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Stem cell transplant

Steph19
Posted by

Hi i am very new to this sote, never actually wrote on any sote before, im 33 and due to have a stem cell transplant early February, feeling scared and anxcious dont know what to expect, im a single mam i have three children all under 11, my mam is a great help but i need to tell my children i cant see them for the 4 weeks my consultant says i will be in isolation but i just break down at the thought of saying the words out loud to them and feel sick at the thought of it although i know it has to be done. Any advice on explaining to my children would be greatly appreciated. Thanxs.

Steph19
rily
Posted by

Hi . I would just like to welcome you to the community. I see you have just found the ALL group and posted there. You should get some good help and support from the members there with experience of this when they pick up your post. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?
greg777
Posted by

Hi Steph,

Welcome to the forum, although I am really sorry for the reason you had to post. This site has a dedicated part for people going through stem cell transplants so please pop over and join us Stem Cell Transplants for Blood Cancers - Forum

My children were 8, 6 and 2 when I had my transplants, and I am not going to lie to you, it was not a good time. It was very emotional and heartbreaking to have to leave them for that long. It is up to you what you decide to tell them, we decided to be as honest as we thought appropriate for their age. The eldest two knew I had cancer and that I needed to go into hospital to get better. The youngest was too young to understand, so we just said I was poorly and needed to go away to get better. 

In my experience, children of that age live very much in the moment, so they will miss you terribly when you have to leave, but will probably get on with what is in front of them the next day. You will probably feel the absence much worse. Also, I find children to be a resilient bunch. When I was back home, things soon got back to normal and I’m sure it has had very little long-lasting impact on them.

Please come and join us in the SCT part of the forum, there are some great people with loads of experience over there, and we can help you through every step of the way.

Greg

Steph19
Posted by

Hi thank you for your reply i will join the SCT group, i have my own head around the transplant and feel as prepared as i think i can be although i know everyone reacts differently so im probly not prepared really but i do understand the procedure etc. My children are 11, 8 and 4 ive had quite a few long hospital stays its my oldest im more worried about as she understands more but is also more sensitive, i havent told them yet as was waiting till nearer the time they do know im spending feb in hospital i just havent mentioned the part that i cant see them. Think im going to have to just tell them next week as im getting myself upset about it everyday at the moment and suppose once ive put it out there then they can have a few weeks to get used to it. Thank you for your advice its very much appreciated.

Steph.

Steph19
greg777
Posted by

Hi Steph,

My eldest is now 12 and so yes I can see how the communication might be a bit different at that age. As the eldest is a bit older, they may let her see you (in my experience, it was only about a week to 10 days when I was most vulnerable to infection), but your hospital might have a blanket ban on children as the risk of infection could be assessed as too high. It could be worth asking though.

Does your daughter’s school know about it and can they offer support during this time? Our school was excellent in giving them additional support at this time.

You are going to know your children best. We always took the honest approach with them, within the realms of what we thought was age appropriate. There are also lots of children’s books that help explain procedures at a level that will make sense to them, which may be worth a try? Also, will you be able to take electronic devices in? Whilst never as good as the real thing, they can help you and your children to feel connected (although having said that there were some days I wasn’t in contact with them because I did not want them to see me so poorly).

It is most likely going to be a difficult period ahead, but there are lots and lots of success stories out there, and I try to tell anyone just beginning the process that whilst not fun, it is all temporary, a necessary evil to get through and to get you where you want to be.

Wishing you all the very best and looking forward to seeing you over in the SCT part of the forum.

Greg

Thehighlander
Posted by

Hi  and a second welcome to the Online Community. Like Greg I have been through two Stem Cell Transplants both with cells from my brother. The first was a walk in the park, the second was very hard work........ but fast forward 3+ years I am in remission for a type of Lymphoma that I was told back in 1999 that would 'get me' in the end - not.

I see you have joined the SCT Forum. So hit the 'Start a Discussion' tab and introduce yourself to these amazing folks.

Have you been told the conditioning chemo they are using to kill off your immune system, if you know put that in your first post as one of us will have been through it.

It would also be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

Will keep an eye open for you in the SCT group.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis