I’m currently 7 months post stem cell transplant and unfortunately suffering with GVHD. Everything was settling but unfortunately it seems to be flaring again. I’m finding this rollercoaster tiring and not sure if there’s maybe something other than counsiling that may help.
Has anyone used antidepressants during or after treatment? Did they help?
Was there any other forms of treatment that worked for you? Or maybe even things you changed in your life to make life a little easier?
I will be talking to my doctor but it’s always good to hear from real people who have experienced this. Thanks x
Hi Goody, I have not been in your situation but you have been through so much emotionally, thought wise, physically and practically I personally believe that my body keeps going and going and then there is a delayed action and the low hits me and then it takes a very long time to build myself up again emotionally, thought wise and physically. I am pleased to hear you will be talking to your doctor, because he might diagnose that you need specialised help, whatever that might be. Anyway, with no medical training, perhaps being kind to yourself, laughter with friends, a bit of fresh air and gentle exercise and lots of treats. Please let us know how you get on as we are here to support you and the Bloodwise support line details are above. Take lots of care you are so good at supporting others.
Those ups and downs are definitely regular parts of the journey aren’t they. Are there any local support groups you can get to. I found these a good source of information and support x
Hi Goody, I’m sorry to hear you’re going through a tough time at moment, counselling and anti depressants can work and as Erica has mentioned some good ideas about how you can look after yourself. Talking to your GP and getting their professionally opinion about what would be best for you for at this stage is a step in the right direction your taking. Feel free to give the support line a call if you need if it would help talking someone where you can express your feelings and emotions. Please let us know how your getting along. Look after yourself.
Thanks Bav, I’m feeling a bit better today. Seems to be when I’m tired I’m so down and when I have those days of doing absolutely nothing I then have energy again. I’m deffinitely going to talk to my Dr but I think I also need to get used to listening to my body and not beating myself up every time I have days where I literally can’t do anything. X
This is so important! It took me a long time to really listen to my body as my survival mode was get up and get going. Resting when you need it is the way to go do well done!
Yes - I had a look online and was surprised what was out there. It’s works for done people but not others. I dip in end out of the group and so do lots of people x
Hi, doing ok Su thanks. Just waiting for my clinic apt at local hospital but oral gvhd getting worse. Worried they are going to say go up even higher on steroids . Really hoping they start me on ECP asap! Although it takes months to work I might have to go up steroids until it starts working. I’ll relax alot more once I know what the plan is and when it’s happening, so hard having everything out of my control…
Hi Goody, struggling with GVHD can be tough, so I’m not surprised to hear you are feeling low as well. Life post-transplant can be tricky. Could you speak to your nurse or GP about how you are feeling? I know after my transplant, my consultant was able to refer me for counselling/psychological within the haematology and oncology unit.
I think it’s really important to acknowledge what a journey we’ve been on when we’ve had a transplant - emotionally as well as physically, so I think it’s really important to be kind to ourselves and do nice things. Take care.
Thanks Joanna, I’m going to arrange to see a counsiler soon as Glasgow is too far to see the one I’ve been referred to. I thought I was starting ECP and would be too tired to go to the private sessions. A bit in limbo about what is actually happening treatment wise… hopefuly start counsiling soon! Xx
Oh, I hate things being out of my control and also feeling I am in limbo. Let us know when your oral gvhd clinic appointment at your local hospital is and when you get your counselling sorted out. Take care and pamper yourself.
It’s only natural to feel depressed, we’ve all experienced it as we’ve all been through a lot. There’s no one size fits all i think. Might be that a combination of things will work. I certainly have black moods. I had a lousy day yesterday. Everything at work was going wrong then I went home in the rain and a ten minute bus ride took an hour as there were roadworks all the way home so I was in a bad frame of mind when I got home and that was before even having my customary minimum of a few minutes a day thinking about my condition and treatment. I tend to try and manage with things I enjoy like music or a film I’m fond of but I can see why people take anti-depressants as it’s a really tough life. Hope everything gets better for you and you’ve always got people here who will understand what it’s like.
Hi Franko, some good tips, doing things you enjoy such as listening to music or watching a movie. Definitely true, there no one size fits all. Everyone is different it’s about trying things to see what works for you. Hope your day at work is better today, have a lovely rest of week too.
Oh I got some good news my recent bone marrow is all clear again so I celebrated with an early night! Think sleep is the best treat I can give myself now! Haha
Thanks Franko, music is deffinitely helped me so much throughout all my treatment! It’s great to find people who just get it. Also getting caught in the rain on he way back from work is always the worst but best feeling ever once your Finaly home and can get in your PJ’s! x
! Hope you managed to get a good rest too 