Cycling is my way of getting away from everything and just switching off. Plus it’s a great way to keep fit. Need to plan a few adventures/challenges for next year!
I really struggled to eat during my transplant due to the gastric system being affected by the chemotherapy. They had my Hickman line connected to a bag of whatever it was constantly to try and get something into me. They tried a tube up my nose but it lasted 10 minutes before I threw it up. Eating was the most difficult thing due to how everything tasted and having a lack of appetite.
I know Danae will be eager to get back to normality/uni afterwards but tell her to take her time and wait until she feels totally better. No point rushing to do anything and setting her self back x
How are you both ?
Just popping in to say hello and hope things are going ok for you at the moment.
I have been home for just over a week now and I am doing ok. I do get tired at times, I still have the nausea also but I think it’s getting slightly better.
Hope you’re doing okay too, @Fifimac? Good to hear the nausea is decreasing a little - are you managing to eat a little? Hope so. Oh that fatigue - I bet you’ve had some deep afternoon sleeps! But it’s good to give in to it initially - I imagine lots of healing and growing of healthy blood cells goes on in those snoozes. You’re not missing much of a summer, that’s for sure.
Hi @Fifimac I hope your symptoms subside, great to know that you are home, perhaps it’s slow and steady, listen to your body and be very kind to yourself, oh, and please keep posting.
Thanks for your message and thoughts. It is fab to hear from you and know that you are home and nausea is subsiding. As the others have said, best to listen to your body and rest, go with the flow. You are amazing- remember that each time you take a nap . You then wake up even more amazing
We are still at home. Went to hospital on Monday for bloods and dressing change. All was well so allowed home again for one more week and then decisions will need to be made…
The last we heard was that they are having difficulties getting hold of Danae’s potential donor. This has really upset and frustrated me (and Danae). But we can’t do anything about it. So, they are now talking about Danae coming back in for a week of holding chemotherapy. They will then decide if they forget the donor option and go with cord or me as a haplo. That will seriously change stats etc but will need to go with the best option available. If I think about it too much I cry so I am off out for a blast on my bike as sun is shining here today.
Take good care out there you lovely people and will keep you posted
Oh @SarahMum wonderful to hear from you and Danae as always.
Great for you and Danae to have another week home together, but I have to say that the emotional roller coaster never lets us get off, I see things very visually in my mind and always see it like the bus in Harry Potter.
As I expect you are realising a week is a long time, so keeping everything crossed for you both.
Perhaps go off on that bike and really clear that head a bit, I reckon it is the best therapy ever.
Enjoy your week and do lots of silly things together.
Love to you both xx
Glad to hear that Danae is home for another wee while at least. My partner is amazing and he does everything for me. I do wish though that my Mum was still here as nobody can make you feel better like your Mum. You & Danae sound like you are a great wee team and will definitely get each other through this.
I’m sorry to hear about the Donor , this journey is always feels like two steps forward then three back.
When I was waiting for a donor my consultant said I would need “ salvage chemotherapy “
I asked him to please not call it salvage, as it sounded like trying to save an old wreckage from the bottom of the sea. So he called it bridging instead.
I wonder if things do happen for a reason , I’m
sure something is in the pipeline for Danae. The medical team will definitely be weighing up all the options to reach the best outcome.
It’s like plodding through mud at times. I had two delays with the transplant before I finally got there and it was such an anxious & scary time. Try to keep your positive hats on , everyone is rooting for you both.
Glad that you can enjoy a bike ride , the fresh air will do you the power of good.
Sending you lots of love and good wishes. x x x
How is everyone? @Fifimac - hope all is well with being at home and you are feeling brighter as each day arrives…?
All okay here. Danae is in hospital doing her holding chemo. We hope she will be allowed home on Wednesday (despite being neutropenic - should I be worried about this?). I will try and do all I can to keep her safe and infection free but any advice is much appreciated.
