[daddiagnosedParticipant]

Hi all,

Just having a little vent, its been one of those weeks.

Dad has been in hospital since 20th August (diagnosed 23rd August), initially to get him mobile due to his spinal compression. Everytime we get close to getting him home, something comes up – an infection, poorly tummy…its so incredibly frustrating and exhausting.
Mentally, I can see he starting to struggle and I feel sure that it will be such a lift for him to come home with us – we've found a lovely new place to rent where he can live with us – his bedroom overlooks the canal and its just a very serene place to be. He tells me almost every day that he can't wait to see it 🙂
Honestly, 5 weeks into this and it feels like a lifetime already – I know we'll get through it and cope with whatever we're faced with but the last couple of days have been real toughies. And its the tough days when I start thinking about the future and I have to beat myself over the head and remember – one day at a time!!

I hope there aren't too many out there having a tough day and that its a good day for most!!

Nice cup of tea I think…

Steph

[eveParticipant]

Hi Steph

It is not that easy when a person has spinal compression,the person has to be assessed plus his needs have to be catered for.i think you need to have a good talk to the consultant,with the best will in the world ,sometimes the best place for your dad at the moment might be the hospital .

If you look at Maureen's post her husband is just about to come out of hospital after 10 months,you should find it under ,off topic.
I wish you well for the future and hope your Dad picks up enough to get home.eve

[VickiParticipant]

Hi steph,

It's not an easy situation to be in that's for sure……but tell your dad to keep his chin up! We've been there! Colin has been in remission since his sct in November 2012 but we've certainly had our share of infections and hospital visits! It does seem like a long journey that for sure, and as a supporter it's hard because you can feel so helpless…..one day at a time is the only way

Best of luck with it, your dad will soon be home 🙂

Vicki and Colin xx

[daddiagnosedParticipant]

Thanks for the messages both.

Well, we attended the first consultant appointment following cycle 1 and they are very pleased with the results. There have certainly been improvements so that gives us lots of postive vibes for the start of cycle 2!

The consultant said that he sees no reason that Dad shouldn't come home and continue the cycle from there…
And thats where my dilemma starts! Dads consultant and specialist team is at one hospital, however Dad is an inpatient at another hospital and although his specialist team see no reason for Dad to be in hospital, the other hospital are twitchy about him leaving because he had an infection during cycle 1.
I've also discussed my concerns with regard to Dad becoming depressed, and their response to this was for the staff nurse simply to ask Dad "How are you, your daughter is worried about you?" – unsurprisingly, Dad replied that he was fine and just a little bored…so the hospital have put that issue aside.
I have experience of depression and definitely see the signs – he literally lies in his private room watching the clock – won't watch TV, listen to the radio, read, do puzzles – nothing. He's turned off his phone and won't talk to anyone but me and has asked me to stop all other visitors…I don't believe those are the actions of someone who is simply bored…

So, its up and down again! Goodness me, haven't I gone on?!

Steph

[tomParticipant]

Hi Steph

I wish your dad well and though I have no experience of depression as such (I just got Peed orf Lol) am sure your dad is close if now t in it, not forgetting you will know Dad better than most so push it.
Pleased your dad is getting good results though 🙂

Tom Onwards and Upwards x

[bandityogaParticipant]

Steph

My husband Ian went through a phase of not doing anything other than watching tv. I told him the nurse was going to give him a telling off for doing nothing and he started using his tablet and listening to music. Ian had a very bad spinal compression and needed an op as his upper spine had been eaten away. Getting out of hospital on Monday after being in for 1 year and now more mobile.

Good luck with your dad.

Maureen

[andygParticipant]

Hi Steph.
When I was first diagnosed I was in and out of hospital a few times. The longest I was in was for 3 weeks, I think, because I fell and hurt my back and needed strong pain killers. I was exactly like your dad I'd lie there and just stare at the tv not watching it I couldn't even tell you what I watched, I wouldn't read or do puzzles and I ignored all visitors. I blamed it on the strong painkillers and when I was discharged, Xmas Eve, I was zombie like. I gradually reduced the dosage of the painkillers and came out of it. I now only take them vary rarely even after my recent back op I only took paracetamol or codeine tablets though I have the strong stuff to hand if it's needed.
Good luck with your Dad hopefully you can find a balance between the drugs and the pain that's not so debilitating.

Everyday is a gift
A present.

Andy x

[mhnevillParticipant]

Hi Steph

Sorry you are having such a tough time. I do feel for your dad. What treatment are they giving him for the spinal compression? I had to have an operation to remove a tumour and stabilise my spine.

My longest stay in hospital was four weeks and it seemed like a lifetime. If he can get rid of the infections it is amazing how you can cope at home with very little, or even no mobility. Hope dad gets out soon.

There is life after MM. As Andy always says, it is a case of living one day at a time.

Love.

Mavis x

[VickiParticipant]

Hi there,

Have you thought of pushing your dad/ medical team to see a psychologist? My partner went through a real phase of anxiety before sct, fear and even afterwards gets bouts of worry and anxiety. It was well worth it for him and she was a great asset, whilst he was in hospital too. Worth getting the support in before your dads depression gets worse……even though you never know it could be boredom if he has been used to being up and about

Best of luck

Vicki and Colin xx

[daddiagnosedParticipant]

Hi all,

Andy, thanks for sharing your experience – it helps to know that others go into a similar "slump". It must be SO hard being in that situation.

Mavis, Dad had 5 fractions of radiotherapy on his spine and it has worked wonders – I realise he is very lucky, it doesn't look like he'll need surgery at the moment. His mobility just 5 weeks after the radiotherapy is incredible – hes slow but down to 1 stick now.

Vicki, I've pushed the hospital quite hard the past couple of days and I have to day, they've finally taken everything on board and have been wonderful this past 48 hours. Dad doesn't acknowledge how low he is, so its tricky to get someone in to talk to him – I suspect he'll say "I'm fine" and send them away, however they're going to try and get the Macmillan nurse to "pop in" more. The physio have been going in more frequently, working him quite hard. And he came out of the bathroom yesterday to find they'd stripped his bed and didn't have anyone to make it until after lunch ;-), so he HAD to get up and have lunch in the dining room.
Despite his request for no visitors, I've actually encouraged certain people to come in. I'm already starting to see an improvement.

I guess its a learning experience for us all.

Thanks all for reading and helping – its amazing how much it helps just to get it all out there – I'm feeling much calmer today 😀

Steph xx

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