Hi @Fifimac
Hope those day 100 results bring good news.
I’m almost 19 months post transplant now and, thankfully, been told I won’t need further bmb’s, unless something changes!
It’s certainly a journey, I’ve always been very laid back so these bouts of anxiety have come as a surprise, they are getting less, and further apart, as I’ve accepted check ups will be a feature for the rest of my life!
Hope you have a lovely weekend and stay well x
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Hi
Sounds like you’re doing great 
I am under the care of QEUH , Glasgow aswell.
My transplant was only July , I worry more now than I did pre-transplant and I hate to feel this way as like yourself it’s just not me , I was always pretty laid back and took everything in my stride !
I’ve given myself a wee talking to today , lol.
I am going to try and be more positive , why am I thinking the worst all the time. It’s not fair on friends and family if they see me getting anxious.
I speak to the Consultants and they’ve told me I’m doing extremely well and my bloods etc are all good. Yet I always pick up on any “negatives” ( as I see them ) and that’s what I ponder over.
Instead of focusing on the positives.
I know I’m not alone and I’m so lucky with my local medical team and the team in Glasgow.
They’re all amazing and so easy to talk to. Thank you for your message and I hope you have a lovely weekend … I’m in Fife and the weather forecast is pretty yukky for the next few days.
I love Autumn 
though as the colours are beautiful.
Best wishes
Fiona x x
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Oh I’m so glad you’re fit enough to do all that walking and gardening @Suey - I enjoy both too, and have a similarly weed-friendly husband gardener, ha ha.
Funnily, I am 2-3 hours from my transplant hospital too - it’s a lot of work, eh? I dont think mine are discharging me until 5 years, although I will only see them twice more now, next time in a year. I speak to my local consultant more often, but mostly by phone too.
Perhaps it’s normal for our mental health to have a wobble at this point, now we’re in a safer zone and it can afford to indulge in a wobble, rather than being strong? That makes a kind of sense.
Wow, amazing news about your dad - congratulations to him! And his sister. My dad’s in his 80s, so I’m hoping I’ll at least make that, despite the Acute myeloid leukaemia (AML) blip. Multiple nonagenarians in your family is a very good sign! Enjoy the celebrations! X
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Perhaps we’re hypervigilant for any little sign of illness, @Fifimac, after having been diagnosed with such an acute cancer? It would make sense for people in our positions to search for any small detail that hints at something awful, because we’ve recently found the worst can indeed happen to us and we’re not immortal after all, and we’re aware we may have ocerlooked some symptoms before, and subconsciously don’t want to make that mistake again? It would be very understandable if we did that.
I’ve been to Fife many times, @Fifimac. After uni, my sister lived in Kirkcaldy for a number of years, and I’d visit. We always said that Kirkcaldy is very like Penzance - the Scottish version. We lived in villages just outsde Pz as kids, and I’m not far from Pz now. The weather’s not brilliant here either! We have very wet, windy winters (and summers, lol.) 
Hope you’re feeling ok today, and have a lovely weekend. X x
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Hi fellow travellers,
I’m day +42 post transplant now, and apparently doing well. We had our children and grandchildren come for a visit yesterday, and now today we hear that both our daughter in law and one of the children have COVID! Aaaaaaargh. Obviously, I’m a tad nervous, but now have to roll with what may lie ahead. Anyone else been in this position? Or had COVID shortly after transplant??
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Oh @Ledgell, this is a bit of a nailbiter! I’m really sorry.
I didn’t get covid until 2 years post-transplant so don’t have experience of how it goes so soon after, but one of my consultants did say that amongst his patient list, people were coping with it well shortly after transplant. However, I would keep testing daily, and contact your transplant team as soon as it turns positive - if it does - just so that they can get the ball rolling for meds, should you need them.
I hope you had a lovely time with your family, btw.
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Oh @Ledgell how absolutely lovely to see your family yesterday but I just can’t imagine how you felt when you heard that bombshell.
I bet you are more than a tad nervous but it’s the luck of the draw and @Fullofbeans has given you great advice.
Please do keep us posted and be ever so kind to yourselves
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Hi @Ledgell, I do hope you’re doing okay. It’s very understandable to feel nervous, and I’m sure others will continue to share their experiences. I do hope you won’t need this, but I wanted to highlight our website information around what to do should one test positive for covid and how to go about getting an assessment for the treatments - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK.
Please do give us a call if you want to talk it through, and I hope you stay well.
Best wishes,
Tanya.
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Hi @Ledgell
So sorry to hear that your daughter in law and grandchild have tested positive for Covid !
Fingers crossed that you won’t catch it 
I hope you are feeling ok otherwise, it’s hard not to want to see family face to face again , especially grandkids. We’ve had to isolate for so long.
You take care , I hope you manage to escape this and I hope your family get better soon.
Best wishes x x
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Morning All
Sorry to hear about the Covid making an appearance in your family @Ledgell . How are you doing today? I hope all is well?
I was worried about Danae on Saturday - she was very quiet and unreceptive to any suggestions I made to do things. She spent a great deal of time on her phone. Later in the day she commented that all of her Uni friends were going out to celebrate Halloween and I think she felt really low that she is not part of it. At 20 years old it must be really hard to see all the photos of your friends out celebrating.
