Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

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All welcome, reluctantly

No, they didn't keep me in. They said I need another Spinal MRI. They tried to send me home with nothing but I begged for diazepam so I could sleep.
Yes I was at North Devon hospital.
Worried about our journey home tomorrow because I can't sit!

@sewingbees that is not acceptable at all.
I know you are reluctant to contact PALS but please do so as they are very good with things like that.
I had to contact them twice last year and they were very helpful.
They try to sort things out before it gets to the official complaint stage.

@Englishrosegarden I'm sorry to hear you are feeling so unwell.
Can you give your Oncology unit a call as the Acute Oncology team will then see you and be able to advise.
It seems a long time to wait until August.

@WrenNatsworthy that's such a shame that happened while you are on holiday.
I hope your journey home isn't too bad.

@WrenNatsworthy can you lie down in the back seat? That's how I had to travel when my back collapsed.

@Englishrosegarden sorry to hear you are feeling so down; the flushes are hideous. I'm on ribociclib and letrozole for SBC to the lung and am trialling veoza for flushes. Not yet available on the NHS, so I got in touch with a menopause specialist and she prescribed me 3 months worth. I'm hoping they something!

@WrenNatsworthy did you manage to get home ok?

Yes, had to take a diazepam but it worked. I was smashed!

@sewingbees We went down in our camper van with two teenagers in the back-'DS and his mate. We could have put the bed down and put DS's mate in the front and DS would have had to lie with me, but we thought we'd try the diazepam first and it did the trick.

Currently in my local hospital on second bag of blood - today's hb result was 53! They want me back up on Monday for fbc and cross match as they think I might need another bag.

I woke up at 5am having a sciatica spasm, took oramorph and ibuprofen and went back to sleep. Am very comfy on this gurney.

@WrenNatsworthy glad to hear you got back ok but also wondering if you managed to have your cream tea?

Unfortunately we had to cancel because I couldn't sit. By all 8 of us working together we got me into the hydropool instead. It really helped although it didn't cure.

Aren't you lovely, asking about that? Xx

@WrenNatsworthy I'm glad you got home OK but sorry you had to cancel the cream tea.

I have also found myself in hospital.
I've had a bit of a cough & cold all week but yesterday evening I started experiencing the shivers and feeling cold then that switched to sweating and unable to cool down.
I was finding it difficult to wake up and had a temperature of 38.5.
I rang Oncology helpline and they sent me to A&E.
I was spiking a temperature of 39.4 on A&E

Wow compared to last year what a different experience.
They took me straight through, got me straight on antibiotics and I had a side room reserved for me on a ward.

I'm not sure how long I'll be in but my temperature is starting to come down now.
I do have a terrible headache and fuzzy head and I'm very fatigued but I feel better than yesterday.

Hope everyone else is doing OK.

Oh no @GoldenDog1 hope the ABs kick in nice and quickly and you get home swiftly.

Both my boys have got horrible colds and DH has a chest infection so we're all sitting in different rooms and avoiding each other!

Ah GoldenDog, thats miserable. I hope you feel better soon.Did you have magic words this year or the magic yellow I Have Cancer card? Noon Sundays Ive found to be good to get straight through for major issues and its not so busy. Also if you end up staying you are furthest from the next weekends mayhem.

@WrenNatsworthy what I wouldnt do for some diazepam, just to mellow me out a bit at big pain/emotional meltdowns. But no an do, apparently too risky for becoming addicted. Mom is in the US scoping out CBD and proper dispensaries for me to give some very very light mary j products a go while Im there. I know I cant bring back anything with THC but a really good CBD rub would be awesome.

F@herbalrefreshment i wish I could give you one of mine.
It is rubbish that ill people cant get any cannabis for medical use without jumping through hoops.

@TwigTheWonderKid I hope your DH and boys are feeling better. Colds and chest infections can just make you feel miserable.

@HerbalRefreshmentt I didn't have to pull the cancer card thank goodness as someone from the Oncology helpline called ahead.
I was so relieved as A&E was packed when I arrived.
Mind you in the past I've always been made to sit in the waiting room anyway so it was a pleasant surprise that I was taken through straight away.
I wonder if there are some new guidelines?

I've been told the doctors might be late this morning because of the junior doctors strike.
Still hoping to go home but I'm not sure I will be as although I feel better than I did on Saturday my chest is still quite sore and they have gone in hard with the antibiotics which I'm still receiving by IV.
My temperature is back to normal though.

We will see.