Re: SC donor. Apparently, the donor is citing issues with his work so we shall see. Danae’s consultant has explained that they are also exploring another donor from a different country as well as looking at umbilical cords. We are also waiting on the residual test results from Guy’s hospital (sent off 5 weeks ago) Not going to lie, we are both feeling a little frustrated but hope that things will now start to move forward as we cannot afford to wait much longer.
Hope that everyone has enjoyed a fab BH weekend? Look forward to updates. Take good care and catch up soon
Hi @SarahMum and Danae, great to hear from you and for the update and I bet you are both feeling more than a little frustrated with all these things that are out of your control.
There is nothing I can say unfortunately it is par for the course and also for things changing on a daily, hourly basis.
I really hope that Danae does come home on Wednesday.
I think you know more than me how to keep Danae safe now and you have done a phenomenal job.
It sounds as if the hospital is pursing every avenue to find Danae a donor.
It sounds as if Danae is really being looked after so please do look after yourself as well as you do Danae.
You are both a fantastic team and really need to pat each other on the back.
As always I am thinking of you both loads.
Loads of hugs to you both and please do keep posting xxxxxxxxxxxx
It’s one tough road for you & Danae … I’m sure when she gets home on Wednesday that you’ll both be very sensible and not take any risks. It’s like a new way of doing , staying away from crowded spaces, anyone with coughs/sniffles etc.
It’s like all you do is isolate but it’s the end game you’re aiming for so no risk taking to jeopardise Transplant.
I feel like since my diagnosis last October , all I’ve done is isolate. FaceTime is great but there’s no substitute for face to face contact with family & friends.
My hope is that by the end of the year I should be able to meet people , go for some shopping , have friends & family in the house again
Good Luck to you & Danae , hopefully the Donor situation will be resolved as soon as it really is hard to remain positive at times but it’s the best frame of mind to be in !!
Look after yourself and each other, you’re definitely a strong wee unit and that shines through in your messages.
Fingers crossed for Wednesday lots of love & best wishes to you both. x x x
Hi @SarahMum
I was at home while neutropenic more than once and came to no harm!
I found waiting for donor news incredibly stressful, but it came together in the end. I also struggled (still do!) with plans being changed, but you just have to carry on! Stay positive xx
Thanks for your messages. @Fifimac - how are things going for you now you are home? I think of you often and wonder how you are doing?
Thanks @Erica for your words - I can see why you are so good at monitoring the forum discussions - your responses are always ‘just right’ and so positive.
@Suey Thanks also to you. It is always good to hear from people who have been through this experience. It provides reassurance that maybe we can get through this.
So, we are home after a long day of waiting around yesterday. Danae now has to take Midostaurin for 2 weeks and we go up 3 x times a week to the day unit - but we are home
We also received some positive news yesterday. The results from Danae’s residual test came back from Guy’s hospital. Negative! . A further 2 x potential donors have been identified (from cheek swabs) so they have been contacted and called in for bloods. We shall see what this brings…
Danae looks amazing I am still in awe of her. I have never met anyone so brave. Someone who faces all of this and rarely complains. Even yesterday, when I got really titchy waiting for pharmacy to send up the meds, she just remains so calm and said, ‘stop it Mum - there’s no point.’ So, I just settled down and considered myself told off by my daughter lol
So, we now enjoy our time together at home. She still has a fab appetite and has placed orders for: bacon butties, chicken and orzo pasta and spaghetti bolognese - so I better get busy!
Oh @SarahMum I am so, so glad that you are at home together.
I think I might move in after reading the food that will be on the menu. However I must warn you spaghetti bolognese and I are a messy combination.
Yes, unfortunately ‘waiting’ in all different situations is par for the course.
I loved it when I heard that you had been duly told off by Danae!!!
Great news about the residual test and potentially more positive news on the donor side.
Enjoy your time at home together, please keep posting Danae and you are both amazing!!! xxxxxx
Lovely to hear that Danae is home, I love the sound of Chicken & Orzo👍 Orzo is so versatile, one of my favourites. It’s great that Danae is enjoying her food as it will stand her in good stead prior to Transplant.
