This topic contains 39 replies, has 15 voices, and was last updated by 
eve 11 years, 6 months ago.
Lol Eve am sure only you could get away with this one Lol al probaly get told orf lol xxx
Love Tom xxxx Lol
Thank you Tom and Eve,
You managed to make me laugh after being very sad reading of the loss of Tinkerbell.
This site is everything to me,imformative, funny, sad, helpful to know the way I am sometimes feeling, be it good or bad is part of the MM journey.
I went with my husband the other evening to a support group where for the first time I met others face to face who know exactly how I feel and the journey we have all been through. I only wish there was such a group nearer to me, (we drove an hour and fifteen minutes to get to the meeting.)
As for the elephant in the room, I want to talk but find others don't!
I am thankful that I am now almost a year post SCT, my 1st birthday being 22nd March 2013. Like others have said, friends comment on how well I look, well compared to July 2011 when I was diagnosed and almost died of organ failure I must look much better!:-)
But although I am very positive I do sometimes find myself crying real tears quietly to myself, like today sitting in Waitrose cafe while my hubby ordered our lunch, then I wiped away the tears and smiled for him when he came over to me with our order.
Eve, I too had a lady come over to me last wednesday at the day centre to play with and comment on my lovely head of very curly hair ! My eyebrows never really came back so I now have to pencil them in!!!same with my leg hairs – except I don't pencil them in, ha ha :-)!!! Strange how the chemo prior to SCT has left us.
As Andy said – everyday is a gift.
Babs
They should let me in the under fifties,then I could really let rip,and I feel like it after the day we have had,people seem to think because you have grey hair,you should not have an opinion ,and being 5 foot nothing does not help.
Just so angry,have had a few beer,s to relax me,but its not working.will have to try vodka,works for you Tom.
Babs,I know how you feel,I just could not phone my kids with the bad news,so I face booked a private message in our family group,but I sat here later on with tears streaming down my face with anger,how a consultant can say the treatments are not gruelling is beyond me,I felt like telling him to try it.Slim asked why I was crying,he said I am not dead yet.Eve
Dear Babs and Eve and Dai as its your thread
You both made me laugh today, not something I've felt like doing for the last few weeks, I'm afraid I'm avoiding looking at the elephant at the minute!
With all this talk about hair again, you saved me some bother …. as i was thinking of pulling up my 'keeping up appearances' thread yesterday, to give an update for the girls ( and boys if they are interested!). on how I have just had to shave my legs for the first time since SCT ! As they have just grown back! And how my next door neighbours mother, whom I see infrequently, didn't recognise me as I looked so much younger than the last time she saw me, so….. Clearly an SCT makes one look well and youthful. I'm away on holiday on Sunday , with smooth legs.
Love Helen
Hi Helen.
Can't say I've ever felt the need to shave my legs not even for Red Nose Day 😉 as for curly hair well! Not having been through SCT I guess that's one treat I'm going to miss out on. :-/ I remember having hair – just – got some old b&w photos somewhere showing me with hair though I seem to recall I was also running around in shorts at the time. I've saved a fortune over the years on shampoo – every cloud has a silver lining 😀
Andy xxx
Hi Andy
Ha ha, you would have laughed at my son then, he went to a fancy dress party recently ….. As the genie from the cartoon Aladdin……. He is very large! Anyway the girls shaved and waxed his head, arms, legs, neck and dear knows where else……. I didn't ask……. then they painted him with blue latex paint … It was very painful he said, however he had the undivided attention of the girls while they did it so I guess it served its purpose ….
We must meet for coffee again
Love Helen
Getting back on topic 😀 😀
When I was originally diagnosed in July 2009 I asked for a prognosis. I specifically said I did not want any bull sh*t I had things I must do for my wife and I want to know what time I realistically had left. What is more I wanted only useful time, time I could do things in and not time spent in a stupor. The answer came back max 3 years, you might get longer but you have already had Myeloma for 2 years! My wife, Sister-in-Law and her husband were there at the time. I joined this site at about that time.
I decided that I was not going to be the ?Elephant in the room?. I was going to talk about MY TERMINAL ILLNESS and have a laugh and a joke as well. I do not go on about symptoms when asked how I am, my stock reply has and is ?I am still standing?, very few are really interested in the nitty gritty, and if they really want to know, and are not just being polite, I tell them but that is rare. One of the first jokes I started was about building my own coffin; this was natural because I have always been a bit of a DIY man. We had some great laughs about coffin bottoms dropping out, hands falling out on the shoulders of the Bearers even the grandchildren got involved in Granddad?s final journey.
