Mental well being.

Hi again  and good that you made your way over to our corner of the Community and good that we can see your story in your profile.

I also was diagnosed with a rare type of Cutaneous T-Cell Lymphoma (Skin Lymphoma) (CTCL) way back in 1999 and long story short - had two Allo SCTs with cells from my brother first June 2014 and second October 2015 and was told I was in remission in September 2016.......17 years after being told that I would never see remission - you getting my smile 

I did ok with the 'battle between the ears'...... it has been more my medical problems post treatment but as this was a total 'final roll of the dice' I am content with the results and continue to see the benefits from going on the journey.

SCT is a major treatment journey - a life or death experience even, so not surprised that you are on a rollercoaster of emotions. The post SCT treatment recovery does take a long time and far longer than you would have first hoped for........ as one of the other group members will always say "taking each day at a time is the best way to move forward"

In this thread Life after a SCT - A Survivor's Guide we have tried to collect our thoughts about post SCT recovery - have a look.

Some of the other did have emotional/mental challenges following treatment so I will let them unpack this part.

We do often post this great paper as it does highlight the milestones in the post cancer treatment journey.... just SCT is that more challenging.

The one thing I did find helpful was talking to people face to face so check to see if you have any Local Macmillan Support in your area as the 'HOPE' course is very good or a Maggie’s Centre as these folks are amazing and I did the 'where now?' course a few years back and this was great at unpacking the post treatment issues.

Keep posting as we are around to help as best as we can.

Hello  

and so very sorry you’ve needed all this! It’s still relatively early days post SCT, though you might not think it.

I think a read of Dr Peter Harvey’s paper on ‘when treatment ends, what then?’ will definitely help here, as might some one to one chats with a counsellor, (but that will often take time to arrange) You can google, it’s easy to find, or maybe someone can put on a link here (I’m on my phone and it doesn’t want to!) 

You've been through potentially life changing treatment, possibly with blinkers on as our daughter did, and it’s become a bit of a shock realising it’s (hopefully) all done and dusted and recovery is possible.

The paper does put it very well, there are a number of phases involved in recovering, shock, anger and denial to begin with, then after it’s all over, recovery (which it sounds as if you’re doing well) and then the bit ‘between the ears’ reflection and realisation is needed. 

Keep posting, there’s lots of help on here! 

Hugs xxx

Ha! Mike and I were typing at the same time!

hugs xxx

Yes moomy, we need one of these ‘icons’ things that tells if someone else is typing lol.

Have a great weekend, is your lass still on holiday?

((hugs))

yes, she’s still away so I’m marooned at home with the puppy! 
hugs xxx

Thanks for that, I have been reading the SCT group. I feel a fraud that mine has so far gone so well, first week out I was tired and sluggish but since that I haven't really had a problem. What I did find strange that coming out I felt I could get back on the rugby pitch but come day 50ish I was getting out of breath going up the stairs. My knees are like jelly at the best of times (rugby injuries) but have still managed to keep up with my 30 squats a day even in hospital. 

I will look into speaking to someone about my mental issues. 

Thank you

Hi again , when I come out of my first Allo SCT I had no issues.... but it did not work. Allo number two was a totally different ball game...... we all do what we need to do to get out the other end..... and I always say except the unexpected.

The recovery post treatment is so individual and one size does not fit all so never see yourself being a fraud, you have been through a life changing process and it's not finished yet.

Have you checked out for a Maggie’s Centre in your area?....... up in the Highlands it is normal for folks to do a 4 hour round trip to Inverness just to use the one on one support available in our centre.

You need to see the post SCT part to be like a marathon, don't expect to sprint this..... give your body and mind time to recover and heal.

Always around to help.

Hi again ,

yes, this post treatment stage truly is more about your mental health as much as physical health. it takes time, but some sort of talking therapy ; or even keeping a journal, can help a lot. So please don’t feel a fraud, our emotional sides can take even longer to heal than our physical sides sometimes! And our body needs are really intertwined.
Daughter even had some survivors guilt issues, as well as future planning problems. She had an excellent counsellor and now her mental state is fine. 
Keep posting, as even writing it down can help.

hugs xxx

Are you on steroids? Those can effect your mental health. Even so, you've been through a lot!! Not a surprise that now that you feel better, your mind has the energy to really think about it. Recognize your thoughts but don't let it get you down.