My Mum Mags

Thank you Marion Thanks also for all your very helpful postings. Much appreciated.

Big Hug

Kevin

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 x

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.