Reality check 3

FormerMember over 3 years ago

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52 subscribers
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Just as we thought we'd caught up with all the changes in the last 3 months they've changed again.

I had a second assessment with the palliative care team on Friday & the Consultant said there was a significant difference in a week. My OH has been struggling to manage.

I'm losing my upper body strength which makes transfers very challenging and sometimes feel unsafe. I've now got a hospital bed in the therapy room, commode and a bath lift. I'm going to have 2 carers for an hour in the morning and evening and can also have help with a bath 2 or 3 times a week. I haven't managed to get on top of the pain since Friday and it's so draining. The amitriptyline is being increased slowly so I'm still on a very low dose & knocking back the oramorphine every couple of hours.

My sister and I have cancelled our week in Scotland in early June. I'm heartbroken and relieved in equal measure. The travelling alone would be a huge challenge and a remote Scottish Island not a good place for me now.

I'm not ready. You'd think by now I would have learned to expect the unexpected but I would just like more time to spend with family and friends.

So, just need to sort out pain control and make the most of this lovely therapy room. I've got this. xx

ruthjp over 3 years ago

Thank you for updating us we do like to know how you are even if it is not good news.

I had to cancel a holiday once due to uncontrolled pain in my back and I couldn’t walk but made the decision because I knew I wouldn’t be able to cope. My holiday was in a small village in Kefalonia with no doctor nearby.

I did make it there the following year.

I hope they can help you more with the pain relief. I was given amitriptyline once for nerve pain and it did make me sleepy. Then all the drugs do. I take oramorph and that sends off into a nice sleep. though it takes 30 mins to work.I find I need 10 mgs 5 is not enough.

you have got good facilities at home and I hope the morning and evening help is enough.

love Ruth xxx

Ruth

WishingWell.46 over 3 years ago

Sorry to read your sad news. Take care.

ownedbystaffies over 3 years ago

Hi @Tinalay,

So sorry that things are changing so quickly for you. Good that you are able to get help from carers and that will help your OH too.Really hope the palliative team can get on top of the pain for you, and that leaves you freer to interact with family and friends. Pain gets in the way. The loss of the trip to Scotland is a shame,but you are right to be honest about what it would have taken out of you. Conserving your strength for what is important to you now, is what matters

Rosethorns over 3 years ago

So sorry for you. This illness always gets in the way of our plans, but once we are sorted we can try again.

Sorry to hear about your pain hope you get it sorted soon. Your therapy room sounds great, all the things we need.

love

Rose

FormerMember over 3 years ago in reply to Rosethorns

Reality check update...

just as we thought we’d got everything back on track we were served a cross ball and I started seizing. Someone called 999 and the ambulance was here in under 10 minutes. They were very keen to taken me to hospital as there are no hospice beds available but I resisted, the acute admissions ward has such a high turnover & I’m not sure I’d ever get back out.
I needed oxygen & they only agreed to let me stay at home if I could maintain saturations of 94 & above, they were 83 when they first got here.
So, a very quiet day with the full support of family & the carers, I feel like I’ve dodged a bullet. I’ve promised to follow any more advice if it makes life easier for any one of the team.

The episode was triggered by unbearable pain it felt like my back was breaking. I’ve lost a few more days to it but once again am getting back on track.

I think I’ve lost another life but as they say, it ain’t over till the fat lady sings Wish me luck!!! xx

Norberry over 3 years ago in reply to FormerMember

Was thinking about you today Tinalay and wondering whether to ask for an update, well, we've certainly got that.

That all sounds horrendous but at least another plan in position. All the luck I can muster for you, you are a poor sausage as my Mum would say!

Let's hope you get a breather from the pain. Xxxxxxxxxx

ruthjp over 3 years ago in reply to FormerMember

Good you got such quick attention.

frightening have been frightening for you all.

very wise to stay home I refused for mum to fo to hospital a few times and not regretted it , all the hanging around is not good.
I hope your pain can be sorted soon xxx

Ruth

tvman over 3 years ago in reply to FormerMember

, I wish you lots of luck. I know what my pain level is when my back feels like breaking, several times a day. At least my back has some respite when I sit down. It's bad these days when I'm working in the garden.

Horrendous.

Tvman xx

Love life and family.

Popgate over 3 years ago in reply to FormerMember

I really hope they sort you out with the pain you are having I think you have a brill attitude to your situation and you stay strong girl you are a fighter and you are so right it ain't over till the fat lady sings!!!loads of love and hugs xxxxxxxx

Flippen

FormerMember over 3 years ago in reply to FormerMember

Check the doses you are taking for your oramorph and up it if you can. I have struggled for years with a bad back and now this CAV chemo puts me in agony as one of the side effects of one of the drugs is to form crystals in your bladder. My son phoned my team and insisted that something be done as I’m losing 10 days every cycle cos I’m in so much pain. They upped my oramorph dose and that has helped a lot. In the leaflet it says you can have 2 lots of 5ml. Personally I wouldn’t cos I would be asleep all the time but for when it is really bad its an option. I was on 2.5 ml which was doing absolutely nothing! Hope you can get it sorted Tina - pain is an awful thing xx. Much love xx. Maz