Yesterday was a more positive day. We did some pumpkin carving 
. Danae is also going to dress up as ‘11’ from Stranger Things for Halloween (she has the hair sorted and one of the HCAs acquired her a hospital gown as she thought Danae will look brilliant as 11 
) We won’t be going anywhere but it will be fun to get some photos.
Here are our pumpkins…
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‘Smashin’ Pumpkins’! And Danae would make a brilliant 11!
Ah, @SarahMum, the thought of Danae being down about missing out is so upsetting - it must be awful for you both. You’re brilliant at thinking of things to cheer her up though - pumpkin carving together must have been lovely, and dressing up will be too. You’re doing the most a mum could do. And hopefully it won’t be long before Danae can be more fully involved. Maybe she’ll be having chocolate Easter cocktails with her cocktail group? Or even a little Christmas get together with friends?
What is Danae’s favourite cocktail? Although I don’t really drink now, I used to LOVE a margarita. That sour lime and tequila bite with the salt on the rim of the glass - delicious! I used to work in Singapore which was cocktail heaven, and home of the Singapore Sling at the Raffles Hotel - which is an experience I can highly recommend for cocktail lovers like Danae. Could she stomach a cheering cocktail yet? (Although I don’t specifically mean at 9 a.m on a Monday morning - but hey, if that helps in these circumstances, go for it! 
)
Well done, Sarah for all that you’re doing for your beautiful daughter. I hope you don’t mind me saying: You’re a brilliant mum. X X X
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Oh @SarahMum and Danae I absolutely love your pumpkins, very creative, I am very impressed and Danae you will make a brilliant ‘11’.
Danae it must be so hard for you when you see and hear all your friends having a social lives, but personally I think the important thing is to talk about how you are feeling.
Personally, I think it must also be difficult for your friends as well, they have also never been in this position before, should they tell you the social things they are doing or not.
Life is very different now there is social media in the mix too.
Hang in there and perhaps there are so many non alcoholic cocktails you might start off with.
I don’t drink alcoholic drinks either.
Keep the photos coming, you sure are the brilliant Dynamic Duo team.
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Your pumpkins are amazing @SarahMum! I like the tiny face on the reverse side of one of them - so clever! I can understand why Danae is finding it upsetting to hear what her friends are up to. It is so hard for a young lady like her. I am much much older but even I find it distressing when I receive postcards from people full of all the exciting places they have been and what they are looking forward to doing for the rest of the holiday! One particular lady who isn’t even a close friend sends me several postcards every year full of all her activities without any mention of how I am or saying that she’s thinking of me. Maybe I am being selfish but I dread the postcard arriving! Do others feel the same or is just me?! Warm wishes, Willow x
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This is so tough for your lovely Danae, at a time when she should be doing what all young people her age SHOULD be doing……
Although your resourcefulness is utterly amazing, making the most of what you CAN do. Hope she has a wonderful few days.
I’m testing negative for COVID today - as is my husband. But it’s still early days. I really need to get to my Barts appointment on Wednesday! Still hoping we have escaped.
Sending love and best wishes to everyone on this journey today x
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Fingers and toes crossed for you @Ledgell, please do let us know what happens on Wednesday, look after yourselves
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Hope you’re still covid-free @Ledgell and get to your Bart’s appt tomorrow. And best of luck with that. X
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Hi everyone
Hope all is well and you get to your appointment today @Ledgell
All is good here. We had a nice Halloween 
but only 2 groups of children at the door for trick or treat. Danae did dress up as ‘11’ and we had a Halloween picky tea (thanks M&S!)
Hope everyone else is all doing well out there…?
The DD xx
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You’re brilliant as 11, Danae! And those biccies look nice.
Good to hear you managed to have a nice evening @SarahMum. We’re so far flung we don’t get any kids Trick or Treating here - just werewolves.
All good with me thanks. Just battening down the hatches on an already windy day. Think we’re in for a battering! The wind is already howling here. (Danae might need to tie the back of her surgical gown 
.)
Keep safe everyone. X
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Oh, spooky Danae.
I absolutely love the selection of Biccies, you cannot beat M&S (although other retailers are available)
I reckon they would go down rather well with a hot chocolate, I nearly said I might dunk them and I probably would have, and then end up a chocolate mess.
I have got a pre cancerous growth above my lip and I went to the GP after having a hot chocolate with friends for a minor op. The GP looked at the growth through his spy glass and then said there is a dark mark below it and then proceeded to wash it off. I didn’t dare say anything!!
@Fullofbeans I got absolutely soaked on my walk this morning and when I got near our flat our estate gardeners were sheltering under the porch of another block and they laughed at me dripping by.
Yes, batten down the hatches everyone xx
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Happy wild wet windy Thursday to all you lovely peeps. I’m huddled under my heated throw……!
Had a really positive trip to Barts yesterday. Thankfully I’m still COVID free, so hoping we have now escaped this time (it’s now six days since we were exposed to it). Sadly my husband is unwell with a nasty tooth abscess, so my very faithful friend stepped in at last minute to be my Barts Buddy for the day.
My blood count has recovered amazingly well - just the Haemoglobin is a tad below normal range, and everything else normal (for the first time!). Also great results from my first Chimerism- 86%. So all in all, consultant is a happy bunny. And so am I. Apparently they don’t need to see me for another three weeks!
Thankful for all these encouragements.
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