It was such an ice breaker that I decided to actually make my own coffin. The family are involved, my son is doing the artwork for the murals on the sides, my daughter has made a lovely family tree picture (like apples on a tree) for the top and my wife has made a beautiful handmade cushion for my head with a cross stitch picture of my two dogs on it. The Grandchildren are doing Hand Labels (like you would see on an old trunk) with messages to stick on the coffin at the service. However the whole thing has snowballed and everybody now knows about my coffin and it is a great source of merriment amongst friends and family alike. I know we all cannot do this but I really think it was the best thing I could have done and I am so pleased with the result. I am treated like a human being, I do not see people whispering in corners I am asked how the coffin is coming on in a joking manner and there simply is not an elephant anywhere to be seen. I even had an offer from a bricklayer friend to make me one in the best bricks.
Just one example before I close this long missive. Last week my family were all sitting down for Sunday dinner. My Grandson inquired what material I was going to use on the inside of my coffin, I have started the final build. Red leather I replied ? Nannies? favourite colour. ?You are going out in style then? was the reply. The conversation then degenerated into jokes about using it as a carriage with horses and the Grandchildren riding atop to the grave which I will not go into.
I love elephants and we have over 30 ornamental ones we have collected over the years from all around the world. So much so that I decided that the background colour of my coffin would be Ivory. But there are no ?Elephants? in my life. Now there is a nice contradiction to finish on!
Kindest regards to all ? Vasbyte
David
p.s. Although I expect to finish my coffin by the end of April I am not planning on using it for some time yet.
What a lovely post David Love from Gillxx
Hi David
What a great post 😀 yes my family and friends (not all though) cope with my MM in a good bantered way and throw the jokes in 😀
am sure am due an update of photo's David? and the pillow looks great your young lady wife did a top job on it.
Am pleased you say you are not rushing into useing the coffin for many a year to come but as and when its needed it wil be the poshest one around 😀
Vasbyte and Onwards and Upwards
Tom
I too often read pat's tweets on twitter. Henry told me a while ago that he has come to terms with his MM and knows it will come back and that he is not the same man he was before treatment. He said I am his rock and got him through his treatment and that me and the children are all that he lives for. We have made adjustments to our life. Henry does suffer with 'foggy brain' and 'neuropathy' but if you didn't know he had MM you would think he looked well. I think the normally of going to work etc has helped him get through it. I just dread the thought of it coming back and it's the not knowing. But I keep a smiley face on and I do fuss over him too much and if anyone makes a comment that I fuss too much they get the sharp end of my tongue:) right it's time the old man went to bed. Take care love sarah xx
Just came across this thread because it had started and lay dormant before I had joined the site. There are elephants around, big ones as well but I think what has helped with MM is that I've always had a bit of a big mouth and prefer to have things in the open. Friends and work colleagues both know that I have suffered two bouts of depression in the past (now that is an Elephant in the room).
I'm also a bit of a sod at times because I do things deliberately either to embaress or judge reactions. Some of this comes from 9 years in the RAF. Through luck I missed going to the Falklands and left just a few months before the start of the first Gulf war, I did know some good people who died in accidents. Training for war including trying to survive major injury also helps make you think about your own mortality and future survival. The biggest thing you gain which helps now is gallows humour and pragmatism. The humour helps with the managing, the pragmatism gives a matter of fact attitude. Yesterday I spoke to another parent at our daughter's Kita (German nursery). In a matter of fact way I told him the basic facts – it's terminal, it's in me having a wail of a time. Sufferers look fine, normal but inside it's pretty crappy. As he said, other people's problems become insignificant in comparison.
So as to the Elephant, our attitude is to go up to it and say to everyone else in the room "Look whats here". If they don't like it, they know where the door is. Those that stay I believe will be with us till the end and with my wife afterwards.
Only since my shock diagnosis of myeloma three years ago, I've realised that I have needed to talk about the elephant in the room in order to ensure my partner knows my thoughts about my wishes. However, it's not just one conversation, but an on going series of little discussions and comments
I must admit most of the discussions have come about since losing three parents and a close aunt over the last 3 years. Trying to make funeral arrangements without knowing the desires of individuals can prove very painful for the remaining relatives if nothing has been discussed beforehand. When you are upset and trying to accept the actual death, it is extremely hard to rationally discuss such issues as where to hold the service, who to invite and where to scatter the ashes, what music/readings for the service, where to find a will and important documents. After seeing what clothes my husband picked for his mom to wear at her cremation made me realise he was going to need some help with my choice of clothes! Even issues such as whether to wear a wedding ring or pass it onto other family members can cause a huge emotional debate if left to the last minute.
