[eveParticipant]

Hi Teresa

Well like Dai, Peter,s pain has been resolved,and as usual the carers have to stand watch and worry,it,s a place we have all been in,you have to ask yourself who you are angry with,the hospital or the hubby.Mine was both,for not taking on board my view.You are the one that shares this burden,sleepless nights,worring that they do too much,even if you go out,you worry about them,so there is no escape.

This is were taking a deep breath comes in.:-P
If you feel the hospital is wrong,then speak up,loudly if necessary until they take notice.
Explain to hubby how much it effects your life,Slim thinks if he mentions a pain I will drag him off to hospital(which I have never done yet),but if they are so selfish,and think this will all go away without treatment,they need to be told how you feel.
Do not worry about writing when angry I can assure you other carers are reading this,and thinking just like my hubby.:-( Love Eve

[tmcParticipant]

Hi Eve
I have now had time to calm down and reflect. Yes I was mad at Peter and told him I didn't agree, but it is his pain, his logic was wait until he is put on chemo for the myeloma and see if that works and keep the radiation for another day.
I am so glad you have had the same thoughts mad angry feeling the burden then I guess, like me feel so unfaithful about moaning about your partner to others. That is where I love this site I am not telling anyone who knows him but can get a sense of release even if there is no escape.
Thank you so much for answering. Men with a shrug of the shoulders!!
funnily enough when I told the children my son agreed with my husband wait,and my daughter agreed with me, take the radiation, funny old world
Love Teresa

[HelenParticipant]

Hi Teresa
I'm sorry Peter is misbehaving, I don't think it is just a boy thing, I think it's a bit about having some choice and control over a life which is going headlong in a direction you don't want to go! I'm really fed up with all the poking and prodding, I've had a lot of bother with my guts since the transplant and subsequent addition of revlimid, and I'm hoping it will just settle down by its self, but I've been told I only have a few weeks left before they think they should investigate it, and I'm very tired of being ill. ( I've had a bad couple of days) and its tempting to be an ostrich and pretend everything is fine. My rational sense says this is wrong and I have to be honest with them when I go and do 'whatever it takes' to quote Dai. Anyway, there you are, I've only been on this road for a year, just how grumpy and cantankerous will I get over the next few years……. (I'm planning on being here for years:-) )
You are very kind about the photo, I've about an inch and a half of hair now, going to the hairdresser for another consultation next week, and hopefully a style of some kind, though i think I'll have to forget the colour as my skin is still so sensitive. I'm 57 and the eldest of 4 girls. The occ health saga continues.
Love Helen

[andygParticipant]

Hi Teresa.
"feeling alright" = ok. I'm sure I would feel a lot better if it weren't for the drug but the drugs are a necessary evil :-/
I've had a busy few days with Easter ( going out having a few drinks 😉 ) and yesterday being my wife's birthday more drinks and a meal. Today I've been tired out!
I've been on a steep learning curve since diagnosis in October – discovered a cancer I'd never heard of, treatments I'd never heard of and drugs – well too many to take in though I am taking them.
My last bloods were ok – though they won't check my pp's till I've finished my first cycle of rev – dex. They're going to check my brother and sister for a bone marrow match – i don't know if that's good news or bad or wether their just covering all bases.
I am able to get about more now. My walking has improved the past few weeks. To think I was running marathons 2 years ago and now I think I've done well to walk round the block.
I know how Peter feels getting all those bloods taken you have to lighten the mood if you can. I'm lucky the staff at our day unit are excellent.
Sorry if this post is a bit of a ramble but it's my last DEX night and my brain is a bit mixed up.
I hope everything goes well with Peter and you are coping.

Andy xx

[eveParticipant]

Hi Helen

My mind is just trying to get round the fact that your Dad must have been a older Dad with a young heart,if your the eldest 🙂

I can see were you are coming from ,specially when you finish chemo and you do not have to go to the hospital as much,you become normal and no one wishes to go backward,but if you were the carer!!!.
Think of your plans for NZ,Its you feet that should be in the sand,not your head:-P Love Eve

[HelenParticipant]

Hi Eve
You are right, head is now back out of sand, down day is over, (I think it's the zometa effect) and I'm sorting out the packing, toothbrush, sunnies and knickers. ( i like travelling light ;-)) will borrow all my sister and nieces in law stuff when I get there8-) However the medicines bag is quite large:-( only 4 weeks to go:-D 😎 🙂
love Helen

[tmcParticipant]

Hi Helen
On reflection I am sure you are right it is about having some control over an otherwise spiraling out of control life. I do hope they get your gut problem sorted out before you go off on your vacation, you lucky thing. Do as much travelling as you can, We did,( including 2 trips to Sydney to se his brother in one year!) and are so happy we did especially now that Peter has relapsed. Peter was 57 when he had MM he is 65 now so you have lots of travelling years ahead especially if you don't relapse as he has.
You can be as cranky and grumpy as you like and even scream it all helps.
Trouble with having your head in the sand MM comes along and bites you in the bum!!
Looking forward to a new photo complete with new hair do
Love Teresa

