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

lessonlearned

Good morning everyone

Well this grandma feels shattered this morning. I slept well but I feel almost hungover. Definitely needing my caffeine this morning.

Just briefly, further to our discussion about genetic testing, and for information which maybe some of you might useful. . My son and DIL decided to have some of the baby's stem cells harvested. Very simple and completely painless, they take them from the umbilical cord.

Whilst testing might be somewhat pointless to work as a preventative measure for my boys (because there are currently no treatments available such as pre emptive surgery etc for them) it is entirely possible that any future treatment for illnesses of this nature would involve stem cells.

Even if my boys are in the clear themselves and don't get sick there is always the possibility that they could be carriers. We just don't know. So with this in mind they have taken the precaution of harvesting their child's stem cells.

I don't know whether this is offered on the NHS in high risk babies where there is a known genetic problem but they paid for it themselves. It cost £2k.

I think it was a very wise move. It might just be the best £2k they ever spend.

Humpty hope you don't have to wait too long for your results. I can appreciate it must be nerve wracking.

wort

LL congratulations how wonderful, I can totally get you crying over hubby not being there, I teared up reading it. That's something I struggle with watching my grandson reaching landmarks or doing things without his precious grandad they had such a close relationship. Especially as his dad isn't in the picture.
I'm struggling with this enforced rest, due to the foot surgery. There's so much I could do as the weather is good and I'm not in work.

Humpty I hope the results are here soon, and they are what you want to hear.
My oldest sister is due soon, and I've managed to push the stick dyson hoover round thank goodness ,I got that it's invaluable, lightweight and no wires.
I hope everyone is well, hugs to those in need. X

Elona_2

Older dds husband is due to be away on Friday and Saturday and returning on Sunday so she is going to stay with me and bring their cat. She is not expecting anything to happen this early but just in case she will not be alone and her sister is only twenty minutes drive away.

We had a baking session yesterday and she left with the six frozen cottage pies I made earlier, a dozen bacon, egg, cheese and onion muffins, a dozen granola bars, and twenty five "Twinks". I also loaded her up with tins of chopped tomatoes, stock cubes, pasta and noodles.

Hugs to all

humptydumptybits

Had a letter from Consultant outlining what was discussed at the meeting, it was a really nice letter but he has advised me to think about what I want to do if my test is positive. Do I go the Angelina Jolie route ie double mastectomy (ovaries already gone) or regular MRI to monitor for breast cancer. I think the tests are annual and it would be MRI rather than mammograms.



On the one hand he says to consider that it is a big operation at my age (mid 60s) on the other hand it stops the worry. I am thinking the MRI's are the way to go but on the other hand if I do go on to develop breast cancer I will be even older and presumably what is a big thing to go through now would be even bigger when I'm older. Don't know what to think.


I want to just hope that the result is negative but I get his point that I need to consider my options. I'm so bad at big decisions and it just keeps going round and round in my head and then I think there might not even be a problem.

lessonlearned

Oh dear Humpty......you are being put through the wringer aren't you.

Alas only you can make the decision, but you can make it under proper advisement.

I suggest you do as much research as you can, so you fully understand the implications of your options. You need hard facts, and good science to guide you, not the opinions of others and certainly not from people who have never even met you. Our opinions will just muddy the water for you. You need clarity and knowledge now.

Do they offer some kind of genetic counselling. I'm sure when they get the results you will be invited to discuss them and ask questions but it does no harm to start reading so you have plenty of time to get your head round it all. It's as scary as hell of course but I do think that, ultimately, facing up to it something, however unpleasant, and learning as much as you can is your best weapon. Knowledge is power.

I'm not going to tell you not to worry, because clearly you are worried. It's the Waiting for test results that's often the hardest part.

Elona_2

Humpty

Have you thought of pming JackieO who has been through this years ago? Not to suggest the circumstances are the same but maybe as a sounding board. Maybe try not to think of making a "decision" but of exploring options and getting information and ideas which would put less pressure on you.

Might the tests suggest a middle option rather than the either/ or approach?

