Devastating News

thomasross20

3:51am-

She's getting a second injection.....  
12.5ml total so far (2 x 5mg shots), and it's the first time she's taken the stuff.
I hope this is just a blip... Dear God, house move next week!
Should hopefully get in touch with District nurse ....

thomasross20

4:51am:

Back home with instructions to re-administer morphine at 8.30am then contact GP about pain relief and district nurse meet. Sheena struggled to get up the stairs, on anti-sickness.
This log is really helpful as I can be forgetful... Reminds me what happened and at what time

richardhomer

Jeez Tom - wishing you both the best. 

thomasross20

Thanks! 
Like I say, writing here as a sort of diary so one day I can look back and read this.. and also helps remember things in short-term. Sorry for bumping this one to the top all the time - it's just a really handy way of noting everything down and with time stamps to boot.

District nurse, who does the physical care, will get in touch at some point. 

Doctor says keep taking 2 - 3.5 mg liquid morphine every 2-3 hours as and when needed for a few days (eek - it's had no effect so far so hope she's not in agonising pain again) which will help them with a pain relief plan (likely morphine tablets). 

Sheena agreed with me... we've still got to meet these district nurses (who may be great) but Marie Curie was actually very re-assuring (NHS24 takes TIME...) and she's leaning more toward that in future if needed. Felt like we were in a medical no-man's land last night waiting on the end of a phone and 3.5 hours until anything proper got done. 

tone1

Like many here, I'm reading all your posts and not knowing what to post myself but reading nonetheless and only imagining what you're both experiencing.
One thing that strikes me is that you need to take care of yourself or let others look after you where you can. Accept any form of help, however small.
Take Care, sending good vibrations as always...

guitarfishbay

Stay strong.  Hoping suitable pain relief gets sorted soon for Sheena to be comfortable

thomasross20

  
You're totally right, I don't know if it's my Skoda (!!!) or recent events but my back is on fire and I'm not good myself.. hopefully district nurses can take the load off, but there's nothing for it but to soldier on. 

OK! District nurse coming out this morning. Prescribing her a wheelchair as house move coming up. 

RocknRollDave

tone1 said:

Like many here, I'm reading all your posts and not knowing what to post myself but reading nonetheless and only imagining what you're both experiencing.

Just wanted to echo this sentiment.

Cabicular

Hey Thomas
read back one of the earlier PMs I send you because you are there now
start keeping records 
medication quantities types and times and a pain diary too
seems a lot of hassle but trust me, it'll pay dividends for Sheena if she has another emergency
I feel for you mate
let me know if you need anything.

thomasross20

I'll check that thanks - pain diary on the go as of this morning

Jalapeno

Vibes sent - wish there was something more we could do .......

Snap

thomasross20 said:

  
You're totally right, I don't know if it's my Skoda (!!!) or recent events but my back is on fire and I'm not good myself.. hopefully district nurses can take the load off, but there's nothing for it but to soldier on. 

hi Tom,

It just be that you are totally jiggered mate. Bloody hell, anyone would be in your situation. It will be hard as you will want to toally focus on Sheena, but you need to keep an eye on yourself. everyone has their limits and it sounds like your body is telling you something!

take vitamins and maybe echinacea tabs - great for boosting your immune system.

thomasross20

Actually vitamins sounds a good idea. Never get any sun here  
Been on the phone all morning! 
Going to take up peoples' offers of help.. they can help us boxing stuff up

DrCornelius

I don't comment on this thread but check it regularly hoping for a bit of good news, hoping you've had a nice weekend spent together things like that. I really feel for you both as it sounds really difficult at the moment but I must say you are one strong mother@u%ker . In your shoes my Mrs would have to give me the morphine. Keep going mate

thomasross20

I bet most people would do the same in my shoes. 

Just sorted home insurance.. went for directline PLUS which includes travel insurance and emergency cover for an extra £80... But I get a 2-year warranty on new-build so not sure if I'm paying twice for the same thing.. effectively only £60 extra as travel insurance usually only £20.

Also ordered a lampshade (lol) and packed up half the kitchen! 

District nurses came, they were good. Got another painkiller for her "stabbing" pains which may or may not mean less morphine. It's trial and error time for a few days until we get dosages right. They will assess the new home for rails etc that are needed.

Next week will be mega.
Need to snag the place, check the flooring, put up curtain poles, change address, do the removal (Luton van!) - sheena's not allowed to be there to remove stress, I have 6 others helping. 

Can't wait for bed tonight!! 

guitars4you

RocknRollDave said:

tone1 said:

Like many here, I'm reading all your posts and not knowing what to post myself but reading nonetheless and only imagining what you're both experiencing.

Just wanted to echo this sentiment.

I would guess most of us are similar with regard to this - Stay strong

Guitar_Slinger

Jalapeno said:

Vibes sent - wish there was something more we could do .......

+1

TheBlueWolf

guitars4you said:

RocknRollDave said:

tone1 said:

Like many here, I'm reading all your posts and not knowing what to post myself but reading nonetheless and only imagining what you're both experiencing.

Just wanted to echo this sentiment.

I would guess most of us are similar with regard to this - Stay strong

Likewise

Going through what you are and staying mostly level headed is a credit to your strength of character Tommy and I'm often genuinely at a loss for words as I'd have been a gibbering wreck long before now. 

You're a legend and I wanted to tell you that. Stay strong and let everyone here know if you need anything

thomasross20

Sorry not been on in ages.

In summary, moved house and never been so busy in my life!! Been "hammering" it DIY-wise so it's practically in live-in condition now with only a few tasks outstanding. Waiting on Virgin for internet which is also why I've been out of touch. Maybe a good thing as re-connecting with my acoustic in last few days now I have a little time.

Several very long and scary A&E trips, one of which where we thought it was the end, no joke. She's on steroids now which is helping big time with the pain. Before that she'd started on morphine and we'd met the nurses involved. Doc is now trying to wean her off the steroids - they are causing her a lot of weight gain, toilet problems etc. She wanted to go abroad again but agrees it's a risky step too far, so will do short Scotland trips. She's been away on trips with sisters and friends which is good for them all.

Still torturing myself regarding when to take that block of time off, worst case never forgiving myself if it's too late. Got 7 holidays left and using 4 for trip to Arran mid-August.

Sheena has had CT scan results back showing the tumours haven't spread (great news - doctor thought they had..) yet the liver tumours are now larger, which is to be expected. Says 2/3 of the liver can be contaminated and still live life... But we don't have any further update on time left... It's been 6 months since terminal diagnosis in Feb...

Trying to catch up on some sleep as been walking around like a zombie! Time now to leave the little tasks alone and sit down together and just "be" together.

You find out who people really are in times like this. Some good, some disappointing. Her own son is barely in touch and it hurts her. Friends of mine pay lip service to support. On the whole, people really pull through and are good.

The house is really lovely and it will be the forever home for the girls and get passed onto them when I'm gone. It will be a strange and large space when Sheena isn't here. If she can get a hospice space if/when it's needed she's said she wants that instead of the girls seeing her in a hospital bed in the house. She drives past the hospice on the way to her sisters and tells me she thinks "that's the place where I'm going to die." 

Right, time for some zzz's

Strangefan

Inspiring tom, my thoughts are 100% with you.