[simonParticipant]

HI,,IM A YEAR IN TO TREATMENT,,9 WEEKS OUT OF S.C.T,,MY MYELOMA WAS CAUGHT EARLY[2 YEARS MONITORED] SO FAR PHYSICALLY AND RESPONSE TO TREATMENT,,IVE BEEN DOING WELL..IM A WALKING TIME BOMB EMOTIONALLY,NOW,CARNT COPE WITH ANY EXTRA PRESSURES,,AND SCARED OF MY OWN INTENSE FEELINGS,,BOTTLED UP,,,RAGE,TEARS,EXPLOSIVE,,,TO THE DEGREE I KEEP EVERYONE AT A DISTANCE,,[A HABIT OF MINE BEFORE MYELOMA],,JUST KEEP GOING HOME AND KEEPING EVERYONE AWAY,,NOT SURE HOW LONG I CAN LIVE THIS WAY,,,NOT SURE IF MEPHALAN HAS EFFECTED MY NATURALLY,,NERVIOS DISPOSITION…DIFFICIULT TO KNOW WHERE TO TAKE THIS STUFF,,THIS PART OF HAVING MYELOMA,,,WISHING EVERYONE WELL,,SIMON…

[ellenModerator]

Dear Simon

 

I hope you don’t mind me replying to your post. My name is Ellen and I answer the Myeloma Infoline at Myeloma UK.  It sounds as if you are in a very difficult place emotionally and psychologically. The feelings that you have are perfectly natural, you are absolutely not alone in having them, I’m sure many patients on this forum would agree that they have gone through periods of extreme anxiety, self doubt and despair. This is actually quite a common reaction, particularly after a stem cell transplant. You have been through a very intense procedure which involved a stay in hospital surrounded by doctors and nurses who checked you several times daily and now you are expected to get on with things, to pick up where you left off before admission and to regain your former strength both emotionally and physically, and this is a huge ask.

 

This is something that is actually well recognised by doctors and nurses so can I urge you to seek help. I can assure you it won’t be the first time your specialist nurse or your consultant has heard this and there will be someone who can help. Many patients tell me that a referral to a counsellor or clinical psychologist has helped them come to terms with their situation and has allowed them to take back some control. So please do speak to someone at the hospital or your GP if you have a good relationship.  

 

Bottling things up, as you know, is not healthy and the longer you do it the harder it is to open up to someone and to ask for help. Often keeping things to your self is a kind of defence mechanism and its done to protect loved ones from hurt and to avoid exposing vulnerability. If you do open up to loved ones you may be surprised at their response, they may be relieved that there is something they can do to help, but I know that making that first step is not easy.  

 

I wonder if you might benefit from talking about your feelings to someone not directly involved. If you call the Myeloma Infoline on 0800 980 3332 you can speak to either myself, Jude or Maggie. We provide information, emotional support, practical advice and a listening ear to many patients and families on a daily basis. Calls have no time limit, are confidential and can be anonymous. If you feel that talking to another patients on the phone may be helpful we can match you up with one of our PEER members. Our PEER members are patients and families who have said they are happy talking to others on the phone to share experiences and to provide practical advice and support to those in a similar situation.

 

I hope that this has been of some help Simon and please remember you are not alone in this.

[simonParticipant]

THANKS ELLEN,,,IT IS SOMETHING ABOUT,MY SELF DOUBT,AND NOT BEING ABLE TO VALIDATE MY OWN FEELINGS,,,PEOPLE WANT TO RATIONALISE,FIX,CHANGE,,ETC,ETC,,,WHICH JUST ADDS TO MY PRESSURE,OF APPEARING A CERTAIN WAY,,,[ITS ALSO FRUSTRATING,THAT MY MUM AND 2 SISTERS LIVE IN UK,,AND I LIVE HERE IN NEW ZEALAND,,AND I STILL CARNT GET BACK UK,////ALL BEING WELL,GET BACK,NEXT JUNE2015,,]GO WELL

[daisychainParticipant]

Hi Simon

I totally support the advice Ellen has given you. The myeloma UK helpline incl Ellen have been fantastic in supporting me since my diagnosis Many years ago.

I feel the uncertainty of living with mm is the most difficult for me..Over the years I have gained strength by seeing a clinical psychologist, counselling (using a technique called cognitive behavioural therapy this has really helped me).

I’ve practised something called mindfulness and have read many self help books.

Good luck and I wish you all the very best.

Dawn

[Author]

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