[kendrawParticipant]

Hey Guys

I have dipped my toe in here a few times before and feel it is now time to dive in & meet you all.

I had a bmb on the 3rd Sept last year which showed a plasma cell dyscrasia of under 10%, I have an abnormal flc ratio (excess Lambda) and a positive Bence Jones urine. There was also an incidental finding of Amyloid tissue which has muddied the waters even more. A trip down to the National Amyloidosis Centre in London confirmed my organs are clear and I do not have AL Amyloidosis.

So, I am not really sure as yet what I have!!!??? Unfortunately there is no way of knowing until things kick off. NAC told me SMM and my haem consultant told me MGUS and to make things even more confusing for me, there is a possibility that I will develop Al Amyloidosis so I am watching and waiting for for signs of MM/AL Amy and indeed there is a possibility I could have both.

I am going through my first real scare in terms of progression of my disease just now (altho its all been scary to be honest!!! lol). I woke up in the early hours of yesterday morning with the most awful pain in my sternum. I know every single one of you on here (whether the one with the disease or the caregiver) will identify with the agony of getting an ache or a pain that could be totally innocent BUT….WHAT IF???

I’ve had all the bits done. Bloods are ok altho Hb was down a little. CXR was ok. Awaiting CT now. Just wondering how you all cope without ending up with ulcers in your tummies with the worry? I am a very insular person & am handling this pretty much on my own which is what I am used to. I have lots to learn, Ellen on infoline has been fab and I am thinking it is time to get some more help.

Kay 🙂 x

[meganjaneParticipant]

Hello Kay,

Welcome to the site but sorry you have had to join us. The positive thing is you are being monitored and your doctors will being keeping an eye on your blood results and any new symptoms, make sure you tell them about the pain in your sternum.

How to avoid ulcers from the worry is something I am still trying to work out myself :-). It is my husband Phil who has myeloma, he was diagnosed in May 2012, had six cycles of treatment and then a SCT in December 2012. He has not been on any treatment since then except for the Zometa but his numbers are slowly rising so the next treatment will probably start this year sometime. Through all of this there have been many ups and downs and aches and pains. Phil always reports any new or increasing bone pain to his doctor or the nurses, so far the pain has not resulted in any more bone damage and has often gone away for weeks at a time but you are right, every time the pain comes back we both think, what if?

I had six counselling sessions which helped me enormously and we both try and live day by day without worrying about what tomorrow may bring, it is not always easy to keep your mind from thinking scary thoughts but I have found with practise I am getting better at focusing on the here and now. There is no easy way to stop worrying but some people find yoga or meditation helpful, I keep thinking I should try these but I haven’t quite gotten round to it yet!

For me, as a supporter, counselling was the thing that helped me get to grips with the worry, I was able to talk through everything and work on coping strategies which I now use all the time. I still worry but I panic less if that makes sense?

I also find this forum very helpful as I feel less alone when I read the posts.

Megan

[dickbParticipant]

Hi Kay,

Saying don’t worry is a bit like King Canute telling the waves to go back – it’s not going to happen. However you are here now amongst a wealth of knowledge. I think the important thing is not to bottle it up, talk to people, don’t be by yourself about it. The more that know, the more help you will get. The worrying about every ache, pain or sneeze is normal and we’ve all done it but as time goes by and you get used to your situation you will learn more about what to watch out for and what to ignore. As everyone here says, listen to your body. See if you can follow Megan’s advice about counselling, it probably will help you cope better.

[kendrawParticipant]

Thanks Megan & DickB

Megan, please pass my best wishes onto Phil. Things must be challenging for you guys.

I supported my partner & my best friend through a diagnosis of advanced stomach cancer last year, I felt totally and utterly devastated for him and I thought my world was going to end. I carried the ball for a while for him through some awful times. Clinics, surgery, oncology appointments and having to deal with non-responsive GPs and district nurses. Then he was able to carry the ball again for himself (which I was really happy and relieved about) and things become very difficult for us as a couple. I remember asking him if he would have been there for me if roles had been reversed. He made his usual flippant type comment that he would and I knew he wouldn’t have, not to the extent that I was there for him. It was a difficult relationship anyway prior to all that and I am not apportioning blame at all. Round pegs and square holes I suppose, they just dont fit no matter how hard you try. I had to sever our relationship in July last year as I was making me feel so unwell (or was it…maybe it was my diagnosis) I miss my best friend very much though & I will never forget the good times (even during the awful sad times) that we had.

Then in August I had a positive BJP in my urine…

The loneliness is a killer for me but I am too tired to do anything about it. My BMB was on 3rd of Sept last year and I worked fulltime thro the NAC visit and through my other debilitating health issues (which are improving) until about 3 weeks ago when I took some time off. I am still off. I felt so exhausted! I really wished someone would carry my ball for a while but that is not gonna happen. I need to get my head round that I am on my own & that is not likely to change. I have family and friends but they have their own lives to live and I would hate to become a burden on them. I have been studying mgus.smm.myeloma.Amy as much as I can but still dont feel I have a handle on it.

I need to get my ducks in a row then I will feel I can rest a little and put my diagnosis to one side. There is a wealth of knowledge here so I hope to make a plan in the next few days & any pointers anyone can make please feel free. I am gonna make a checklist but actually I have managed to tackle some things already…like ACCESS MYELOMA UK DISCUSSION FORUM lol

Megan I am in the process of getting counseling through my union, I am glad you found it useful, I think I will too. Just verbalising/venting on here has helped too and I appreciate the time you have taken to reply 🙂

Likewise DickB Thank you too. I have seen your posts on here before and like your no nonsense very pragmatic approach to myeloma 🙂

Kay 😀

• This reply was modified 11 years ago by  kendraw.

