[MinParticipant]

I had to take Peter in yesterday as he was just so ill. Woke up to a hacking cough high temperature and a chest that sounded like an old man who chain smoked.
The hacking cough had burst some blood vessels in his thoat, and he had a lot of red frothy catarrh . He looked proper poorly and mouth ulcers just added to the mix.
He was booked in to get platelets but did not need them when we got there, But he did need lots of ani biotics via IV.
Today his temp is down to normal and he has had a cocktail of anti biotics. He looks as if he has aged 20years and its quite frightening to see him struggle for breath between coughs. Poor man is suffering badly from his melphalan dose and is locking in a room in the ENT department to ensure his 00.2 neutraphils are not compromised any further. When I left he was having a drip of potassium prior to which he had more platelets.
He looks like a pin cushion and bless him his hair is falling out and aggravating the cough so tomorrow I have to take in the barbers shaver thing to get it all off.

[eveParticipant]

Hi Min
So sorry to hear peter,s not doing to well,but we both know how quickly it can turn round,a few days on a drip works wonders,Slim had a feed in his neck with lots of tubes to be able to have lots of drips,with machine,s going off every five minutes,not nice at all,It must be awful having to go home and leave him there.
I hope today things start turning round,the key seems to be catch it early,you have been here before is it less frightening,or just that you know it,s something that happens and you have no control over it,and it becomes part of the course?
We go home to empty house,exhausted by the strain of everything,with so much to do,feeling you should make good use of this free time,to clean wash the dishers or iron.!!!I sit and ponder all the things,we had plans to do,and wonder will we ever get are lives back,

How is your kitchen coming along,all planned and ready to start!!!!
This is what will keep you going,plan for that future.keep in touch
love eve

[brochoParticipant]

Hi Min I have had you and Peter on my mind all day just wondered if he has had a better day today Are you looking after yourself too , I hope so love Bridget x

[BADGERParticipant]

Hello Min

So sorry to hear about Peter he is going through the mill lets hope all this leads to his second SCT you must be exhausted are you getting any help at home with dogs etc if you are at the hospital all day.He is in the right place though because a bad chest infection could lead to pnuemonia so its good the hospital have got it all in hand
Kind regards to Peter
Love Jo

[BADGERParticipant]

Hello Bridget

are you ok how did you get on at uch is the revlimid working for you
much love jo xx

[brochoParticipant]

Hi Jo got a whole bag of new painkillers yesterday at clinic , so will have to see if they work !!Hard to know what Revlimid is doing for me as my paraproteins dont tell the true story( little fibbers always read low even when myeloma is on the rampage!) I have to have frquent mri scans to see whats going on. Lucky you werent at clinic yesterday it was a nightmare – over an hour wait for bloods , 2 hours late to see Dr Yong the another 2 hours at pharmacy !!Aaaargh !!Hope its better for you next week How are you and the family ? Hope you are all well, looks like nice weather on the way for the weekend so I am looking forward to that Take care Jo love Bridget x

[MinParticipant]

Hi all
Peter is proper poorly. His cough and throat are slightly better. His breathing is laboured and raspy. He now has dreadful diaroheah
He will remain there until Monday at least. They finaly introduced reverse barrier nursing today. Apparently no one who booked him into the ENT ward bothered to tell the sister he was neutropenic. He is feeling lousy weak,cant sleep as they are doing obs every 15 minutes due to raging temperatures.
This is all new ground for Peter and I and yet another steep learning curve. But as he has been attending the day unit for the past 2 weeks for blood products and left in the day ward with emergency admissions with bad coughs it is not unexpected. I am exasperated as here I am trying to keep him away from germs and they dump him in a room with full of them.

[DaiCroParticipant]

Poor Peter and poor you too Min,

There can be no excuses for such poor care, not being flagged as neutropenic is detrimental care and someone should be held to account. The one thing Peter does not need right now is infection and they should be taking every precaution… so let's hope they can sort his neutrofils out sharpish so he can carry on with his treatment.

I will be rooting for him to get over the cough so that he can get some sleep, I know how precious that can be when you are in hospital,

Take care of yourself too, please.

Dai.

[eveParticipant]

Hi Min
How are things going with Peter and yourself,is he starting to pick up ?
Have you far to travel to hospital ,It all takes so much energy,It is suppose to be a nice day today,although its raining right now,lets hope the sun comes out,I find things all ways seem a little bit better on sunny days.
This is just to let you know,I am thinking about you,it can be a lonely place at times,it always leaves me,wondering how much the body and mind can take before we give in,so many having such a hard time at the moment,It makes you realise were your strengths lie,I try to think of it as a big learning curve,the bad thing is we do not want to be on this journey,but it does teach you so much about yourself,
Lets get to more practical things

How is that kitchen going,the only problem with on line buying is you have to be there for deliveries,hope you have someone close who can help you out with things,I was lucky a friend took my dog,but the poor thing new something was not right,mind you he did not want to come back:-P he was getting five walks a day!!

