead. And sending you much strength. Keep us posted!

Scaredy_cat profile image
Scaredy_cat

Good luck. Like LFClove said I found it a bit of a roller coaster and tended to just swept along on the tide. The difficult time was making the decision to have the sct or not. Once I'd committed I just went with the flow

SouthSideA profile image
SouthSideA

As we say here, you got this!

Your attitude is an inspiration, and I have no doubt that it will ensure a successful procedure. Please let us know how things go and, if you ever need support from someone on this site, please do reach out. We are here for each other. Good luck!

Meatloaf9 profile image
Meatloaf9

Good luck to you on your journey. Keep your eye on the prize at the end of the road, a potential cure. Best always.

Cazbolac profile image
Cazbolac

I think you sound very brave. I wish you well with the treatment. Take care and good luck.

ABPD profile image
ABPD

All the very best to you as you start your treatment.

Bullace profile image
Bullace

I hope it all goes very well for you. All good wishes.

Cat_lady52 profile image
Cat_lady52

Good Luck and Best Wishes xx

Indigo42916 profile image
Indigo42916

Wishing you all the best with your transplant and recovery.

ETinNYC profile image
ETinNYC

Wishing you all the best on your SCT journey. Take it a day at a time. Stay strong and keep your mindset positive. You'll get through this and we are all here, cheering you on! Sending hugs from NYC.

LFCLove profile image
LFCLove in reply toETinNYC

Cheers ET, and all the people that replied. It’s becoming more real as the SCT gets closer and it helps enormously to know there are great people out there on this great planet.

🤓

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