January 8, 2016 at 5:13 pm #86959darlaParticipant
Somehow I missed that last post. Thanks for bring this up as I had not heard of this before either. Yes, it would have been helpful to you had you known about it sooner. Hopefully the information you have supplied will be of some benefit to others in the UK in need of these services.
Hope you are doing OK. Take care.
Love & Hugs,
DarlaJanuary 8, 2016 at 11:47 am #86958
Thank you Marion Thanks also for all your very helpful postings. Much appreciated.
KevinDecember 12, 2015 at 7:10 pm #86957marionsModerator
Kevin….lot’s of love to you as well. I always am amazed of the kindness and caring expressed on this site and particularly from those having experienced life altering events such as what you are dealing with. Your Mom must have been proud to have raised such a fine son.
I don’t recall anyone mentioning the NHS Continuing Care programme and applaud you for bringing it to the attention of our UK members. Thank you, dear Kevin.
My heart is with you and I wish for your heart to begin healing…..one day at a time.
MarionDecember 12, 2015 at 8:31 am #86956
Dear Darla, Lainy, Melinda, Catherine, Gavin and All,
Thanks again for sharing your experiences (and sometimes those of your loved ones) with me over the last 10 months. So many beautiful, very helpful and sometimes very touching experiences, indeed. All very greatly appreciated. Thank you
As always, I have to make one very important technical and medical addendum about care arrangements in the UK (perhaps it might just be England and Wales) and accessing the National Health Service. The following will not be of interest to those living outside of the UK.
As Mum began to feel the increased effects of the bone mets in August, she was place on various opiods. My posting above recite our difficult experiences with Mum on opiods.
Three weeks prior to Mum passing, we took Mum to one of the charity/part publicly funded Hospices in North London (an amazing place) for an assessment and to see whether they would admit her.
What happened at that assessment was quite extraordinary. We were told that they had no bed space/beds to take Mum at the Hospice….and she was really in a bad way at that point. I was then informed that in Mum’s circumstances and condition that the NHS nurses at the Hospice would fasttrack Mum on to the NHS Continuing Care programme which meant that she would automatically become entitled to a place in a privately funded Care Home which would be paid for by the NHS /State.
Despite engaging with numerous medical professionals working privately and in the NHS for a period of about 20 months (following Mum’s diagnosis), not one of them had mentioned to me the existence of the NHS Continuing Care programme which is run by local NHS Health Care Commissioning Groups. There is a medical (not finances related) criteria that needs to be satisfied before the support will be granted but this support is not means tested and was free. A care home place in London now costs about £1200 per week ($1800 per week). It would have been really helpful if I had known about this earlier.
As with any carer, I am sure that my biggest concern in going through this experience was not knowing what was going to come next and how I/we were going to cope/deal with that. We are very fortunate in the UK in that we have the NHS. It would have been good, however, to have known about the NHS Continuing Care regime earlier.
Anyway….lots of love to all
Kevin xDecember 8, 2015 at 6:40 pm #86955gavinModerator
Thanks so much for sharing the pics of your mum with us all Kevin.
My best to you,
GavinDecember 7, 2015 at 10:48 am #86954middlesister1Moderator
Thank you for sharing . What a beautiful woman. Her fun character jumps out at you through the pictures.
CatherineDecember 7, 2015 at 5:12 am #86953mbachiniModerator
Your mother is beautiful!!! I so enjoyed the pictures. Thank you so much for your input on your experience. The more we know the better we are. Take care.
MelindaDecember 6, 2015 at 3:09 pm #86952lainyParticipant
Dear Kevin, First I wish to say that your Mum is Beautiful! Thank you for sharing her with us.
You are spot on about the Medications. I had the reverse situation with Teddy. While in Home Hospice he did nicely with Morphine and for his last month he was up to 350mg every 12 hours with hourly breakthrough of 150mg. That is a truckload. The day he and I decided he needed to go to a Hospice Facility is when everything changed. He spent his last 3 days there and I learned I should have kept him home. I brought him in pain FREE! The first thing they did was take him cold turkey OFF the Morphine! I never knew at the time but the poor man was not only preparing to leave us he was sent through Morph withdrawal. Long story short I sued and won for Nursing Home Neglect. Even all their records for the 3 days were bogus. The bottom line is not everyone gets this kind of pain but Caretakers need to be so vigilant!!!
