[MothasParticipant]

Great news. Congrats and thanks for the running commentary.

[tomParticipant]

Hi Megad and of Course Phil

Well Done you two, sat at home as proud as punch and so you should be 😀 .
Now I need to say this first, Now you are home Phil its not all done Please take your time and keep your temp checks regular as it will take you a few more months before you feel the difference, if like me I woke up one morning and knew Just Knew I was better 😀 and have never looked back since 😎 so one day at a time and if you need that extra sleep take it 😉

if you are both feeling scared well thats normal as I was for a day or two, it will pass.

Keep strong and well done

Love Tom Onwards and Upwards xxx

[AliParticipant]

Hi Megan and Phil

Well done and WELCOME HOME!

I havent been on here quite so much just lately, im trying to make the most of life being more on an even keel:-) Although I have been tuned it to your thread.

Take it easy now both of you

Love Ali xx

[VickiParticipant]

Megan and Phil

That's great for you both…..take toms advice, slowly slowly and keep an eye on temperatures…..I'm still doing it and getting on Colin's nerves :-). It's right about over doing it as Colin knows when he's done too much, but don't let Phil get there if you can help it!

It does feel great to have them home doesn't it! You enjoy your time together, no drip stand, no blood pressure testing and obs!. Marmite on toast though……either love it or hate it! 🙂

Good luck both

Vicki and Colin x 🙂

[DebsParticipant]

Hi Megan and Phil

I've just read this post for the first time and wanted to say Welcome Home Phil. It made me cry reading the post, just because it brought back memories of the journey that Nick and I went through 18 months ago. I remember so well, those first steps outside of the hospital room and what a HUGE achievement it was 🙂

As people have said, make sure that Phil takes it easy and listens to his body….if it feels tired, he should rest. Ignore at your peril! I did and ended up wiped out for 3 months! But if you listen, each day he will get that bit better. The other tip I would give him, is to remember how far he has come from his neutrophils being 0. I started by worrying about what I couldn't do….and got very fed up! But as soon as I started to think about it in terms of how much better I was, I coped MUCH better.

Good luck with the recovery 🙂

Debs x

[GillParticipant]

A huge Welcome Home from me Gill x

[FOXLEYParticipant]

Well done both of you and welcome home. Lots of good advice given too by those who have trod the path before.
Chris

[Anonymous]

glad all is well and phil is home. your stories brought back memories of when henry was in hospital having his sct. look after yourself as well and rest too. i had counselling after henry came home as i found i was emotionally drained. it did help. i still fuss and worry too much but i think we have now turned a corner and henry hasnt had a chest infection since just before xmas:). can you tell me the name of the medication phil is taking for neuropathy as henry still has this. take care and good luck. if you need a chat tweet me:)! love sarah xxxx im off for a run now as going to do a 5k run in brighton in june for myeloma:)

[meganjaneParticipant]

Hi Sarah,

I am so glad to hear Henry has got rid of the nasty chest infections. I know it is early days but so far Phil has managed to stay infection free but I am a bit trigger happy with the thermometer still, I suppose it will take time to stop worrying constantly!:-)

Phil originally tried a 10mg dose of amitriptyline daily for the neuropathy but this did not help at all, Phil was on this for about a month but there was no change in how his feet felt. Last Tuesday Phil was given a new drug to try, 75mg 2 times a day of pregabalin – Phil thinks there may be a slight improvement. The 75 mg dose is the lowest and the doctor said that he would up the dose week by week to 100 and then 150, etc, etc until there is a response. The doctor said pregabalin was better than gabapentin as there are less side effects. Phil has not tried gabapentin but he has not noticed too many side effects from the pregabalin although it has maybe made Phil feel more tired but it is hard to sort the side effects of the drug from the side effects of the transplant!

Megan

[GrayhamParticipant]

Hi Megsn……….. hope Phil is improving………

The MRI… phil is not alone here….. it is a mind game and most of us hit the panic button eventually. I refused to have a second one so they agreed to sedate me, marginally… and it worked a treat. Part of my reluctance was that it was too painful(at the time) to lie on my back and the other was the "closeness" of it all…. scary.

So… try for a sedation if it crops up again??

Oooops….. just read some more of the thread….. congrats at being ay home…. great news… well done.

Regards

Grayham

[DaiCroParticipant]

Home is where the heart is… and the TV, sound system, bed, toilet… etc. etc. Familiar things that may seem trivial to some but are of vital importance when recovering from a major procedure like a SCT.:-|

Take it easy and take it slow,,, very slow. Rest up, don't try too much too soon and don;t feel guilty about chilling out and generally doing an impression of your favourite veg. 😎

It will be worth it in the long run.

Take it easy but take it. & welcome home.:-)

Dai.

[meganjaneParticipant]

[u]Day ????[/u] – I stopped counting when Phil got home 😀

Thank you all for your kind and helpful comments. I can confirm that Phil has been taking it easy and not rushing and trying to do too much too quickly. I have had poor Phil quarantined in the house since he arrived home but luckily he has not felt up to venturing out. This allowed him to avoid the snow and he has also remained infection free.

When Phil first arrived home he needed to return to St. Bart's every three/four days for blood tests (this made a mockery of my quarantine protocols!) and needed some platelet top ups and two units of blood but last week the counts were good enough that the trip in to hospital was extended to a week and after our visit yesterday it has been extended to 10 days and Phil can go to our local hospital (three minutes drive from home) for the tests and will only need to go to Bart's if any platelets/blood are needed. Phil's PICC line was also removed yesterday.

Before the Transplant we were both obsessed with the Paraprotein results but we only noticed in passing last week that they had tested it again and it had dropped another bit from 5 to 4 so it seems all the treatment is working.:-)

The remaining side effects from the transplant are acid if Phil eats anything even slightly spicy (luckily Phil never lost his sense of taste but bland food is still required for the time being) and fatigue. The fatigue is getting better day-by-day but Phil still finds it difficult to sleep through the night and needs to rest throughout the day. Phil luckily never had any mouth ulcers and we have both now become accustomed to his new hair style, no hair is easy to manage!:-)

Thanks again to all of you for your continued support.

Megan

[tomParticipant]

Hi Megan And Phil

When I had my SCT and went back for tests at Castle Hill in Hull I was booked in and put in a side room then a Nurse used to come in and take my Bloods/Temp then take me through to another waiting room and put me in another side room and then the Dr came for me took me into his room and told me all bout my results, On the third week (i went weekly) and still being put in the "Spare" room ha ha so I said why cant i go with all the others and have a chat? I was told I need to be quarantined still???? I said well I dont know why I have been to the Pub loads of times ??, I am not saying go out and do it it just worked for iccle ole me 😎

Keep on doing what your are both doing it sounds like its working a treat

Love to you Both

Tom Onwards and upwards xxx

[VickiParticipant]

Hi Megan,

Glad to hear you and Phil are doing ok. That's great and no infections! Don't worry about being trigger happy with the thermometer……I still am :-)! With regard to the fatigue and sleeping through the night. Colin still gets very tired, it seems to go in fits and starts….he does a little bit too much and the bang, wiped out for a marathon sleep session. Sleeping though the night is getting better, the first couple of months he was up every night, but that is slowly getting better. Colin's mm was diagnosed following a bad bad and after some experimentation Colin was given pregabalin. He has found that fine so hopefully that will work for Phil too 🙂

Keep going it will get better, along with the weather soon!

Vicki and Colin x

[Anonymous]

Hi Megan

How is Phil doing and how are you?

Love sarah xx

[Author]

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