Hi Amanda
I think it is great that your mum does not need treatment yet. My husband was diagnosed in 2008 and was treated straight away because his mm was so virulent (sp?).
He is still here. He is 55 and is hoping that he gets "another year" 5 to 7 years would be wonderful for us
For every day we get I am grateful to some god or other and this from a heathen:-)
Stephen is so affected by the "bone rot" that mm brings that when he can get out of bed within 20 minutes of waking, geting coffee, cereal (oops I must be the idiot here. I SERVE BREAKFAST IN BED???) he walks the dogs. He comes back almost mobile but exhausted and faces the day.
I am not a carer just someone who married an idiot:-( that got ill. How dare he
Thanks for the tip about the health insurance Jean. We are hoping we will still be covered by our exisiting long term insurance policy. It was annoying to pay for MIA and then find we were already covered. Talk about over egging the pudding. Never mind it did mean peace of mind.
By the time Stephen's Velcade stint is drawing to the end Anya "new pup" will be inoculated, rabies protected and ready to go.
Heaven help us taking 2 monstors half way across France!!Gill
Hi Nigel
We tend to go to France for about 3-4 weeks at a time. We go to the Creuse (a very long journey) and feel that it is not practical to go while Stephen is on Velcade. I realise that it is probably different for you as you live in France I believe.
Regards Gill
PS to Bridget we no longer have a "puppy" she is known as the poo-pee I am sure you can guess why;-)
I'm so sorry to hear that you have lost your friend and companion. We have 2 Westies 1 is 2 and one 3 months but the thought of parting from either of them is horrid.
Dogs are not children nor human but yes they are part of your family and take a space in our lives and what a big dog sized hole there must be in your home at the moment.
There is a poem further down this page but a warning to all Do not read it unless you have a box of tissues and don't mind blubbing
Lend Me a Pup
I will lend to you for awhile,
a pup, God said,
For you to love him while he lives
and mourn for him when he's dead.
Maybe for twelve or fourteen years,
or maybe two or three
But will you, 'till I call him back,
take care of him for me.
He'll bring his charms to gladden you
and should his stay be brief,
you'll always have his memories
as solace for your grief.
I cannot promise he will stay,
since all from earth return
But there are lessons taught below
I want this pup to learn.
I've looked the whole world over
in search of teachers true
And from the folk that crowd's life's land
I have chosen you.
Now will you give him all your love
Nor think the labour vain,
Nor hate me when I come
to take my Pup back again.
I fancied that I heard them say
"Dear Lord Thy Will be Done,"
For all the joys this Pup will bring,
the risk of grief we'll run.
We'll shelter him with tenderness
We'll love him while we may
And for the happiness we've known
forever grateful stay
But should you call him back
much sooner than we've planned,
We'll brave the bitter grief that comes,
and try to understand.
If, by our love, we've managed,
your wishes to achieve
In memory of him we loved,
to help us while we grieve,
When our faithful bundle
departs this world of strife,
We'll have yet another Pup
and love him all his life.
I am so pleased our crossed fingers worked Good for You !!!
Hi Andy
My husband has mm and was diagnosed in 2008 aged 53. He had an SCT in the summer of 2009 after chemo had got his mm down to "hardly showing" He relapsed after 18 months and is going for a second SCT later this year. After seeing his consultant today we are aware that he will probably not get as long in remission as last time but he has decided to opt for the SCT anyway.
He was well all the way throught his first SCT (please all cross your fingers for the second)He had no infections and just got a bit bored with me nagging regarding his diet (neutropenic diet can get a bit boring)
As for putting off your SCT until the Autumn??? All I can say is that we have trusted Stephen's consultant all the way through. If you trust yours ask if a delay would harm your chances. If he says yes then my view would be what is more important "a very important event in August" or prolonging whatever you have left of your life?
Good luck and kind regards from Gill
When I Am Old is one of the many poems sayings etc that I have on my office cork board.
