Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today.
To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over two appointments. It's good not to feel rushed. He gave me a very thick book about the whole procedure and I will also have a copy of the letter he sends to my regular haematologist.
I came away well aware that this is a huge and risky process, but having met this consultant and the main SCT nurse, I feel I would be in safe hands.
If a donor can be found, I am inclined to follow advice and choose to have it. I have another telephone appointment with Prof Harrison before my next Southampton appointment, so there's time and opportunity for further discussion.
There are some logistical issues with twice weekly follow up appointments, each of which would be a 140 mile round trip. Luckily my husband, although ten years older than me, is fit and willing to drive, but it would be demanding for both of us.
Again, thank you all for your thoughts and sharing your experience and ideas, Jennie
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Hello Jennie - so pleased that you can be confident with what sounds like a super team - just wanted to wish you well with whatever decision you make for your next steps. Very best to you Anne-Marie x
So happy you had a good appointment and that you are closer to making your decision. It sounds like they were very good at explaining everything. I hope you find a suitable donor soon. Wishing you well, as always.
Very Best to you ,I hope you find a donor if you really decide to go ahead.I can only send you Bon Chance and all my thoughts for you & your treatment.
There are others on here who can offer proper advice.You are a brave & positive lady I have great admiration of you. Pensees Chaleureuse Jennie. Sally
Staying strong & positive shows us all the level of your great reserves of resilience ...
Warwick, from our MATES group here is in Oz, is likewise demonstrating his ongoing strength & determination, now he's on the other-side of the ASCT tunnel journey etc...
That does sound like good news and that you are getting very comprehensive assessment of whether the SCT is the right treatment option for you. Please do let us know what you learn as the process unfolds.
Regarding the trips for follow-up, you may want to consider overnighting for at least on of these trips. I also have to travel about 80 miles each way for some of my specialty care. I will sometimes spend the night at a nice place within walking distance of the clinics. It is worth the expense, particularly when the appointments are very early or very late. Perhaps the hospital has some arrangements to help reduce the cost.
Thank you Hunter. We did stay over for two nights but I hadn't really thought about that for the later check up visits. Good idea about asking if there is help available with the cost.
Hi, you sound calm & relaxed. A good frame of mind to allow clear thinking & decision making. The folks sound amazing & it’s clear your in good hands. Very happy for you! Katie
So glad you had a good appointment iam also having stem I have a doner match but my consultants at guys want to wait as mine is a lot more risky than most so my chance of survival is less it’s a lot take in amd I found great comfort speaking to others that had been on the journey they have the best advice Chris and Jedi are both amazing and I hope whatever you decide you get the results you want the travelling is a nightmare though I travel from Stoke to London weekly and it’s hard sometimes but needs must it’s great to hear you have great support from your hubby good luck 🤞🏻
I will be thinking of you on your stem cell journey too. There is so much to take in isn't there. I hope that you reach a point where it's safer to go ahead, if that's the best thing for you. I can imagine that Stoke to London would be exhausting.
Wishing you all the best, from what I've read a SCT is quite a common treatment for many leukemias. It's just not that common for MF yet! Maybe because it's not that urgent, while with some types of leukemia it is the only option. Good luck and keep posting.
Jennie - it sounds as if you have got an excellent team which is reassuring when having difficult choices plus exhausting travel.
Your posts are also a reminder for us all to encourage friends and family to go on the donor register. I'm not generally a social media fan (other than this forum!) but when my daughter did, she did her best to publicise how easy it was on her facebook page.
Having a consultant, and their back up team that you feel confident in, and that you feel safe and happy to be under their wing, makes a difficult decision that much clearer and easier. I will always remember when the consultant I had said, 'please, call me Ram'. It was a small thing in a way but at that moment I felt he was somehow personally involved, that I was not just another patient. I still think about it all every day, and it is still an astonishing process for me, one that got my life back some 26 months on and counting. Yesterday, by chance, I came across the Anthony Nolan card I was given just before the stem cells flowed into me; on the front it says, 'for some it's day zero', and inside, 'whatever you call today one things for sure: you'll remember it forever'.Sending you all best wishes.
Hey Jennie , , all very encouraging and im pleased you are happy with the first stage of your consultation which is critical to your overall confidence level. It's a measured approach which allows you the time to digest the information and collect your thoughts
However from the 'other side' such is the intense, complex and often protracted nature of Stem Cell Transplant (unlike an operation) my view is that in any team doing them everybody from the top bod to the dedication of the nurses, to the person cleaning your room has totally bought in to the patient, the process and is committed to a successful outcome.
In my experience nobody in the chain from start to aftercare wants anything less than that and there's no reason from what you've said that your team is any different so I hope that gives a little more reassurance.
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