Hi everyone. My husband has been told that he will need SCT. He has relapsed Hodgkins Lymphoma. Now were thinking ahead, probably too far as we know with cancer to not look far ahead! Deal with the now BUT we are both very scared of this process. The main thing husband talks a lot about is Covid. Covid add another layer of worry doesnt it. Also I am scared of what hes going to go through and also being without him whilst hes in. Has anyone been a carer for a SCT through Covid? Any advice for me when he gets out? I will be off work for 4-8 weeks to help him after. Any advice appreciated. I am going to look on the carers forum too xxThank you xx
Hi Scaggette, SCT sounds very scary but one the whole most folks will agree that the actual process is much less as demeaning abd scary as is made out by consultants and in the information we are all given.
There are a few folks who have had SCT during Covid times so let’s look for them to pick up on your post.
My two Allo (donor) SCTs were not in Covid times and although my wife was with me a lot (we had to go down to Glasgow for me SCTs and we are in Inverness) there were lots of days that I was just sleeping so my wife would have been better off at home…… things are changing a lot at the moment and I have talked a a good number of folks who have been able to have family with them through their SCT including during these Covid times.
As for Covid……. any infection can be a challenge and it is virtually impossible to not have a few in the first year post SCT……. I had Pneumonia and Neutropenic Sepsis but 6 years on I am very well and doing amazing….. just did a 9 1/2 drive from Inverness to Surrey yesterday - that is the scale of what SCT can do.
I will say that looking to ‘just’ be off work for 4 - 8 weeks is very optimistic but each journey is rather different so time will tell on that one.
The important thing at this point is to see the SCT process as a means to an end that will provide longer term remission.
You may find looking at this thread helpful as you will see some great stories SCT Success Stories
Always around to chat as this will help you unpack this whole thing ((hugs))
Hi again Scaggette, the Scottish Route 66 is rather amazing do keep this along with all your other dreams firmly in mind as you both walk this journey.
I would be lying if the SCT journey is easy (although some people sail through it) but it is all very do-able.
At this time it is all about collecting information as to the details as to how this will be done.
Has it been confirmed if he is having an Auto SCT (his own Cells) or an Allo (donor) SCT?
I will put this in on this thread so you can come back to it.
Essential questions to ask:
What type of SCT
Allogeneic (Allo) stem cell transplant - info in this PDF here
Autologus (Auto) stem cell transplants - info in this PDF here.
The exact name of the Conditioning Chemo/radiotherapy that will used to take down his immune system as there are lots so we can hopefully help you on that one.
His Transplant Co-ordinator should be at the meeting, if not ask to meet them or at least their contact details as they will become your all new best friend. Ask to see the SCT unit as this can help turn the stress levels down as it is just another hospital ward... but a very clean ward....... but you would think all hospitals would be like this ;)
You could ask about the time table they are working to?
If he has not had the pre-SCT medical tests (list below) ask if he has to have to have any tests done before the process starts.
Pre-SCT tests
An electrocardiograph (ECG) to check your heart's rhythm and electrical activity
An echocardiogram scan used to look at your heart and nearby blood vessels
An X-Ray or CT to check the condition of your organs such as the lungs and liver
A very detailed Lung Function test to check your lung function and lung capacity
A dental examination including x-ray's to check for any hidden mouth problems as the Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.
Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working. For an Allo SCT data will be collected to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.
You may have a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for.
You may also meet with a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work.
It can be so overwhelming, I asked my wife Fiona who has walked these 22 years with me for her thoughts “…. hi lovely, once you get some clear information and understand the timetable for this the noise between your ears will start to calm down. Mike’s prognosis back in late 2013 was not great, in fact only a few years but we were given ‘hope’ through SCT…. we are 6 years on from SCT and having a great time…… hold on tight and ride the waves as they come xx”
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, nurse team support, financial guidance or just a listening ear.
Do also check out for a local Maggie’s Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support.
……. Message passed on 
Hi Scaggette
Just wanted to add to all the great information Mike has given that I had a stem cell transplant back in 2012 and I am doing fine. First 18 months after the transplant were tough but after that things began to settle down and now my wife and I live a very normal life. I work, travel, go to the pub, play golf (the person whose stem cells I had clearly couldn't putt or that's my excuse). So there is absolutely a normal life to look forward to.. It just takes a bit of time.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
