[GillParticipant]

Hi Min

I am so glad I am not the only wierdo in the UK. I hate tennis too.

I know how you feel about getting angry. I have felt, at times, completely fuming and bewildered as to how Stephen could get so ill. Almost like "Stephen what did you do???"

Stephen is 2 weeks post 2nd SCT, and not yet very strong. To be honest he has been hard work since he came out of King's.

I am exhausted and when I get a chance to sleep I can't.

I do hope that Peter is on the mend now and you both feel better soon

Gillxxx

[eveParticipant]

Hi Gill

Glad to here Stephen managed his 2nd SCT
It is awful when you are stuck at home,first the hospital,then home I felt Spring came and went with out me knowing,and Slim has not got to the hard part yet,on 5th cycle ctd.

Sleep is the worst thing my body clock woke up if Slim moved!!!!!then in the day it just went on,bath toilet,fetch and carry,every time i sat down he seemed to ask for something.cleaning went out of the window,Friends helped out a lot,with dog,shopping,a friend cleaned the whole flat for me.
Cat napping helped me,and forward plannning,helped take my mind off Slim for a little while.

Hope you turn the corner soon,best wishers Eve

[MinParticipant]

Oh Gill,
I know just how you feel, its a week now out of hospital with Neutropenic sepsis,sort of the equivalent of an SCT without the stem cells if you know what I mean…… he is becoming a fad. I want I want I want just like a 3yr old and when he gets it he doesn't want it. I am worn out with trying to please and now deciding just to give up. If he want s it he can get it himself. I have spent the entire day in the garden wearing myself out,the sun has been scorching even for the north east . but, the joy of gardening is…. I don't think…at all I just enjoy;. cutting the grass potting and tidying up. I have been lost in foliage for nearly 7 hours and it was wonderful. Now got to cook dinner and listen to the latest moans.
I had my knock out drops last night and tonight I will be so tired from the garden work, that a glass of wine should finish me off nicely…
MM Men cant live with them cant live without them!
I hope Steven starts to pick up soon, life is such a bit..ch for them I know I couldn't do what they do so from time to time I get soft on him… That is where Im going wrong.
It better be worth all this aggravation or else!
love Min

[brochoParticipant]

Hi Min I am so glad you are enjoying your gardening , if anyone deserves a break you do!Perhaps Peter needs a kick up the backide , I bet he doesnt even realise he is being a brat!!So let him fend for himself a bit , even if its only a few hours and I am sure he will realise how lucky he is to have you looking after him. You said you think us patients have it tough but I honestly think its our partners who deserve a medal for putting up with us . I hope you have a better week and Peter too of course love Bridget x

[MinParticipant]

Hi Bridget,
How are you doing on the new painkillers? Better I hope.
The man gets stronger each day but right now he is worn out with watching the mens finals. while I have been acquiring a tan in the garden.
Today was a breakthru as he made lunch for me!!!!! Only a sandwich and crisps but beautifully served and cut. I know he can do it when he wants to, and he took the dogs out this morning so progress at last.
Now if I can only get him to eat what I put in front of him we will have cracked it.
the truth is I cant remember him being this bad the 1st time or I was so stressed it didn't matter. Need to get some fat on him or will have to buy yet another wardrobe of clothes. He has one pair of trousers that fit and they are winter ones. But with his new skinny legs its just as well, he refuses to wear shorts even to sit in the house or garden. I am building up to a break away. my break away from him… wait to see what happens at clinic on Tuesday.
I know he is feeling miserable having lost all his fat and muscles again. Hard work ahead.
Love
Min

[brochoParticipant]

Hi Min god to hear Peter has realised you need a bit of looking after too , even if its only a sandwich its the thought that counts. Perhaps he is worse this time because he is more scared , angry than the first time , I know relapsing brought up a whole load of emotions for me the worst being feeling helpless! I am struggling with these new painkillers , the pain at night is awful The nurses at the hospice now monitor me and after dropping from 70mg Preglabalin ( I was abit shaky and out of it) to 25mg I now have to take 25mg in the morning as well Trouble is it knocks me out for most of the day and to be honest I am sick of taking thses strong pills too but whats the alternative !So onwards and upwards ! We will get there in the end Hope you have had some sun today and been in the garden love Bridget x

[BADGERParticipant]

Min

I agree with bridget perhaps the hopital should have offered peter councelling as well as drugs all these doctors look after the body but not the mind, I am really glad he has perked up a bit to make you lunch this could be the start of a new mindset with him hopefully he may become more positive can someone come to your house to give you a break it sounds that you really need one now
Love Jo

[BADGERParticipant]

Hi Bridget

glad you are back on line so sorry they have not got on top of your pain
it must be awful to be in pain all day and you dont want to wiped out either it sounds like making a cake but they havn't got the mixture right yet I really hope they do soon, keep in touch love Jo:-/ 😉 x

[MinParticipant]

Today I had a day of pampering at the hairdressers and got some more of my long hair shorn and Peter had a day of housework, followed by some sunbathing. Progress at last.
Last monday was the day he came out of hospital, so one week on and he has got his small dumb bells out to improve his arms strength. He used the hoover& put the washing machine on and had a big lunch. Few more cans of spinach and might have my old man back. Started back on the Thalidomide yesterday.no dex but this is defiantly and improvement.
As Tom says onwards and upwards now
Min

[MinParticipant]

Pregabalin, I remember Peter shaking with that stuff, it was awful turned him into a slavering inert geriatric. It took a long time to get his mix sorted but on a weekly basis there was something new to try.
Pain is awful to bare, my little sojourn in the pain stage was my sciatica and that was bad enough but at least I knew it would go away in time. You don't have that assurance but perhaps its time for more intervention of a different kind. Reiki or acupuncture, in addition to the drugs of course. Does it get any better when you take your dex? or after you have had an infusion of zometa?
I hope they sort it out, perhaps a few days in the hospice will help them to get it right quicker? A friend of mine with a brain tumour went in just for 3 days so they got the mix just right and were on hand to monitor it. She was sorted by the time she got home.
Peter is going to ask at clinic tomorrow about his kyphoplasty which has been delayed since December,when he relapsed from his scat. He is getting better daily so bloods must be on the up finally.
Love MIn

[zasrsParticipant]

Hi Min so glad that things are improving for you both. i went to france at the end of june for painting swimming and walking what bliss!! it does help to cope with whatever mm has next to throw at carers!! did feel guilty, gordon was fine though and was impressed with my ?art work.

Hi bridget sorry you are having such a tough time, when gordon was first diagnosed his wonderful consultant told him no one should live with pain, the reality is this is not always possible. I do feel for you as i have at last got rid of a bad back i was so miserable and a s…. to live with, nothing compared to you.many cyber hugs and to min to.

sarah xx

[brochoParticipant]

Hi Jo Min and Sarah thankyou all for your good wishes its you lovely people that keep me going! Min how wonderful that Peter has turned a corner at last it can only be onwards and upwards now!!Love the new hairdo too Srah your holiday sounds just perfect to get away from it all and I bet Gordon was pleased you went , I know I feel so bad that Jeff has to live with mm and I encourage him to enjoy himself away from me when he gets the chance Jo you are right about the recipe taking time , trouble is mst suited me for so long it makes me impatient when other remedies take this long So my new motto is Be Patient and Dont Swear (Haha –as if I would swear!) love to you all Bridget x

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