[eveParticipant]

Hi
Well Friday bloods,Monday bloods Tuesday Platelets early hours took Slim to hospital temp39.Kept in Let out Wednesday evening.Good News Neuts 3.5 Platelets 57. Day off today,back Friday for bloods.:-P
Seems he was constipated !!!,thought i was keeping a good eye on that one!!!,I think part of problem is spending so much time at hospital,there is no routine for drinks food,and bowel movements.I feel just as exhausted as Slim.
Hoping this is the turning point,will see tomorrow:-D 🙂
Hope everyone is well Love Eve

[DaiCroParticipant]

Hi Eve,

I agree with you about hospital days… they really throw your routines out of kilter. I have quite a fixed routine at home, with flexibility when visiting but the hospital can turn you around in an hour or so or keep you for half a day. 😉

[quote]Good News Neuts 3.5 Platelets 57.[/quote] Good? Superb you mean. It certainly looks like Slim's reboot is working and working well… his Nuets are better than mine and Keith's already and his platelets are climbing prodigiously… go Slim! 😎

Turning point? He's plate spinning! 😀

Smile girl… and don't take any nonsense.:-)

Dai.

[eveParticipant]

Hi Dai

Now you know what his hospital is like:-P :'-( >:-(
1 hr to get there and park!!!we are like a piece of the furniture in the waiting room lol,
I watch all these new people starting treatment,and they just do not have a clue how much time they will spend in waiting rooms.
Its not the nurses fault they are just so over whelmed,some of them look as exhausted as me:-P
I consider Slim is an officially an institutionalised patient,its a wonder they do not give badges out,just to prove,another one bites the dust.Mind you it did take 18 months and he occasionally rebels.

Its the nurses who get all the flack,and there own managers in truth do not give a dam,and they are very aware its the patient who suffers.

A good example was Tuesdays treatment told to come in for 3pm,platelets came up at 4.14pm,So started off at 2pm and got home at 6pm.Platelets is a 20 min treatment!!!
OH dear have to get my soap box out again.So sorry Eve.:-)

[tomParticipant]

Hi Eve and Slim

Hope all goes well Today and your in and Out like a Banshee? but to be honest I dont know how fast a banshee is Lol.

And Eve you must not forget to rest also, treat Slim like a Kid sleep when they do Lol8-)

Love to you Both

Tom "Onwards and Upwards" xxx

[eveParticipant]

Tom
We went very early,in and out in no time,they will phone this afternoon,if treatment needed,but I think we have turned the corner.8-) 😀 🙂

Slim is not trying to rush his recovery,enjoyed being out to day,but knows he is trying to run before he can walk:-P

So with a little bit of luck it will be bloods only.Love Eve

[VickiParticipant]

Hey eve ,

Please to hear that things are on the up for you and Slim. Glad to hear that the bloods are on the up. I love Dai's phrase, rebooting the system! Sounds less scary that SCT. Hope everything continues in the same vein. Colin had the second bone marrow aspirate today because the other one last week wasn't a good enough sample. He said it was excruciating. I took him to the hospital and hate leaving him for that as I know he hates it. Tell Slim not to run before he can walk but is that a man thing? 🙂

Vicki

[eveParticipant]

Hi Vicky

I think it is a man thing,but without meaning too you do as a carer tend to take over most things, It is there body. I suppose it,s just instincts to want to help and make them get better.
So he becomes the stubborn grumpy old man,and I become the nagging,fussing old lady.[it,s a very fine line]
Slim has an ally in Tom,but I think Tom would agree we women might fuss but we tend to be right about most things lol .Love Eve

[tomParticipant]

Hey Eve and Slim

How did it go? did you get a phone call yesterday afternoon? or is all OK 😀

And yes Vicki Eve Knows am with Slimm all the way 😀 but am Man enough to know that the Carers (awful word that:'-( ) know whats best for us MM folks, my Old Woman (elaine) and Sons all take over when they are with me :-0 so am pleased when am left alone (not too often though lol) then I do what needs doing before the kids spot it and come round with tools in hand.

But where would I and other MM'ers be without the love and care we get from our Family and Friends Online also.

Sun shinning now 😎 have a good un

Love
Tom "Onwards and Upwards" xx

[GillParticipant]

I am so pleased that Slim is a little better . Stephen had platelets too it seemed to be the norm. I know that I get boring with my home spun ideas (couldn't spell phylosophy) but food is best served very little and often. Served on a tea plate it gives the illusion of tiny and doesn't overwhelm I am sure that Slim will go from strength to strength .

