[simonParticipant]

HI,,AFTER 16 MONTHS TREATMENT,,VELCADE,SCT,,ETC,,,I’M IN REMISION FOR NOW,,WHICH IS GREAT,,5 WEEKS SINCE LAST CHEMO,,,I’M FINDING IT DIFFICIULT,,TO REST AND RELAX,,MOODS DIFFERENT EVERY DAY,,EASILY TIRED,,I LIVE IN NZ,,,AND JUST COME OVER TO ENGLAND TO SEE MY MUM AND SISTER,,IN TRING..FINDING IT DIFFCIULT,ON MOST LEVELS WITH THEM,,DONT WANT TO BORE THEM WITH ME,ME,ME,BUT MY PHYSICAL AND MOODS,MOODS IN PARTICULAR DIFFICIULT TO HOLD DOWN,,I DID ALL MY TREATMENT ON MY OWN,,FOR ME,,TO MAKE IT EASIER,,I’VE NOT CRIED ABOUT MY HAVING CANCER,,I’VE HIDDEN MY FEELINGS THREW OUT,,WITH A COUPLE OF EXPLOSIONS AT HOSPITAL AND STERIODS MAKING THINGS SUPER TRICKY ON THE EMOTIONAL FRONT FOR ME..I’VE BEEN THREW ALL LAST 16 MONTHS,AND ALL TREATMENT BRINGS,,,I’M ASKING MY SELF WHAT AM I EXTENDING MY LIFE FOR WHEN I’M MORE NUEROTIC[& PARANOID],, THAN EVER,[IN RELATIONSHIP TO OTHER PEOPLE],AND FEARFULL….TIRESOME…..I JUST NEEDED SOMEWHERE TO GO WITH THIS,,THANK YOU,,,FORUM…..

[finnParticipant]

Hi Simon

I remember having similar pessimistic thoughts after my SCT. It must be something to do with your body recovering from all the drugs and treatments and not knowing what to do. Also, you have been concentrating on getting through it all and now after the SCT you have nothing to focus on. However, in my case this passed after about a year and I started to feel very good both emotionally and fysically. Give your body and mind some time to recover, I am sure you will feel better soon. Take care

[saraheParticipant]

Hi Simon

Congratulations on your remission, Well done!

But I agree with Finn. My husband is now four weeks after coming home after transplant and we’ve both been more emotionally down than at a lot of other times through it (he was diagnosed March 2014). I think Finn is right … it’s like we’ve had this big project on and it’s all we’ve concentrated on. Now it’s like we have to face up to life after the project, but having taken this physical and emotional hit, and move on. It just seems hard as you are expected to feel one thing and actually your head is all over the place. It’ll take time for the emotional scars to heal and some of the physical damage (like spinal issues and bone lesions) is permanent. So it is still a lot to deal with, so give your body and mind time. And it can be hard with other people’s lives carrying on around you and you’ve seen this bigger reality and it has changed you.

For us it’s hard just now waiting for the 100 days to get an outcome. I hope we get to hear the word remission.

Take it easy, take care and believe you are going to stay in remission for a very long time.

[CarolsymonsParticipant]

Post traumatic stress is a possibility after what we go through. I know I was very down about 6 months after transplant but have perked up now. Some people have seen counsellors, maybe that would help you? My family have been little help, I feel they all have their heads in the sand as I don’t look ill so therefore everything is back to normal in their eyes. I wish that I was back to normal but the treatment does take its toll.

Carol

[mikeyParticipant]

Hi Simon ,
Great you are in remission , I can identify with your emotions my friend, I,m afraid it is another side order of this disease we all have to cope with .
Fortunately i have someone close who comes around every day and i manage to get out for an hour os so, for a coffee etc, but like you i tend to keep everyone else at arm,s length ,including my close family, who tend to have their heads in the sand, I can understand that,it,s hard for them also, but it does,nt help the sufferer .
i have also had a couple of explosions in a hospital, i don,t think they fully understand the effects all the treatment and especially the Steriods have on us.
I find it very hard in places like supermarkets with too many people around, the treatment has shredded my nerves to bits.
But , i was diagnosed in 2003 been through nearly every drug there is, and a SCT , and still keeping the flag flying , despite all in 2015 and it,s amazing they have so many drugs for us these days, to keep us on our toes, it IS very hard at times, but i hope you feel better emotionally soon and your trip to the UK was well worth it.
if you ever want to chat, i can give you an e: mail address anytime.
Best Regards.
Mike

• This reply was modified 9 years, 6 months ago by  mikey.

[VickiParticipant]

Simon

So pleased you were able to let your feelings out. It’s definitely not easy. Colin was very self contained. He was very very anti counselling, but I persuaded him to give it a go especially leading up to sct. They were excellent and he hugely benefitted from it.he still uses the techniques they gave him and they work. Wishing you all the very best

Vick and Colin

[Author]

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