I can only echo what Tigress has written above. You are all in my thoughts and prayers. Big hugs to you all.
Much love Sunshine 21
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What tigress said - thank you all for sharing, wishing you all peace and comfort at the end xx
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Hello lulubel1 I wondered how you were doing?
This end, I’m still grateful for a wonderful GP who is trying to get me an iron infusion, but I don’t think he will succeed. My haemoglobin is not yet low enough for a full blood transfusion . I’m anaemic now and just getting weaker and more tired and feeling generally unwell some days without being able to put a finger on it. However, I still get out when somebody takes me and my Rollator and can just drive a mile some days. Other days like today I get up and end up going back to bed just wanting to sleep my time away feeling unwell .! The weather has been wonderful which has helped many days .
I had a bit of a blow three weeks ago to discover that my local wonderful hospice that I’ve been going to for 18 months is going to close its inpatient ward in the autumn for major refurbishment and the other services that I’ve been using will move somewhere else as well although my outreach team who ring me every two weeks will still be in touch by phone. The refurbishment won’t be complete till next summer, which is way too late for me from what my oncologist told me . I think I’m onto my last 5 or 6 months . We do have another hospice 50 minutes away which if appropriate I may get to at the end but the closure of my very local one cuts down the possibility although who knows — none of us can plan exactly where we are going to have our last days! It has been a blow though as it feels like all familiarity suddenly being taken away . I know though that I shall still get care from the outreach nurses, although I may not be able to see them face-to-face.
All best wishes to you
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Been thinking of you shaw1 and wonder how you are ? This end I’m just getting more tired and weaker and often feel generally unwell and walk with a Rollator now outside but I have been able to be taken out in the lovely weather and enjoyed seeing lovely trees and flowers. My GP is being amazing though, as he says he can’t make anything any better, but he can be there to support me. A rare find of a doctor and he likes to be in touch with me every three or four weeks at least. I hope you are getting good support.
Give your lovely pussy some strokes from
me . I couldn’t have one now, but I used to find my cats most wonderful companions. Somehow they inherently love you don’t they? There are two that visit my garden, but that’s not quite the same. Best wishes Gillmary .
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Hi Gillmary
I been thinking of you. I’ve had a struggle.
I was determined to get back to my happy place. Egypt. I got pueomonia there. It was 107 degrees. Couldn’t enjoy a minute. Still very unwell. Short of breath, flu symptoms. Fat as a fool fuelled by steroids.
The end of life as l know it…
Thinking of everyone.
Xxxxxxx
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So sorry - that’s tough to get pneumonia.
Best wishes
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I’m probably not going to Post again.
I have respect and love to send you all on our journeys… my C is in seven different places… lm terrified and angry .
Please support eachother
Sending you all love healing and peace
Goodnight God bless xxxx
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Hello again
It’s been a few weeks since I logged on here, so sorry for the late response.
Been a bit manic the last couple of weeks as I have been dealing with lye stuff about my dog…going to my brother’s in Ireland. He came over for a week to really establish his relationship with my dog, who went off with him a week ago now. I was exhausted by the time my brother left, then just feeling so bad now I am alone in the house without him. The good news is that all is going well…just a few hiccups along the way but Mickey now seems settled in his new life.
My own health has deteriorated a little more. More breathlessness, chest tightness, exhaustion, etc.
My medication from the GP has been changed from liquid morphine to Lorazepam, which seems to be much better for me at the moment. I feel less spacey and a bit more in control of things.
I have had regular contact with my GP, both by phone and by surgery visits. She is amazing, as has been the regular fortnightly contact with the MacMillan Nurse, who has been so helpful in explaining and organising things. One of the most useful things she told me was that, in the last few weeks/months until the end, there is a scheme called continuing health care…what they call ‘fast track’, I believe. Apparently, without the need for referral to Social Services, there is a scheme where the care workers are free of charge and things are done very speedily re getting in support. She told me that when that time came, if she saw me really failing, she would make a referral and within 12 or 24 hours carers would be in place, as well as quick access to any equipment I might need like a profiling bed, etc.
She made a referral to the Occupational Therapist who visited yesterday with good tips and advice. She is going to bring (in about a week’s time) a bath board and a ‘perching stool’ for use in the kitchen when I need to do things and find it difficult to stand. However, I wanted to talk most to her about a stairlift…the MacMillan Nurse said that she would give advice regarding recommended companies etc. Well, this occupational therapist was amazing! She rang various companies herself, got quotes, gave the companies measurements, etc. she was with me for possibly an hour and a half. She went ‘above and beyond’, I think. If your GP hasn’t already referred you to MacMillan Nurses, then I can only suggest that you ask her/him to do so as soon as possible. They are full of useful knowledge and can help an awful lot.
Regarding your own situation, Gillmary, I wonder if a way forward, when the time comes, could be not to have a live in carer, but maybe, if you can afford it, a carer who comes to be with you at night? She would be ‘on shift’/awake’, and therefore no need to have a bedroom, etc. don’t know what that would cost, though.
Back to the stairlift. It was a lot more expensive than I thought it would be, due to me having a double bend in my stairs. That is, it would have to turn three times. I also didn’t want to buy one outright…I wanted to hire one. Apparently most companies do not hire out double bend stairlifts. However, after various phone calls made by the MacMillan nurse, one company was found, and they actually visited yesterday afternoon. The rep did measurements, etc, gave me a quote, which was reduced after a bit of negotiation…they are salespeople after all!!.. I decided to go for it there and then, as I am now having a few difficulties with the stairs. It is being installed on Thursday this week. That is another job ticked off!!
Last week my son visited from Bristol for two days, and my daughter from Wiltshire will visit this weekend for two days. Then next week my other daughter from Essex will visit with my granddaughter (she is about 13 years old. They are staying in a hotel in Manchester to do some sightseeing, and I will meet them in the evenings in town for a meal. Definately May has been a busy time for me. Next month will be quieter, I think, except that my partner and I have a holiday booked in a cottage in Somerset. Looking forward to that time of rest and relaxation.
Thinking of you lots (as well as all the others who are in our situation) and hope things are as well as can be expected.
Lulu xx
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I’ve just seen this post now, so sorry if you don’t get this message. I am 33yrs old with mets in spine, pelvis, ribs, sternum, liver and breast. A couple of months ago I was in so much pain I was on long acting and fast acting morphine, steroids, celecoxib, paracetamol and ketamine, yet still no relief and just made me depressed. I also couldn’t walk at the time.
I had some reflexology and as soon as she left my house I never touched a painkiller again! I have regular reflexology sessions and I’m now walking again. I still get pain after a long day but never take pain killers.
Reflexology is so powerful, reiki is also good for stress and emotions, acupuncture is great for pain. If you haven’t already I’d suggest trying those therapies.
Wish you all the best xxx
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Absolutely love to read this. So glad its made a positive impact. May well look into it myself @lilly-daa44
Hi
Lovely update although sad about your dog but at least you know he’s safe and going to be ok
In terms of your property adaptions don’t forget that some local authorities provide grants for house changes, for things like wet rooms and particularly for disabled adaptions. Your local citizens advice will guide you
You might also benefit from talking to a specialist independent financial adviser, there is a register through The Society of Later Life Adviser(SOLLA) who again can talk you through options to consider for home changes
0333 2020454
I hope that the lovely weather brightens your days
Take care and hugs xx
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Prayers going up for you. So sorry🙏🏽
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