Hi
Sorry to hear about your wife and the issues she has been having, my wife seems really intolerant of oramorph but the doctors always say "it will be fine" - perhaps the sick bowls say something different.
My dad had what is referred to as paradoxica reactions to some drugs the doctors would give him when he was in hospital. Sometimes it seems like the never even read the notes.
Sounds like you have pretty much got you head around the options and have been doing a lot of work on trying to trace the triggers, it can be hard when we take lots of meds so really well done.
Hope you find something that works well for you soon.
<<hugs>>
Steve
Hi there,
You are just like I was when my husband was sick - doing a lot of research and investigation, and that is very important. It was very observant and you found out when this occurs and have therefore been able to detect what was causing your wife to feel like you describe.
metachlopromide is not as effective you say. How many mg did she take before?
Best wishes
Mel
I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds.
She is on 10mg 4 hourly if required, also have injection syringes, for when it’s really bad, I now can do these myself.I really hope that changing the matrifen patches as described, will resolve a lot of he nausea ( found can get 62.5 strength so that’s better) can alternate arms maybe. She still very confused this morning, took 1/4 levomepromazine yesterday morning, before we realised the connection, should wear off by lunch time. Really need to tell the GP and get this reported if the symptoms don’t reappear over the next few weeks. Got to impress on the GP that my Wife wasn’t just having dizzy spells and play it down, the symptoms were extremely disturbing, for 2-3 days she keeps referring to people and objects that don’t exist, can’t be left alone, which means I can’t really do anything other than sit and keep a close eye on her.
I agree with your sentiments about moving forward as opposed to moving on, so much better. My Wife had breast cancer several years ago and was given full remission after intensive radio therapy and chemo treatment, but unfortunately returned as secondary breast cancer in her liver ano bones 3 years ago, she refused chemo, couldn’t do it again, was given 6 months, all she could be given was tamoxifen and denosunab injections for her bones.....her mobility is not good using a wheel chair and mobility walkers, am now her full time carer, I am so lucky she is still with me, she really is a fighter. The thing I really miss the most in our relationship is intimacy, this is now non existent, even a cuddle is out of the question as it hurts her back so much. We have slept apart for more than 2 years, as I disturb her sleep too much, but since the last episode, she was scared to sleep alone, also I was worried, so we slept together, to night will be the third day in a row, she says she getting used to sleeping with me, which is amazing. Just find it difficult laying next to the woman I love so very much and not be able to be intimate in any way whatsoever.
We have quite an usual history, we married in 1972, divorced in 1985, which was 100% due to my inability to cope with marriage and children. We both married other persons, then both divorced. In 2006 I planned to go to a charity meal and invited my ex Wife ( still unsure why I did this as contact between us was minimal ) but during that evening we realised how much we still loved each other, the atmosphere was electric, I couldn’t keep my eyes off her, we just kept talking the whole evening....things progressed from there ano on the 8th August 2008 (8,8,8) we remarried........
Take good care of yourself
Linda You are my best memory, You are all of my best memories
Thank you, yes I hope the matrifen regime change is the solution and definitely no more levomepromazine, she still really confused this morning, hopefully will ease by lunchtime, Macmillan have task DR for 62.5 patches so can change on alternate days with 1 day off
Linda You are my best memory, You are all of my best memories
Thank you for your long reply.
Yes hopefully the effect of the medication will wear off today.
And yes I think it's very important to report your observations to the GP or to any other doctor as well who is involved in her care.
It's amazing your love story and touched me very deeply to read.
And your wife seems to be a real fighter all right. How has she been living for three years with liver mets? It's really incredible, and was incredibly brave to refuse Chemo too.
Just another question for you: How often do you see oncologist and get scans? I'm just saying this because your wife's nausea could in part be related to the liver mets as well. This is just another thought. And since my husband and I got our scans during which they discovered how aggressively his cancer had spread way too late, I am always reminding people of this and say to them: get scans, get scans just in case.
I can understand how hard it must be not to have any intimacy with your wife aqnymore.
It is wonderful that you are there for her and her fulltime carer. You have very precious times together now - even though she isn't very well at the moment - that will never come again and it is very important to cherish them.
What do you do to look after yourself? Do you read or are the two of you listen to podcasts or audio books or watch TV? I am only asking because it sounds like you are in the house a lot and always with her and I'm just wondering about the self-care.
Love
Mel
I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds.
Hello
the liver cancer had internal & external tumours, oddly enough the scan before last showed the external tumours had almost vanished, maybe the tamoxifen ? But then put back on letrozole, due to blood clots on her lungs, the most recent scan showed the external tumours had returned. All a bit of a juggling act. The family wanted her to have the Chemo, but I stood by my Wife, she wanted quality of life, as it turned out, looks like was the best choice.the cancer marker they use remains stable, although from research I am not sure how reliable this is. It seems my Wife’s Oncologist has in all but name discharged my Wife, she told me and told my Wife on the phone that there is little point in further scans or investigations, as there is no further treatment available, it’s now down to Pallative symptom management by Macmillan. This made me feel sick, it felt like my Wife had been abandoned. I can see the oncologist view, but from my viewpoint I would still like to know if there is any improvement, especially considering how well she is doing.
we spend a lot of time watching Netflix, my daughter shares her subscription with us and also have Disney + shared by our grand daughter, anything I can’t find I download, we love the same movies & series, watching Bewitched, on series 3 absolutely love it, read the history of the cast and Cancer is prominent there also, seems to be everywhere you look unfortunately. We love period dramas, the crown etc. Just finished the box set of Cary grant movies, have so so many series to watch on dvd it’s untrue, fools amd horses steptoe and son, then watching Simpsons on Disney+ never short of something to watch.
Linda You are my best memory, You are all of my best memories
I can understand how upsetting it must have been to hear that it was down to palliative care now as there was nothing else that could be done going forward. A very hard thing to hear.
What are the Macmillan palliative care people saying? Is there something they could do to make the nausea go away? I am asking because, even though I am not medically trained, I have trained as an end of life doula and I know that nausea is one of the symptoms that can be managed very well with medication that wouldn't have bad side effects. Maybe it is worth asking? I don't exactly know of which medication that would be otherwise of course I would tell you.
It's good that you like the same things and so you can keep yourselves entertained with things, even though sometimes it may just be nice to be together and enjoy each other's company in silence, I don't know what the two of you are like, I just know that it was like that for my husband and me.
By the way: I'm absolutely loving "The Crown" and have watched at least four times!
If you would like to private message, please feel free to send me a friend request.
Best wishes
Mel
I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds.
I don't find the site easy to use either. May some of you other lovely people on here can help? I think it is somewhere when you klick on my name but I am not sure. Sorry. I just thought it may be helpful to be able to privately message. Perhaps you'll find a way to add me.
Love
Mel
I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds.
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