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LolaB

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LolaB
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  • Hi Sam It sounds like you are part of an incredibly strong family and that is absolutely priceless in the journey you are all on. I'm sorry to hear that on top of it all you have had a sad loss too. I joined the forum a few months ago as I am pre transplant myself and have found it invaluable, particularly in times that…
  • Good luck Becky, glad to hear all is going well. Best wishes
  • Hi Becky, I'm not having fertility treatment but have had all my pretransplant tests that you refer to - the hospital arranged for me to have them all in one day as I have a far distance to travel.....it was a pretty mammoth session but worked liked clockwork - 8 appointments in all including scans, chest X-rays, bloods,…
  • Thank you George - hope everything is going well with coming off the aciclovir for you, best wishes
  • Thank you all, i can't say how much comfort it's given me having this forum - I'm back at the hospital tomorrow so am pacing again! Somehow it's been two weeks on new meds already so hopefully we will have something to look at... Steve you are so right about water soluble aciclovir though - YUCK! Thanks Becky I wish you…
  • Where to start? It seems the BM results have caused a pause in proceedings as I would now need higher intensity chemo than previously planned for pre transplant - in my case this makes it all a bit complicated (I have 2 BM related conditions but neither are cancer so I've not experienced chemo at all so far). So I left…
  • Thank you... I really really appreciate it. I am pacing A LOT and counting down the hours! But it has really helped to just know that there are people out there who just get how this feels... As you say whatever happens it will be for the best at this point in time.... a friend gave me a card recently that says 'everything…
  • Thank you Steve. It's been a complicated journey to this point.... Nearly eight years of a transplant being a distant possible option as I have Bone Marrow Failure and a related rare blood disorder - having both has seemed to make my options far more complicated along the way, and we have now exhausted all avenues (or so…
  • Thank you Peter, I hadn't thought of that but I think I will give them a call ... Everyone is telling me to be positive but I've waited so long for this so to get this far and then have this happen but not be able to speak to anyone for the next few days is awful, for me and my family. We were all preparing for transplant.…
  • Congratulations Josie that's great news!
  • Thank you George.. A few days later and I'm back to 'Mrs To Do List' ! I think for a moment I was just taken by surprise by how I felt but I guess like you say, it's all 'normal' and I just need to go with it. It's a surreal process sometimes, but I'm excited to see what life will bring after - just keen to get on with it…
  • Hi Josie, just wanted to wish you all the best for next week, good luck x
  • Hi....Thank you ... ive now got a date to work to so have just had my hair cut into a short bob, stage 1! Thank you and best wishes for your journey x
  • Hi Josie, I came on here to ask pretty much the same question! My transplant will be a few weeks after yours but I'm finding I too am partly excited (which feels weird!) and partly scared, I do also feel strangely calm about it - I've been told I look serene! A friend bought me a 'list' book which I'm noting down…
  • (Sorry Becky for some reason only half my post above actually appeared still learning!)... Just to say hope you get all the info you need. It's not easy to know where to begin when there's so much going on but they really helped me so hope you get the same x
  • Hi Becky - I found them a lot more sympathetic and understanding at the hospitals centre... Sadly my experience at Citizens Advice was also not so great
  • Thank you both... I guess it's the trauma of potentially losing clumps that I'm worried about and trying to lessen if possible ... that and the thought that if it needs cutting once I'm actually in hospital it may well be my husband who has to do it - he would be lovely enough to do it but he's not a trained hairdresser!…
  • Thank you, it's great to hear from people who have been there. Unfortunately I work very close to people and can't work from home, but my employer so far has been great... I've stepped back from full time working close up and am doing admin a couple of days a week instead so not 'up close' to people anymore, as I was…
    in Hi! Comment by LolaB June 2015
  • Thank you both for taking the time to post, I really appreciate it. I've found it really useful so far to be able to read all the things I haven't even thought of, I was diagnosed (also a shock as I didn't feel ill at all!) with AA & PNH nearly 8 years ago so a transplant has always been something that could but probably…
    in Hi! Comment by LolaB May 2015
  • Hi Becky, I've just read your post and it's struck a real chord! I registered on here ages ago but have been too scared to post as it then seems a bit real! I am currently waiting for a transplant as I also have two rare disorders and am currently on reduced hours, so understand the financial predicaments and the related…