Hi
Can you see if you can arrange for either a Macmillan nurse or a counsellor to visit him to discuss his views?
I am sure after so much prodding and poking he is thoroughly fed up with medical matters, but maybe a bit of time may give him space to think clearly.
He is lucky to have your support. I hope you are both strong to support each other through whatever he decides. Ultimately it is his decision and whatever he decides, he needs to know you will be there, even if if breaks your heart. it’s breaking his too, but he will need to feel in control.
Good luck
You may want to post a separate thread for more replies.
Hi Everyone
It is my husbadn who suffers the MM not me, I’m just here for the ride!!! We see 2 consultants in 2 hospitals – the Royal Sussex County Hospital and the Royal Marsden. We are happy that we see them both, get them to talk to each other and to us, and formulate a plan of action.
I am absolutely with Dusk, Eve and everyone else here who has said that it’s very important to speak up for yourself to the doctors – no matter how hard it may be, and how difficult it feels to see beyond the white coat.
I am sure our doctors think of me as possibly a pain, but I am the one who wants to know things, and to formulate a plan, and to get things moving, and to know what is what, and I am the one who tells them how my husband is feeling, when perhaps he is more reticent! I’m not a complete she-devil I promise, but my inner mother bear comes out quite frequently when it comes to my family.
I am sorry Dusk that you are still not comfortable here. I beleive you are relatively new to the forum, adn I think you make a valuable contribution to the board. I certainly would not think you lack detailed knowledge of myeloma, but we all lack detailed knowledge of each other’s positions, thoughts, feelings and disease, that’s one of the “beauties” of MM that every one is different. I think everyone here tries to write from the personal, and if anyone takes comfort, or use from that, that is great. I don’t think people try to extrapolate further than that unless specifically asked.
You seem very forthright, and that is great. However, in type, it is difficult to guage tone, or get visual clues, so sometimes posts which are meant one way can be read as hectoring, or trying to impose our own views on the group as a whole. My husband is always telling me to pick up the phone can call people instead of emailing or texting, as written correspondence can so quickly and easily degenerate into arguments (ususally with my sister!)
I wonder whether in sharing your personal experience and expressing your dissatisfaction in the way you have, it comes accross as a general criticism of the NHS which is contrary to the experience most, but not all, have had.
As sufferers, or as carers, we need to feel confidence in our doctors, and, in the fact that they care deeply for their patients. We perhaps need to protect that relationship as the MM journey is hopefully a long one, and we need to feel they are by our sides the whole way.
By all means, rant about inadequacies, publicise failings, and the whole group will rally to your cause. But please, please note that we are all here to help each other, and emotions can be quite fragile here, and we need to all be gentle with each other. Those who have been here a long time are a wonderful wonderful source of information, comfort and hope, and I dearly hope you will stay around to share in that.
I can’t speak for anyone else, but I’d like you to stay, and hope you feel you can.
fiona
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!!
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.
Hi
My husband was diagnosed after snapping his femur do the first few months were spent coping with that as well as the diagnosis and chemo etc. he had CTD then SCT but relapsed after a year. He didn’t work the first few months but has been full time since 3 months after the SCT. I spent the first 3 weeks by his hospital bedside and again when he was in hospital after SCT.
I still work full time. My employer has been fantastic letting me take the time off without taking it as holiday. They also let me have the time for all hospital appointments. As a result they’ve “bought” me. The loyalty and trust they showed will be paid back in spades when I can.
I don’t want to stop working and I think it’d be a bad move if either of us did. It’s not a battle. We feel it’s a marathon and we need to stay normal as much and as long as possible, so that MM doesn’t take over our lives more than it has already.
Whatever you decide, good luck. Can you ask for a bit of compassionate leave to consider your future?
Hi
I echo what's been said. Nobody can predict. We hoped for longer but got only 12 months, but in the hospital we met someone who was in for his second SCT after 16 years. Even with only 12 months I think we'd do it again if we get the chance and in the meantime we had a wonderful drug free summer.