I think it scares my grown up kids to think I might get like that>:-)
Gill
Oops maybe I am
It is Stephen who is ill but probably me that needs the ambulance laughed so much I got a coughing fit and nearly choked!!! Makes my "wart on left thumb please remove" (yes junior surgeon removed thumb abolutely true) look pretty tame
Thanks for great fun gill xx
HERE'S ONE I MADE EARLIER 🙂 To add to the suggestions you have already had
My husband was in Kings College Hospital London in the summer of 2009 for his first SCT. We made a list of suggestions at the time of things that were quite handy to have but obviously it was geared for Kings and I am sure that other hospitals are different. We were lucky in so much that I was only a half hour train journey away but I know that others are miles and miles from family and friends and cannot just phone and say "can you bring me …."
Take in a sharp knife. You cannot have anything that is not peeled and sometimes the only thing you can eat is a chilled, peeled pear or a peach.
A desk top fan as it gets very hot and in Kings there were only 2 fans on the ward (there were 3 when Stephen came out and can I encourage all that can afford it to leave any fan that you take in so others may benefit)
Take in your own towels (the ones supplied were spotless but scratchy and did not smell of home)
Baby Wipes. The hygienic wipes with the puppy on the pack sting. You cannot have enough fragrance free baby wipes to use with loo paper.
Cut your hair very short before going into hospital If your mum can bite the bullet shave the whole lot!! It is hard for women but makes living for the weeks in hospital a great deal more comfortable. (Stephen had a hair shave party with the family the weekend before he was admitted to Kings and we all had a great time even if I did shed a few tears)
Stephen is going for a second transplant later this year and (tip for bearded men) He will shave his beard off this time as well as his hair. We never gave a thought to facial hair but his beard started to shed and he said it felt like little needles sticking into his face (you lot put up with enough without that as well)
Small ice cube trays. Everybody says that sucking ice before; during and after chemotherapy helps avoid mouth ulcers. (Stephen got none)
Small bottles of water one put in the ?munchkin? fridge?s ice box during the day will start to melt at night and means ice cold water can be sipped if you wake in the night with a very dry mouth
Small tins of fruit with ring pull tops to put in the fridge as a slice of ice cold soft peach etc helps a sore mouth/throat.
Corsodyl tooth paste (helps stop mouth problems). It was quite new when Stephen went in last time and the nurses were interested to see it. You do get mouthwash in Kings but Stephen used the Corsodyl as well
As everybody seems to go off the hospital food 😉 , tiny tins of tuna/sardines etc. (ring pull tops)
Individual wrapped hard cheeses (the type you buy in the supermarkets for children?s packed lunches)
(all the above are allowed on a neutropenic diet)
When people asked me what they could take in for Stephen I always answered a hard boiled egg that has been boiled for at least 10 minutes(neutropenic list again) and a newspaper
Something else to take in… salad cream sachets to go with the endless hard boiled eggs
If you your mum has a laptop take in DVDs as well as music. Audio books can be great as she may not be up to "reading" Stephen could not concentrate but having a story told to you can be quite nice.
If you are not already on it you may consider signing up to SKYPE I am a computer idiot but managed to get us there which meant the days I could not visit we could talk and see each other via the video link thingy.
Stephen is going back into Kings for a second transplant later this year and making this list has been a reminder for me. I hope it is some help to you and your mum. The best of luck to her. Do let us all know how she gets on
Kind regards Gill
Roz you must be psychic!! My daughter plus husband 2 children and new puppy came over for the day on Saturday (hectic but fun) I managed to get a few quiet moments with my daughter and we spoke about Stephen, obviously, mm and this site.
I mentioned you and Michael and asked Donna whether she thought you would like to hear from me or whether you would rather not be reminded. Her advice was a resounding yes to get in touch just to see how you are doing.
You are so right
Yesterday is history
Tomorrow is a mystery
So live for today
Great to hear from you, much love and good wishes from Gill xx
PS Min
Puppy (Anya) still gorgeous but sooo proud of mistakes!! Still squatting in front of us and being very pleased with herself.
