[jmsmythParticipant]

Hi everyone

Got a call this morning to say Frank can come home. Platelets and potassium are still low. When I heard that he was coming home and not going back I was over the moon. Started to get clothes together and then it hit me. Has anyone else felt this – I felt so scared and was physically sick!! I picked him up with a suitcase of medicines and said goodbye to the staff – I couldn't believe myself I felt very emotional. When coming down in the lift – hope this doesn't sound selfish – but I realised that i had just left all my support back there. He is so weak. He tried to get up the stairs but just couldn't make it. Think maybe will have to get a bed made up downstairs. Now the long haul begins 🙂

I want to thank you all for your support in getting us through the SCT. I would have went mad if it wasn't for this forum. THANKS ONE AND ALL

Take care
Love Jean xx

[meganjaneParticipant]

Hello Jean,

You are not being selfish at all. As much as I wanted Phil home it is a big responsibility to take on when suddenly it is just the two of you without all the back up of the nurses and doctors on the ward. Just take it one day at a time and don't worry too much (easier said than done!). Phil came home on a Wednesday so I took the Thursday off work but I had to go back on the Friday, I worried constantly the whole day but he was fine. For the first couple of weeks Phil did a lot of sleeping but then gradually regained his strength. Now, three months on, he has spent quite a few hours today sawing wood in the sunshine. It takes time but Frank will improve and the most important thing for the first month or so is to try and avoid germs while his system is re-booting itself. Also try and look after yourself as well, it is hard work being worried all the time and it does take it out of you, you may not realise it at the time because you are getting through the day on adrenaline but you need to stay well rested so you stay healthy as well.

Welcome home Frank 😀

Megan

[DaiCroParticipant]

Welcome home Frank indeed. 😎

You are not on your own regarding that feeling of fear Jean… Janet had it too and in a way so did I. Don't get me wrong, I was glad to leave hospital and get home but I was aware it was just the 2 of us with me as weak as a kitten and with a long, slow recovery ahead of us.

I get a small version of that same feeling every time I come out following an infection. You are so conscious of the support and resources available to you while in hospital and the vulnerability of being at home when things start to go awry.

But you have Frank home now and each week will show a marked improvement as long s he takes it nice and slow and easy.

I didn't have Frank's problem with the stairs… but then again I live in a bungalow. :-0 😉

You could always ask your GP to organise a drop in from the District Nurses for the first few weeks… they are worth their weight in gold.

Enjoy the release and each other's company.

Much love and regards 🙂

Dai.

[eveParticipant]

Hi Jean and also you Frank.

You so look forward to coming home,then it flops and becomes scary,no support .!!!! We all had it Jean,but your an old hand now,Frank will go in for blood checks,any problems, will be picked up only when they are completely happy with him,concerning bloods and platelets,it will become less visits for hospital. The old rules still apply if he gets a temperature. Or is unwell,straight to A&E .
It's easy for me to say,but at the time I was just as scared as you.Sending you the best wishers for a speedy recovery and a good recovery,but do remember it is like major surgery in the bloods and it takes an awful long time to recover.
Love Eve

[jmsmythParticipant]

Dear Mega, Dai and Eve

Thanks for your replies. I have Re read other post and what is going on in my tummy seems to be the norm:-S. Dai Frank managed to get up the stairs – mind you it took him some time – and I pretended to be busy in another room. He wanted to do it on his own and didn't want me to see him struggle. He said last night he fancied Sea bream and cauliflower to eat. Thank heavens for Tesco 24 hour. He's had no appetite for weeks so was very surprised and happy that he eat half of the fillet and one cauliflower floret, and the best was it stayed down

My best wishes to you all. Megan hope Phil goes from strength to strength , Dai you and Slim have been through so much , I pray that treatment gets sorted and works

Love to you all
Jean xx

[HelenParticipant]

Dear Jean
Home at last …. Hurrah …and managing to eat as well. It's all good progress. Hope you both manage to relax and recover together.
Love Helen

[jmsmythParticipant]

Hi all

Frank went to hospital to the clinic. After 3 hour wait we saw consultant who was furious. I have never seem her so angry. She said she left instructions that Frank was not to come to clinic until Monday. She said had she have known that he was coming she would have ensured he would have been sent to day unit, bloods taken and she would come to see him. (She is just back from a few days holidays)Frank told her that registrar told him to come – feel sorry for registrar as he is going to get a roasting. She said anyone who has just had a SCT should not be hanging round waiting for 3 hours. She went on about how rotten he must be feeling. Frank told her he was glad to hear that as he was so worried about feeling so bad. Felt like there would be no way back. She checked his blood results and said she was very happy. Haemaglobin 12.9 white cell 4.8 platelets 62 neutrophils 2.33. Potassium and phosphates ok free light chains normal and kidney function ok. She said that only for the way he looked and the neutrophils you would not know he had a SCT She wants him back onMonday to check him out but she said he can come in any time and go to the day unit and they will contact her to come and see him. I have to say my respect for her has risen

Frank has just made himself cheese on toast – said I don't know how to make it – cheek after 43 years 😀 It tired him out but wanted to do it on his own.

Thanks for listening take care all
Love Jean x

[eveParticipant]

Ho Jean

I am so happy for you,they are good bloods,and I am so happy you have a first class consultant who knows there is no way a man who has had a SCT should be waiting three hours in clinic

Tell Frank if you cheese on toast is not good enough,he can make it all the time and give you a rest. love Eve

[HelenParticipant]

Hi Jean
I'm with Eve here, I'd be requesting cheese on toast a lot too! It's funny but that was one of my favourite dishes after SCT also. Blood results look really good too
Love Helen

[PerkymiteParticipant]

I am so pleased for you, I know you like my wife, will feel all the responsibility now but the Consultant?s anger should give you one very, very big clue to the course you should steer.

Be absolutely bloody minded about possible infections. Make sure everything is spotless use detol ? germ killer type cleaners etc? Do not allow anybody who has had a cold or any sort of bug in the house. My wife insisted nobody but nobody should touch me and conversations were held at double arms length. YOU cannot be too careful at this stage.

It is hard but it is doable and people quickly understand and will support you.

All the very best of luck Jean – you and Frank deserve it.

Kindest regards ? Vasbyte

David

[jmsmythParticipant]

Thank you all for your responses

Unfortunately frank has little energy so for the moment I won't suggest he makes me some cheese on toast but I will when his energy improves 🙂 .He is still eating very little but he is eating!!

David I have Dettol all over the house and hand sanitizer sits by the front door. No one gets into the room till hands are done.

Best wishes to you all
Love Jean x

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