[MariParticipant]

Well here we go again. Stephen went to Kings today for his 'Consent' appointment and the dates are all in the diary. He will have his cyclophosphomide induction on 6th July and is hoping to have it locally rather than travel up to Kings. Apparently the transplant co ordinator was surprised that our local hospital was happy to do this as many are not. He has dates for harvest in mid July, they have booked in three days to be sure of getting enough, and our fridge is full of GCSF injections, he is having a double dose of them, again to give the best chance of a good harvest. He has a date to go in for SCT in mid august, but as we all know, this could change at any time. I really hope he can go in then, as a teacher, it means it will be in the Summer holiday and I will be able to visit him during the day time.
It feels so weird to be back here again and so unexpected. I think we both feel a lot more nervous than last time but he is in much better shape than he was before his last transplant and hopefully he will not have the allergic reaction he had last time either. It's familiar territory but it feels like another huge step into the unknown, yet Steve is so calm and determined that he inspires me to stay strong with him.

Mari x

[DaiCroParticipant]

Hi Mari,

I can only wish you and Stephen the best possible results from his harvest and a smooth run up to the SCT itself The double GCSF injections sounds good… has the chance of Plerixafor been mentioned?

Your local hospital sounds helpful… I imagine they would like the experience… perhaps they have ambitions towards expanding their Haematology treatments… either way it is helpful and handy for the both of you,

Please pass on my best wishes to Stephen… and more than a few for yourself.

Dai..

[KeithH17Participant]

Hello Mari,

I also give best wishes to you both and hope all goes plain sailing for the 2nd SCT.
I felt more prepared 2nd time around due to my prior experience but due to an e-coli infection the ordeal didn't feel any easier and I only hope you get more than the paltry 8 months remission I got from it.
When I had my harvest they managed to get enough cells for 2 transplants so I didn't need to go back in for preparation which made things a little easier due to the fact that the Hospital is 43 miles from where I live.
I got 2yrs 4 mths from my first SCT which I thought was pretty good (zero PP's and no drugs) but the second was never quite as good unfortunately but I have heard of some patients getting even longer remissions the 2nd time and I do hope Steve is one of the luckier ones.

Best of health to you both.

Keith.

[PerkymiteParticipant]

Best of luck to you both, I am sure everything will be ok. Now is the time to Vasbyte 🙂

Kindest regards

David

[MariParticipant]

Dear Dai, Keith and David,

I wrote that late last night when I was feeling more than a little wobbly and I confess the feeling is still with me. Steve got 14 months of very good remission with his first SCT, we had a really wonderful year and I will always be grateful for that. However we did not think it was good enough to warrant a second go. I think we would be very glad to get the 8 months that you got Keith, most medics have said it is unlikely to exceed that which Steve had last time around. You bouyed me up hugely with the mention that some people have managed a longer remission, that would be absolutely fantastic but I wont count my chickens! There has been no mention of Plexiafor yet Dai, do you know the position with its licencing? However I know they are very good at Kings and I am sure they will get it for him if he needs it.
Gentlemen, thank you so much for your support, it is so good to know I can come here and receive such unfailing support and advice at difficult times. I hope you are all feeling well and looking forward to a relaxing time this summer. We have booked a couple of weeks in the south west corner of France between Stephen's harvest and transplant, I am still not convinced this is a good idea, but we are both really looking forward to a lovely holiday. As you might have guessed I am the 'worrier' in the family,

Best wishes to you all, Mari x

[eveParticipant]

Hi Mari

Go on the holiday,and enjoy it,out of the Myeloma Bubble,between different things Slim and I never managed a holiday,and i truthfully feel a holiday would have been good and relaxed us before it all started.hindsight is a wonderful thing.If we new the future decisions would be easier.8-)

Second SCT you thought you would not be able to do!!!!new things going on all the time,chances to be taken,its better than standing still,and waiting.So I say good luck and I wish you well.Debbie are co ordinator was very good,plus Waddington Ward,only thing was the food.>:-( :'-( gave in after watching Slim struggle took food in,because if he wanted something,it took some time to get it,and by the time it came ,he did not want it.

I do not envy you the travelling,Love Eve

[BADGERParticipant]

Hello Mari

good luck to you and stephen I am sure it will ago ok so glad stephen is very positive I am sure it helps
Love Jo x

[tomParticipant]

Hi Mari and Stephen

Good Luck to you both on the second trip with the SCT.