Big PS to Tom a Banshee does not run. She is little in a long nightgown with very long hair. She sits on the outside of your windowsill, wails and combs her hair. If you look at her she throws her comb at you. If it hits you BANG your dead

And I'm only one quarter Irish:-)

Love from Gill xxx

[eveParticipant]

Hi Gill
I did not know what a banshee was either,heard the saying!!!!:-)made me laugh

Gill I know I am over the top when it comes to Slims eating,years ago he ate like a horse,but he is down to 61.8 k my daughters are all going on diets to stay below his weight.LOL.
For every ounce he looses I gain,I eat to keep him company,because eating is no pleasure,no taste buds at all,cleared the fridge out,and threw so many little pots of different thing away.
He does try,mornings are best by the evening had enough,
His platelets seem to be holding as no phone call from hospital,and I did not phone,as they would not do anything until Monday anyway.we are back there for bloods Monday.

It does seem if I nag him all the time,about food and fluids,has had extra fluids twice,plus blood plus about 5 units of platelets since leaving Kings.

How are Stephen and you doing,???? Love Eve

[HelenParticipant]

Hi Eve
I remember feeling that I would never be able to eat anything again last September.
Everything was an effort and I lost an awful lot of weight. I've lived mostly on special k, bread and butter, chicken and broccoli with chocolate and shortbread since. I also ate soup every day as it was a way to get fluid in as well. I was also very horrible to people when they asked what I'd like to eat because I could not tell them. I'd get very cross that they could not understand how hard making a decision about food was. If I chose something at midday it did not mean I would actually want to eat it later. Childishly I even found myself resenting them for being able to eat and their concern felt as though they were rubbing it in. I behaved so badly.:-0 After a week or so after I came out I took over the catering again but often didn't eat what I'd cooked. I did make sure there was always lots of stuff in the fridge and tried to have something at every meal time but it was about 5 months before I was eating properly.
I am sorely reminded about it now since this tummy bug I've had has sent my appetite into a nose dive! I think you are just going to have to grit your teeth, serve several dishes at each meal, tapas style and let him pick and chose what he wants for himself. I've read your previous, small helpings advice and small plates etc, no offence but I would have hated that. I'm a grown up and I want a grown up plate, it's hard being an invalid, needy and helpless. You lose your sense of self and hate yourself for burdening the people you love the most with this illness, then you add insult to injury by being grossly ill while you have the treatment. It is hard for me to write about this because I was such a bad patient, and I feel very guilty for afflicting my family with it. Hope I've explained a bit more about some of the feelings I had as a patient. Keep going with your grand job, Slim ( like myself and others) is so lucky to have someone who loves him so much looking out for him,
Love Helen

[tomParticipant]

Hey Eve and Slim

One Banshee here but this one is " short fat and bald and wears No long nightie" but has had its moment of the comb throwing but thats cos am Baldish Lol

Pleased you never got that call 😀 looks lie its on the up 😎

Stay Strong and Catch you lata

Love

Tom "Onwards and Upwards" xx

[eveParticipant]

Well its the early hours of Friday morning,and Slim is wide awake,so I am up,with a nice cup of tea.:-)
NO Platelets this week8-)Monday bloods,Thursday a hospital visit we did not expect,Slim could hardly walk,had to be checked out for DVT,went through GP who sent us to a different hospital.All was ok,
Today it,s bloods nice and early so with a bit of luck,should be in and out,and hope we do not have to go back.
Helen just wish I could see Slim gaining weight:-(
Tom think Slims turning into one only he is skinny and bald,he,s a bit down at the moment,so bad tempered with it,keep telling him it will take time to feel better,with his legs playing up he cannot get out for any length of time,and he is an out door man,hates to be indoors.Love Eve

[HelenParticipant]

Hi Eve
I know it is hard, it is a measure of your love that you care so much. I've never gone back to my pre transplant weight and lost several kilos last week, I'm very aware of my family subtly offering chocolate and scones etc which I just don't feel like eating. 🙁 As long as he has the fluids and enjoys what he does eat then it will gradually improve. It was several months as I say, before I was eating more than a few mouthfuls at each meal. Don't forget, it takes time for the new cells lining the gut to repair and reorganise themselves to normal again. Can't rush convalescense.
Love Helen

[tomParticipant]

Hi Eve

Well I lost lots of weight and it stayed off for MONTHS but it came back and has been slowly climbing to above my pre MM weight 🙂 but I am told by my Dr that it would help if I lost a little bit (and here is him sat with a belly as big as mine lol) (((nearly)))

Small plates and steady as Slim goes no rush it will come back Trust me am a MM man 🙂 xxx

Love

Tom "Onwards and Fater Upwards" xx

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