@HerbalRefreshmentt
Not sure if you are aware but there are some excellent CBD products available here in the UK which are totally legal. Check out CBD Brothers, their oils are brilliant, I have been taking them for a couple of years. For rubs try Herbal Health, their balms are fantastic, I use them every day too. Herbal Health have a fantastic support group on facebook too with loads of help and advice.

@GoldenDog1 Good that your temperature has come down, let's hope you can go home.

@Englishrosegarden Do they have thc in them? I didn't think you could get that in this country so i shall definitely be investigating.

I'm currently hooked up to 1 of 2 bags of blood.

@Englishrosegarden oh awesome - im going to check those out! No I wasn;t aware at all, but I will definitely give some a try

@WrenNatsworthy I got a bag and some potassium yesterday as a day in-patient and it was awful. There was some mess with the blood bank and so they didnt start K until 2pm (when I was expecting to go home) or blood until 7.30 anda 3 hour drip 'for safety'. I was put on the old ward where I got stuck in April ad when they took obs at 7pm and I was just about at 38 I started crying, afraid I was going to get admitted and stuck again! The Nurse in Charge was just useless too and are Phesgo shots supposed to go into the fat at the back of the leg? I had to tell him how long to push it for too. Christ knows. Anyway, we got out of there finally by 11.30 after getting lost and having to have someone with a key card open a door and home by midnight. I got to the hospital at 9 am. I was NOT happy and Ive spent the day sleeping!

Also, I spoke to MO about my mental health and inability/highly broken sleep and she did me a mirtazapine script which Im really hoping will do the trick. I managed five hours straight sleep and no meltdown today so perhaps those are good signs. That was the longest Ive slept in probably four or five months, no wonder I wasnt coping!

Those of you considering medical cannabis, I know that mowly77 used to go

sorry...
Go here.

She said "I’ve got a prescription for medical marijuana. CBD oil and THC oil calibrated precisely for me and my needs"

Hope that helps

Oh Herbie that sounds bloody horrible. We so need our sleep. Glad it knocked you out. I'm only awake because I slept from 7pm - 11.30pm and woke up, had my meds 90 minutes late. In the meantime DH, with terrible hayfever, has fallen asleep and he is snoring really loud.

@twigthewonderkid thanks for the link dear one.

@WrenNatsworthy, anything for you. No, seriously, I am on a massive post-chemo, steroids filled-energy-bursty-high at the moment. Dreading the inevitable and massive crash by the end of the week but going with it right now. Trawling through those old posts to find that info last night kept me away from the inevitable and unnecessary internet shopping I would have otherwise have done!

@HerbalRefreshmentt that sounds bloody awful what you went through. It's just not acceptable is it and makes me feel so mad reading stuff like that.
I'm glad you have managed to get some sleep though.

I was discharged on Monday but my goodness what a cock-up all that turned out to be.
I won't go into details or I'll be here all day.
On the plus side all the ward staff were great.
Just 1 nurse who brought me a Vital shake and when I asked what for she said it had lots of vitamins and minerals in it and I could even have that instead of a meal.
I asked her why would I not have my meal as I haven't had a feeding tube in since last November and even if I did ,the shake she brought me was completely wrong lol.
Bless her though she was lovely.

My chest is still quite sore but I'm taking the antibiotics orally at home now and I do feel much better.
I didn't receive my chemo this week so that's probably helping me not feel as tired as usual.
My son gets married on Saturday so I just want to be as well as I can be for that.

Hope you are all ok x

@GoldenDog1 I am so glad you are out in time for the wedding. Let's hope rest helps that sore chest and then you'll be ŕeady to be glamorous mother of the groom.

@TwigTheWonderKid How are you doing? My last steroid was today but as it was only a short course I'm not expecting any Trainspotting style moments. I do hope you're ok.

DS had his prom last night, one of my goals. Got some gorgous photos. I fell asleep after dropping him off at school (they got coaches to the venue). Woke up at half 10 to extremely pleasing Exit Poll. Then at about 12.30pm DS and 5 friends came in having walked back via each other's houses to get changed. While DS was getting out of his suit they sat with me chatting about politics. It was so nice. Then they all went to McDonald's. Bless them.

@WrenNatsworthy I saved some steroids for the election. Stayed up until our constituency was declared at 4.45am and saw Mordant go, but just missed Rees-Mogg. Have got 2 more to take this morning then hoping I'll be ok today and tomorrow as have been given free tickets to Hampton Court Flower show tomorrow. So weird that last week I was Googling wheelchairs and this week I am full of energy.

I'm a bit knackered after staying up /dozing on the sofa to watch my local results come in. Anyone else feel a bit bittersweet that it could be the last time you vote?