[tmcParticipant]

Hi Eve
Did I read somewhere that Slim is going in for a transplant?
How are you coping?
Love Teresa

[tmcParticipant]

Hi Andy,
I am glad you are O.K. and had a busy Easter even though you are paying for it now by being tired out. I wonder what you drink in the pub if it's beer you may be interested to know my son in law has a micro brewery here in Toronto and grows all his own hops on rooftops around the city and brews all sorts of lovely stuf. (I don't drink beer shame)
It is early days for you Oct _ Apr isn't so long to have had the dreadful MM and I hope the Rev-Dex combo suits you and you stay on it for years. Peter had stem transplant the first year but he had his own stem cells, his brothers and sisters weren't even considered. So let's hope they have moved forward and they have lots of un cancerous (is that a word?) cells for you.
I am glad you can go for a little walk even though it's not a marathon any more, life with MM is a marathon all by itself.
Love Teresa

[eveParticipant]

Hi Helen
🙁 I do envy you I know its wrong but it will be at least 7 months from now before we can go out,to the land of the long white cloud,It will be 3 years I have not seen 2 of my grandchildren and when there young they grow up so fast
We talk on Skype,and have kisses and hugs,my computer has never had such affection before.:-)

Helen you do not need much out there,they have had a hot Easter,so shorts and t shirts with Flip flops,I was amazed to see people in supermarkets with no shoes on!!!.Mind you my daughter lives on s island.
Lovely place and lovely people,have a wonderful time,you will need factor 50. Love Eve

[eveParticipant]

Hi Teresa
Yes Slim goes 23 of this month,after a year on treatment,and septic pneumonia in the middle,been a hard slog to get here.|They say he is fit enough,and he can not be any worst than when he was in ITU for 9 Days and 11 days in general ward,with months after recovering while on treatment.

They will keep him in for at least4 weeks,and the hospital is 85 miles away in London I have a daughter who lives in Kemsing so have parked the motor Home on her drive so will travel in daily,I met couples who live on the S Coast,and they will not be able to travel very often.The seperation during this time must be awful.So feel lucky.
Our lives were turned upside down with MM,but again so lucky,We have not waited until he was 65 to retire and travel,we have done so much,8 years travelling in a Moterhome full time.Plus holidays as well,So we have to be grateful for that. Love Eve

[andygParticipant]

Hi Teresa
I am indeed a beer drinker [url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink005.gif[/img][/url]
Having a son inlaw with a micro brewery sounds like heaven to me. We've been out again tonight for a couple of beers with my brother and his wife. Not that I drink much nowadays. Is Peter a beer drinker? what's your favourite drink?
It's 3am and I'm wide awake! Guess I'll be crashing out later when I'm supposed to be awake. I blame it on the drugs.
I'm going to try for some sleep now 🙂 I hope you and Peter have a good weekend.

Take care
Andy xx

[eveParticipant]

Hi Andy
53 is young enough to consider a back to back SCT,So in some ways you are a lucky guy,it is surppose to be very effective at keeping the dreaded MM at bay.I mean lucky in MM and age terms if that makes sense.
Not many people go through 3 treatments in such a short time,at this rate,you will be having SCT in no time.I think why they like you PP to be as low as possible,is when it does come back,it returns at,a very low PP.(that,s if I am correct)I am sure if Ellen is looking in she will correct me if I am wrong

Being awake is no fun at 3am,when do you take your Dex???Slim could not sleep on Velcade,but do not know anything about Rev as not had that.I know you have not been married long but you must be like passing ships,at least the beds warm by the time you get in.LOL. Eve

[tmcParticipant]

Hi Andy
just a quick reply as we are off to the hospital in the morning and a bit nrevous about what they are going to say to us.
On a happier note my son in law's micro brewery is called bellwoods brewery if you know how you can google it the address is 144 ossington ave that is downtown toronto
hope you enjoy reading about it. You can tell me which beer my husband can try for you when he is allowed to drink again amnd is able to get about.
Love Teresa

[tmcParticipant]

Hi Eve
first let me ask you how do I put a photo on here?
I just love your dog and all the other photos it seems a bit more personal than a black square, mind you that's how I feel some days!
You have certainly been through the mill with Slim. The SCT isnt a picnic either.I will be thinking about you on 23rd and for the following month as you travel in and out of London and worry about Slim. I am glad you feel lucky I often get told how lucky I am for this and that reason but believe me on some days I don't feel at all lucky and want to tell the person if I am so lucky you step into my shoes for a bit of luck!!Anyway off to the hospital tomorrow to see if they can offer anything other that pain relief.On a lighter note:
I would love to hear about your years of traveling in a motor home (if you want to share) it sounds really an amazing thing to do.
Love Teresa.

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