[kendrawParticipant]

Hello Jane,

Thank you for your post and I’m glad you are diving in here too 🙂 This must be a very difficult time for you as you move towards treatment and I am sure there will be lots of support on here from ppl who know pretty much exactly what you are going through. Your insight about how you wish you had worried less has helped me already and I am sure it will help me achieve my new normal a bit quicker keeping that in mind.

It is a very wierd feeling…and I know I am in a much better position than a lot of folk on here in terms of my disease (hats off to you all!)…but I often wonder how the world can go on as normal around me lol I feel like Im in a wee bubble isolated, scared and wondering why ppl havent noticed that something dramatic has happened and the world has changed FOREVER!!!??? That actually makes me sound egotistical that the world should stop for me (and all of us) and notice. I suppose we all have different ways of looking at it.

Best wishes Jane & hoping things progress extremely slowly for you, hope to catch up again on here, Kay 😀 x

[DormouseParticipant]

Hi Kay
Listening to your story has finally made me take the plunge and join in this forum. Dealing with a relationship breakdown and your diagnosis at the same time is the kind of “double whammy” that many of us have probably experienced. In my case it was retirement and the whole “what is the point in me now?” which came along with a diagnosis of MM which of course throws up “why am I spending so much effort to live when there is no point to it?”
Basically you had a future, with your husband. I am sure you had plans for that future and when you split up that future was taken away. A diagnosis of incurable cancer is another thing which takes all your future plans and throws them away. In many ways you have a grieving process to undergo – grieving the loss of your marriage and your future.
It’s hard and I don’t pretend to have all (or indeed any) of the answers. I am gradually – after two years – beginning to come to terms with the frustration, grief and loneliness of that loss. I too have had some counselling and recommend it highly as a way to start.
It sounds too easy but concentrating on “now” rather than tomorrow as much as you can has helped me, as has throwing myself into trying to help others, not because I am a wonderful person (although of course I am 😉 ) but because it gives me a reason to exist – I am useful to someone, even if it’s only for a split second, for that moment my life has a point.
Slowly I feel I’m getting there. I have learned:

Everything takes ages so you don’t have to make decisions until you have had time to get used to the idea

• When you ask a question the answer is “it depends” and that is true even though I desperately want it not to be!
• Give yourself a break – this is hard and there will be days when you feel negative, depressed or angry – try and find someone who can handle having those feelings thrown at them (counsellors can!)
• Live now – tomorrow will come when it’s ready and planning is a waste of energy.

I still have suicidal thoughts from time time but much less often and for shorter periods of time. I have made plans to end my life but having done so I now feel I can put them to one side and just feel safe in the knowledge that when/if I want them they will be there. Meanwhile I can just live from day to day. The more time that goes by the easier I am finding it to stay in the “now”. Working as a volunteer has been a great help to me – even though it takes an effort of will to go out I know I will feel better when I get there.

I wish you peace and healing for your heart.

• This reply was modified 11 years ago by  Dormouse.

[eveParticipant]

Hi Everyone

I do not usually look at newcomers postings,mainly because after 3 years being a carer of someone with Myeloma,things have advanced so much concerning treatment,but just reading this post made my realise that the emotional side never changes,but I do think after going through the emotions of shock grief,plus usual problems,things do change!!!!,because the people that are immediately involved have to adjust ,no choice!!! The patient has to concentrate on themselves,and the carer has to come to terms that there own life is on hold,!!!! That is the practical side of Myeloma.
Myeloma is a big emotional learning curve,with lots of highs and lows,it’s not something that anyone would choose,but you can learn a lot about yourself,appreciate small things,and find a peace and contentment,and live for now.

The only advice I could give,find out what is important to you and make the most of each day. Eve

[VickiParticipant]

Hi all

I’ve read these posts and just want to stress how important it is to share your worries and conerns if you feel you can. It’s a long hard road to be lonely as well as battling this damn condition. So share your highs and lows with us. We are all in it together in one way or another so let’s all help each other. This forum has been a godsend

Best of luck x

Vicki and Colin x

[VickiParticipant]

Megan

I’ve just noticed your post that Phil’s numbers are going up again, so sorry to hear that. Glad to hear that the counselling has helped you. I do understand what you mean about living for the day. It is so hard not to what if though isn’t it!

All the best with the next steps

Vicki and Colin x

[meganjaneParticipant]

Thanks Vicki,

We had a shock in December when we found out Phil’s PP had been rising since August but we are getting used(?) to it now. We were told in July 2013 it was at zero and we had just assumed it was still there but it turns out Phil only maintained the zero for one month! At the moment he is still on a watch and wait plan, he has a blood test once a month when he goes in for his Zometa so we are hoping that the PP will stabilise and stop the upward trend but we are glad that we are prepared this time and that treatment can start again before any more bone damage happens. One day at a time 🙂

I was glad to read you and Colin had booked a holiday, we haven’t ventured out of the UK since Phil’s diagnosis but I do love reading about other people’s travel!

Megan

[annlynnParticipant]

Hello everyone new to this. So here with me  Just on week 7 CDT like all newcomers bit scared but feeling positive due to so many of you so thanks for that  not so keen on the talk of ending life and no future thread  always had the attitude that life is a gift so cherished it and I have a husband and children  so giving in isn’t an option  so relieved to know that CDT does give good remission to many and hope that can be me proteins down from16 to8 in 6 weeks so all good so. Far sect sounds daunting but your posts on this help thank you x x

 

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