This topic contains 29 replies, has 15 voices, and was last updated by 
tom 13 years, 8 months ago.
Hello all you lovely people. Will you humour me as I tell you about the most recent part of my journey because I now understand something that had eluded me.
When I first started posting on this board I was aware that I wanted to support people rather than ask for help. Somehow I didn't feel I needed help – I have always been so independent and after all this illness wasn't going to get me. This went on for a long time until late last year and somehow I feel I have 'come out of the closet' so to speak. I now talk about my illness, my feelings, ask for your help. I now understand why this change has happened. I have only ever been able to deal with my illness in small parts – take each day as it comes. In a way there has been a deliberate attempt to keep my illness private – not wanting to deal with the outcome. Now I am at the stage where I have to think about it and to let go to you all is a wonderful relief. No more hiding – this is how it is and I have got such a wonderful team taking care of me,wonderful family and friends and all of you – I feel blessed.
So it's wonderful when the penny drops and an understanding takes over. Would I have done it any differently if I had known at the beginning – probably not because that's me. But I am glad I know now and I just needed to say thank you to you all for helping me live with myeloma, whatever way we choose to do it.
Much love, Gaye xx
Gaye
That was very moving, and in a way helps me to understand how my husband has been dealing with his mm.
he is very private and at the outset did not want me to tell anyone what was wrong with him.
I on the other hand am an open book. If its out its not festering inside me.
I remember when he was diagnosed. I went home in distress more because I did not want to tell my children, I dwelt on the part of the Diagnosis which said I can give him 3-5 years and could only think of me.
I still get distressed when things don't go according to plan.
What I have learned from this disease is to be open. Whilst its my husband today it will be someone else's father mother sister brother tomorrow. Cancer before Peters diagnosis was something that happened to other people.
I talk a lot about it at work to whoever will listen as there are so many taboo's about cancer. The Taboos I realise are because no one talks about it.
You would think it was a sexually transmitted disease the way people whisper the word. Or they will say do you remember so and so who had cancer. So and so was more than a cancer sufferer and should not be remembered for having got cancer. Here I go again on my high horse.
Im pleased your out of the closet and even more pleased your able to share your journey with us and offer us your guidance. Keep on keeping on Gaye, and long may you be sharing your thoughts with us
Luv
Min
Hi Gaye
thank you for sharing such an amazing thought for the day. Like min I am a carer and have lived with this monster cancer for 9 years. I work as a district nurse so talking about cancer at work is second nature but still sometimes think why us but then again think why not!!
Even with my medical background i still feel i am in denial about this cancer which and tend to think very long term, not so my husband who is far more realistic
When gordon was diagnosed we also told up to 5 years, I totally put my head in the sand! And in a way it helped and he is still going sort of strong 4 years after he should not be here!!
Gordon was 49 at looking back had had mm for sometime, most of aour married life (35 years) had been 'no back ache today,' or 'I am in back pain today'.
Like you Gaye get a lot of help from this site and it helps me, i think to try to live each day and do things together as much as possible, even though gordon is a sort of working farmer! I think the penny has dropped, then other days it has gone again. Is this good or bad? Maybe it is the way i cope, like Min i could only think how would i cope rather than think of my poor husband! But maybe that is a survival feeling when the children are still quite young.
Thank you again for your thought for the day.
best wishes Sarah xx
Dear Gaye
I echo what Min and Sarah has written. I think you are very brave and I know your posts have helped many. Sarah, I was like you when Frank was diagnosed – how am I going to cope – and what will I do without him. To a certain extent, I think I am still in denial. Frank was diagnosed with SMM in Sept 2006 – no treatment – but I also talk about it to anyone who will listen – sometimes it feels so unreal – "Did I just say my husband has cancer" type of thing. Frank is also very private,and once the family knew about this horrible illness, he never mentioned it again. Family do not ask him how he is – they ask me. Sorry for rambling – difficult to get my thoughts down. My very best to you Gaye and thanks.
Love Jean xx
Dear Gaye how beautifully put Thankyou for sharing with us To a certain extent I am still in denial for a lot of the time too . It was over a year before I even looked at this site In the beginning , like you , I coped by dealing with it on a daily basis and trying to organise everyone else in the family ,as usual. As time has gone on I have opened up more and this is due to the wonderful people on here Your lovely caring nature and wise words have helped on more than one occasion when I have been feeling down. I think we all change and grow through our myeloma journey and the understanding of myself and others that has come with it is very precious and something I wouldnt change Heres to a long future for us all love your on-line friend Bridget x
Dear Jean
How wonderful to have a family who ask how Frank is and care!! Gordon's parents seem think that he should pull homself together and it will go away,they are both in thier 80's and have never been ill. When Gordon had his 1st sct my farther in law agreed to check his(gordon) cattle, on the evening gordon got home from kings father phoned ' good you are home you can now check your cattle yourself' my poor husband's vision was not right at the time and he could not drve, he had lost height, body weight, muscle tone and had not a hair on his body!! i broke down then the support from his two brothers and parents was and still is, not good. His parents ask out last friday to the pub, gordon is not that well coughs etc won't goaway and he realy did not feel well enough to go out he is still only 9 weeks post transplant and his mother really falt he should have made the effot as she has a cold too! All you post transplants will i think understand how gordon felt, i do !
Gordon came out after his 2nd scr in december 2010 and still has not seen his younger brother, he saw his 2nd brother two weels ago for the 1st time and that was due to us arranging to meet in a pub. Not a lot of love in his family.
