Hi everyone,
I'm new here but am hoping to find anyone who might be in an even vaguely similar situation to me. I'm due to go for an allo transplant next month (I have AML and 4 rounds of chemo haven't shifted it). I understand all the medical ups and downs (or as much as anyone can until you experience them...) - but what's really got to me is my Dr has suggested that because of covid, I need to be completely isolated for 'the foreseeable future', i.e. until we get a vaccine for covid, or until things somehow move on in another way with covid. So we're talking potentially 12+ months.
The problem is I have young kids (4y and 2y) - so my husband and I now have a choice to make - either he, the kids and I all isolate together for possibly 12 months, preventing the kids from going back to activities as and when other kids do, depriving them of social interactions with kids their own age, and all four of us dealing with all of the difficulties we all now know are associated with isolation. Or alternatively, I move to my parents' house, and my husband looks after the kids without me but they can all live a 'normal' life (whatever that means post-covid...), going back to nursery etc. in August. We're probably going to go for the former, because I couldn't bear not to see my kids for months on end (I'm already doing blocks of 4w at a time in hospital without them for chemo and it's awful) and a whole year of single parenting would be a lot on my husband. But it's hit me so hard, the idea that my illness is now going to impact so heavily on the kids' development - they haven't been missing out until now because everyone is isolating, so they're all in the same boat. But this... this is something else.
So I'm wondering if there's anyone else out there who might be going through a similar predicament. And what about anyone with older kids?? Are you being told to homeschool?? It all just seems so unrealistic! Can we really isolate for 12+ months??
Also, is there anyone out there who is going for transplant but has NOT been told they have to do this? Does this seems extreme? I mean, I can see the logic behind it, but even the nurses here on the ward (oncology and haem, not transplant yet) seem stunned by the severity of the measures.
I hate that my family are being so heavily impacted by my illness. :-(
Thanks in advance for any advice and support.
Hi and a second welcome to our little corner of the Mac Online Community. Yes, when you go on the SCT Rollercoaster there are so many challenges that have to be dealt with but unfortunately these are unprecedented times with COVID-19 putting even more dumps in the road.
Unlike Greg and yourself our 2 girls are mum’s with 4 granddaughters between them so did not have the immediate challenges of having children at home but being grandparents, it still had many emotional down points.
Like Greg, this is day 70 of my/our ‘shielding’ lockdown and for the last 65 of these days the furthest I have been is our front gate.
My wife works from home normally and has only went out to do some quick errands like pharmacy and the butcher but that’s it...... she doesn’t even go for walks now....... it is all about containment.
I am in remission - not cured so I have been told that catching COVID-19 could well undo all the years of hard work to get me into remission and ‘could’ reawaken any sleeping cancer cells.
I think you will eventually make a decision that will best suit how you and the family will best get through this.
SCT teams will always highlight the ‘worst’ case scenarios and more so at this moment in time........ but these are only a framework and from my experience the goal posts move a lot. So once all the dust settles a clearer plan will come together for you all going forward...... although it is important to keep the ‘greater good’ in all this at the forefront of your thinking as at it’s basic level - it is all about prolonging life.
Like Greg, I am also over 4 years post my second Allo SCT. The first Allo was in June 2014 and was rather uneventful and had no post treatment issues. but did not work.
The second Allo was in October 2015 and it was a complete rollercoaster and as Greg has said you do need to be prepared to be rather poorly. I was rather bad for the first 3-4 months post treatment then it took a good year to get back to some semblance of normality.
I am not an emotional person but the day we were told that we could not see our granddaughters for the first 6 months following the SCT was hard to take, especially when two were yet to be born after each SCT...... ‘Infection machines’ they were described as! but we did get permission after day 100 to see them after my first Allo SCT as I was fine, counts were good and as I said it had not worked........ but the second baby was 6 months old before we meet her.
The year following my second Allo was very isolating as my immune system was just not working and even then it is still at the low side of acceptable but we developed a way to live with this and until COVID-19 showed its face we were living a rather normal life and are confident that we will again get back to this.
Do keep posting as we are around to help you walk this road as best as we can.
You can hit our Community names and see more of our stories.
Hi Nikki , yes we all see your replies and if you want to reply to a specific person just put their name at the start and just post.
It is good having a plan to work towards and this date will come round rather quickly. I bumped a few discussion threads yesterday for others going through SCT so if you go to the top of the page and click on 'discussions' you can go in and have a look at these threads.
Have your team told you what your conditioning will be - conditioning is the treatments they intend to use to fill your immune system?
It would be good if you have a go at putting some info in your profile as it helps a lot for others replying to you Click to see how to add some details to your profile and if course you can see members stories as well by hitting their names.
Always around to help out.
