[susie45Participant]

Hi, I am 6weeks post stem cell treatment. I am still feeling weak, tastebuds still awful, effort to walk anywhere. I am wondering if this is normal after this amount of time. I was discharged from hospital after 3 weeks but had to be re- admitted after 3 days with constant nausea and diarrhoea and not being able to eat. I spent a further 2 weeks in hospital with at least 8 of those days still having the sickness and not being able to eat. I know this must have set me back but I am wondering how others felt generally this far into recovery. I know the general recovery can take up to 6 months. I would be glad of other peoples accounts of their recovery. Thanks

[greg777Participant]

Hi Susie,

I reckon everyone reacts differently although my guess is most people would say 6 weeks is still pretty early on in the recovery phase, especially if you have been re-admitted which is bound to knock you down a bit. In my experience, it was about 3 months before I felt like myself again and I had a pretty smooth run. I wouldn’t be expecting too much in the first 100 days but now you are 6 weeks in every day will be a step in the right direction to getting your strength back so just keep plugging away.

All the best,

Greg

[susie45Participant]

Hi Greg, thanks for replying so quickly. It is good to hear your views, maybe I am trying to run before I can walk…..I will certainly not beat myself up about not being able to do things any more! Many thanks and wishing you continued good health!

Best wishes,

Susie

[kevinParticipant]

Hello Susie,

I have had 2 SCT now and would certainly agree with Greg. 6 weeks is certainly quite early especially when you think of what your body and mind has been through. Not only the SCT but also the treatment before it, On both occasions it was around about 3 months before I felt I was over it but then again a little while longer before I considered myself completely over it. It seemed a slow process but looking back I would say to myself I wasn’t doing this or couldn’t do that last week. Only small improvements but a boost non the less, Although not dramatic I could see improvements. I was impatient but I think it is was a case of it will take as long as it takes and nature will take its course.
Best Wishes
Take care
Kevin

[susie45Participant]

Hi Kevin.

Thanks for your reply, as I said to Greg I think I am trying to run before I can walk! I just thought that I would be a bit more mobile at this stage and able to stand up for more than two minutes without feeling so weak!

I will certainly take notice from what you have said and let nature take its course.

Many thanks and take care,

Susie

[adriwest1Participant]

Hi, having my Hickman Line put in this Tuesday any advise would really be appreciated, just feel no nervous.

thank you

Adrian

[greg777Participant]

Hi Adrian,

I had a PICC line in my arm, I am guessing yours is going into your chest? I don’t know if the process is different or not. When it went in, I found it painless but a bit strange. The people doing it are very experienced.

Once it is in, the key thing is keeping it clear of infection. It sound be changed once a week and try to get a good shower cover for it (might be harder with it being in your chest but ask the hospital – they should have some good advice)

It feels a bit weird for a while but you get used to it. I had mine in for 14 months and after a couple of months I honestly didn’t notice it at all – in fact a part of me was a bit sad to see it go when it did because in a way it ended up feeling like a part of me! And it is completely painless and quick when it does come out.

Hope this helps in some way. Best of luck!

Greg

[adriwest1Participant]

Thanks Greg, I othen have a look on this site as I don’t use facebook for advice- don’t want to sound like a moaner but I am finding this so hard. I hate blood/ needles and the constant trips to the hospital.

We are really lucky to have this site to express our feelings as its feels a lonely place sometimes as only we know how we feel, I find friends/family do help but is it me? I feel they don’t really get it!

Thanks Greg- I often read your posts and you are a great help as you have done it and got the t-shirt.

Adrian.

 

[greg777Participant]

Hi Adrian,

Many thanks for your note, it was a very kind thing to say thank you. I think you are right that there is something unique about the patient’s experience that only a patient can understand, although sometimes I do wonder if it is actually harder to be a loved one, because a cancer diagnosis happens to you too, but not physically, which must be hard to deal with emotionally.

If it is any comfort, I have a massive issue with the sight of blood. I absolutely hate it which was a bit of bad luck to get a blood cancer, but it is what it is. The Hickman line will probably make it easier for a while because you won’t need a needle (unless the line gets blocked which is intensely frustrating!) I bet you’ll be amazed what you can force yourself to do – yes, it is absolutely horrible – no-one would choose to do it – but you can definitely do this. I am living proof of that. I had the best part of 2 years going to the hospital every week – often every day – over 3 months of that as an inpatient – but now I am only on 3 monthly check-ups and other than taking penicillin twice a day, there is no visual reminder that anything is wrong. The life I thought I would never get back, came back. Ok, so it is not exactly the same as before, but it is not the hell it is when in the middle of treatment. All I can say is that I wish you all the very best with what you have ahead – I can’t lie and say it is going to be pleasant – but just remember why you are doing it – and it won’t be forever. You can definitely do this.

Wishing you all the very best,

Greg

[susie45Participant]

Hi Adrian,

I too had a picc line in my arm but only for  the stem cell transplant and the weeks following. I didn’t feel it go in and I was surprised when they said it was done .As for afterwards I forgot it was there. Taking it out was no trouble either.

I know how nervous you must feel I was exactly the same about everything!

Best of luck for Tuesday!

Susie

[adriwest1Participant]

Thank you hoth for your kind words, I needed that. Will need your advise again if ok as stem cell looms as soon as the line is on, they said its just a bed when it comes up- this just doesn’t feel real sometimes. Thank you again!!

adrian.

[susie45Participant]

Hi Adrian,

How did it go on Tuesday? How are you feeling?

 

Susie

[adriwest1Participant]

Hi Susie- well I did it, I never thought I would get this far with all the treatment. I’m now waiting on a bed for the main event. How are you feeling now?

Thankyou for asking by the way it means a lot

adrian

[susie45Participant]

Hi Adrian,

Well done you!

Believe you me the end is in sight! It was 7 weeks ago that I had my transplant done and really it has gone so quickly. I have improved greatly from when I first posted on the forum. I think that speaking to people who had actually gone through it helped me tremendously! If I sit up in bed or on a chair I feel totally normal its only when I get up that I realise that I’m still poorly (its only the tiredness but even that is improving).

Which hospital are you in?

Keep me updated with your progress when you feel well enough !

Susie

[adriwest1Participant]

Hi Susie, going to have my SCT in Southampton. I will keep you posted and any tips you have would really be appreciated.

Hope you continue to improve on a daily basis.

Adrian.

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