Love Tom "Onwards and Upwards" xx

[MariParticipant]

Dear Eve, Jo and Tom,
thanks for the kind words and good wishes, I have pulled myself together and feel much stronger today, onwards and upwards indeed Tom.

Eve – I hear what you say, I think a holiday and some sunshine is exactly what we need, Steve is still working full time and even managed to work three days a week throughout his velcade treatment, that man has a core of steel, either that or nothing between the ears, feels no pain, seriously he is a star. He met Debbie on Wednesday and said she was lovely. The transplant co ordinator we had first time around, Laura is now Matron of the unit, so it will be nice to see her again. Do they have single rooms on Waddington, and are there fridges available by the beds? We found this invaluable last time, as Steve did struggle to eat and I used to take him in as many tempting titbits as possible. I am not looking forward to the travelling, I used to hate those train journeys home late at night. I would leave the car at Sevenoaks, which has a direct line to Denmark Hill and then I have a 30 min journey home from there. At least it is in the summer, last time he was in it was Autumn and there were a few dull wet days, and it was darker earlier. Thank you again for all your support,

Mari xx

[eveParticipant]

Hi Mari
Yes to all your questions,the rooms are a bit smaller than Davidson wards.
Good tv,Internet connections £15 for the month,small fridge,There is even a little view over the roof tops if you have a room on the left,many just have brick walls,I worked it out to over 100 steps plus,over 1 mile walking.It,s the steps at the train stations I found hard.
I use to get the train from Otford to Denmark hill,cheapest way for me was over 60 ticket.£5.80 a day.Weekends are a bit of a pain,always seem to be doing repairs on lines tried driving in on a Sunday it was awful.
Mari,if Steve has problem with a dry mouth,there is a spray that recreates saliva horrible but it works.
The staff were excellent,from cleaners right up to doctor,s could not fault them,the lady who was in the kitchen use to be over joyed when Slim ate something,it became like a challenge.

Have a holiday then face the challenge.Love Eve

[MariParticipant]

Thank you Eve, just a bit of fun and then we shall gird our loins. grit our teeth and get this thing done! For all those of you facing an SCT out there, it is worth it, so worth it that Steve is ready to go through a second with only a promise of shortened remission. It is tough but it is doable

Mari xx

[GillParticipant]

I wish you both huge luck I know well the journey to Kings I went from Orpington to Denmark Hill and trudged down that blooming hill to Kings with all the "tempting goodies" I could think of. Trudging back was lighter with dirty washing, mainly PJ bottoms (too much information.)

Stephen had both SCTs in Kings a great,wonderful and caring place. And! just a peice of really useless information that I am sure you will all be impressed with…. I was born there!!! They obviously turn out geniuses:-)

Do keep posting and let us all know how it is going

Love from Gilxx

[VickiParticipant]

Hello Mari,

Just wanted to put our twopenneth in and wish you and Steve best of luck with this second SCT. Will be interested to hear progress, since Colin is waiting for his first. Very best of luck and any food tips welcome as I know that will phase me if Colin does not eat. All the very best

Vicki and Colin x

[AliParticipant]

Hi Mari,

I hope all is going to plan and you are both all set for Monday. My Mum (Margaret!) is very tired in the afternoon and is getting pain in her back and down her legs but we were assured yesterday that this is quite normal. We have got to be at daycase for between 8am – 8.30am – so much for a lie in! Plerixafor has been mentioned but i guess they see how you go first as the drug is so expensive.

Please can I get something straight in my mind? I understand this is Stephens 2nd SCT and they are collecting stem cells again? I had it in my head for some reason it was a process they could only do once (Not the SCT but the harvesting) I am truly relieved!

This forum, I have said many times is a godsend.

Have a lovely weekend

Love Alison xx

[eveParticipant]

Hi Mari
Good luck with the harvest and try to get that holiday in between,when we asked about gong away we were told no to going abroad,my daughter did say at the time,don,t let them rush you,but like all things,you just want to play your part,I think a holiday would have done us the world of good,i suppose with are added burden,it just took to much out of us.physically we both seem to be going through the mill.So you make sure you go while you both feel fit.

Can I use this post to ask if any one knows how Gill and Stephen are doing????Gill has not been posting and Stephen,was having problems,any one know. Love Eve

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