[HarmonyParticipant]

Well, with my pp level at 23, I top both of you and am not receiving treatment!! Not that we’re competing… (Excuse me for being facetious but laughing has to be better than crying, right?

[HarmonyParticipant]

I know how you feel..Waiting is agonising but eventually you get used to waiting for results because you have to. I find that it helps to keep busy and fill your days up with activity- no matter how mundane. Bake bread, spring clean, go shopping .. This way, you have less time to think during the day and you’re pretty tired by the time that night falls. You wake up in the morning and it hits you in the face again but you get out of bed and start again.

[HarmonyParticipant]

Thank you – much appreciated.

[HarmonyParticipant]

Thank you so much.

[HarmonyParticipant]

Hi,
I had a BMB last year. I played loud music in my IPOD, closed my eyes tight and absorbed myself in the music, singing like a lunatic. I found that this helped me to zone out. While singing to loud reggae musiC, I visualised myself lying on a warm Jamaican beach. I then apologised profusely to the registrar for my loud singing!!

[HarmonyParticipant]

Hi,
So sorry that you have joined our gang. I was diagnosed in October 2013 and still struggle to accept it. I’m smouldering too. There are many upbeat people on the site who help to keep your spirits up – I’m trying to become one of them!x

[HarmonyParticipant]

Hi Rebecca,

I think that we should all throw a party in twenty years time when we’re old and penniless so that we can celebrate poverty! Your optimism is infectious and I’m working hard to be upbeat so thank you. Today, at this present moment, I feel and look healthy. Tomorrow is way off in the future.We all have to distance ourselves from the edge of the precipice and it’s bloody hard work to do so. Can you believe that pre-cancerous me made a big fuss about turning 40 and feeling old – seems so superficial now!x

[HarmonyParticipant]

Hi Rebecca,
I am relieved to hear that your kidneys r not as bad as I thought. None of us really know what will take us at the end- could b myeloma and its impact or a bus could run us over!! Like you, I recognise that human connection is the most precious thing of all but my faith is a source of peace and comfort for me. I’m not one to throw it down other people’s throats as I strongly believe that everybody has the right to choose what they want to believe.

Our outlook towards life definitely changes but this is inevitable. My daughter bought some turtles recently and it did cross my mind that they r likely to outlive me! Last year, we celebrated her birthday 3 weeks after my diagnosis and I spent hundreds on her – she was astounded. I think that this was my way of apologising for causing her future heartache. My kids are lavishing lots more love and affection and plently more ‘I love yous’ -which is a positive outcome, I guess!! (They dont know about my MM)

[HarmonyParticipant]

Hi Rebecca, you’re so right – it’s about us taking control of our emotions so that we ‘choose’ to focus on the positive. I’m so sorry that your kidneys are not working- the thought of this saddens me.I guess we have to hold our fist up and shout ‘F.. You Myeloma! -I’m living my life despite your best attempts to wear me down.’ I probably shouldn’t be thinking such thoughts as a practising Catholic…

[HarmonyParticipant]

Hi Rebecca.

Thank you. Your post is inspirational.I have a head v heart thing going on. In my head, I know that I have this thing and seek information but in my heart, I want to run as far away as possible and wait for someone to wake me up from the nightmare -but everybody feels the same.

3 thoughts that calm me are – all humans are mortal so by definition, we are all terminal; nobody knows what will happen tomorrow; everybody has to die of something in the end. We just have a microwave version of human experience.

Best wishesx

[HarmonyParticipant]

Dear Mike,
Thank you for your response- I’m hanging onto the Mayo Clinic’s 2007 results! We look for any ray of hope, don’t we? You say that you’ve been smouldering for 6 years which sounds pretty good -have you adapted your diet or taken supplements or done anything to maintain this? In 6 years time, my daughter will be seventeen and my son fourteen. If I can smoulder for a few more years, my position will be so much better because they’ll b much more grown up. I’m forever bargaining with God. Do u find yourself doing the same? I try not to b too greedy for asking for too much – but it would be lovely to get to 50. Life on the edge of a precipice- it gets to me at times although I try my hardest to keep in good spirits. Do you manage to NOT think about it. After a year of diagnosis, I still find it hard to go for a whole hour without thinking about it.

[HarmonyParticipant]

I’m with you all on the pre-appointment anxiety. I’m also putting my poor mum, sister and husband through sleepless nights and worry when it comes to ‘that’ time. Rather irrationally, I find myself demonising the consultant by thinking ‘I wonder what that bloody woman will come out with.’

Robert – I’m with you on the supplement thing. It’s just our way of trying to grab the steering wheel! My G,P mentioned knowing someone who was diagnosed in his 40s and was still smouldering at 80 – I wonder if she was either making it up or I misheard..

[HarmonyParticipant]

Hi Michael,
Just wanted to tell you that your post made me (a smoulderer) feel positive and uplifted. I’ve just finished reading a very sad but beautiful and realistic fictional novel about young cancer victims entitled ‘The Fault in Our Stars’ by John Green- which left me feeling low- so you provided a good dose of hope – thank you. I was particularly interested in your comment about the risk lowering after 10 years because I read this too – but my consultant contradicted this by saying that risk increases the longer that you smoulder. She convinced my because cells mutate – so the longer we have them the more they’ll grow.. Please let me know your view

[HarmonyParticipant]

As a black woman, I’m probably not best qualified to advised but friends tell me that there are good tinted moisturisers out there- could be a safer option?
I find that I always look hearty and well because of my colouring which means that I get little sympathy when I feel rotten! (LOl)

[HarmonyParticipant]

Thanks Megan, I’m relieved to here that Tom is okay-I’ve been thinking of him too.x

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