This topic contains 65 replies, has 14 voices, and was last updated by 
Vicki 11 years, 7 months ago.
Hi Jean and Frank
Aww Bless you two, its an uphill struggle for most of us and a bit harder than that for some, and you two are a pair of those.
Stick with it Jean you know he is getting looked after and I know its hard for you also so you must take time out to rest.
Did you get a reply from the other Dr about treatment carrying on ?.
Am sure that Light is near you now.
Take Care and am getting a torch to shine to show you the light at the end of the tunnel Tomorrow 😀
Love Tom Onwards and Upwards xxx
Ah jean and frank,
I remember you saying to me once that there is a light at the end of the tunnel, but it's another b train coming!!!
You guys are really going through the mill aren't you. I know the dealing of being so near and yet so far and that you want to get him home :-). Also the struggle with the weather over in your neck of the woods makes it so much more difficult! When it was Colin's there was torrential rain and it made the travelling so difficult. By the way I fumigated the house almost for fear of germs, and had the suite cleaned……that brought ME! Out in a rash LOL.
I so hope frank is feeling a bit better today. At least the they are getting the top kidney man involved!
We've had our own little adventure over the last couple of days…..thinking my emergency visits to hospital were numbered for a while….oh no. I went to work, Colin fine, got to work Colin phoned ill, vomiting, tummy upset and I'm chronic pain. Back home blue light to hospital, hours of tests, even a surgeon at one point to consider tummy issue! End as gastroenteritis, back home now feeling a bit rough 🙂
Take care jean and frank thinking of you x
Vicki and Colin x
Hi Vicki and Colin
Sorry Colin that you have the dreaded lurgy. Gastroenteritis is such a painful and dibilating thing. I hope you get over it soon.
Frank and I have just did three laps of the Unit. Consultant in and he asked her if he could come off the drip to have a shower and a bit of exercise. He has been let off til 4.30. He was convinced that he was getting home tomorrow but she who must be obeyed said no. The other dr prescribed some meds yesterday but the pharmacy here has not got them. They are supposed to be trying else where. Consultant said she might let Frank come home on Sunday if he comes back for more IV -potassium , phosphates, electrolyte – oh boy there is so much to remember. He needs it as so,ething is leaking from his kidneys. Frank feels ok. The diarrhoea started again in the middle of the night. He was doing so well yesterday eating small amount frequently.
Colin take care of yourself and hope the recovery is quick. Vicki take eat easy. I am hoping that I see that light that we all talk about. Frank has been in here 4 weeks today. I thi k he's upset that he won't get to see th United match tomorrow :-S
Take care both
Love Jean xx
Hi Jean and Frank
Well that four weeks has flown by (but not for you two am sure) well doing a few laps is good but the loos bowels ain't too good but to be fair I had that for a couple of months .
Am sure the light at the end f tunnel isn't too far away.
I had a femoral line fitted and I could shower with that, I just eft the drip outside the curtain and wash away or just stand under it when I was too weak to wash proper.
Hope all is soon sorted for you .
Love Tom Onwards and Upwards xxx
Hi jean and frank,
Just tuning in to see how you guys are doing. How did the assessment on franks kidneys go? Any sign of coming home yet? Would be great if he could be home for Easter. Nice for you and the family 🙂 could you record the united match for frank…..he will have plenty of time to watch it when he is recuperating?
Hope you are beating up too jean,
Vicki and Colin x
Hi Vicki and Colin
Has Colin got over the gastroenteritis yet I do hope so. Franks electrolytes still low but have improved a bit. Really don't understand it but this is what is leaking from kidneys. Anyway his consultanstis off for the long weekend and another one has taken over. He seems quite nice. If everything goes to plan he says Frank can home home tomorrow for a few hours and then go back about 8. At first when it was put to him he was not up for it at all but today he's all excited about going home for a while. Must be feeling better. So me – I'm knackered as I have disinfected the whole house again :-S I'm telling you Dettol shares must have jumped up 🙁 The diarrhoea has not appeared for 35 hours but in saying that all he is eating is yoghurt. So hope all goes well to,or row and I will be able to collect him for a while
Hope you are both well
Tom Frank can't shower and its doing his head in. The nurse gave him some cleaning wipes for hands and face and I brought him in baby wipes. With a bit of luck the new line will come out soon
Take care
Love Jean xx
Hi Jean
Sorry to hear Frank,s still in hospital,did not realise as I do not look in on here a lot at the moment, I thought Frank would have been out by now,kidney,s leaking,that's a new one on me,is he in any pain!!! I use to shower Slim when he was all hooked up,some times I ended up wetter than him,he had a shower but a wet room would have been easier.
How are you managing Jean it gets very tiring going to and fro !!!
Try not to worry about eating it does take some time to come back,but they do like to know he is eating and drinking alright ,you know yourself Jean,the hospital throws you out as soon as possible,specialy around holidays,so there has to be a good reason for keeping him in.
I think when any one first comes out after SCT,you are a little worried,you leave and all this support is gone,it is a very strange feeling,both Slim and I felt we were left in limbo hospital 85 miles and if needing any treatment except for bloods and platelets it was A&E . Your hospital is much nearer,so at least Frank will not have far to go.
When he gets home for the afternoon,he will not want to go back
Try to get some rest Jean because it gets harder for you when he gets home. Love Eve
Hi Jean
Oh hopefully Frank will get home for a few hours, will do him good to get some fresh air as well. When Pete came home he just kept looking out of the window, taking in the surroundings and was so happy! The sun was actually shining as well on his first few days at home and so that was a bonus. Lovely day here in Somerset, hope its nice where you are!
