Feeling sad

FormerMember over 4 years ago

12 replies
43 subscribers
6220 views

Around the same time that I was diagnosed with inoperable skull and brain metastasis my BIL was diagnosed with Lewy Body Dementia.

My twin sister's excitement at her early retirement was short lived.

After successful gamma knife surgery my prognosis improved to 6-18 months, and since then we've had the rollercoaster of trials of different chemo/stable scans/disease progression/emergency hospital admissions, all very familiar to many of us. I'm doing better than expected, although the cancer has progressed to my liver and lungs the latest scan was encouraging.

My sister was warned that LBD is aggressive and her husband may need full time care in as little as 4 years. His rapid decline has been terrible to see as he's lost every shred of independence and no longer recognises his wife, children or grandchildren. His pathway to full time residential care was not planned but a result of an emergency admission to hospital at the beginning of the year, respite care and then the heartbreaking realisation that coming home was no longer an option.

My sister was struggling with this reality when the Care Home went into lockdown ahead of the Government Guidelines.

My BIL died peacefully at 3am, 2 years after his initial diagnosis. My sister and their 2 daughters were with him, and we are so, so thankful for that as we didn't think it would be possible. Their son is in London heading a team doing vital research on covid 19.

No one would wish to extend a life with such a cruel disease and in the months to come that will bring some comfort to the family. But it never entered my head that I would outlive him and along with the grief and sadness I feel a great deal of guilt. Survivor guilt, guilt that in these 2 years I've had a quality of life and opportunity to make precious memories that he didn't have, guilt that I can't go and be with my sister and her family.....

I'm grateful to be here for them in any way possible and need to stick around for as long as possible.

anndanv over 4 years ago

My dear On checking my emails this morning (Tues) I got notification of Daloni's reply to you which was posted yesterday! When I clicked on it I was horrified when I realised you posted on 3rd May together with lots of other replies since then and this is the first I've heard. I do apologise in turning up so late in the day but couldn't let it go without replying.

Lass Gragon tvman and indeed everyone else who replied has said it all but I wanted to add my sincere condolences to both you, your sister and her family! Siblings are very special people and I would say twins even more so. For your BIL not to recognise his family is truly a tragic situation but like the others, I'm so pleased his family were allowed to be with him in his last hours. I think for your sister & neices, I'm sure they will be ever grateful for just being there.

Gragon wrote something I could have written myself and agree with all my heart that I love this site but the drawback is loosing people who have become a friends in every sense of the word and crying a lot at these times. I like Gragon used to feel guilty about still being here when others just pass through and wondered why I was still here! Now I don't feel guilty, I feel very grateful. Within a matter of months after my dx I lost two very close friends. The first had been a friend for over 25years and in actual fact, I hesitated to tell her of my dx as I knew how upset she would be. Two months later she went in for a simple knee replacement and died of a heart attack the week after. She had lots of other medical issues and obviously wasn't strong enough for that op. The second was our neighbour of 35 years. Now you know how we sometimes joke about not knowing when we are going to die, the old saying "you could fall in front of a bus tomorrow"! Well, he literally did. He fell off his bike and fell under a bus pulling away from a bus stop and never regained consciousness. Last year his widow was dx with breast cancer and my husband and I looked after her once she had finished RT. We took her to all the coffee shops etc and she loved it! In October she got the all clear. Her daughter lives in New Zealand and she has two sons who are to put it mildly 'a waste of space'. Didn't ever visit and still don't. My husband has been getting her shopping during lockdown and I have phoned her every second day. The way I look at it is..... I'm so lucky to still be here and it is a pleasure to be able to help whenever I can. So, I no longer feel guilty. When you look at the support you, Daloni and the other CC's you must feel really good about yourselves at the end of every day and be satisfied! You will be a support for your sister and your neices now but more especially when this lockdown is finally over! Just like your sister needs you,miso do we! I hope and pray you are here for many years (not months) like Gragon, myself and a few others!

Apologies for the long post but once I get started..........stay safe & well, we are all here for you, even the late ones like me!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

FormerMember over 4 years ago in reply to anndanv

Hi anndanv,

I did have second thoughts about posting the news when so many here, yourself amongst them, are having a very difficult time. But there's so much unspoken understanding amongst this group. It's very reassuring that other people have shared some of these feelings, including the irrational and unhelpful ones.

It's become clear to me how much I'm needed at the moment, how lucky I am to be here. There's been so much distress and anxiety around my BIL's illness and care, it's been literally sucking the life out of my sister. An unexpected blessing is that we're now talking about the kind, funny, family man and not the lost soul that he became.

We've all been on the receiving end of meaningless and insincere platitudes, and that's why every reply here is so precious, thank you.