[Kazzam2Participant]

Hi Eve and Tom, thank you for replying, I love the honesty and 'realness' (if there is such a word) of people on this site, everything you both said is true and correct, thank you!! 🙂 My consultant spoke in the same vein yesterday, after delivering the good news about my blood, pp, liver etc, she just said go and live, because it will come back and kill you. Never one to mince her words, but it gave me the kick I needed. She also confirmed I'm a junkie!!

Best wishes to you all

Karen
xx

[Kazzam2Participant]

Hi Mandy,

Thanks for taking the time to reply. You sound the same as me, I was declared in remission 3 months ago, so I am very thankfull for that.

I am waiting for my lift, so that is my Thursday spoken for.

Good luck to you with everything Mandy.

Love Karen
xxx

[Kazzam2Participant]

Hi all,

Mavis, Hi, that sounded very definite about Zometta damaging kidneys. This is the first I have heard of this. I know there is risk factors, but not a given 🙁

The thing with MM is there is always a surprise round the corner. 🙁
Best wishes to all.
Karen
x

[Kazzam2Participant]

Hi there Bev ?

I have just read your post and it has put things into perspective more for me. I am the MM sufferer, my husband works full time and we have 2 daughters at college. I feel really down some days at how I have affected or wrecked all our lives, I feel guilty we have not been on holiday for 2 years now, apart from 2 nights away in July.

This thread and all the replies have really made me think differently, many wise words and suggestions, I really have to be more positive for all our sakes. Thank you and good luck to all on your journey.

Karen

[Kazzam2Participant]

Hello Dai,

Good to hear you are doing well.

I had my eyes tested about 3 weeks ago, they are the same as my last visit (a year before diagnosis), the optician said that my vision is better than the average for my age!! So that could count as an improvement ?

Some good news 😉

Take care
Karen
x

[Kazzam2Participant]

Sorry forgot to say Hi Scott
🙂

[Kazzam2Participant]

I don't know what these things are?? What are they? Going down now to the clinic

The above is the reply I have just recieved off my consultant when I asked for her opinion on curcumin !!!
🙁

Good luck
Karen

[Kazzam2Participant]

Hi Jan,

good to hear from you. i am in remission but have ongoing issues with pain, despite increasing morphine and having more radiotherapy in July, it is still bad and it is getting worse. I am waiting to here is I am to have another vertebroplasty, but it is a very slow process, I have contcted my gp today to see if he can help in anyway. It is a shame as other than that I am fine, good appetite, weight gain (too much!)etc. My family seem to be coping okay and my husband is working full time, though I know he must be worried about me. Thanks for taking time to reply to me and I wish you well for the future (and everyone else 🙂 )
Well done Dave!! godd luck to you too.
Regards and best wishes to all
Karen
x

[Kazzam2Participant]

Brilliant news !!

Karen
xx

[Kazzam2Participant]

Hi Chris,

My experience was almost exactly like Jan's, I had my SCT mid January and only this last couple of months has my appetite returned, though I cannot eat huge amounts in one sitting. Reading your post brought back the memories of how sick I was, (yours will be memories soon), I complained to my consultant as I thought I had put on too much weight, she said not and I should be happy to be in remission. People are amazed at how well I look. What I am trying to say I guess is, it is not that long since I had my SCT. I hope this helps, good luck on your journey. x

Ps, my consultant likened SCT to open heart surgery, it is MAJOR, and really batters your body. x

Could I just say hi to Eve and Jan, I don't get on here much but do look in a lot so I know what is happening on your roller coasters, good luck to you all xx
Love to all
Karen
xx

[Kazzam2Participant]

Hi Rebecca, thanks for your comments and suggestions. The company I work for are a private catering firm totally seperate to the school I work at. As for being redepoyed or trained, nearly all the posts are heavy, as it is catering, so even managers are expected to cook and lift etc, even say an area manager would have to and drive hundreds of miles a week and be dropping off supplies etc, so I am not sure what I am to do, i have plenty of time to think about it! Ha

As for telling my daughters, we had to tell them as i was in hospital for a month post diagnosis. They seem to be coping, well they are being typical teenagers, which I am glad of! I am sure they worry, I try not to talk about it, but i still get a lot of pain which has not been addressed, I am waiting to hear back about the possibility of another back operation.

sorry I cannot offer any tips on how to tell your daughter, how old is she? It won't be easy, but she needs to know. Good luck, and take care
Karen
x

[Kazzam2Participant]

Hi Rebecca, thanks for your comments and suggestions. The company I work for are a private catering firm totally seperate to the school I work at. As for being redepoyed or trained, nearly all the posts are heavy, as it is catering, so even managers are expected to cook and lift etc, even say an area manager would have to and drive hundreds of miles a week and be dropping off supplies etc, so I am not sure what I am to do, i have plenty of time to think about it! Ha

As for telling my daughters, we had to tell them as i was in hospital for a month post diagnosis. They seem to be coping, well they are being typical teenagers, which I am glad of! I am sure they worry, I try not to talk about it, but i still get a lot of pain which has not been addressed, I am waiting to hear back about the possibility of another back operation.

sorry I cannot offer any tips on how to tell your daughter, how old is she? It won't be easy, but she needs to know. Good luck, and take care
Karen
x

[Kazzam2Participant]

Hi Graham,

Welcome, you will find a friendly bunch on here 8-). I was diagnosed (late), in July 2012, and my treatment was exactly has you have written, except I am fair bit further on. I had SCT in January this year, and was declared in complete remission at my last 3 monthly clinic. The downside for me is I am still on a lot of morphine due to exstensive bone damage/fracture of 5 vertabrae and sternum (due to late diagnosis) I lost 4 inches in height, I had Vertebroplasty last October which help initally, but has since collapsed futher. Sorry getting carried away. Despite all that, I can do lots of thing, my appetite is good and I have put on weight! Oh and my hair is back!!

Good luck with all your treatment! Take care
Karen
x

[Kazzam2Participant]

Hi Dawn, (and all)

I have been reading your post with much interest as I have the same dilemma. I am 51 and was diagnosed aged 50, (last year). At my last clinic a couple of weeks ago I mentioned my current sick note would run out before my next visit. She went on to say I need to think about retiment on health grounds, this had been mentioned when I was initially diagnosed, but I always hoped they may repair me enough to go back. (Due to late diagnosis I suffered exstensive bone damage). I am a school cook, quite a heavy job, huge pans, deliveries and worst of all tables and chairs, I used to have an assistant but in my absence the girls who have covered for me are alone. The company have been good, as in keeping me on the books, I had minimum sick pay, after 3 months was on ssp, which ran out some months ago. They sent me flowers initially, but now I never hear of them, I just send copies of sick notes. I think my main reason for returning is sanity (money is always handy too), the thought of retiring at 51 is daunting, but reading all your comments is very useful in helping me some form of descision. Some of it is self esteem and need to be needed, but of course life goes on. My consultant said I am a wife and mother (teenagers) and I should focus on my home, family and health.

Good luck to you all with whatever you decide, not an easy one. I must come on here more though, you are such a friendly bunch x:-D Karen x

[Kazzam2Participant]

Thanks all for your best wishes,

Tom, my consultant mentioned going onto 8 weeks Zometa in next 6 months or so, so I imagine that is the norm. Well done you.

best wishes and regards to all

Love
Karen
x
😀

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