Pete is ok, still very thin and weak and no taste buds, but we actually went to our local pub this lunchtime, he had a pint and he got a lovely reception from the locals!!!
So Jean, there is light at the end of the tunnel, never thought it whilst Pete was in hospital, every persons treatment/side affects/recovery is so different. Pete never had any sickness or diarrhoea (touch wood), just a very severe throat problem.
Vicki, hope Colin is better and that you are keeping well also.
Take care all
Love Ann and Pete
xx
Hi jean and frank,
I so hope frank got home for a bit today! That will be a real boost to you all! I do believe how knackered you are jean….I am still not right! Colin has stopped the sickness etc but he is very very tired and lethargic…..it seems to be taking an age for him to get back to 'normal'.
These electrolytes that they are talking about…..I don't know much about them but I'm sure consultants have talked about electrolytes and the balance in the body's system…..but I don't know enough about it! Colin found it difficult to shower with all the gadgets, but as eve says I used to shower him, trying v hard not to get the line area wet! Yep I am that awkward, water went everywhere except on Colin! It is nerve wracking when they first come home as there is no nurse, no bell to ring…..but it's great 🙂 so keep your chin up!
Hi Peter and Ann
Glad to hear Peter is doing well, lovely day down south here and it does lift our spirits doesn't it! It is a real slow but sure recovery and just a vase of being patient. A pint at the pub is a step in the right direction!!!
Take care and happy Easter all! Just of to start one of the Easter eggs, still a kid at heart
Vicki and Colin x
Hi Ann and Vicki
Frank got home – we arrived about 2.00pm. Our sons came round but never brought children or their wives. He watched the Liverpool match and fell asleep. The only thing he had to eat was a yoghurt. He woke at 6 and asked me to take him back. He was exhausted. before we left the hospital the doctor said the calcium had risen slightly but they were not going g to give him IV calcium as they wanted to see if calcium was rising because of the meds or on its own. Said he could got out for a while tomorrow but it took so much out of him I will be surprised if he comes out. Mind you United are playing tomorrow and watching it with United supporter son might lift his spirits a bit. Before this shi**y disease hit him he was so active and it's heart breaking to watch this frail thin man try to walk a few paces. Wish this light would get a bit brighter 🙁 ,y best to Colin and Pete and hope they go fro strength to strength
Take care
Locke Jean xx
Hi Jean,
It is early days after the SCT , I remember after mine I had no energy at all and even to walk around the room in the hospital was an effort. The physio's came daily and told me what exercises to do but to be honest I tried but it was just so exhausting!!!!! I remember the first time they walked me to the end of the corridor, I had to sit down and ask for a drink,( felt brilliant to be out of the cell of confinement though!!! )
Frank will improve but the treatment is severe and takes a lot out of the patient. Yes its true before this disease hits most of us we were fit and healthy which makes it all the worse.
The light will get brighter, just like a dimmer switch it takes a little time.
Love Babs
Hi Jean
Good to know Frank got home,it does take a lot out of them Jean,when Slim came out the idea of going home gave him energy,I wanted him to have a wheel chair to the car,he refused,we made it from Kings in London to Kemsing Sevenoaks,had to stop as he could not go on,had a rest,then rushed like mad to get him down to Deal took 3 hours and it just about finished him off.So make sure Frank takes it easy.if he is still in hospital this week,get a porters chair and push him round hospital,most hospitals have a gym ,wheel him down,they have foot peddle bikes,good for leg muscles .
Jean you are sounding emotionally drained and the hard work for you has not started,keeping things clean,cooking food that will not be eaten,and being at Franks side to help wash and get things is hard work,try to rest,cat nap,get snack type food in,believe me anything you can do to make life easier for yourself is worth it.
There is light at the end of the tunnel ,it's just slow getting there.
slim was unlucky SCT did not work for him,he has started the roller coaster journey again,but we managed a few holidays between ,so that was a plus.at the moment we are coming to terms with the future,we will know more on the 12 April. When we see consultant. Wishing both of you a long time free of Myeloma .Love Eve
Hi jean and frank,
So glad that frank got out for a bit…..but that's an epic journey for him as he had been whacked with everything you can think of to get through this sct! It will come good but it takes a lot of time. Even now Colin has been rubbish since having that gastroenteritis, came out of hospital Wednesday night and he has been like a wet rag ever since, no energy and sleeps an awful lot! I am worried as usual that its the myeloma!
Frank will need to take it easy, he will be home soon, you take it easy jean you need your energy as eve says!
Eve, sorry to hear about slim, I didn't know his sct hadn't worked? Good luck on 12 April
Vicki and Colin x
Hi Jean and Frank
Aww bless you two, you are having it hard but it will come right its took a bit longer than mine and I was drained so I can only guess how tired frank must be (and you jean) .
I have nearly everything crossed that Fran soon turns the corner and is allowed home.
Love to you Both
Tom Onwards and Upwards xxx
Dear Jean and Eve
I'm beginning to think that the boys get better looking after than the girls!!! I was doing all the cooking within a couple of days of getting home! I didn't do the shopping though, but was on my own a lot when hubbie went off to work, 'business as usual' being our mantra
Quite clearly I needed a wife!
Hope frank is looking like getting out for good this week. And jean do look after yourself, it must be very tiring doing all the visiting.
Love Helen
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