[MikejanulewiczParticipant]

You 2 guys doing real well.
Sounds like all the usual side effects and ups and downs of the poison and saving life!

I really like the sound (not the look probably) of man size nappies, I was never offered these but could have done with them on a couple of occasions.

How many days post sct now???, I was out at +19, but did have a bit of an infect in last few days.

I lost 20kg in total, from 82 to 62, took a while for food to taste nice again, now I love food like there’s no tomorrow!!!……88kg now!!!

Good luck with next few days guys. I bet you’re both really bored now.

Mike

[louishenryParticipant]

Thanks for that Mike, I’m now SCT+12 and they are considering throwing me out on Friday, SCT+16, infections permitting. I’ve always been skinny, about 65 kg. I went down to 59.8, now back up to 63. Not so boring now I’m allowed out on the ward as long as I wear a mask. Graeme, I hope you’re also now on the way up

Louis

[dinoParticipant]

not sure what happened but submitted blog today which did not take.

Sa and Sun bad days neutraphils in my boots. Monday they were 0.38 and a step change in my demeanour. Today 0.96 and I went off he ward without a mask. If they trend p on tomorrows results then I am going home tomorrow.

Scary about what not to eat for 3 months, no Brie or samosas, beer, cider etc Amixed Xmas where the bright side of being alive and through STC far out weighs the lack of 3 months food stuff – no contest.

Good to hear Louis in a similar position lthough I am sorry you got an infection. I think being 100Kg probably helped me through a lot of the issue. Only lost 4 Kg .

Thanks for the support you hve given to Louis and myself – it means a lot.

[louishenryParticipant]

Well done Graeme and hear hear on the thanks.

[dinoParticipant]

Im out and at home. Didnt expect the do’s and dont’s though. Big no no for lots of foods I like and no alcohol. Tablets for up to 9 months.

Still home and had a home cooked meal – absolutely brill.

How about you Louis any ideas on escape date?

 

[cygnetParticipant]

Welcome home Graeme! I hope you have a good night’s sleep in your own bed!

Thank you for your blog & for sharing your experience with us.

Sending get well wishes,

C xx

[louishenryParticipant]

OK Graeme, you win the race. I’ll be home tomorrow, greatly looking forward to it. Under 3 weeks so I can’t complain.

[rebeccaRParticipant]

Hi you too, well done and now for the easy/enjoyable bit of recovery. Have read your posts with interest (mine was 2 years ago this xmas) – for some reason this site allows my sign in about once in 50 attempts so I am a bit late in the “encouragement” dept. Would add that in 3 months suspect you will be totally back to full fitness/life. Take care with the winter bugs and try not to rush back to work – respect that this has been a major trauma (whether you accept it as such or not!) and start planning next years goals with great hope and zeal of a very long treatment free remission – yeeaah. The memory of SCT fades very quickly for the “patient” however please recognise every step you have taken will be firmly imprinted on your families minds so …lots of treats, indulgence and whatever floats your boat for all. Enjoy

Rebecca

[louishenryParticipant]

Thanks for that Rebecca. I’m already more active than I expected, walking and cycling, but still feeling a bit queasy. Food tastes OK but drinks are most peculiar tasting. The only drinks that taste anything like normal are Coke, well cheap supermarket cola, and white wine! I’m all in favour of treats and indulgences. There’s a very nice little bakery opposite the ferry terminal in Cowes but I might have to be careful with takeaway foods for a bit.

[MikejanulewiczParticipant]

A very merry Xmas to you both.

You really have done v well. An sct is truly major, don’t underestimate the strength this will have taken. I hope that your day 100 bone marrows are clear, and I hope you both have as good a remission as myself, and I hope you both beat my 36 months.

Take things easy, and have a great 2016.

Regards

Mike

[langdaleParticipant]

Just had my SCT and came home 4 days ago after 18 days in hospital. Brushed teeth after every meal and gargled with stuff provided by the hospital. No real problems other than loss of appetite and diarrhoea in the last week (not helped by the poor quality food), which has now cleared up, so I think I got away lightly. Blood counts virtually back to normal although neutrophyls at 0.9 and need to be above 1 so avoiding crowded places. If I had to do it again I would. Took lots of books and a DVD player but couldn’t get wifi or phone signal but surprisingly time didn’t seem to drag. I could get the news and radio stations and telephone on the kit provided. My wife kept me supplied with clean clothes and towels but I wonder how patients get on without that backup.

[annlynnParticipant]

thats what makes us lucky !!!!i always felt so lucky to have aloving family there for me on bad days and good days and the next few weeks you will depend on them when your weak and tired but youl hopefully recover slowly but stedally. i hope so im. sixteen month remission so. goog. luck enjoy. xmas. make the most of every day xxx

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