If you need any on line support you have my e mail address,not to good on phone as,quiet deaf,believe it or not it helps at hospitals,it brings other senses out,you can read faces when you ask a question!!eye contact is a wonderful thing,most people cannot do it when there telling porkies:-|

love eve

[MinParticipant]

Hi
The hospital is 7and 1/2 miles away so only a 20 minute drive in heavy traffic. The dogs well we have three labradors6 9 and nearly 13 yrs so cant really ask anyone to have responsibility for them. Fortunatly we have a massive dog flap on the garage wall so they can get out into the garden when they need to. The walking of them is actually very therapeutic and do all my thinking when walking.
He rang today to tell me he has finally had a knock out drop and slept and with it he felt much better this morning. The Dr has prescribed some mouth washes to help with the ulcers. He still has a cough They still have not got the result of his stool sample so cant treat the trots yet. Im currently boiling some eggs to take in this evening and some greenish bananas should help too.
Our son is at sea again..always is when his dad is really ill, He always comes home when he is well and cant quite understand him being ill per sae as he has never seen when he is like this. Daughter has a throat infection so has to stay home. But I am coping, thank god I don't have to work anymore as that was difficult then.
He is finally eating after 2 weeks with no food.
The kitchen is on hold I cant concentrate and have lost interest for the moment. But will sort it out when he is home Just finished a pile of ironing and now off for another walk.
Then I can sleep too.
Love MIn

[GeorginaParticipant]

Hi Min

I just wanted to say I hope Peter is feeling better soon. Take care of yourself. It is so exhausting, mentally and physically, when they aren't well.
Sending you lots of love
Georgina x

[AMcGuireParticipant]

Oh Min, bless you …. I'm just on catching up. What a rotten time you are both having! I'm so sorry for the strain you are feeling, I truly am.

Its the old catch 22 when our loved ones become ill – ill at home means lots of hands-on support to the point of exhaustion though we never complain; ill in hospital means lots of running in and out with your "bananas, eggs and pyjamas" worrying as you go hoping the professionals are caring for our loved ones in a way similar to ourselves.

From reading your posts above it appears Peter has turned a little corner, thank heavens. Slowly but surely all the wonky bits will return to near-working order again. A good sleep will help be of huge benefit to him, his tummy will settle, his mouth will repair …. just a little step at time.

Its awful watching them suffering and feeling so incredibly helpless … I think thats the worst part of being a carer for me anyhow, just stroking Johns head or hand at times and feeling completely useless (although I know he benefits from the soothing feeling), but I still feel quite inadequate.

I think you are right to put your kitchen on hold, theres just too much going on for you at the moment – best to concentrate on Peter getting well again, the kitchen can wait it certainly won't do any harm to put down one of the many balls you are juggling.

You are doing a wonderful job Min, Peter must be so incredibly proud of you. I am hundreds of miles away and just a face and name on the screen but I'm mentally cheering you both on with pom-poms and pig-tails!!

Sending you love Min, and healing light to Peter
Take care of [i]yourself[/i] too
Angelina xx

[eveParticipant]

Hi Min
It makes me so mad when I read about some of the things that go on in hospitals,but glad Peter is eating,a good sign. Its all just awaiting game hoping every day he will get a little bit better.
It will get better Min,look at us,2 months on slowly Slim is feeling better every day,and does not remember much of the bad times.At times i thought it would never happen.
I think children,some times are in denial it,s the only way they can cope with what is going on,no one wants to voice there fears in case it becomes reality.So they carry on with there busy lives,as i said Min its a lonely place.but,as you said to me,it does get better,peters just got to get over this hurdle.I agree with you about dog walking,My friend who walked my dog,says its the only thing that keeps her going,

Keep Posting love Eve

[susannahParticipant]

Hi Min so sorry to hear Peter is having a bad time in hospital, i remember when Michael was in you try and hold things together for there sake, but then you have to go home and hope they are being well cared for.I to agree about the dogs Ihave Lucy a chocolate Lab and we walk miles together Im sure people think im mad because im talking to her all the time

Take Care
Sue

[mhnevillParticipant]

Dear Min

Do hope that Peter improves soon and that he continues to manage to get some sleep in Hospital. I always think if you can sleep it helps.

God bless you both.

Mavis

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