Life after a SCT - A Survivor's Guide

Aw Bauloe, a hug to your daughter from us! This is so tough on everyone. Your husband can make it, it just takes time. I'm lucky my kids aren't that young. Still, cancer in the family affects everyone. 

My older son stopped doing homework a few months ago and I'm just now realizing how deep in the hole he is. I'm embarrassed to admit that I played the sick mom card when I contacted his teacher about it. Sigh... we do the best we can.

Hi Bauloe,

Yes, the 3 steps forward and at least 2 back is so incredibly common at this stage; but it will improve, it’s just so slow! 

Daughter was ‘tied’ to the hospital for ever, it seemed, as for some reason her new bone marrow didn’t seem to want to produce red cells for well over 2 years, so every 3 weeks it was back for a transfusion. Suddenly it changed overnight, it seemed. They suspect it was due to her enormous treatment load. 

Now, apart from an incredibly low immune system she’s doing ok. 

Hugs xxx

Thanks everyone, it really helps to hear your experiences x

Who's hits a good job I come on here I'd forgotten those fizzy tablets to stop cramp, which means I had to go and get them therefore remembered the cupcakes were in the oven . My muscles still feel tight in the mornings for a couple of hours , then S I move about they get better. Still walking the golf course and enjoying playing 3 times a week. The only thing upsetting me at the moment is fresh coffee so that's easy tea instead. The warm weather makes me feel better too. Still can't put weight on yet had sausage and mash and onion gravy last night, ate the lot and said I was still hungry family flew to my aide with an extra two sausage. So good to me they are ! Highlander trying the Teachers Peaty whisky of hubbies this week. I feel so happy and well despite what a horrible journey I've had . Oops off I go again check the baking . Sue 

Sue the post SCT revelations, adventures, disappointments and achievements are both interesting and challenging as we develop our 'new' us. I was off coffee for a few years and now I am a complete snob and treated my 'new me' with a posh coffee machine and bean grinder to make real coffee.

We are down in Edinburgh sitting our 3 granddaughters for a night and I have the keys to my son in laws rather big collection of Whiskys so I am focusing on a rather expensive 18 year old Single Malt...... I will report back Sue.

Daughter had her annual check up today. 

As luck happens, she’s been doing lots of house renovation work and both her hands and her knees are swollen and painful. It seems to happen for a few weeks then goes away; this time it has been quite bad so she remembered to ask about it. They feel it maybe as a result of all the treatment she’s had and the inevitable blood vessel damage that may well have led to arthritis, they are going to arrange scans and tests. They also poo-poohed the ‘permission’ for Oxford to get I/g’s, ‘wouldn’t happen here’ was the answer, but it’s too far for her to travel 160 miles to get that done!

Hey ho, really hope they can find out why this is happening and sort out something to help her. 

Hugs xxx 

We never know what twists and turns will come along during the post SCT journey but it would be good to get to the bottom of her swelling and pains and see if something can be done to improve her outlook. Postcode lottery for some treatments comes to mind ????....Is it possible to l/g's private?....... but the cosy :(

I was given some warnings about possible future issues due to the massive quantity of chemo and 45 Radiotherapy sessions I have had. I do have other complications include being monitored for Asbestosis and having 15+ years of UVA treatment to my skin so I do get reminded to expect the unexpected.

Even last week we had some very hot weather and even using factor 50, long sleeves, no shorts and a big hat I have a burn on my left leg on the front of the thigh as I was on my knees doing a lot of weeding and cleaning the garden (catching up on 4+ years) and I was burned through my trousers........ lesson learned, so I have been out to get some UV protected work trousers for the garden

((Hugs)) all round.  

Thinking of Elena and her family, she lived not too far from here.....

hugs xxx

Lovely photo Moomy. I often think of Elmambo too. I feel very sad that things didn’t work out the way they should have. Even though I never met, her warmth and humanity shone through in her posts.

Greg

Yes, we never met either, but she gave a really lovely impression in all her posts, I came across her first of all in the incredibly long post in the Hodgkin's Lymphoma group, there were a number of folk who joined in as they all were going through treatment at the same sort of time. Unfortunately she was one who didn't get into remission. She went through so much, and had a partner and a six year old daughter too. 

I posted a photo of this area and she said in reply that she lived in the next town. 

So this is for you, dear Elena.

Hugs xxx