[chrissieParticipant]

Hi again Eve,

Thanks for your help and good advice. I plan to address the subject of AL with the appropriate department tomorrow and will let you know how I get on. My daughter-in-law in London is constantly asking me if there is anything she/they can do to help but, frankly, with them living so far away I don't see how they can. I have a good circle of friends locally who are very supportive and feel sure if I asked for help it would be there. Meanwhile, as you advise, I plan to take each days as it comes.

[chrissieParticipant]

Good evening Tom, and thank you for taking the time to give me such encouragement. I have learned to hide my worry (David always used to say if I had nothing to worry about. it would worry me!!) but it never goes away.

Like you, David is a fighter and has remained so positive throughout this nightmare, it has amazed me. But after two failed treatments, even his faith is beginning to waver. Having said that, I have read some of the posts I have seen, to him, and it has renewed his hope. As you say, onwards and upwards!!

Once again, thank you for your encouragement.

[tomParticipant]

And a good evening to you Chrissie

Its not a problem with the encouragement and you can tell David that I worry about worrying about not worrying Lol.

Pleased David is a fighter because as you both will know its needed a lot of the time :-S .

The two failed treatments are a bit rough but you will know by now one treatment doesn't fit all so it just a case of finding the correct one for David (and they will)
I was fortunate to get remission on the first attemt with CDT then a SCT and am sat here nearly 2 years post SCT and feeling great 😀

Good Luck

Love

Tom "Onwards and Upwards" xx

[brochoParticipant]

Hi Chrissie so sorry , I didnt think about using the abbreviations and there is nothing worse when you are just getting used to the jargon. The induction chemo is the chemo used to lower the paraprotein levels to as low as possible before a stem cell transplant High dose steroids are usually given as well . The bmb is bone marrow biopsy , used to measure the level of myeloma in the marrow . I hope David can stay out of hospital I agree with him it is soul destroying to be stuck in a small room on your own and there really is no place like home especially when you are feeling rotten I am glad you have good friends to support you , its a pity your boys dont live nearer Try and spend some time doing ordinary things that have nothing to do with myeloma or hospitals and illness to give yourself a break as it is exhausting visiting someone in hospital let alone all the worry Tell David not to despair about treatments not working yet , they will find the right one Neither Velcade or Revlimid worked for me so I am now on Bendamusine and crossing my fingers it will work this time Love to you both Bridget

[chrissieParticipant]

Good afternoon Bridget,

Have had some pretty devastating news this afternoon. David's consultant told us that the myeloma has increased by 25% and his kidney function has also worsened. Not quite reached the dialysis stage yet but getting ever closer. Because of the kidney impairment they can only use very low doses of Lenalidomide as it, also, damages the kidneys. Seemingly a vicious circle.
As for doing ordinary things, away from hospitals and myeloma, that is a pipe dream as he is now to have thrice weekly hydrating drips for the kidneys and twice weekly blood tests. The staff in the cancer unit are fantastic though.

[tomParticipant]

Hi Chrissie and David

Sorry to hear its gone up but am sure once they find something that works for David it will soon level out, its a B u g g er when what you need to make you better makes you worse:-( .

Lord help them get something sorted that cures it or at the least puts it in remission with no side effects am sure thats not too much to ask is it.

Keep strong you two, Love and Hugs (()))

Tom "Onwards and Upwards" xxx

[brochoParticipant]

Hi Chrissie so sorry Davids mm has gone up , no wonder you feel devastated Hopefully they will come up with the right combination to bring it down very soon All fingers and toes crossed for you.The trouble with all these anti-cancer drugs is they are so toxic we risk damaging our kidneys all the time I always worry that mine will just pack up one day as I have been on treatment of one sort or another for 4 years now It makes such a difference if you have a good relationship with the staff doesnt it I hope you get some better news very soon love to you both Bridget

[chrissieParticipant]

Good afternoon Tom,

I have been in a pretty dark place for a few days. The chest specialist has now told us that they have reached the end of the line as regards treatment for his bronchiectasis and this, coupled with the kidney problems, is making life a struggle for David. I feel so impotent. Thanks for your kind words though.

[chrissieParticipant]

Hi Bridget,

As you will see from the note I have posted to Tom, I have been feeling pretty down for a few days now. Actually, I am worn out. The MacMillan nurse has offered day care at the local hospice but, I get several hours free time whilst David is at the cancer unit, so this is not necessary. She has also offered counselling but I don't wish to go down that road at present. Thank you for your encouragement.

[tomParticipant]

Hi Chrissie

Am so sorry to read you are in a dark place I am sending you Hugs and Prayers to you Both at this difficult time.

Stay strong and use the help offered for you to have a bit of a rest also am sure it takes it out of the "Carers" as much as it does us MM Patience.

Tom (((hugs))) xxx

[NettieParticipant]

Hi Chrissie

I have been away for a while but just looked in and have been reading your posts. I am so sorry to see the heartbreak you are going through and the uphill struggle David is enduring. This disease really is a b****r but I am so pleased you have found this site as there is so much to be gained from all the wonderful people you meet here.

You are certainly not impotent ~ you are obviously a loving and caring wife to David and that is the best support anyone can wish for, I could not have faced the past seven years without the love and support of my husband and I am eternally grateful to him as I am sure David is to you.

MM is such an individual cancer it does take time to hit on the best treatment for each patient and there will be one there for David. Never give up hope, it is what keeps us all going.

Love and "cyber hugs' to you both,

Nettie x

[chrissieParticipant]

Hello Nettie,

Thank you for joining the rest of the wonderful people on this site who offer such warmth and encouragement.

I read your profile before replying and noticed that one of your correspondents was going on holiday. That is my dearest wish – to be able to take David to Canada. Our son emigrated in June (with our full blessing)and David is so keen to visit. But how can we when the treatment is so on-going? I have asked the question of his doctors and they have emphatically advised against it. Still, it is one thing we can aim for in the future. David was given 2-4 years prognosis, and one of those years is almost up! Do we throw caution to the wind and go anyway?

Once again, thank you for your kindness.

[eveParticipant]

Hi Chrissie
I stand by what I said last time involve your daughter-in law,she just might turn out to be the daughter you never had,you will not know unless you give it a try,no one can manage on there own,take my word for it,I am very much an independent b—-r,but my son-in-laws came up trumps.
Get SKYPE I talk to my daughter in nz all the time,would love to see my Kiwi grand children,but not at the cost of Slims life,if you have the money pay for him to come over,it,s the person not the country that,s important.
I cannot say enough,if you feel there is not much time ask the question you will get an answer,Min told me that once, I was just to scared to ask,so all silly things were going on in my head.
I look at Slim now and see a different person than 6 months ago,so do not give up hope Eve

[AmelieParticipant]

Just wanted to send my best wishes and thoughts.
I hope you will be able to make the journey.
Love
Amelie

[chrissieParticipant]

Hi Eve,

We do have skype and speak to my son most evenings, it is just that David is desperate to see where they have settled. They send us loads of photographs but it isn't the same as seeing for oneself is it? We both know it would be foolhardy to travel against doctors' advice and are not sure if we would even be able to get David insured, so it is a pipe-dream really, but it helps to keep us both going somehow. I must admit that I cannot bring myself to ask too many questions regarding prognosis, and it would most probably upset David if I did. I find huge encouragement from hearing that Slim is a different man to what he was six months ago and I thank you for that.

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