We all deal with the elephant in the room so differently. Some of us like to plan and organise everything beforehand others of us don't like to think about the matter and can't be bothered about any of the arrangements. But as my mom always used to say, "whatever your age, you always feel it's never the right time to die".
Jan x
Yes, you are so right Jan.
I have found the same,it is really a series of little things that are said and on passed on. My wife actually asked what I wanted doing with my rings actually. But there are other silly little (you might say) things. For instance my Granddaughter (9 years of age)went to a great deal of trouble to pick me out a little stuffed teddy to go on my key ring (it is about 4 inches long). It was a lovely thought, she had obviously picked up in the adults conversation that I was "losing things". I was so touched I said I would carry it everywhere with me. So I left an instruction with my wife that it is to be in my hands at the time of burial. Just another little thing that will make my day perfect!
kindest regards – vasbyte
David
Hi Everyone
Tonight Slim and myself went out for a meal, to celebrate our 2nd wedding anniversary ,this one occasion when the elephant should be locked away in the cupboard , 2 years ago getting married in ITU, no honey moon,the first anniversary Matty my grandson died two days before,plus Slim was in hospital waiting SCT. So everything low key for second anniversary .!!!
That elephant has a lot to answer!!!! He interferes in ordinary things, like a simple meal out ,I think I am going to have to shoot it!! It is getting in the way,of being able to pretend that this is not happening .Eve
Hi Eve,
You are quite right, the Elephant interferes far too often, especially when you ate running out of options.
I think he enters the room as a baby elephant, something akin to Dumbo without the oversized ears about the time of the relapse from the first (for some of us only) SCT, That's when you take note of the treatments and options left to you. You see Velcade – Revlimid – Kitchen Sink, and start looking them up to gain knowledge not only of the process of the treatments but also and perhaps more important, how long you can expect to get from them. You start to take note of the median, the average expected length of time for each patient… Velcade very little, put there in order to stamp the MM into submission in readiness for SCT 2… as a stand alone it is not a long term viable treatment. Revlimid on the other hand, for those that take to it, can give a median of 30 months and sometimes considerably more but there is no remission as such… it works while you are on it and you are on it until you fail.
The Kitchen Sink as I call it, is whatever your consultant can come up with… Bendamustine is the usual choice because it is as old as the hills and relatively very cheap. But now there are the new generation of newly licensed treatments, starting with Kyprolis (Carfilzomib) and Pomalyst (Pomalidomide) with a few others looking to come online in 2014/15. There are a few trials for Kyprolis with a few more in the pipeline for Pomalyst but it will take the results of these trials before Europe and specifically the UK consider them fit for licensing as treatments here. So if you can't get on one of these trials in the next 12 months or so you look like having to wait until Circa 2015 for general release… if you can survive that long… I know I won't.
I am getting a bit frayed around the edges, even if I do 'look good'. I noted that Ellen posted regarding Keith earlier today… as it was to pass on the gratitude for our support from Sue and Keith but I expected the worst… and I didn't think I could take it… but I have never been a coward, so I opened the post and took note of the message, even if it is just a postponement of the inevitable for our friend Keith. In this case the elephant, a much grown version of Dumbo, had left the room and climbed inside my head. It took me quite a few hours to coax him out and back into the room where I could see him, address him and keep him in check.
Its Janet's birthday tomorrow and I am determined that tomorrow remains a MM free day, apart from a few small care issues. On Thursday she mentioned something about Easter 2014, I forget exactly what now but I said that I wouldn't be around to see whatever it was. Janet asked why not and I said without a place on the trials I would be long gone before then… my mind was fixed on Keith, until recently he was just 1 Cycle ahead of me on Bendamustine, and it was my Dex day, with the Dex helping me to blurt it out in a stark manner most unlike me. Janet looked truly shocked and I felt like a pig… but I don't know what she really expected… even though we talk about things quite openly the elephant was most certainly in the room that afternoon and he was trumpeting bad news for all he was worth,
Still, I am being positive… but that positivity is firmly embedded on a place on MUK 5, if or when it reaches Nottingham. Bendamustine is proving ever more difficult to get 2 full infusions per Cycle with the resulting slowing down of the light chain fall and all because they can't get my bloods to rise sufficiently between cycles… I am back in on Monday after a dreadful 2 weeks 'rest'… I am fully expecting them to say I need an extra week's postponement to get my Neuts up to a practical level in order to get a full treatment in at the start of Cycle 5. If so I will be demanding a course of GCSF to take home with me… unless there is news about MUK 5 in which case we will stop treatment of Bendamustine in order to qualify for the trial which determines that there is a gap between treatments.
Anyway, enough rambling for now. 🙂
Dai.
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