SCT Success Stories

Hi Custard,

youre so right, blood cancer does indeed feel like forever, daughter is still struggling with after effects of such a lot of treatment, and she was diagnosed way back in 2004! Me? Diagnosed in February this year with BC and it’s gone, at least I hope so! 

Hugs xxx

I'm certain it must be common!

One of the CNS in our chemo unit now has a job in the hospital Macmillan centre. She said she felt so sad and ineffective, not having the time to offer patients and carers any space and time to offload their fears and worries and that al her time was taken up with clinics and clinical issues. She cites my input as a catalyst for the change. Not sure if that is good or bad!

I have had specialist counselling from Macmillan and it was offered to my husband too. But I do think the clinicians should be more aware of the emotional effects of SCT and more cognisant of patients lives outside the hospital. (It feels as though they think we just turn up to clinic and the vapourise until next time!)

Custard

You are so right Custard that is why we at time have to be our own advocates and keep pushing the system for our own good but also for the good of others going through this.

((hugs))

Hi just thought I'd mention what side effects of auto SCT have now dissappeared

 Nausea and being sick 

Diarrhoea

Pain in my jaw and bones ,only my lower ribs are stillslightly sore

My muscles have now stretched back to normal.

My skin has stopped shedding like snow

The tips of my fingers are still a bit tingly as our two of my toes

I can climb stairs without stopping half way.

I can now eat normally and like most foods again

My teeth have survived  and the gum sensitivity is slowly improving , I can now eat chocolate.

My hair on my head is nice and curly

Hi Orsen... that’s all sounds really  positive. When did you have your SCT? (Sorry if I’ve missed you saying before)

Hello Amnesia Custard,

If you go back to the beginning of the thread, you'll see that there have been a lot of problems with notifications coming through.  I posted the thread originally and didn't know anyone had replied for several weeks.  I came on here on the off chance and saw several responses!  Additionally, you'll see that it takes people several days to respond.  I suppose with treatments and appointments and holding down a full time job and generally being consumed with the fear of dying, one doesn't always get online as often as one would like...

Thanks for your contribution.  How awful for you husband to be going through this.  But awful for you too.  I often feel the 'carers' get left behind.  I wish my mum had someone to talk to as she is the one who accompanies me to everything yet I'm the one offered counselling and support groups.  I wish there was a 'supporters support group'!

Best,

Shelley

Hi Shelley we do actually have a specific Carers Only forum but it does covers all types of cancers..... however it is an interesting thought to start a Carers thread in the SCT corner of the Online Community to collect the combined wisdom of the folks who have to sit through all this and hold the hands of those on the SCT journey, as in reality the SCT journey is rather specific.....mmmm, what do you think?

... and yes the notifications do tend to take the weekend off at the moment but the powers that be are working to fix this one.

((hugs)) all round.

Thank you all for your input.  Here's my opinion...

I used to be a frequent contributor on the carers forum, at the same time as I was more active here, bit I found that (probably naturally) actual support is quite limited, as most people were too wrapped up in heir own problems. This is no criticism, I think it is inevitable. You can't expect someone who is actively caring for a loved one to care for someone else as well, bar expressing a bit of empathy.

As Mike points out, the SCT experience is so specific, so long term and so intense, that there is actually very little understanding of either the process or the effects if you haven't been there. And again, everyone's experience is different - I personally notice a huge difference between the posts of people who have had allo and auto SCTs, especially in the later stages post transplant.

Personally, I don't think I'd like to see a Carer's Corner on SCT...it could sideline us carers to our own little ghetto - a place where, once again, our needs are not really considered as the focus is (naturally) on the patient. (I suppose at least we could express how fed up/worried/tired/ignored/unconsidered we are, without risk of offending anyone!) Anyway, that's been one of my beefs with the NHS offering - the support for the other person who gives up everything (dreams, lifestyle, work, social life, sleep etc etc) are not seen as important. That's the person who is saving the NHS and care services a fortune! Thank goodness for Macmillan, who have been a great support to both of us in this experience, and probably more use to me than to my husband.

Maybe a "late effects" section might be of more use?

Custard

Hi all,

as a carer I too felt somehow I ‘needed’ to be ignored, as we were not going through the traumatic experiences of some of the toughest treatments known for cancer. I contributed to ‘Carers only’ for a good few years, and it was me who suggested to Admin that this SCT forum be set up. There seemed to be a need for when standard chemos for blood cancers fail. 

I do remember though, that in the month daughter was in for her allo, I had a couple of complementary therapy sessions, a week apart, and they were back and shoulder massages through a towel, using one of those kneel stool things. The first one made me cry like a baby, fortunately the therapist was experienced and simply handed me a box of tissues! She just knew the strain of seeing a close relative go through this.while still keeping it all together for the patient. That was the holistic nature of the Christie for you! 

At least I have first hand knowledge of how it felt for my daughter when she decided to help me through my cancer too, bless her. And she was terrific! Fortunately (we hope) mine ‘just’ needed surgery, but also meds for 5 years. 

But like Custard I think the ‘altogether’ nature of this part of Mac means that patients and carers can each put in their specific aspects of treatment and where patients memories thankfully get a little fuzzy (nice expression, Mike) for some of us carers those times can still stay crystal clear and we can maybe say what worked then, to help others. I might be explaining this very poorly, but I hope you ‘get it’

hugs xxx

Hi Shelley  sorry that a little rabbit trail is going on but it just shows just how complicated the SCT journey can be xx