Thank you Rob. As you can imagine I follow your posts with great interest. I am very glad for you that you are well enough to enjoy life, albeit within limitations. It's amazing how we adapt to new situations. Update for you all. It is actually happening for me. All tests done. Hickman line in ready. Admitted hopefully Friday, treatment starting Saturday. 12 days intensive chemo then the 2nd transplant. Am busy packing! I feel really well at the moment, (which is in itself frustrating!) so it means I am starting out from a better health position than last time....but I am certainly not looking forward to it. I know when it all kicks off, I will just get on with it as best I can (no other choice really!!) I feel very fortunate to have this opportunity....and hopefully will be in a position to give you some news soon. I hope to continue to follow your progress as and when I can and I'll be thinking of you all. All the best Jane
Hi Jane, just want to wish you the very best of luck for your 2nd transplant journey, Like you say you already know things will be tough but you absolutely sound like a real strong lady and I’m sure you will give it your best shot and come out the other end fighting! Sending all our love xx
Hi Jane , if you get chance or the inclination to read this I am keeping everything crossed for a good outcome for you ,,,hope your doing well lots of love Christine
Thankyou both. I am gradually emerging....I am out of the hospital room, being looked after by Derek in one of the flats on Addenbrookes site. I am very weak of course....not quite stable enough to go home, especially as I need to come back 3 times a week (4-hour round trip) But ......Yes, still fighting. Feeling very blessed to have this 2nd opportunity. Very glad the first bit is over, I must say. I am very tired. I have thought of you often and look forward to hearing your news on another occasion. Much love and thanks x
It's good to hear from you and glad that things are stable at the moment. I've got my fingers crossed that things keep progressing smoothly and that you can go home before too long.
Stay well and please keep us updated when you feel up to it.
Hi Jane, Thinking of you lots and wishing you all the very best for a steady recovery. Hopefully it won’t be too long before you can making your way home. Keep going and we are keeping everything crossed for you. Sending lots of love Mandy
Whoa what great news out the other side hope this continues Jane I ve been thinking about you every day it’s so good to hear your recovering well much love and you’ll get home we have long trips to our transplant centre too but ours can be broken up at times with our local hospital but it does take more time and energy doesn’t it ....hope your home soon Christine x
Came home a week ago Friday. Slept Saturday. Back in hospital Sunday (temperature). Back we went. Home again yesterday. Feeling very weak and "jelly-legged" but otherwise quite good. Thankyou everybody. Jane
Keep going Jane, we all know its a long road to recovery but you'll get there in the end. It feels better being able to recover at home and I hope you can make the most of the great weather we're having at the moment, but be wary of the sun!
Managed to stay home a week this time. And still here. First few days were a bit rough, but the last 3 have been good. Eaten better - even put on 0.5kg. ! I can now pretty much shuffle around the house unaided, but can't do stairs safely alone. Haven't ventured out yet except on my wheels. I have developed what seems to be a lump of scar tissue where the Hickman line came out. It is tender if touched. Anyone any experience of this? My consultant says they will check it again Friday and maybe scan it to make sure there's no fluid there. I'd love to hear update on all of you. Hope all is progressing in the right direction. Many many thanks for your support. It is much appreciated x
I'm Rachel a community champion on the forum and i was diagnosed with AML in 2015. I have had two transplants, unlike yourself it wasn't a relapse which prompted a second transplant but i have had two. Firstly, i'm very sorry to hear that you have to undergo another transplant, i understand how worrying take is. Secondly, i'd like to reassure you that having a second transplant can be successful. The second transplant I had was from a different donor and i underwent a more harsh chemo prep regime. I had my second transplant in Feb 2016 and so far all has gone well.
Stay positive, i can confirm having a second transplant can be successful. I will be thinking of you.
Hi Jane it’s lovely to hear your home and getting there so to speak I am so so pleased for you . Bob is doing well decisions re second DLI ongoing as they are unsure if the GVHD in the mouth is evidence enough ....always something isn’t there . I remember Bob had an issue with he’s Hickman line removal but he’d had he’s in place for some time ballooned and needed stitches but settled well enough hope yours does too much love Christine
Hello everyone. I realise it is a long time since I talked here. I have been up and down, I suppose. Generally a very positive person, I would say, with a strong Christian faith, I have found myself struggling lately. I am beginning to get out and about a bit more, but finding it hard when people assume from this that I am "better". That I can now "put this behind me" and "move on". "Back to normal" I can barely remember what "normal" was like 4 years ago, but I know that it was not like now. I pace myself, I am pleased with what I can do now, and I progress in many ways from day to day. Is it usual to feel "down" when so much is going well? Have others felt this way? I try to take one day at a time....but I still feel it is an uphill battle every morning.
