Next Treatment Please

User

Posted 21 Jun 2019 at 08:40

Hello Devonmaid, I am wishing you all the luck in the world. I think of you often, and had noted a few things you said recently on other threads. I was hoping you would post on your thread so that I could drop in with a reply. I wish there was something else I could do except send much love. Crossing fingers and toes for your appointment on Monday. And also for some more pain relief without added side effects.

User

Posted 21 Jun 2019 at 17:44

Thinking of you both and hoping that it turns out to be nothing to do with the cancer xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jun 2019 at 16:31

Good luck for Monday, lots of hugs to you both.

Thanks Chris

User

Posted 22 Jun 2019 at 16:52

Thinking of u both xx

If life gives you lemons , then make lemonade

User

Posted 22 Jun 2019 at 18:52

Thanks for the kind thoughts my friends,

we’ve upgraded the patches to 37.5 mls of Fentanyl as of today, the additional patch takes 18 hours to work properly so still on the morphine and it’s not quite hitting the spot. There is a nasty smell at the site of the SPC but I’ve had a district nurse check it and she says it doesn’t look infected. Catheter change is Tuesday and in future they will do it more often and at home. Of course I’m worried about another dose of sepsis especially as I’m off to Bradford for work for a couple of days next week. The pain is in the hip, leg and knee, both sides now. I suspect some is the cancer spread and some is because of walking differently with the pain so putting pressure on joints. We’ve had yet another chat about me getting a Zimmer frame for him as his legs keep collapsing under him, it would be safer. Then he backtracks and says it’s probably his muscles and he will be ok.

I think I need to make an executive decision on that one.

love Devonmaid xxxx

User

Posted 22 Jun 2019 at 19:27

What a shame you are coming up here just when I am going away - you could have stayed :-(

Next time maybe?

Hope the fentanyl kicks in soon. I hardly dare ask but has John had an assessment recently from palliative care physiotherapist and / or occupational therapy team? This is the sort of thing Suzanne does for a living in Newcastle but other Trusts don't seem to offer the same service?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jun 2019 at 21:52

I’ll be up there again Lyn, I’m going to be working at the Council Offices for a couple of days and will be up again a couple more times during the summer.

I hadn’t heard of that option but I did speak to the hospice nurse on Friday and explained how things are but that was in relation to that patches so I will speak to her again next week in case there is an option there. I’ve offered to make a bedroom in the dining room but John has refused that, which is a shame because the stairs and falling down them are my greatest concern. Luckily we have two bannisters so he can hold both sides.I’d prefer to be on one floor though, shame we didn’t move to a bungalow years ago but we do love our house.

lots of love

Devonmaid xxx

User

Posted 23 Jun 2019 at 06:12

Good luck for Monday and hope the patches work.

love barbara xx

User

Posted 23 Jun 2019 at 07:49

Always thinking of you two , hope you get the pain under control

Hugs Barry

User

Posted 23 Jun 2019 at 08:22

Hello Alison,

Obviously hoping you get the pain under control but just wanted to say Mike refused a downstairs bed, wanting to keep everything as normal as possible. Double bannisters are good and were especially helpful for Mike’s mobility so fingers crossed it’s the right answer for John.

Janet, xx

User

Posted 23 Jun 2019 at 09:47

Since you've mentioned it, it's worth pointing out that things like extra banister rails, grab handles, and other mobility aids can be fitted by Social Services in many cases where there's a need, in order to be able to stay living at home. These can make an enormous difference to the persons confidence (and safety). They can also fit an external keysafe so that emergency workers and health visitors/carers can gain entry, and the firebrigade will keep a record that the house has a restricted mobility person living there, and where in the house they are likely to be in the event that emergency evacuation is required.

User

Posted 23 Jun 2019 at 20:24

Thanks Andy

Good points, we had a keysafe installed when John got sepsis and we are attached to Home Line so he can call them using his necklace. We have most of the usual aids now, am planning to get a zimmer and maybe a wheelchair as his knee is very painful now. I don’t know what’s causing that, maybe just knock on from the hip and leg issues. The double bannisters were installed a few years ago to help get upstairs and they are brilliant. New patch has kicked in so it’s helped a bit but we are not free of the hip pain yet, I will be speaking to the hospice tomorrow for further advice after oncology.

i heard today that one of our longtime forum members has passed away last Friday. I wish I could remember his forum name. I shall look at the old posts and find it. Broke my heart, we began our journeys around the same time, so so sad.

love Devonmaid

User

Posted 24 Jun 2019 at 07:00

Hi,

Hope today goes well for you both.

Steve x

User

Posted 27 Jun 2019 at 12:45

Hi all

well the PSA has risen as expected, not massive but enough along with the serious increase in pain to warrant scans. CT today and bone scan next week then back on 22nd to oncology for an update. Patches have been increased again to 50ml and still needing morphine so it’s not great.

I’ve never been quite sure if John should walk with this pain or not, given that it’s inside his hip and pelvis, that’s something I still don’t really know but I do know that he can walk a little before it gets too intense.

So, once again we wait for the dreaded scans and results. Always keeping cheerful (hubby that is) he is so brave, I’m proud of his lovely temperament and the way he has dealt with this to date.

lots of love

Devonmaid xxxx

User

Posted 27 Jun 2019 at 16:56

good luck with the scans and next next oncology appt, tony is having a scan on Monday and oncology on 24th. Hope the extra patches help the pain. all the best

barbara x

User

Posted 02 Jul 2019 at 18:33

Thanks Barbara and good luck to you too.

I’ve just experienced an episode of crying from John, my heart is breaking seeing him laid so low, he seems at the end of his tether. Thank goodness our hospice nurse is back at work tomorrow, I really need her right now. Emotional support for my love, so strong and now so weak, is much needed.

Love Devonmaid xxxx

User

Posted 02 Jul 2019 at 18:55

Sending wishes and thinking of you both x

If life gives you lemons , then make lemonade

User

Posted 02 Jul 2019 at 19:22

Thinking of you both - it breaks my heart to read of some of the hard times all our men have to go through. Tears are never far away but it hurts I know. Sending prayers.

User

Posted 02 Jul 2019 at 19:59

Thoughts are with you both, it is so hard to stay strong and hold it all together when all you want to do is break down and cry with them, I hope you get the emotional help that is so needed from the hospice nurse.

Big hugs to you

love Barbara xx

User

Posted 02 Jul 2019 at 21:18

Virtual (((((((((HUGS)))))))))) sent to both of you

Bri xx

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