This topic contains 39 replies, has 15 voices, and was last updated by 
eve 10 years, 12 months ago.
Hi Dai
It's not that long ago I was saying to you,that you were going along one branch of the tree and Slim along another, how wrong could I be, trying t be positive,I could have lost him that first year and here we are 2 1/2 years later ,we did a lot of reminiscing last night,things we use to do !!!! Only out for 1 1/2 hours,he could only manage a few mouthful s kept apologising ,to me and the waitress ,so as you can guess Slim went to bed and I had a bottle of wine for company,it was a good bottle wasted on me.(time to pay the price ) got a whopper of a head ache should no better!!!!
We're Janet is concerned,if you can manage it get down on your knees and grovel,what keeps Janet going is you,if you are ok she,s ok,the sad fact is carers worry so much about the people we love.Stay positive and she will be right beside you.
Keith as you say has always been not far away from you,so it does hit home,Slims been taking over people in front in terms of options,an some like Andy,just want the chance of SCT.we do not know why it effects people differently ,but one thing we do know,is if you remain positive it does help to keep you going.
When the news of Keith came,I wondered how hard it would hit you,I think we just have to enjoy what we have now,and be as positive as we can,my job is to make sure Slim gets the best treatment available to him,and enjoy what ever time there is.
I am dreading all the time we will have to spend at hospitals,they rang up with an appointment for the 4th we have one on the 7th,makes sense to combine appointments same department.but I think e have just become numbers to be slotted in.!,,!!!
There's a good early morning ramble,helps sometimes,when positive is no longer in your dictionary . Love Eve
Dear Dai and Eve
You are both so right, since my relapse I have felt that the elephant has had to be addressed directly, as I feel it walks into the room with me. If people do not say hello to it it and ask it how it is, gets bigger and bigger until I find it sitting on my chest and I have to talk about its feelings and deflate it a bit. What sort of company does that make me? Some people deal with it well and others do not , I give some of those people a bit of a wide berth now. I have had a long chat to my daughter recently, following the episode with the boots, but my son has exams now? What do I say to him? I've elected to say only that my drugs have changed and let him ask the questions if he thinks of them, what I want to do is hug him hard and tell him how bl**dy sad I am. As for my husband… He puts up with so much… Next for deification I think
Keep on holding fast Dai and Eve we need to hear how you go.
Love Helen
I am pleased this little thread has opened to a large one . Thanks to you Dai were would we be without you,
When Slim came out of remission, it just seemed if I could not be open about it and slipped it into some ones post.as Andy says you start not posting,it seems all doom and gloom,but this is the time you need opinions around you ,this Elephant in the room,has become not so much about death, but for me living with the knowledge of it,if we on here fail to talk about it,how can we talk to family about it.????
I do not know the answer,s I am not talking about arrangements,I am talking about a new journey,as I do believe the best shot at Myeloma is SCT.,once it fails as in Slims case,practically over a year of CDT then Velcade to get to SCT then get 6 months,you have to be realistic , and I hope by admitting it on here I do not upset anyone!! We are not giving up, just accepting things are different . Love Eve
Good luck and Good health to you all.
But please remember how long you lived is not so important as how well you lived, how much you and those around you enjoyed your life and the legacy you left behind
Stephen died last September, young, needed and missed by all who loved him.
Please don't feel as though it is all doom and gloom Eve but "seize the day" Every single day that you have with Slim is wonderful. I wish I could remember every second (yes including disagreements. Stubborn beast that Stephen was)
None of us know when we will go. Death and taxes are the only guaranteed thing in this life.
There never were any elephants in the room in this house. Stephen was always upfront with mm to anybody that asked. Glossed over "how long" and got on with it
I always had a terrible longing for "just as many days is as possible please with Stephen".
I have no idea if it is better to have some sort of forecast as to when your life will end, or the knock on the door telling you that there has been an accident ???
Personally I will be eternally grateful that I was there at his end, he was the same person that I had always known and it wasn't a knock on the door.
I miss him every minute but am glad that he went without pain, was himself, was not fearful and just "Stephen" signing out.