I completely understand your remark about people assuming you are 'better' etc. I found the post transplant period where you look well and are beginning to pick up the reins of your life the most difficult and like yourself i had periods which were difficult.
I firmly believe you are entitled to 'mourn' the life you had, as you come to terms with the life you now have and start to rebuild and create the life you want. I am not the same person i was prior to diagnosis etc, it's been a tough road to put myself back together and like yourself even when things were going well i struggled with feeling low at times.
Don't be hard on yourself, you have been to **** and you are hopefully on your way back, these things can't be rushed so allow yourself the odd down moment. However i would recommend if you feel the down moments are becoming more than the ups and are 'taking over' to seek support / counselling.
I got myself through those tough days by having things to look forward to such as planning weekends away. I also got a puppy and she was just a joy. She forced me out of bed every morning, i had to get out the house, she was happy to see me no matter how rough i felt or looked.
Thankyou so much. Reading your comment, I realise there is also still a part of me that is thinking in terms of one day I'll be back to as I was. But I know I won't . I will try and think more in terms of what a good 'post transplant' life can be like and maybe I won't keep looking back and comparing. Today has actually been a better day. Thankyou again
You probably know from the stage you got to before your setback that it does take a long time to start to feel normal again. You were two and a half years post transplant before the AML came back so were probably feeling quite good by that time, but you'll also know what it took to get there.
I guess its possible that with all this additional treatment it may be harder to get back to that feeling again, but keep pushing and have faith that you will get there. You know what that feeling is like and you will get there again. Getting out and about is a step along the way and I'm sure you are telling those that think you're better that you still have a long way to go as you've effectively had to start again.
I think part of what we do as patients is educate those around us about what we have been through and help them appreciate how tough it is. Those closest to us often see it first hand but those we see less regularly will understand when we talk to them about it, but more than anything they are probably pleased to see you making progress.
As your reply to Rachel says keep looking forward to that day when you can feel you have reached normal, but don't be too hesitant to look back to that point you got to before your setback when you had that feeling before, and keep in your mind that it will come again some day.
Hi Jane, I'm really glad to read your post but sorry to hear that you are struggling. It is still early days in terms of your recovery and you have been through an enormous ordeal both physically and mentally. It sounds like you are doing all the right things - just try and give it time. I have just passed the year mark now and I feel like I am almost back to my old self. It has taken a long time and a lot of hard work to get there though. Has your medical team offered you any counselling? I found this useful when I was going through chemotherapy but haven't needed any post-transplant. Hang in there. We look forward to your next update. All the best, Rob.
Thankyou so much. I have read and re-read these comments when I have had difficult days and found them to lift me. I heard on Friday that my bone marrow test was good and I am now officially in remission. This is really good news of course, and I am very relieved. The ongoing recovery is still in progress however, and at present I have an unrelenting cough! Never seems to stop, does it? BUT I am now 4 months post transplant and improving....and one day, like Rob, I'll be able to say I've passed the year mark. It's good to think of that.
Thanks for the update, it's great news that things are still on track and above all that you are in remission following your setback. I think it's getting to that time of year for coughs and have just started with a sore throat myself. I hope yours goes soon and you can continue your recovery unhindered. Take care.
Hi Jane , sorry it’s been a while I ve just caught up with your story I am pleased and delighted to hear you’ve achieved remission but sorry to hear the toll all this is having upon you . It really is a marathon and then some keep your spirts up your doing so well my son Bob continues
Hi Jane, that is fantastic news. I am really pleased that things are looking up for you. I'm sure the cough will clear eventually (mine took 4 months :-() but I know this is really draining physically and mentally. Hang in there. We look forward to your next post.
