Hi Nichola
As my OH has his appointments arranged fairly short notice its difficult to plan ahead. York was arranged 2 days before we went.
Hope all is ok with you. X
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Perhaps another last minute escape then. Fingers crossed X
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Hi all
The OH is in hospital at the minute but fingers crossed he will come home tomorrow as long as the nimbers look good.
He spoke to Oxford this afternoon about the Stem cell transplant. (Treatment in MK STC in Oxford)
They are still looking to see if they can get a better match for him as there is an additional virus he has had they need to look for in the doner. His younger sister is going to be tested too.
I think the penny dropped when the doctor told him they were still looking as he is a priority because of his condition. A bit of a light bulb moment for us both i think.
I reflected on the title of this threadā¦anyone else still terrified?
Debbie x
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Hi @Debbie36 I think it is so natural to still feel terrified and so many other scary emotions.
You are both into unknow territory and treatment.
It is interesting how we pick up on odd words from a medical person, I know I certainly do, those lightbulbs flash on so quickly.
I hope your OH does get home tomorrow, but I have also found that everything goes very slowly at weekends.
We are here for you and so is the Blood Cancer UK support line.
Be kind and spoil yourselves
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Hi @Debbie36 I have been thinking about you and wondered how things were going?
Look after yourselves
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Hi Erica
Its been a busy time. We were at Oxford yesterday for bone marrow biopsy and discussion with the trial nurses and doctor. They were able to let us know that the doner has been selected and has confirmed avaiabikity for mid June. No dates yet but we had a call today for 2 more appointments at Oxford next week. 1 is full day of work ups and 2nd for clinic to discuss furtger with consultant and sign consent forms. It seems like we are getting ready for the Stem cell transplant!!
The mood has changed at home and my OH is keen to have some quality time before he goes in. He will be missing his 64th birthday and my daughters wedding. We always knew ut could be on the cards.
Hope everyone else us doing ok
Debbie x
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It certainly does sound like a busy time @Debbie36 . I remember the chaos of preparing for a stem cell transplant and not knowing when to make plans and when not. I hope youāre still able to have some sort of celebration of your special occasions at some point even if they are late.
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Wow - it sounds like itās all go. How is everybody feeling about it all? I can imagine you are all disappointed about your daughters wedding. Iām hoping - that with technology - you will be able to set up some kind of video link.
Yes - get that quality time in while you can.
Sending lots of special wishes x
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We knew it could have been on the cards. Planning early family birthday celebrations with the grandchildren bank holiday weekend.
My daughter, my OH didnt have any children of his own, is arranging to put her dress on when she comes over so he can see her. We will be using the magic of the video call on the day.
Call today from registrar who wanted to revisit some of the difficult conversation. OH was being reminded to get his/our finances in order before he goes in as there are no guarantees.
Its a bit of a rollercoaster.
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That is one huge rollercoaster. Lots of lovely āupsā in there at the moment. How lovely that he gets to see her in the dress - it will be magical!
Some of those conversations must be really difficult. As much as we moan about technology, itās moments like these where we couldnāt do without it!
When is the wedding? Keep us updated on how you are all doing x
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The wedding is 9th July at Pendenis Castle in Cornwall. It was supposed to happen in 2020 but covid had other ideas. Her brother is giving her away as her dad passed away in December 2020. He had been living with Alzheimerās for a number of years and caught covid. He was on a video call when she tried on her dress so as you say it has been a true blessing.
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Gosh @Debbie36 it is all systems go then and it sounds a hectic, tiring and emotional time for you all.
No, there is never the ideal time, but it seems that you have all thought it all through to make everything the best you can in the circumstances.
Pendennis Castle is a stunning setting, my sister worked there for many years. I bet your daughter will look lovely and how special to have her brother give her away.
Yes, what would we do without video calling.
So glad a brilliant donor has been found.
Make sure you and your husband look after yourselves and spoil yourselves
Wish your husband a very happy birthday on the day, please.
Be kind to yourselves and please keep posting
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We are so gratefull for the kindness of a stranger who is selflessly giving of himself to help us. X
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Things are picking up a pace. We have a provisional admission date of 16th June and told not to expect him home until end of July. Prognosis and risks have been revisited several times and this emphasis hasnt been lost on me. Its going to be an intense few months ahead. I hope nobody minds me using this forum as my safe space. Its easier not to have to explain to those who already understand. X
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Hi @Debbie36 you make sure that you use our forum, that is what we are all here for, you can be completely honest about what is going on for you.
Things are really picking up a pace for you, arenāt they, I expect they suddenly feel rather real and very scary for you both.
We are your safe space and you bet we will we will really understand.
Look after yourselves and be kind to yourselves and please keep posting xxxx
I think itās more important than ever that you use the forum X
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Please do Debbie this is a safe place where you will find listening ears and empathy
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Just thought i would touch baseā¦this time next week we will be packing ready for my OH admission for his stem cell transplant.
He has been out shopping today for bits ready and says heās anxious but knows he is in good hands.
He has a video call booked for next Tuesday with the psychologist. As if we need even more reminding just how uncertain all this is. We know the numbers are agaist us but what other choice do we have?
I have no clue how im feeling. I think i need to invest in some new positive pants to wear alongside the big girl pants Iāve needed to pull up these last 6 months.
How is everyone else doing? X
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Morning @Debbie36. Wow, itās really close now isnāt it and I bet the reality of it all is hitting home. Off course put on you big girls pants, but remember, on here you donāt need them. You can say it exactly as it is. We are all here for you X
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Dear @Debbie36, just wanted to say that we are all here for you both so do reach out if you need a chat: How to contact Blood Cancer UK | Blood Cancer UK. Take care Gemma
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