Cross?? Oh yes with him (57 how DARE you.) and life. I could write paragraphs on my crossness. I know that we all have to go on when your soulmate dies but it is not easy.
Like you Eve I hope I haven't upset anyone Love from Gill xxx
Hi Gill and Eve, I for one am not upset by your posts. I read them as I would read my wife's posts in the future if you can understand what I mean. I have said to Mo she must carry on and live a another life and when with luck she kisses my great Grandsons/daughters head I will be there, my spirit will not leave her side. And, I am sure, that Slim and Stephen are by yours, cannot help when the sink gets blocked but they can have a chuckle as you try to fix it 😀 😀
kindest regards – vasbyte ladies
David
Hey Ladies and Gentlemen
The Elephant nor its nor its comments cant do me or anyone any harm, I like most if not all of us understand whats looming up am afraid.
Carry on you lot 😀
Love Tom Onwards and Upwards x
Hi Helen
I can completely understand your comments about how much you should tell your son about your myeloma relapse especially with his forthcoming exams. Whilst I was going through CTD treatment, my one son was revising and taking his AS levels and the other his A level retakes.
The eldest son was absolutely fine with his A levels, mainly because he had just found a new girlfriend and his thoughts were distracted elsewhere. However, my other son picked up on the stress and emotions of the family and unfortunately he performed quite badly in his AS exams. Straight after his results were announced, his school contacted us stating they were reviewing whether he would be allowed to continue in his final year to take his A levels. They had wrongly assumed he had not worked sufficiently hard enough with his revision.
I wrote to the Headmaster explaining our personal difficulties and the school responded well suggesting arrangements would be put in place to support and monitor him on a weekly basis throughout his final A levels. Following good support and encouragement from the school and together with the fact he could see me recovering well after STC, he achieved great A level results.
With hindsight, I wish I had discussed the situation earlier with the relevant teachers, just in case either lad showed any difficulties with their studies.
Jan x
Dear Jan
They never become less worry, even now I wonder if I should just tell him, but since he insisted on going off to uni 4 weeks after my SCT, as a mature? Student ( he had 3 gap years!). He says he told his tutors but is such an independent creature, I have to just let him go. He knows that my numbers are rising and what it means and he pops home now and again when he runs out of money or toothpaste or pants. He sometimes asks how I am and gives me a cuddle then goes off and does his music. I'm only hoping his emotions are translated through his art and he is comfortable with it all. Boys!!
Are your sons doing ok now?
Love Helen
Hi Helen
Like you, our one son started uni 4 weeks after my SCT and the other a year later. We hardly see them now they are living away from home, until they return for holiday periods or phone us for money, help with accommodation problems or lifts back home.
You are right, you never seem to stop worrying about them. You try to offer them support as young adults, but it's a fine line between help and them thinking you are interfering with their lives. Being typical boys, my two sons find it hard to express their feelings and emotions. They find talking through problems and their concerns to be a useless activity.
Because dealing with cancer has been a completely new scenario for our family, I often think whether personal or family counselling would have helped to reduce the trauma and it's effects on our family life. On the Myeloma Beacon website, a recent German study showed around half of 114 newly diagnosed myeloma patients indicated they desired support from a variety of avenues including support groups, relaxation and psychological counselling. Over 24% admitted to signs of depression and 4% anxiety. The study recommended a choice of psychosocial interventions be offered to myeloma patients.
Jan x
Hi Jan
I wonder how many would take it up!!!
Everyone can do fact but it,s just paper work or if you like a survey .
The Myeloma world is hear on this forum,because it tells you about how people are living with it now,how family react. My daughters do not get involved with the medical side,if I asked for help I would get it from them, I suppose there attitude is mum can cope,they pick up on sadness in my voice,so practice of happy mum comes into play on phone calls.
I think to put a burden on to family is wrong,the tendency is they try to help by giving reassurance that things will get better, and it is not,it does not mean you give up,you remain as positive and hope new chemo,s or treatments are in the pipe line,but specially grandchildren have to be prepared and accept that death is going to happen in the future,it should be spoken about not just about arrangements,but everyday things,if we have to have a big fat elephant in the room,it has to be talked about.
Love Eve
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