Gaye you have really bought out some deep thouhts in your posting, thank you, is is comforting to know we are not the only ones living with cancer,trying to live a normal life, what ever that is now!!
with love
sarah
Gaye
this was so well put when I was first diagnosed I did not want to speak or see anyone I was afraid of the shutters coming down in peoples eyes when the word cancer is spoken I joined this site and it was my saviour it made me realise i was not alone I then found out my true friends and they let me know in no uncertain terms it made no difference to them I am lucky to have a wonderful husband who is my carer and my two daughters who really did support me from the start but it is the people on this site who have made me feel released and able to talk about it freely thanks to you all
Love JO 😎
Dear Sarah
I am so sorry to hear the way Gordon's family is treating him and you. It must be so hard for you to watch and listen and to hold your tongue. You must be a strong person as I don't know what I would do if I did not have the family's support.
I hope Gordon starts to feel better soon and that at some stage soon his family "wakes" up and gives him and you the support you need and I think are entitled to.
My very best wishes to yo both.
Love Jean xx
You know Sarah this site can make me so sad sometimes, not depressed sad just sad that some people can be so cruel or others can have such rotten luck that nothing seems to go right for them. And, it makes me realise that although I have a terminal cancer which will, if the No 4 bus does not get me first, be responsible for my death I have been so lucky in life. Please do not misunderstand I have had the heartaches and ups and downs of life just as we all have but I have always felt that somehow my dear wife and I would get through it together and we did.
I have so much support from friends and family that when I was diagnosed and given 2 to 3 years (if things go well) I felt I had started a journey, a walk. The path has holes and boulders on it that will make it difficult sometimes as it gets ever steeper. But all along the way are my friends and family walking with me, encouraging me, picking me up when I stumble, cajoling me when I get tired, helping me when I cannot reach up for help, but, all the time with me. I wish sometimes I could give just a little bit of my support to some of my friends on this site. And, that is why it makes me sad.
Kindest regards
David
Oh Gaye
Am I pleased you have "Come out of the Closet" 😀
I must say am not like you he he, Me when I was told back in Jan 09 and asked "How Long" and was told 5 years I turned to my young bride Elaine and said well we can do that cant we 😀 , and was i pleased when she said YES 😎
I also like others will talk the hind legs (and any human) of a donkey about My MM, The word "Cancer is a nasty word but it is less scary for Elaine and I as Elaine was diagnosed with Breast Cancer in Jan 2008 (yep bout 12 months later I was told I had MM) so watching Elaine go through what she did and come out with the pretty's smile Ever 😀 I knew we could do it again 😎
But as for talking about Elaine's Cancer was harder for Elaine than I, Elaine did not want to go out for a meal nor a drink and would not go to Asda Shopping as she worked at asda (other shops available) then we used to go out every nite when she was having her RT it made us sleep at nite 😀
Now as for Family and Friends Honest I could not have done it as well as we did without those close to us far away from us and of Course My online Friends Just like you all 😀
And Honest Gaye it is I that is Blessed, Blessed to be able to class you and all you others as MY ONLINE Friend, and for that I am very glad to have you all help in your own ways, Long may it Continue.
One "Onwards and Upwards" Tom xxxx
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Thank you all for your lovely and different replies which goes to show there is no standard way of living with myeloma. It seems we very much need support and love which isn't always forthcoming for some, denial seems to appear throughout as our way of dealing with what we find hard to deal with.
I wasn't sure if my thought for the day was appropriate but I am so glad I wrote it and so glad you responded the way you have. Thank you so much for that. Your own thoughts have been very moving and honest.
Much love
Gaye xx
Hi David
Thank you for your reply, although gordons family is in denail and not at all helpful, we do have 2 sons and a daughter + 2 grandbabies who are just there, and are wonderful, always a silver lining somewhere!
best wishes
sarah
Hello Gaye,I too was moved as others when I read your post.
When I first found this site in Dec 2007 your posts were the ones that stuck out for me in the way they gave me hope,and after just been given the dreaded prognosis of 3-5yrs they were very instrumental in keeping me going.
After the initial shock I took it on the chin knowing that there was little point moaning and groaning as it was'nt going to go away.
I'm 3yrs in now and as you know have recently relapsed but still do my best to put it if not out, certainly at the back of my mind although the pain can make that difficult.
I have good days and not so good and some even bad ones but like everyone else on here I take each one as it comes and make the most them.
Live every day to the full is the only way I see it.
I also have the strongest support I could wish for from my wife Sue and of course my faith which kept me going through the dark days of 2008.
I know I don't have to tell you this Gaye but stay strong.
We will always be here for you as you have been for all of us.
God Bless…Keith.
Thank you Keith for your very kind words. As always they mean so very much to me. What I have found in posting is how many of us are beating the times the docs give us – I call it my sell-by date and that really spurs me on for future patients. They will get there but in the meantime we have to get on with our lives with hopefully improved quality as we go along. It sounds like we are all up for the challenge – Tom, never could your phrase of onwards and upwards be so appropriate. Well done that man!
Love to you all, Gaye xx
Dear Gaye
I echoe what everyone else has said. Your posts have been very encouraging to me, anewcomer to all this. Bless you.
Like you say, it is so good that so many of you are beating your "sell by dates"!!! I will never forget how I felt, when diagnosed in hospital, by an almost casual remark, and then looked on the TV web site and it said 2-5 yrs tops! You are all right, many of the sites are so out of date! I hadn't found this site then!
I feel so grateful to those who go before me and your willingness to shar your experiences for our good, and test new regimes. all this, I'm sure will increase our "sell by dates"!! For this Faye, and others, I will be eternally grateful.
Lots of love.
Mavis
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