Life after a SCT - A Survivor's Guide

Looked at All clear again this evening, multi trip two people, declaring my condition, anywhere in Europe 12 months, starts at £174 for both of us annually

Hi Tessa, I see a Maggie's Centre is going to be built in Southampton (link) but it may take some time :(

I go to a men's group once a week where we do an hour of exercise supervised by a cancer instructor, have luck and then a chat. I initially did the 7week (one afternoon) Where now course. It was a great place to meet new folks who have been on their various journeys and get support and some new friends. Maggie's run lots if activities during the week so it's worth a check out. Everyone is so careful about infection so it is a safe place even just for a coffee and cake. 

Tessa, do you have a U3A club near by, we have a number near us and I know from a couple of neighbours who go have found them really good and they even organise holidays and trips away for those who wish to join in, singles and couples, and thats on top of the range of weekly activities and clubs they run. Obviously each one is different but if you can find a good one it may help 

john

Oh Tessa, I really emphasise with you.

My husband and I feel we have been left high and dry and so very alone. We live 4 hours drive away from our families and through the years it has always been us who has had to make the trip back to visit. You could probably count on one hand the number of visitors we have had over the years but have always been very hospitable with home cooked meals, something that was never reciprocated. Our friend base was at our workplaces which were both 20 miles away. So when AML struck my husband, we were instantly on our own.

 My son and his wife lived a mile away but his wife was always very difficult and at the worst possible time of our lives she decided they might catch something from the chemo and refused to let us see our son or grandsons. It has been 4 years now since we have seen them (but that’s another story). 

We recently met a lovely lady on holiday who was born in UK but had emigrated to Australia. On telling her our story she said she believed it was an English thing as it wasn’t like that in Australia. She said because they spend so much time outdoors they socialise a lot more and everyone mucks in and helps each other out. She thinks us Brits are so wrapped up in our houses. She said on a recent trip back to UK they dropped unexpectedly round a relatives they had not seen in 30 years. Instead of the warm welcome they had hoped for after traveling from the other side of the world, the relative said ‘oh, you should have told us you were coming, I haven’t hoovered upstairs’. 

As you say people these days are so wrapped up in their own lives to help each other out any more. Our neighbours are lovely but arrive home from work in their cars and disappear indoors. They are always in a hurry to make their tea and watch TV rather than have a chat. Unfortunately I think our lifestyles nowadays are making for very lonely futures.

Hugs

Sorry John but its the U3A members that have been so disappointing to me. I used to run the garden group with 40 members. Of those only 3 have kept in touch regularly, 2 others visited twice over the year have been ill. Thats my reward for several years of effort I put into organizing their monthly meetings. Also went to the genealogy group 60 members for 13 years. Gave them talks twice a year. Again only heard from 2 of them, not even from the group leader. One friend says when she's mentioned me they don't even know who I am. I must be so unmemorable. Perhaps old people have bad memories. They seem welcoming when you are fit enough to get to meetings but they don't care if you fall by the wayside. As I said you don't really make friends in a crowd.

Sorry for long rant but I'm really bitter I put in so much effort and time and I'm just invisible. And at some point I will probably have to grit my teeth and go back and smile when they say how nice it is to see me and how much they've missed me. Maybe some of them have but its not much help unless they communicate it to me.

Tessa

Thanks fanilow. I didnt think it was just me. Re the cooking I have had to endure people telling me what they've cooked for their other guests yet they don't invite me. One of these actually suggested I bring my own food round on Boxing Day. Perhaps she was afraid of poisoning me. 

Tessa

sounds fine sue 

daughter in law sounds a right cow !! do you have phone or fb contact with your son and grandsons, ? she is a disgrace

You’ve summed her up well Yvonne!

From the minute she came into our lives she was out to get our son into her life and out of ours. Unfortunately when you have a husband in hospital undergoing a SCT every battle becomes impossible to win as the situation leaves you with no resources to fight anymore. 

She blocked us on FB and instagram so we didn’t even have the joy of seeing them whilst in isolation. It is a toxic relationship and our son is scared of her. She has stopped him having any contact with any of his family or friends. She has total control. 

On a brighter note, I have my husband back. He is 4 years post transplant and we are trying to enjoy every minute. 

i’m glad you are finding contentment

but one day the children may find you ,and hear that their mother stopped them from seeing you , when you needed them most ,, your son obviously knows the same could hapoen to him if he tries to push for a reconcilliation z