[Anonymous]

hi eve
i have not been on here for a while and feel bad for that. i know exactly how you feel. i deal with it by keeping busy and putting on a smile. there are days when i sit in the loo and cry my eyes out. i have little patience with work colleagues and shop attendants who always ask me if im having a nice day!! i know henry is doing really well and we might even try to go to jamaica after christmas to see his mum. but he is not the same person i married the chemo has left a lasting effect, im constantly worried about him and cannot imagine life without him. he is a very strong man and we have had THAT conversation but try and be so positive. he has just started a new job nearer home as his 6 weeks retirement got boring!! i have a new job back in nhs and we have moved house so we have more time at home in the evenings. he is coping better and only had one chest infection in last 4 months. it is unfair but i realise we have to make the most of it and lead a normal life and in that i feel bad when i have cross words with him. people dont understand the pressure of the carer wouldnt wish it on anyone. i also find some people dont ask me how i am as they dont want to hear my woes. at my old job my work friends would just give me a hug and make me laugh which was great:) my new job isnt great but an ends to a means but i am getting more tearful more often so maybe need to revisit the counselling which i found helpful. also have made lots of friends on twitter and facebook who make me smile. take care love sarah xxxx sezziemc@aol.com

[eveParticipant]

Hi Sarah

Once you come to terms with the fact that Henry will never be the same after Myeloma,it will get easier,not many make it back to number 1 position again ,Tom is one of the people who has,but it still taken years plus,he says himself about the tiredness,so coming to terms with this is important.
Henry is in remission,so lock the thoughts of Myeloma away and enjoy today,because it will come back.i have never had counselling , I find some things very hard,summer has come and gone,and except for one friend,the rest have not bothered,but once I accepted the situation ,I have felt at peace with our situation,we have the immediate family,and that's it really.
I do pop a little white pill,mainly to keep my emotions in control,I either cry or get angry,and it does not achieve anything,a friend who I have not seen for months,said she would give me a ring and come round for coffee,yea!! And pigs might fly!!!!normally I would let rip,but why bother,are people like that worthy of are thoughts,by the way I have known her for 35 years,and helped her a lot!!!!,
So Sarah,you need to accept life is different,and it will give you an inner peace,and make things more acceptable .,I have found since I started this post,more acceptance of our situation.Love Eve

[Anonymous]

hi eve
thank you! i cried but it made me perk up. consultant told henry he is at the top of all his bloods so we can only hope he stays like that for ages:) our children are fantastic and some of our friends too and the ones who dont bother i dont bother with now!
most days i am ok and keep it together. but like anyone i have bad days. i admire henry so much as he hasnt complained at all. take care eve and thank you for replying it did me the world of good:) xxx

[sanParticipant]

Hi Eve and Sarah, well Eve you are such an inspiration 🙂 its so hard for everyone and really unless you are going through this with a loved one you just can't know how difficult it is dealing with the twists and turns of myeloma and the emotional ups and downs. Sarah, Eve is right enjoy Henrys remission 😎 and don't think too much beyond today, i send love and hope that Slim and Henry continue to remain stable San xx

[HelenParticipant]

Dear Eve
You made me laugh when I read about the Christmas decorations! You'll have to dust them when you take them down on 12th night!
I'm glad Slim is a little better, that makes all your efforts worthwhile. How is the dog doing on his holiday.? When does he come home?
I'm on to the 8th Velcade cycle, had to have the dose reduced as my legs were unbearably painful after 4 cycles … I've managed the rest through gritted teeth and many many painkillers, lots of lying on the sofa and grumbling at anyone who dared to come near, you really find out who your friends are when you have this disease. As soon as I can I'm going back to work, I'm so bored at home… Cabin fever I think.
Love Helen

[eveParticipant]

Hi Helen and San

Well things are a lot better,they seem to have stopped the infection,will know today as it's hospital for bloods! But Slim seems a lot better himself although not sleeping,plus one leg retaining fluid,had some nice weather so was able to take him out walking the dog,with me pushing chair.
The dog came home on Wednesday,he enjoys his holidays with my daughters dog,but cannot do the long walks that she does,I think the dog curtailed Ruth's activities as she has taken up running as well.:-/

Helen the Velcade been hard for you,I imagine you will be glad to see the end of it?,as to work,what ever floats you boat and keeps you going must be a good thing,is all that wool still behind the sofa???,or did the treatment effect your hands as well,Slim gets cramp in his hands,and his grip has no strength any more. How is your cat? Still going?
🙂

San how is your mum doing on the Revilimid ,what dose is she on,Slim takes 25m every other day,so I take this is half dose,I do not think he would have managed taking Revilimid every day,as it knocks the bloods down,fatigue has been the worst thing,he has been off it for 2 weeks now and the improvement is good,but we do not know if it has worked,and he will be starting his 6th cycle on Monday,if bloods are ok

Well daylight has come time to walk the dog, Love Eve

[sanParticipant]

Hi Eve so pleased to hear that Slim is better in himself and you have been able to get out and about:-) ahh Mum had a few months of remission with revlimid but she could only take 2 cycles before her liver was affected so it was stopped and her paraproteins came down but that was 4 months ago and now her pp's are 38 and rising, so we go back in a month to see what can be done either cdt or velcade, the Dr thought that velcade might be too harsh and wants to send her info re side effects so that she can decide before her next clinic appt, dear Mum is naturally not at all sure, so i hope that the clinical team can decide on a treatment regime soon, she is clearly not as well as she had been over the summer but we are thankful for having some respite from the chemo over the lovely summer but its not to be now and off we go again! thank you for asking after her,:-) sending love to you and Slim.
Helen sorry that you have had a really rough time, i would visit you if you lived nearby for sure ha! re friends, i always feel that there are unexpected friends who pull out the stops and those that you let you down at these times, its hard being at home when you are not well enough to do things that keep you busy. Good luck also with going back to work i really hope that it goes well for you when you are well enough.Take care Helen and look forward to a lovely Cornish holiday next year? 😀 love San x

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