Self help thread. I am a widow coping getting on with it

lessonlearned · 30 June 2018 at 6:54PM

Anyway hope you don't have to wait too long, it must be nerve wracking.

Once you get your results you can then decide what to do. Not easy for you.

lessonlearned · 30 June 2018 at 7:02PM

Oddly enough.....Jolly Dollies, the widows group I belong to, was founded by a woman whose husband had the same condition. So, in the groups early days many of the members had husband's who had also died of it.

I didn't know that when I joined up because the group is open to all comers but imagine my astonishment when I went to the first lunch and found the host knew all about my husband's illness because her husband had also suffered from it.

We did join a support group at one stage but I found it very hard to cope with it, seeing people whose condition was more advanced than my husband's was at that stage. I think he found it hard too, because after we had attended a couple of meetings he said he didn't want to go any more.

The one good thing to come out of the support group is that they have a regular newsletter which I did find helpful in tracking down research.

lessonlearned · 30 June 2018 at 7:24PM

Well I've done naff all today. Far too hot. The house is a tip, packing boxes everywhere and I've not even eaten yet. :rotfl:

I'll sling some fish in the oven with a few vegetables and leave it at that. I'll get up early and clean the house before it gets hot.

Manana.......:rotfl:

humptydumptybits · 30 June 2018 at 9:47PM

I can imagine how hard it must be to "see the future" like that. The woman I knew was considering diagnosis for Huntingdons as she didn't want to pass it on, a heartbreaking place to be.

I would imagine funding is the issue with rarer conditions, not fair but probably true. At least your sons have ideas of how to keep safe.

My genetic Consultant also divides his time between here and the USA, again I imagine that is where alot of funding is. All that research doesn't come cheap.

It is going to be weeks before I hear anything, I've already waited months for the appointment. I was on the verge of paying for it, not cheap either, I just want an answer.

lessonlearned · 1 July 2018 at 12:27AM

Unfortunately some tests do take a long time, especially if cultures have to be grown. You are going to have to be patient.

Maybe you could try and practice some kind of mindfulness. I have never been able to master meditation but working with my hands seems to help still my brain and stop thoughts whirring round and round. Gardening, decorating, needlework, anything that gets me "in the zone".

I know it's easier to say than do but you really need to try and switch off a bit, look after yourself and give your body a break. After all, without being negative here, if you are going to need surgery then your body has to be up to it. Dramatic weight loss won't help.

This is the woman who nearly burnt herself out.......I speak from experience. Living on adrenaline is fine for the odd emergency when you need to get through a crisis but it's not a recipe for good long term health.

You can only run on empty for so long.

[Deleted User] · 1 July 2018 at 6:15AM

humpty I am wishing the best for you, not knowing must be more sressful than knowing and your mind is in overdrive. Mind affects body 100% so somehow you have to get grounded so your body systems go into normal functioning

A little bit similar to when my husband died because that was completely unexpected and eg I could feel and hear my heartbeat very loud, the adrenaline which is fight or flight. Adrenaline needs to go quiet as it and its effects are incredibly damaging to the physical body. I dealt with it by buying hypnosis cds from ebay, used to listen daily and slowly my mind calmed, I could tell because my heart was no longer pounding in my ears when lying in bed. Music helped a lot, I listened to snatam kaur a lot, it put my mind into a calm mode. I bought some of her cds. There is something about the vibrations in her music that calms and uplifts the brain

https://www.youtube.com/watch?v=8bf3vpbA_s4

Try and get `what if` out of your head

poppy811 · 1 July 2018 at 9:15AM

Well I will try again as my post disappeared a couple of days ago. It is as I feared a return of breast cancer and I will need a mastectomy. There does not appear to be any spread in the axillary glands but will have to have a CT scan to confirm. Feeling very low and frightened.