Ann that's great about Pete going back to work I'm sure you are both delighted that he has come so far in such a few weeks. Well done Pete 🙂 . Frank also has no energy, he is eating a little and had a choc ice cream this afternoon. He also had a Guiness last night and is having another one tonight. He had a sip of my wine and he liked it but was scared t would bring back the dreaded diarrhoea again, so had no more. Frank is as bald as a coot and soooo very thin. Does Pete have dry skin? Franks is terrible its actually peeling like he had been sun burnt.
Ann athough the results were good I'm apprehensive as 6 months ago us PP were dropping without treatment and consultant mentioned non secretory MM which can't be detected in blood. So hope that we haven't been given false hope. Will see on Thursday. Tell Pete I wish him good luck on Monday. Lets know how he got on
Love jean xx
Hi Vikki and Colin
Don't apologise Vikki I know exactly how you are feeling. :-S congratulations on your promotion well done you. I don't want to sound selfish but three years ago I had the chance of taking early retirement and after talking it over with Frank I did. Don't get me wrong I wouldn't change it but I sometimes wish that I had something else on my mind that I could concentrate on except this bl**dy myeloma 😛 .
Frank is still eating small amounts but consultant said today that she thought he had put a little weight. I think the word myeloma will always rear it's ugly head when something is not right. I can empathise with Colin and the tiredness. We had dinner on our laps tonight (united – City match) and frank said he would take plates to kitchen. He took hi and couldn't manage to take mine. But reading other posts this will come over time (I hope)
Funny you should mention measles and vacation I asked the consultant about that today – would Frank have to be Re vaccinated and her reply was that the topic was being discussed and if decided that Re vaccination was the way to go it would be at least 6 months post SCT. Every hospital has different ideas.
Vikki I hope Colin starts to improve and ENJOY your promotion I am sure you worked hard for it
My best wishes to you both
Love Jean xx
Hi Helen
Mind running riot. As Franks PPs were dropping long before CDT consultant suspected non secretory. Nothing was done to find out but Ellen had said it would be very unusual to change after 6 years. As far as I know a BMB is the way to find out if there is any progression of the MM. seeing her on Thursday so will ask then
I have everything crossed for your BMB results hope you get good news. Please let us know
Love Jean xx
Hi Wendy
Loved your blog on your trip to India. You really had a blast 🙂 You are very determined lady and long may your adventures continue
Jean
Hi Vikki and Colin
Frank got home on Tuesday – 2 and a half stone lighter with no energy and very tired. I told him this was what he had to expect. We were at consultant and she said with the exceptions od the neutrophils his bloods were good. He has started to eat small bits of food – and I mean minute but at least it is come thing. And guess what Frank gets his priorities he had a small glass of Guiness last night, he said it didn't taste las usual but he drank it and had no bad affects. Kim our daughter in law saw him on Wednesday and then again yesterday and she said that he saw a marked improvement in him. When he got ho,e I posted under Carers 🙂
How has Colin been doing.? Hope he is good. Thanks for asking adternFrNk
Take care
LovemJean x
Hi David
Just want to add my good wishes to you on your journey with Velcade. I hope it's good to you
Love Jean x
Hi Richard
Things like that happen here in Norther Ireland. Frank went in on A Thursday and the chemo was to start then and stem transplant on Friday. We were told lies (contradictory explanations) but said chemo would be late and that would mean the transplant would be late on Friday and they couldn't do it as there would be no consultant or staff on duty over the weekend in case of emergency. As we were leaving hospital (for the day – he had to go back at night) we bumped into consultant who said she would see him over the weekend. I said that I thought she was off but was told no she was on duty:-P Frank didn't say anything (which surprised me) but he said he would be in hospital for some weeks and did not want to make any enemies. We got there in the end and the staff were excellent. Hope things go well for you on Monday and you have a brilliant weekend with your wife and daughter
Jean
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
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
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
Dear Eve
I am so sorry that this damn disease has reared it's ugly head again. I know you are a very strong woman and very knowledgeable. You and Slim have been through a very rough time. I don't know what to say to you Eve but my thoughts are with you and Slim and I will pray that there is a treatment for him.
Love Jean xx
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 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 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
Well done Babs. Happy birthday cells 🙂 and may you have many many more. Franks were born on 5 march. Still in hospital. Some hic cough but hope to get him home soon
Take care have a ball and enjoy your holidays
Love Jean x
