[eveParticipant]

The last month we have been on a big roller coaster tide,so many lows and some highs,my stomach feels if it’s in a knot.
After seeing Slims consultant and being told there is no more treatment they can give him only support with platelets and bloods,the roller coaster went on a free fall,cannot say we were scared or even upset,we just new some bad news was coming.I always thought well there are other drugs in the pipe line,but it seems after questioning the consultant,his answer was no,he did recommend a second opinion,which we have taken up.

We do realise there are no promises or guaranties,but when you are told,we can do nothing,do you go home and wait to die!!!
Well Slims attitude is I am not ready to die,so what we need is hope,and Peggy answered my question on side effects concerning platelets and gave us hope,thanks again Peggy if you are reading this.

slim starts treatment next week,a package of chemo,platelets,I will let you know how he gets on,so everyone out there going through a difficult time,never give up hope. Eve

[CarolsymonsParticipant]

Bless you Eve, I do hope things work out but do go to seek that second opinion. I have read some miraculous stories on the Facebook Myeloma Support Group page from people who have had a second opinion, received new treatments and continue to thrive. Don’t give up hope!

Carol

[PhilipandfionaParticipant]

Oh Eve, I’m so sorry. The roller coaster’s not over yet and your still strapped in. I hope you get a gentle ride for a while.
I’ve typed and deleted many responses to you and can’t find the right words so I shall just say I am thinking of you both and sending you love.

[eveParticipant]

Hi Fiona
How are things going!!! Is hubby responding to new treatment,or are you still at watch and wait,because you have not been posting I have lost track a bit,he came out of remission!!!???
Please correct me if I am wrong,the last 6 months have flown by,just when you do not want them too.

You must stop typing and delating response !!! We expected this,but we dis think he would be offered some form of treatment even if it was just maintenance .??
The strange thing is we are not giving up,but there is no emotion about it,I would rather it was explained on here,so people will have some inclination,does that sound stupid???.

We are not in denial or thinking miracles will happen,just not giving into it,Slims not depressed,he was a bit emotional when he was offered the chance of treatment ,do not expect much different from a roughy toughy marine,they do tend to have a different attitude to life in general.
So Fiona I would rather you say it as it is,not try to think of a nice way to put it,all said in the nicest possibly way!!
Myeloma stays out of our lounge except when I have to do paper work,the day varies to Slims condition even with this biting wind we walk the dog,wish he was able to sleep better!!

Hope is the key word!! And a new consultant who is prepared to not give up on Slim,could not ask for more in the circumstances.

Why spoil today worrying about tomorrow. Love Eve

[DizzylizParticipant]

Morning Eve,

Oh eve I’ve always admired your written word and your sayings ( say it as it is) I must admit I’m rubbish! I’m so sorry to hear slims prognosis and glad your not giving into this ***** MM
And getting a second opinion, I’d certainly do the same if kev were in the same situation, Eve you come across as a very strong and together person and I as kevs carer take strength from this forum and people like yourself.

Keep well, love to you both

Liz & kev xx

[eveParticipant]

Hi Liz and Kevin

Thank you for your kind words,one of the reasons I posted this was for people to have an incite,because by the time you get to are position,all the upset and fear has gone.i suppose it’s knowing the situation before it’s confirmed,you do not ask,but wait to be told.
The bad thing about that is,since coming off Revilimide the Myeloma has increased,if he had been given a lower does and been supported with platelets,may be the story would be different!! I think when you have a patient that is unusual like Slim,calls for unusual treatment,you need a consultant who is prepared to think outside the usual format.
There is always that chance with people who have lots of Chemo having problems with cells,there is a disease called MDS,that can be caused by chemo.although Slims is similar MDS has not a word that the consultant used.

Having people like Dai, Min who looked after her husband,Sharon ,and many many more,helped me over a period of three years,must include the people who are still with us Tom David and Andy,and all the people who sailed through treatment.
We are all very lucky to have a forum like this,long may it continue,Eve

[PhilipandfionaParticipant]

Hi eve,
Thanks for asking. He’s had 3 full cycles of CVD and is responding well, he’s been allowed to drop the cyclo and reduce the dex till the end of cycle 4.
We’ve had a bit of a difference of opinion between the doctors: one set wanted him to go straight to an allo, one said stay on drugs. We’ve compromised in that he’s going to have the next batch of velcade one week on one week off which will take us to the end of October / November. We will reevaluate then and see if he goes straight to Revlimid, has a break or needs the allo then.
The positive is that he responds well to the treatment, but it’s a tenacious little bugged and pops back too quick!
We’ve done the paperwork for the Anthony Nolan trust for when the time comes, and we know it will, we’re just hoping to delay pressing that nuclear button for as long as possible.
We have our emotional roller coaster too, some days we dare to think more than a month or two ahead, others we book a brief holiday to see the alps in winter – just in case he can’t do it next year! So this blasted disease has given us a holiday we wouldn’t otherwise have booked, so as is said here lots….every day is a gift and we’re making the most of them.
On a different note my 12 yr old daughter almost burst my heart with pride. She’d had a bit of bullying in her old school and worried it was coming back and people were thinking she was being a bit of a drama queen, so she stood in the front of her class and told everyone her dad has a blood cancer called myeloma and sometimes she’s sad about it so if she is, she’s not making it up, but if anyone had questions she’d happily talk to them.
Atta girl!!

[eveParticipant]

Hi Fiona

Well it is really nice to catch up with you princess lol !!!