Fingers and toes crossed for you.

Unpacking an approved food order which arrived yesterday and getting dressed and sorting out kitchen ready for a grocery order which should arrive around eleven. It came in a big box which I can use to store disposable nappies in age and size order ready to give to dd. I also found some assorted colours child coat hangers and an award winning set of age related clothes dividers so they are on the way.

Hugs to all

humptydumptybits

No middleground really Elona, If I am positive for the BRCA1 mutation I have between 80 and 90% chance of getting breast cancer and then it is more likely to be both breasts.


LL the Consultant does the counselling, he is lovely and very supportive and if the news is that I have the mutation he will talk more about the two options, I think he is hoping I will know which way I want to go so he can refer me to the appropriate team.



I think I am finding it difficult in two quite separate ways.


1. I am more concerned about how to get my children, particularly daughter, tested and what their results will be and if I think about it I jump to that.
2. I actually feel it will be OK, wishful thinking I suppose but it does make it hard.


I think when it comes to it I will probably know what to think. My DIL is a doctor but I don't want to talk about it to her as she will obviously have worries about my son and their children. My DDs best friend is an oncologist, I wish I had talked to her but she is on holiday now so I might have the news before I can talk to her. I'm sure I don't have to make a set in stone decision on the day so I think I have to give myself time.


Hope the baby and DIL are doing well LL, any sign of your DD Elona, I think she has a little while to go but you never know. Horrible weather for pregnancy, mine were all winter babies but I had terrible morning sickness with one of them when it was a hot sticky summer like this, I think I spent months ,lying on the sofa feeling awful. It probably didn't go on for that long but it certainly felt like it.


I'm having my hair done today and I'm planning a shopping trip with DD. I'm not one for clothes shopping, I think it is 3 years since I bought shoes/sandals and years since I bought a dress. I lost a stone when I had shingles/post shingles pain and it looks like it is staying off. I was a comfortable 12, i.e. not tight, but now I can take my trousers off without undoing the buttons/zips and I am in danger of losing them which could be embarrassing. I think I've lost another couple of pounds due to eating lots of salads and fruit in this hot weather. So it is back to size 10s for me and I suppose a bit of shopping will distract me.

Elona_2

Hunpty

I had not realised that the percentages were so high if the tests were positive for the mutation so I can see why there might not be a middle ground as such. Once you know the results then you are on firmer ground than being in limbo as it must feel just now.

I could make two of you at the moment so I am determined to get to grips with the weight and have lost nearly a stone. I stood on my vibra platform this morning and am going to use it every day to help my legs and feet and focus my mind.

Hugs

humptydumptybits

Elona I can recommend the shingles diet, well it isn't pleasant but you do lose weight. I'm not sure how I feel about the weight loss, I think because of being ill and not having any clothes that fit it doesn't seem great but I am hoping new hair do and some clothes that fit will show me the benefits. I don't want to lose any more though.



Is the vibra platform good? I tend to get swollen feet/ankles in this weather and wondered if it would help the circulation. I really am falling apart.


You are right about the limbo, I hate uncertainty and I am actually really good at dealing with things as long as I know what I am dealing with.

Elona_2

humpty

My feet and legs swell even when it is not hot weather so I am a shambles. I found some easy pay offers on ideal world and waited for a special value easy pay in instalments deal. It is less expensive than the gadget advertised for feet and legs by former cricketer on tv but might be worth seeing if a gym had a vibra plate so you can try it out several times as it is not cheap. I am not sure if the vibrations going through your body would be bad for breast tissue so might be worth getting a medical opinion.

I think a hairdo and pampering yourself a bit like home manicure, pedicure, face mask etc should make you feel more confident and assured. I bet no one else notices how your clothes fit and it is better than having the rolls of fat that I am trying to shed. I caught sight of myself in the mirror on the vibra plate and the sight of everything wobbling and rippling was not a pretty one!

I just got self indulgent and ordered a hot air styler for myself as youngest snaffled the last one but don't feel too guilty as it was a cheap price despite being top rated on the site as it is not a well known brand.

Hugs to all