I’m so pleased to hear that she got a Negative result:hugs: waiting on that particular result is always a tense time. What a fantastic feeling for you both that’s it’s negative.
I received my results from my first bone marrow test since my Transplant and it’s negative also.
Early days , but it gives you a lift that’s for sure.
Hopefully as the donor cells continue to engraft they will keep everything at bay. Next test is Day +100 which will be October.
I hope the tests for the two potential donors comes back with a positive outcome and the ball can start rolling for Danae’s Transplant
You are both doing a fantastic job supporting each other , I think we all just go on Auto Pilot… people say to me , I don’t know how you are being so strong throughout all of this.
I don’t think I am strong , I don’t have any other option than to get on with things and put my faith in the experts ( although I do ask a lot of questions of my Consultant )
Well , it’s been uplifting reading your update and it’s great news that Danae is home for the next wee while.
The menus are certainly sounding very appetising, and I’m sure you’ll both enjoy them.
Is there any garlic bread involved ( yum yum )
Look after yourselves and keep us updated when you can.
How are you doing ? Not heard from you in a while.
I hope you are well and enjoying our late summer / early autumn sunshine
Well at the moment we have sunshine here in Bonny Scotland.
I received my marrow results , good news.
Negative !!
It’s early days I know but for the moment it’s certainly as good a result as I can hope to get😊
I ventured out a short walk yesterday afternoon, legs are a bit wobbly but I did it.
Going out again just now as it’s dry & sunny. Onwards & upwards is our motto isn’t it
Hi @Fifimac! Brilliant news about your bone marrow result! Fantastic! That is the news we all hope for after the gruelling transplant. Over the moon for you!
And well done with your walks yesterday and today. It’s surprisingly hard work, isn’t it? But it quickly gets easier, so don’t worry too much about how wobbly your legs feel at first. Glad the sun has been shining for your first expeditions. Really hope you enjoyed them. I can remember having a little cry at being outside in the landscape I love once again. It’s such a happy milestone.
Sorry I haven’t been in touch until now - am in…New York! It’s our son’s dream holiday, so here we are. I’ve just been e-scooting around Central Park. Not something I ever thought I’d hear myself saying!!! In fact, I never imagined going to NY - I find our nearest village a bit busy (!) But may as well make the most of opportunities and new experiences now that I’m very definitely alive and kicking. It won’t be long before you can do the same, @Fifimac. Maybe this time next year you’ll be on a special holiday? Where would you choose? I fancied a beach holiday, so we went to Tenerife for a few weeks last year (as not too hot.)
Once again, I’m just so pleased for you that you are well, Fiona. You’ve got through so much, and those are the magical words needed. Huge hug to you, and lots of love X X
Wow, @Fifimac great news about your bone marrow results.
I expect your short walk in the fresh air did you more good than anything mentally and physically, wobbly legs and all.
Yep, onward and upward sounds good to me, a day at a time and slow and steady wins the race. Be kind to yourself as well, oh, and keep posting
Gosh, @Fullofbeans you are gadding about if I may say so and in New York.
E-scooting around Central Park, I cannot believe it.
Tenerife also sound rather appealing to me too.
Yep, make the most of opportunities and new experiences.
Look after and pace yourself, I find holidays can be exhausting too.
So nice to hear from you and it gave me the biggest smile reading of your escapades in The Big Apple.
What a fantastic holiday you’re having , I hope your son is enjoying every minute , it sure is a dream destination. I’ve been to Florida a few times but never NY.
I love the sound of the e-scooters , definitely fitting in with the locals
I’m feeling a bit better as time goes on , a holiday abroad would be fantastic, but as you say that will be a bit down the line yet but within touching distance eventually
Well I hope you all enjoy the rest of your special family holiday. So nice to hear from you and glad you’re doing great.
Happy days for sure.
. You then wake up even more amazing 
it really is hard to remain positive at times but it’s the best frame of mind to be in !!
x x x
. A further 2 x potential donors have been identified (from cheek swabs) so they have been contacted and called in for bloods. We shall see what this brings…
