I have been on here for a while (looking after my Mum took so much of my time I barely had chance to get online at all) and I feel sorry that the reason I now write is at a time of need.
I lost my Mum 3 weeks ago to this cruel, cruel disease. It came as such a shock. She had been diagnosed with secondaries in her brain, lung and knee just over 12 months ago. In June last year she was was making fantastic progress. After radiotherapy and a 6 month course of Taxol, Avastin and Vinorelbine there were no signs of cancer in her knee, her brain tumors had reduced from 20 to 3 and tumor in her lunch was 70% smaller, but come September it was back with avengence. Her last scan showed 40 lesions in her brain. As a result her mental state deteriorated quite quickly as did her walking, talking and eating. By Christmas we were doing pretty much everything for her.
In December her oncologist recommended she start chemo again. I know the outcome and success of chemo is impossible to predict but not at any point did he suggest or lead us to believe that her life was near it’s end. She had had her first round of chemo again 2 weeks before she died. She became quite poorly after it, sickness, constipation, not wanting to eat, exhaustion and sleeping all the time etc but we assumed this was just the effects of the chemo. We spoke to the oncologist but he didn’t seem concerned. We then had a first meeting with a Macmillan nurse (the first time in 12 months her doctor had arranged this for her as we didn’t know it was available to us, a disadvantage of being treated privately) and she suggested a weeks respite for Mum in the local hospice and to allow us time to make some changes in the house to make things easier for her.
On arrival at the hospice the doctor checked Mum over and told us she was a very poorly lady and her advice was that we stopped all her medication and her insulin (she was type 1 diabetic) and allow nature to take it’s course. We asked for her to be put on a drip as she hadn’t been drinking for a couple for days and they advised against this as well at this stage. Before we knew it we were signing forms agreeing to stop her medication and DNR. 24 hours later my Mum slipped into a coma and she never regained consciousness. 4 days later she died. What a shock to us all. We knew she was poorly and that this Christmas would probably be her last but we didn’t expect she would be dead a few weeks later. We had no time to plan, I don’t think she even knew as if she did I’m sure there would have been lots she would have wanted to say to us. This I find so hard. We had no time to say proper goodbyes. I feel angry because we now know that Mum showed signs that end of life was near months ago but we had no idea. No one told us or even suggested it. We had very little support from anyone. Just an oncologist pushing for more chemo. Perhaps if we had known we could have made her last months/weeks better for her and not put her through the things we did. I feel very naive saying all this, we must have known deep down that she didn’t have long. Maybe I’m just looking for someone to blame for my Mum being taken away from me too soon.
I apologise for my essay of waffle, I just needed to get things off my chest. I just wanted to know if anyone had experienced a similar thing and if we did the right thing ‘letting nature take it’s course’.
Much love to all of you who have someone you love battling with this horrible disease, or have lost a Mum, a sister or a friend. It’s so tough on us as well feeling so helpless, but I take comfort that I am not alone and hope that I can help others too.
I really feel for you sunnybear.Its awful feeling that there could have been more you could have done.I know from your postings how much you love your mum and you did the very best you possibly could with the information you had.As I said on your other thread I lost my Mum in 2003.We also did not realise how close the end was.In fact when she was admitted to the hospice (30 miles from where I live) I asked if I should stay at my parents house to be close by,I was told “Oh no she is fine just now” An hour later they told us she didn’t have long and she passed away an hour or so later.I am not sure if I would have wanted to know the time scale earlier on in her treatment as I think it helped me to not think of it that way.I am not sure I could have coped if we had been told 3 months or something as it would have felt like a countdown.We were not in denial ,we knew deep down .like you that there was no cure.My mum certainly never asked "how long?"but again she was a nurse so may well have had more of an idea than we realised.Communication from Drs varies so much and I suppose they try and judge the families “need to know” and adjust the info to suit.Everyone is different but it is so important that you don’t beat yourself up about this.I am sure they wouldn’t have started chemo if there wasn’t any chance of it helping.Everyone is different but it is so important that you don’t beat yourself up about this.Its still very early days,and you are grieving and its easy to try and direct your anger and hurt,but sadly nothing will change.Sorry for the waffle ,just trying to say ,its natural to feel as you do but try not to dwell on the “what ifs”.
Love n hugs
(((((((((((((((((()))))))))))))))))))
Dot
xxx
Hello Sunnybear,
I am so sorry to read about your Mum’s death. I lost my dear Dad to Motor Neurone Disease last summer and a lot of what you experienced rings true with what we experienced. If we hadn’t had help from a very good palative care nurse we would never have been able to get Dad home from hospital nor prepare for his very rapid decline.
All I can say is that dotchas is right - I am sure you did the very best you could with the information available to you. Most of us are not medics and have to rely on them to advise and help with the difficult end-of -life decisions, I really think this is an area of medicine/nursing where staff require more training - I don’t mean the pallative care team (who were very good) but the ‘ordinary’ GP’s and nurses who in my experience were woefully lacking in tact and practical advice.
Take strength from the fact that your Mum died peecefully and relativly quickly. It is hard for those left behind.
best wishes
caroline
Hi there Sunnybear,
I am so sorry for your loss.
Your story bought tears to my eyes and reminded me greatly of the similarity of fate that my dad suffered… he had a brain tumour diagnosed only 3 weeks before he died. We also felt we had no time to prepare, but we did not have to endure the painfulness of stopping treatment and meds - he was never offered any. We didn’t know that we should have been expecting such a brief prognosis, and I still remain angry at the GP who told us dad had Parkinsons, and didn’t push to get him referred for a brain scan sooner.
Macmillan in my experience were useless, in that they turned up, after repeated requests on the Monday prior to my dad’s death on the following Saturday. And we did not go private, we just weren’t a priority.
I’m sure you made the best decisions you could with what information was available to you. You take advice from those people in whom you have put your trust, and you cannot berate yourself for doing that. The oncologist must have had some faith that the chemo would have assisted your mum, but you can always go back and ask him why if you need to. Your mum was in peaceful surroundings; Hospice staff are so gentle in their nursing they aim not to prolong the agony for their patient or the family. You did the right things for your mum, I’m sure she would be proud of you for coping so well.
My heart goes out to you as your pain and loss is still raw; I lost my dad almost 3 years ago, and it still hurts. It doesn’t go away, it just gets different.
I am so sottry to hear of your loss. I remember you when our mums were diagnosed first time round.
You must be devastated and I am thinking of you all.
A friend of my mums died similarly very quickly during chemo for seoncdaries which were evrywhere b then and it was a shock for all the family and friends.
Message me anytime and sending you lots of love at this terribly sad time.
Sarah xxxxxx
Dear Sunnybear,
My heart goes out to you, and to all those who have lost loved ones.
My Mum died on the 8th January this year. She had bc 15 years ago and was diagnosed with secondaries in her lungs on the 13th Dec, we had just 4 weeks. So although we knew from the start, things were not good, we never imagined things would be so fast.
I lost my sister to bc 14 years ago, we had six months to get used to the idea.
I lost my husbsnd to prostate cancer in 2009 and we had 4 years to get ready.
NEVER are we ready, please feel free to pm me if you like.
Hugs to all
Maria
PS I’ve had bc twice ( 2003 and 2010)
I am so sorry for your loss and pain. I cannot add to the very wise words written above, not having similar personal experience, but neither could I read your post without saying something.