It is a hard decision when it comes to an Allo ,if you are on Facebook and go into a private group called UK MYELOMA SUPPORT GROUP, Jet has put up some stuff on Allo plus there is a separate group,!!! So lots of information, Jet had hers over a year ago she only got 5 months with her own Stem Cells,but she is going from strength to strength with her Allo, might be worth getting in touch with her, I believe she has just contacted Ellen to be a help for anyone going through the same, I hope this is helpful,Jet is very factual.

Your daughter has backbone,good on her!!!, my own granddaughter has had a few problems in school since her brother died,the school look after her,but from being in a group of friends she has slowly been excluded,I think they grow up very quickly,and no longer fit in, just as a person with Myeloma,except as an adult you can deal with it. So it’s a good thing she can face it head on,it will hold her in good stead as time goes on,out of adversity a lesson is always learnt. Wishing you well Love Eve

[janwParticipant]

Hi Eve,

When I read your comments, like others have mentioned, I just didn’t know what to say. I am so sorry this has happened. I’m really sad for you both. It must be so difficult for the both of you trying to live relatively normal lives in such an abnormal situation. I hope Slim is able to live each day as well as he can to best fulfil his wishes. You have such a hard job of caring and supporting Slim through the last stages of his roller coaster journey as well as dealing with your own emotions.

I know I previously mentioned the benefits of remembering and recording your memories of your life spent together and in this week’s Mail on Sunday, there was an interesting article written by a lady who has recently developed a free app entitled, RecordMeNow. Through personal experience and extensive research, she found whatever the circumstances of the death, relatives repeatedly confided an aching need to listen to the person’s voice and be told how they were loved and cherished. She found they also wanted insights to some basic questions, e.g. what makes you happy/sad/angry, what makes you proud, together with thoughts and advice to loved ones. Most memories passed onto family are of saintly qualities, whereas relatives wanted to know the good, bad and the ugly. The app provides a suggested 100 questions which serve as prompts for memories and advice aimed at providing a joyful essence of life, together with a keepsake for future generations. I thought you might be interested in taking a look at the RecordMeNow app.

Wishing you well.
Jan x

[eveParticipant]

Hi Jan

How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!

Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I have not spoken to him about it,watch this space you never know!!! I can see it could be a comfort to the person left behind.
We have both taken the attitude in the past,on all are travels we have never taken many photo,s that the memory,s belong to us and do not feel the need to share,or bore the kids for that matter!!
I do realise he is thinking about all the things he will miss,he would have loved to go back to NZ,so NZ is coming to us,Kiwi grand kids and daughter and husband coming over.so may be I can get a bit of a video going then,

Let me know how you are Jan?? How is your treatment going and what are the plans?? Love Eve

[eveParticipant]

Hi Carol

Sorry I thought I had replied to you,I have been following your SCT,and must admit you have done really well,must be the desire to get back to Australia !!!!
We have taken up the option of a second opinion and would recommend it to any one,even the experts have different opinions and views,I think it’s because Zmyeloma treatments are changing very quickly !I know from 3 years how quickly new treatments are coming on line,plus bringing some good and bad things with them.

I am also on the UK myeloma support on Facebook,much smaller group,not open for the world to see.
Say hello to Australia when you get there,we always said we would do the figure of 8 in a Motor home,and Slim wanted to dive the Barrier Reef,this illness does teach you not to put things off,or you will not do them. Wishing you a good return home Eve

[jmsmythParticipant]

Hi Eve

I don’t know how I missed your post. I’m so sorry to hear about Slim, I know you don’t like gushiness (is that a word – must look at a scrabble dictionary). Just want you to know I’m thinking of you both and hope you get second opinion soon. Slim is a lucky man to have you fighting on his side.

Love and prayers to you both
Love Jean x

[eveParticipant]

Hi Jean

You will never get away with Gushiness at Scrabble!!!! Miss playing but did not like the new format and I tend to use an I Pad,also lack concentration these days,so it’s jigsaw puzzles at the moment,it’s something we can do together.

We now go to the Royal Marsden in Surry,bit of a journey,but easier than going to central London.Started treatment last week and going well,Velcade was good for him last time.

So glad Franks doing well,have you been on another cruise or is that an old picture????
Make the most of it Jean,enjoy lots of holidays,and your lovely family.Love Eve

[jmsmythParticipant]

Hi Eve

Glad that Slimis getting treatment. Hope he gets something good out of it. I know more and more treatments are coming on line but let’s hope Nice Get their finger out soon. I play scrabble on my iPad. “Words with friends” I play with Elaine, Toms wife. To be honest it acts as a relief. I look forward to our games. I’m glad to hear that New Zealand is coming to visit you and Slim. Lots of photos and videos !!!!!. When are they coming.

Photo is of last cruise. We have booked one for May. Don’t like booking that far ahead but …… Franks bloods are good but phosphates and vitamin D are low and the meds make him feel very sick. she has referred him to a bio dr re something wrong with thyroid and then on Wednesday she wants him to see someone else. I have it recorded so will have a good listen and find out exactly what’s going on.

Take care of yourself Eve and love to Slim

Love Jean x

[eveParticipant]

Hi Jean

Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to milestones in his life.
daughter coming home in May from NZ and his birthday November.

The treatment is giving him some energy he has gone from hating Dex to looking forward to it,Velcade he does not mind as very little side effects,so even if we do not get the right result he seems to be benefiting from it.so that’s good news.

So glad to hear you are enjoying life,
Specially for you,I would not have let Frank watch the football,(Facebook) lol.love Eve

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