Thank you. It is good to hear from you. I have for one reason or another not been on the forum for a considerable time. I am certainly encouraged to hear that you are so far past the 2nd transplant. How have you been keeping? I seem to get everything that’s going....but although it is frustrating not feeling safe to make plans ahead, I am able to enjoy my new life. Is it getting easier for you? I am 20 months post-transplant.
Hi Jane
so lovely to see you have posted after quite sometime. I still view the forum from time to time. It’s good to hear your able to enjoy your new life and hopefully you maybe able to plan a little in advance at some point too.
However I know it must be more worrying for you all at present with Corvid-19 around so you take care of yourself.
Mandy
Hi Jane. I've done a 2nd transplant for AML and I'm still here. Diagnosed in 2012. Transplant from an unrelated donor. Perfect recovery, or so I thought, until I relapsed after 4.5 years. My specialist suggested I go for a 2nd transplant from the same donor as the first one had worked so well. This time they gave me the donors immune system as well so I have had more GVHD to cope with. 2nd transplant was April 2017 so I have just hit the 3 year in remission mark. If they say go with a different donor they are probably right as you have to trust your specialist and there is no strong statistical evidence one way or another. Good luck. One day at a time. I hope this is of comfort to you. At the time of my treatment I really wanted to find someone who had a similar experience to me. Everyone is self isolating now so you won't be missing much. Take care. Colin
Thankyou Colin. Like you, I really wanted to find someone who has had a similar experience to me. Very much so. There was one gentleman on this forum (Rob) who had a 2nd transplant, but I don’t know how he is doing. Well done on reaching your 3 year mark. I will be 2 years next month. Are you keeping well? Have you anyone that you are in touch with who is “ahead” of you? I find it can feel quite lonely if not. I am feeling well.....just some post-transplant effects which I hope prove to be fixable after this lockdown. I am missing my walks, so not feeling as fit as I was, but happy that I can potter in the garden. Thanks for posting . Have you also got on-going issues, or is it as good as the first time round?
Comments
All the best
Jane
Like you say you already know things will be tough but you absolutely sound like a real strong lady and I’m sure you will give it your best shot and come out the other end fighting!
Sending all our love xx
I am very weak of course....not quite stable enough to go home, especially as I need to come back 3 times a week (4-hour round trip)
But ......Yes, still fighting. Feeling very blessed to have this 2nd opportunity. Very glad the first bit is over, I must say.
I am very tired. I have thought of you often and look forward to hearing your news on another occasion.
Much love and thanks x
It's good to hear from you and glad that things are stable at the moment. I've got my fingers crossed that things keep progressing smoothly and that you can go home before too long.
Stay well and please keep us updated when you feel up to it.
Very best wishes,
Steve
Thinking of you lots and wishing you all the very best for a steady recovery. Hopefully it won’t be too long before you can making your way home. Keep going and we are keeping everything crossed for you. Sending lots of love
Mandy
Jane
Keep us posted as you recover.
All the best,
Steve
I can now pretty much shuffle around the house unaided, but can't do stairs safely alone. Haven't ventured out yet except on my wheels.
I have developed what seems to be a lump of scar tissue where the Hickman line came out. It is tender if touched. Anyone any experience of this? My consultant says they will check it again Friday and maybe scan it to make sure there's no fluid there.
I'd love to hear update on all of you. Hope all is progressing in the right direction.
Many many thanks for your support. It is much appreciated x
I'm Rachel a community champion on the forum and i was diagnosed with AML in 2015. I have had two transplants, unlike yourself it wasn't a relapse which prompted a second transplant but i have had two. Firstly, i'm very sorry to hear that you have to undergo another transplant, i understand how worrying take is. Secondly, i'd like to reassure you that having a second transplant can be successful. The second transplant I had was from a different donor and i underwent a more harsh chemo prep regime. I had my second transplant in Feb 2016 and so far all has gone well.
Stay positive, i can confirm having a second transplant can be successful. I will be thinking of you.
Best Wishes
Rachel
I can barely remember what "normal" was like 4 years ago, but I know that it was not like now. I pace myself, I am pleased with what I can do now, and I progress in many ways from day to day. Is it usual to feel "down" when so much is going well? Have others felt this way? I try to take one day at a time....but I still feel it is an uphill battle every morning.
I'm sorry to hear that you are struggling lately.