Hi
i felt i had to reply too. I too have a young(ish) family – my children are 8 and 11. My husband was diagnosed 18 months ago following a snapped femur, had 4 cycles of CTD and an auto transplant and we are jsut now starting on round 2 as he relapsed after a year.
I can only speak from personal experience here, but i think you need to ask your husband what he needs from you. I doubt he needs or even wants superwoman. he wants his wife there supporting him and the family. it is really really hard to watch someone you love go through this and to feel so powerless, but i am sure your love and care for him is doing him the world of good.
throughout the last year and a bit i have been told by various people (who have had the wonderful good fortune never to be put in our position) that i have been brave. stuff brave, i'm just getting on with it. with small children it is impossible to pull the covers over your head and give in. it does nobody any good to wallow in self pity. i don't mean to be unsympathetic at all – quite the reverse.
i have had days where it has been hard to get out of bed, i have had times where only very loud music in the car can drown the sobs but…. you only have a finite amount of energy. Decide how you are going to use that best.
Do not be afraid to ask for help. others will want to help. there will be many friends wondering what they can do to help you – let them. it eases the burden on you, and in a strange way it helps your friends to do something.
and never underestimat the power of a good cup of tea / glass of wine / bar of chocolate / belly laugh with friends.
and good luck xxx
Thank you Ellen, someone for him to talk to would be very helpful. How can I arrange this? Can you email
me directly?
Thank you x
Thank you do much for your reply,
The docs are keen to get cracking on treatment with velcade now, they don't want to wait until it gets worse. I'm not sure why they're not monitoring fora bit, I think it's because he is otherwise healthy so they see no point waiting. I guess we'll have to pass on the curcumi this time.
Hi
I saw you had 105 views and no replies. I wonder if this is because nobody can tell you for sure what the doctors are going to say except them. If you spend all your time between now and then worrying, you'll ahve no energy left to listen and take in what is being said.
Worrying is natural, but entirely wasteful. You can't change a thing with it, but you can change the envirnment around you and your father in law. That's not to say you should plaster a fake smile on your face and pretend you're not worried, but acknowledge it, and then get on with the important things like preparing your questions etc.
If it is bad news and it's come back, you need to find out what his options are. Will they start treatment immediately, or will they wait? What would be the advantages / disadvantages of either course of action?
Take a pen and paper and write down what you are told.
Good luck x
Thank you Eve, I hope I am, but just in case, at least in the picture i'm a princess!
I'm not going to offer commiserations as you've said you don't want those, but i'd just like to say that i am grateful you have posted as much as you have and as honestly as you have.
I hope you get the care and support you deserve. x
Eve, please don't give up.
You do NOT come across as moaning or complaining at all. I wish you didn't have to post here, I wish none did, but please stay and post what you want.
My husband was diagnosed a year and a bit ago, and so far so good. But it won't always be, and I know i shall be railing and wailing, and it is good to know that i won't be the first, and won't be the last either.
You speak as you feel, and I think your posts do help others as you describe the reality and frustrations of this horrible disease.
I think if this forum were relentlessly positive it would defeat the purpose of support for those who need it. It's uplifting to see the care here, especially when this nasty disease means that the reality is hard to bear.
x
Hi
Sorry, I really didn't mean to cause offence, if I did.
I am full of admiration at how my husband has coped over the last year since diagnosis. He's had a relatively good journey so far as he is in full remission for now after CTD and SCT. I know I could not have coped as well as I am told i have without him.
And again i'd like to thank you for highlighting carers.
Hi
I am a carer, and MM wife. I just wanted to say thank you for your kind words.
I started writing a big long reply, but in the end it comes down to – you suffer, we suffer, this is a horrible disease. It helps to have a companion to hold our hands and make us laugh along the way, and i know i couldn't possibly care and support my husband without his care and support right back for me and our family.
Hi
I would persevere with Macmillan. My husband got a referral to them through his consultant. Speak to his consultant's secretary / nurse manager / assistant – whoever you need to. It may also be possible if your hospital has a cancer centre that they will have Macmillan counsellors attached and can give you a direct number. Good Luck.
