Hello

Hi Jaffacake,

Good to hear from you and I wish you the best new year possible too.

It sounds like you are suffering from some PTSD, and understandably so. That is incredibly hard to deal with so my heart really goes out to you. Have you got access to professional support to help you work through it? For me, there has been no greater healer than time, as good memories start to crowd out the not so good ones. So here’s hoping that 2020 brings you lots of brilliant memories.

Greg

Hi Greg,

Thankyou for taking the time to reply to me.

I was having physio, speech therapy and even went to local day hospice, but as soon as the word remission was mentioned, all this stopped. I have also been having counselling sessions, but they have not been thar regular. I do write things down tho and to me that helps.

I feel such a burden as I am relying on others to help me ( unable to drive at the moment due to sight ). I can't just get up and go like I used to. I really thought that after a year I would feel better. I walk with a stick and can only get to the corner shop on my own.

Forthnately I am very close to my family. I don't know any other avenues to approach.

Best wishes

Jane

Hi Greg,

Thankyou for taking the time to reply to me.

I was having physio, speech therapy and even went to local day hospice, but as soon as the word remission was mentioned, all this stopped. I have also been having counselling sessions, but they have not been thar regular. I do write things down tho and to me that helps.

I feel such a burden as I am relying on others to help me ( unable to drive at the moment due to sight ). I can't just get up and go like I used to. I really thought that after a year I would feel better. I walk with a stick and can only get to the corner shop on my own.

Forthnately I am very close to my family. I don't know any other avenues to approach.

Best wishes

Jane

Hi ,

sadly I suspect Greg is right and you’re having problems with PTSD. Our innermost thoughts can’t get sorted within a specific time frame, and triggers can truly bring stuff back to bite one on the bum, so to speak. 

This is truly when you need a good counselling service used to dealing with cancer patients, a Macmillan nurse will help but a professional psychologist experienced in cancer and associated problems would be best. Our lass was lucky in that as she had loads of treatment and was looked after at a big specialist hospital, she had access to really good help. It took a long time, lots of sessions, before she dealt with everything, including her survivors guilt.

Hope you find a good way to get that help, and hope you find that 2020 is a better year for you

Hugs xxx

A hi from me as well Jane but so sorry to hear the challenges your first year post SCT has been.

There is no real instruction manual for this part of the journey and for me, now 4 years post my second Allo SCT, I live with the thought ‘expect the unexpected’ as you just don’t know what the next unwanted part of this adventure will bring.

Good that you have family around to help and support. The mobility challenges you are facing are hard and you may wonder was it worth going through SCT?

My mobility issues recovered after 4 months so was very fortunate and I did not suffer the PTSD that some face but my health during the past 3 years has taken some time to recover especially the muscle and nerve pain management.

The challenges of winters have resulted in a number of NHS DB&Bs....... but I am always reminded that I am now coming up to 4 years over the deadline I was given without a successful SCT.

Talking to people face to face does help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

Lets look for 2020 to be a healthy and happy year all round xx

Hi Jane,

Depending on where you live, you might be able to access counseling from charities like Penny Brohn? I had six sessions with a specialist who was a blood cancer patient himself, so it really helped me.

I think the first year is really tough, and you’ve had a rough ride, but I’m really hoping that as time goes on, you’ll notice things getting better and more like how you would like them to be. An SCT is a major procedure, and can have long-lasting effects, but I’m a firm believer that time really helps in dealing with what you have been through.

Greg