I completely understand your remark about people assuming you are 'better' etc. I found the post transplant period where you look well and are beginning to pick up the reins of your life the most difficult and like yourself i had periods which were difficult.
I firmly believe you are entitled to 'mourn' the life you had, as you come to terms with the life you now have and start to rebuild and create the life you want. I am not the same person i was prior to diagnosis etc, it's been a tough road to put myself back together and like yourself even when things were going well i struggled with feeling low at times.
Don't be hard on yourself, you have been to **** and you are hopefully on your way back, these things can't be rushed so allow yourself the odd down moment. However i would recommend if you feel the down moments are becoming more than the ups and are 'taking over' to seek support / counselling.
I got myself through those tough days by having things to look forward to such as planning weekends away. I also got a puppy and she was just a joy. She forced me out of bed every morning, i had to get out the house, she was happy to see me no matter how rough i felt or looked.
I hope the above helps.
Rachel
Today has actually been a better day.
Thankyou again
You probably know from the stage you got to before your setback that it does take a long time to start to feel normal again. You were two and a half years post transplant before the AML came back so were probably feeling quite good by that time, but you'll also know what it took to get there.
I guess its possible that with all this additional treatment it may be harder to get back to that feeling again, but keep pushing and have faith that you will get there. You know what that feeling is like and you will get there again. Getting out and about is a step along the way and I'm sure you are telling those that think you're better that you still have a long way to go as you've effectively had to start again.
I think part of what we do as patients is educate those around us about what we have been through and help them appreciate how tough it is. Those closest to us often see it first hand but those we see less regularly will understand when we talk to them about it, but more than anything they are probably pleased to see you making progress.
As your reply to Rachel says keep looking forward to that day when you can feel you have reached normal, but don't be too hesitant to look back to that point you got to before your setback when you had that feeling before, and keep in your mind that it will come again some day.
Take care,
Steve
Thanks for the update, it's great news that things are still on track and above all that you are in remission following your setback. I think it's getting to that time of year for coughs and have just started with a sore throat myself. I hope yours goes soon and you can continue your recovery unhindered. Take care.
All the best,
Steve
Regards,
Rob.
Hi Jane. I nearly 3 years post a 2nd transplant for AML. Hope you are still progressing well. Colin
Thank you. It is good to hear from you. I have for one reason or another not been on the forum for a considerable time. I am certainly encouraged to hear that you are so far past the 2nd transplant. How have you been keeping? I seem to get everything that’s going....but although it is frustrating not feeling safe to make plans ahead, I am able to enjoy my new life. Is it getting easier for you? I am 20 months post-transplant.
Hi Jane
so lovely to see you have posted after quite sometime. I still view the forum from time to time. It’s good to hear your able to enjoy your new life and hopefully you maybe able to plan a little in advance at some point too.
However I know it must be more worrying for you all at present with Corvid-19 around so you take care of yourself.
Mandy
Thank you Mandy. Feeling quite positive at present and definitely enjoying life a day at a time 😊How are you dong?
Hi Jane. I've done a 2nd transplant for AML and I'm still here. Diagnosed in 2012. Transplant from an unrelated donor. Perfect recovery, or so I thought, until I relapsed after 4.5 years. My specialist suggested I go for a 2nd transplant from the same donor as the first one had worked so well. This time they gave me the donors immune system as well so I have had more GVHD to cope with. 2nd transplant was April 2017 so I have just hit the 3 year in remission mark. If they say go with a different donor they are probably right as you have to trust your specialist and there is no strong statistical evidence one way or another. Good luck. One day at a time. I hope this is of comfort to you. At the time of my treatment I really wanted to find someone who had a similar experience to me. Everyone is self isolating now so you won't be missing much. Take care. Colin
Thankyou Colin. Like you, I really wanted to find someone who has had a similar experience to me. Very much so. There was one gentleman on this forum (Rob) who had a 2nd transplant, but I don’t know how he is doing. Well done on reaching your 3 year mark. I will be 2 years next month. Are you keeping well? Have you anyone that you are in touch with who is “ahead” of you? I find it can feel quite lonely if not. I am feeling well.....just some post-transplant effects which I hope prove to be fixable after this lockdown. I am missing my walks, so not feeling as fit as I was, but happy that I can potter in the garden. Thanks for posting . Have you also got on-going issues, or is it as good as the first time round?