We do shout "bad girl" and move her to her pee mat but neither Stephen nor I sound cross enough methinks. It is getting better though and she is a complete lovebug.
Luckily her "honoury aunty" (our 2 year old Westie, Echo) has not decided that dirty is good. She just sniffs at "mistake" and backs away
Gill xx
Hi All
Isn't it great that on a site that caters for a very unpleasent illness there can still be some fun.
I had forgotten all about liberty bodices. Mine had ribbons and I seem to remember that I had a "prettier one" for birthday parties etc (never seen but you knew it was your best one)
Gill xx
PS No wonder the under 50s got their own site with us lot talking like this:-)
Hi Ruth
What a horrid time you are going through. I am no expert but I will tell you about my husband. Stephen has mm, and had a Stem Cell Transplant in the summer of 2009. He may have a second one later this year.
I can only tell you what happened to Stephen when he had his Stem Cell Harvest and Transplant. Others may have a different experience and I know you will get many replies on this site from people offering advice and support.
Stephen was on a cocktail of drugs to boost his bone marrow/stem cells and then had a course of injections to make the little blighters come out and lurk in his blood. The harvest (sounds spooky doesn't it) consisted of attending the hospital as a day patient and being hooked up to a needle in the crook of each elbow (Yuck I hate needles) one side removed the blood, sent it into a cylinder, spun it off and separated the stem cells from the blood. The stem cells were then cleaned of as much of the cancer as possible and stored. Stephen spent time in Kings College Hospital (about 20 days) having his mm bad cells wiped out with chemo (this was when his immune system dragged into the ground) and the Stem cells that they had harvested from him put back into him.
The good news is that many people (including Stephen) go through this process with very little suffering. The bad news is that once you have had your immune system wiped out you become neutropenic (sp)for a while then you hsve to be careful of catching any infection and have to eat a really boring diet. -imagine best steak being frazzled instead of blue and scrambled eggs being very well cooked instead of light and moist. That was the first thing I cooked for Stephen when he came out of hospital.
When your blood counts go up you are allowed slightly more interesting food and I remember we went out for lunch when he got the all clear and Stephen ordered SALAD which had been banned for weeks (sad ay to be excited about salad). After a short while you get back to eating as you would normaly but Stephen has been advised to try, where possible, to stay away from colds and infections eg if your best friend has a raging case of flu don't visit
Stephen managed to produce enough stem cells during his "harvest" for 2 transplants but if people don't manage to produce enough a sibling may be tested to see if a donor transplant would be possible.
The survival rate for mm is getting longer and longer and Stephen's consultant at Kings told us that MM is considered "quite sexy" by researchers at the moment so there are lots of very clever people out there determined to cure this cancer.
Please do not trawl the internet for information. So much is outdated and badly informed that it becomes very scary. As well as "us lot" on this site there are mm nurses etc that can answer medical queries that you might have
Do keep in touch. Good luck Gill
My husband has had the sweats and the cold times but after reading everyone else's experiences. he has had nothing! He just got very mild symptoms where he felt hot but no tempreture and then got cold. First of all I used to wait for a cold or flu to start but now we know it is the drugs
Gill
I took early retirement soon after Stephen got ill. I was a support worker for homeless people so did not have to "be suited and booted" for work but always dressed in skirts, blouses, sweaters,tailored trousers etc.
Since being home all day I have only worn a bra when I go out or we have visitors. I exist in very comfortable joggers, T shirts, sweatshirts etc. I must admit that I have the sort of figure that is not huge in the bra needing department but it is still needed in company!
We try to go out at least once a week for a nice lunch (thanks to tesco vouchers) and I enjoy changing for that. Otherwise it is up in the morning shower and clean clothes consisting of knickers, comfy joggers, T shirt or sweatshirt and socks on a cold day.
My advice to you Jet would be to, if not burn the bras, put them at the back of the drawer and be comfy most times
Gill XX
