[daddiagnosedParticipant]

Hi Illona,

Welcome – if thats the right word 🙂 .

I'm sorry to hear about your dad's diagnosis but you've found the right place for support, advice and generally just getting it all out when it gets too much.

My dad was admitted to hospital just over 8 weeks ago and diagnosed shortly after – hes still there unfortunately 🙁 .
Its astonishing how many of the same symptoms and wrong diagnoses appear on here – so much of your story resonates with me and I'm sure, many others on here.

You're doing the right thing by gathering as much information as you can – I'm sure it will be an enormous help to your mum and especially dad if he gets to a point where he wants to know a little more about whats going on.

All the best to you all – I wish you all the strength and patience that you will need to fight this thing 🙂

Steph

[daddiagnosedParticipant]

Hi Sue,

Everything I've read and been told says that Revlimid should be taken at night as it is a known and common side effect that it makes you sleepy – my father has his at bedtime. I wonder if you could speak to the hospital to ask if you can move it to night?

Steph

[daddiagnosedParticipant]

Hi Rebecca,

Thanks for the tip – I'll ask about it at the hospital later.

On the weekend, I spoke to my mother in law who is a nurse. She says that many years ago, when she worked at Harley Street with heart surgery patients (hiccups is apparently a common side effect of heart surgery!), they used milk with a pinch of black pepper for patients with hiccups – that must be worth a try 😀

Steph

[daddiagnosedParticipant]

Hi there,

I really feel for your situation – I'm at the start of the journey with my dad having been diagnosed 7 weeks ago – so I know you must be so exhausted with it.
I really don't think you should feel bad for wishing for your old life – I suspect every single person in your situation must do the same sometimes.
You absolutely must make time for yourself and for seeing friends and trying to have some normality away from the MM bubble. Its easy to say, but you have no reason to feel guilty – I'm sure you are a better person and more able to support your husband by having a little respite for yourself.

Look after and be kind to yourself – we're all allowed to feel sorry for ourselves sometimes 🙂
Steph xx

[daddiagnosedParticipant]

Hi Maureen,

That does sound like fantastic news, you must be thrilled 🙂

I'd be interested to know what is involved in the home visit?

All the best,

Steph

[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

[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

[daddiagnosedParticipant]

Oh Angie, I'm so sad for your loss but happy that you are doing positive things and channelling your pain into helping others fight.

My Dad was diagnosed with MM in August, so our fight is just starting out but it warms my heart that you are still fighting for others in your mums name – I'm certain your mum would be incredibly proud.

I'm donating the money I would usually spend on coffee and a cake this weekend to Macmillan and Myeloma UK and will be encouraging all my friends to do the same.

All the very best 😀

Steph

[daddiagnosedParticipant]

Thanks for the replies everyone – its a huge help when I can say to him;

"I know its horrible and frustrating, BUT you aren't alone and this does happen to others…"

Thanks for the tip Dave, I'll pass that one on. We're meeting his consultant on Monday (postponed from yesterday because Dad has a poorly tummy 🙁 ), so I'll bring it up with him.

Scott, hopefully Dad's future cycles might not be so bad, as in your case. I did smile at your champagne reference – you'll have to ask if that can be prescribed too!

Thanks 😀

Steph

[daddiagnosedParticipant]

Hi all,

Thanks for the lovely welcome, its comforting to know there is a place to look for support and advice.

Dad is doing pretty well, his mobility is improving and I suspect he'll be coming home this week or next.

Eve – thanks for the advice, I've followed through with your idea of keeping a monthly log which will hopefully allow us to monitor things more closely.
Vicki – thanks for sharing yours and Colin's experience – its a huge boost to read about the potential of this treatment pathway.
Gill – I love your term "Dexatude" and will make Dad laugh with that one!
Peter – Thanks for sharing, you seem incredibly positive. I don't know if it will help you, but almost the worst things about Dad's mood swings with the Dex is when he beats himself up about being a grump – I can deal with the moods, its a small price to pay to think that this will hopefully be helping to make him better.

Steph

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