The better news is that in time, I know from experience, all the bad memories will be replaced by the great ones, it does happen. I hardly even think about that anymore. Hospice is the way to go but keep watch. No one is perfect!December 6, 2015 at 2:00 pm #86951darlaParticipant
Montage came through fine. Thanks for sharing your mom’s life with us through those wonderful pictures. Really enjoyed seeing them. She was a pretty lady with a beautiful smile. Loved the one with the VW. Yes, she was not old, but a very young 72, As I too am getting to that age, I’m 67, it no longer seems old to me.
As for your comments about the pain meds, I totally agree. More care needs to be taken with this respect. Thinking back I wish I had been more aware of and vigilant of the pain meds being administered to my husband. At the time I was only concerned that he not be in pain, but do wish now that he could have been more coherent towards the end.
Take care Kevin.
DarlaDecember 6, 2015 at 12:03 pm #86950
One technical medical addendum I wish to make to my postings on here…..as I have just skimmed through them again. Mum had SIRT. For some on here SIRT has worked. For others, the experience has not been so good or quantifiable. My postings here indicate that Mum did not have a particularly beneficial experience with SIRT…but it caused her no harm and no side-effects. My brother has pointed out to me, however, that I have perhaps been too hard on the treatment. SIRT may have kept the primary tumour in the liver for Mum under control for much longer than we might have hoped and extended her life by several months. Her issues at the end were not liver related. This may have been helped by the SIRT treatment.
Mum’s main issue nearing the end was the bone mets and intermittent pain The key learning point if I wanted to share something with the community is to take very great care if/when the oncologists starts to bring palliative care doctors into the mix. Mum survived all the way through to July 2015 taking paracetamol for pain relief. Her downfall…as far as I am concerned….was with the need to take pain relief medication. Once we were trying different types of pain relief, this is when the major troubles started for us. The pain relief medication affects each and every individual in very different ways….so the key thing here is to make sure that you have 24 hour monitoring of the individual if and when diazepam or morphine (or any other side effect pain killers) are being introduced to help palliate bone mets pain. It is simply no good leaving this with the doctors (if the patient is at home) as it becomes really necessary to monitor the impact of the medication. I basically ended up altering Mum’s pain medication to keep her coherent and pain free/manageable. We apparently had one of the best palliative care doctors in the UK (Mum had private medical insurance) dishing out Mum’s pain medication….but it was if he didn’t have a clue in knowing how to get it right for Mum. So…my lasting comment is to take very great care if/when pain medication is introduced please.December 6, 2015 at 9:56 am #86949
Dear Lainy, Darla, Gavin,, Melinda, Catherine, Nancy and All,
Thank you so much for your beautiful kind words. I am sitting here sobbing again now
I am actually fine….just miss my Mum. She was my partner in crime, my inspiration, part motivator and kept me in check ….when it looked as though I was heading in the wrong direction. She was also a wise old (she would say a “young 72”) owl.
We had a family dinner on December 2 as it was Mum’s birthday. In looking back over the last 2 years….it was her remarkable bravery that stood out for all of us . She was just determined that she was not going to give up the fight. Frustrating at times….but it was the way that she decided she was going to deal with CC.
Lots of love to you all. A pic montage is hopefully attached.November 30, 2015 at 3:57 pm #86948nancyelisabettaParticipant
So sorry to hear of your loss. I too lost my mum at the beginning of October so early days for both of us. Just wanted to say I feel your pain.
Best wishes to you.
NancyNovember 30, 2015 at 10:53 am #86947middlesister1Moderator
I’m very sorry to read this post, but agree that Mum being at peace and no longer in pain are things that I hope have been bringing you some comfort. From you posts, it was so evident how much you loved her and that you did do the best anyone could hope for.
Take care of yourself and keep in touch to let us know how you are.
CatherineNovember 30, 2015 at 2:47 am #86946mbachiniModerator
I am so very sorry for the loss of your mother. Sending prayers for peace, strength and comfort for you and all of your family. Thank you so much for sharing your mother with us on the boards, hugs to you.
MelindaNovember 29, 2015 at 10:25 pm #86945gavinModerator
I am so very sorry to hear the news of your mum’s passing. Please accept my sincere condolences. I do wish that there was something that I could say to you that would help ease the pain that you feel right now and having lost my dad to this cancer I so know that pain. You did everything that you possibly could for your mum and I so know how much that would have meant to her.
This is such a tough time for you and please know that we are here for you always. My thoughts are with you and your family right now.
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