[HarmonyParticipant]

Hi Sarah,

I just wanted to say that I think that your love, strength and interest will be highly beneficial to your husband. It’s just the reassurance that comes from knowing that someone full of hope and positive energy which will help make things easier for him – not everybody has this. My husband very much follows the ‘let’s carry on as normal and pretend this isn’t here philosophy.’ He almost sneers at my attempts for our family to follow an organic, mainly vegetarian and wholewheat pasta diet and simply sees this as my over-the-top mentality. Sometimes, just convincing him that these things are worth a try is exhausting! I’m the one with the MM but it feels that this is very much only my battle.

[HarmonyParticipant]

Thank you Scott. I wish you well too.x

[HarmonyParticipant]

Hi Andy,

Thank you for your kind words. I’m thinking of you – I hope that the Pomalidomide works, I’ve read that they are inventing new drugs all of the time for our condition so I’m sure that the drug which will work for you is just waiting to be matched to you! This satanic disease is so unpredictable and that is the curse of it that we all have to live with.
You must be a very strong person to have managed without counselling so far or do maybe women just naturally need to talk more. NHS counselling seems to be a nightmare – I’m still waiting but, in the meantime have followed Sarah’s recommendation and I’m reading about ‘Mindfulness’ techniques and trying them out. I’ve now found peace and comfort at night through prayer and ‘Mindfulness’ techniques-
although I fear that mixing Buddhist principles with Catholicism may not be the done thing! Mind you, I’ll call on every religion at the moment. On Wednesday, I’m going for more blood tests prior to my appointment with the Consultant in three weeks time. I’m trying my best to avoid becoming a jittering wreck before then!
Eve- thanks for your positive words. I wish your husband strength, courage and peace for 2014.

[HarmonyParticipant]

Hi Sarah,

Sorry to hear about your husband- sounds like you’ve both had a very tough time. I know how harsh the diagnosis can seem especially when the disease is more common in older people. I’m only 40 with smouldering Myeloma so it all feels a bit freakish. Let’s hope for all our sakes that they find a drug which will make this a chronic condition that we live with – just like diabetes or hypertension. We always have hope. I’m going to be proactive by doing some research and phoning the consultant’s secretary (again) to chase the counselling. For now, I’ll absorb my mind in thinking about what to cook my kids and husband for dinner. No matter what else is happening hungry children still need to be fed and get help with their homework!!

[HarmonyParticipant]

Tom, hope you are having a great break. Seize the day!

[HarmonyParticipant]

Thank you Sarah. I’ll do some research. I hope that you are keeping well and wish you a positive New Year 2014. How are things for you?
Other people can be tough to deal with. I regret now that I didn’t take time off work after my diagnosis as I went in when I felt vulnerable and weepy. I now regret telling people. Today, I was working at a computer when a colleague started talking about her mother’s death (from another illness) when she was a child. She talked about the importance of creating a memory box to comfort children. I was stunned when she turned to me and said, ‘have you thought about doing this?’ She then proceeded to tell me about her friend who died of cancer in a hospice. I felt really upset but didn’t show it; my children are my Achilles heel and the thought of leaving them devastates me. I simply answered by saying that I hope that things will be more long term for me. I know that she wasn’t being malicious but the time and place for such a discussion was so inappropriate. I like to believe that this disease is chronic rather than a death sentence.
x

[HarmonyParticipant]

Thank you all so much. I’ll make an appointment with my G.P to be referred for counselling. The fact that the counselling hasn’t come through makes me feel a slight lack of faith in the consultant – I accept that this could be irrational. I spoke to her secretary a few weeks ago to chase things up. I’m under Queens hospital in Romford.
I’m definitely going to try Yoga in the New Year as I need to do something. After telling close family members (apart from my children), colleagues and a handful of friends about my diagnosis, I’ve decided not to tell anyone else. There are some friends that I want to keep things light-hearted and silly with. I don’t want to be defined by my condition – I just want to be me. I now regret telling some people. I guess that when I was first diagnosed, shock caused me to open up too much and now it has changed things with some people. It’s subtle changes, like the eye contact that’s a bit too brief. Once again, thanks for your reassurance.x

[HarmonyParticipant]

I echo both of you. I’m praying that MM will become like diabetes or hypertension- a chronic, complicated condition that is manageable with a daily tablet. My father has had diabetes for over 35 years and he’s able to manage his condition – with insulin and metformin. I’m hoping that eventually all of us MM sufferers will be able to do the same and live our lives to the full. Let’s hope that 2014 is our year! I feel as if I’m doing something just by setting up a small monthly donation to Myeloma UK. Perhaps that’s the best Christmas present that people can give us – setting up monthly direct debits to this charity.x

[HarmonyParticipant]

I’m a newbie Tom so I’ve no advice. I just wanted to tell you that I hope the new treatment goes well. You’ve offered me positive words in the past. You are such a positive person that I’ve no doubt that you’ll find the energy and strength to tackle this.x

[HarmonyParticipant]

Hi Nick,
This forum provides you with great support and reassurance. I was diagnosed with smouldering MM on 7th October and am so determined to pretend that things are okay that I use a pseudonym because then I can be 2 people- the pre-cancerous person that I was before diagnosis and the post-cancerous person who doesn’t understand where all this has come from. I hope that you respond well to your treatment.

[HarmonyParticipant]

I guess that we have to grab life with both hands and live and love and squeeze beautiful, precious moments out of it! x

[HarmonyParticipant]

Hi All,

Thanks for your replies. You all seem so confident, strong and in control. I admire that so much-it’s great to be able to press a button and receive so much reassurance. I need to ‘give’ more back to you all. At the moment, I seem to be doing all of the ‘taking’ in terms of advice and reassurance.
I’m not receiving medication at the moment. My treatment plan is ‘Watch and wait’ so the green tea’s okay for now but I’ll take your advice and stop if/when I need medication.
Scott – I’m like you, I have to be proactive which is why I take the selenium, green tea etc.
Dick – It’s great that chocolate’s not off limits as I love Lindt!
Dan- I’ll investigate Margaret’s corner.
Mothas, Maureen, Jean – Thanks for your advice.
Let’s continue to swim these choppy waters together. There’s strength in unity!

[HarmonyParticipant]

I hope that your partner smoulders for a long time too! My G.P recently told me about a patient who is now in his eighties who has been smouldering since his diagnosis, when he was in his forties! In the ‘Myeloma Matters magazine’ for Autumn, there’s a short piece written by a woman who was diagnosed with smouldering MM 21 years ago. I would love to know if these people have followed special diets or taken a good supplement. I guess I’m just hunting for good news stories! Happy Christmas, sending love and cyber hugs your way.x

[HarmonyParticipant]

Wish you both well Graham and Ann. Keep strong.x

[HarmonyParticipant]

Hi Scotty,
I am a 40 year old married mother of a seven and ten year old. I was diagnosed with asymptomatic myeloma 6 weeks ago. I am still waiting for someone to wake me up and tell me it's a bad dream. I only went for a routine blood test. At worst, I expected to be told that I'm anaemic and need iron tablets. Still wondering if there's been a mistake- despite 4 blood tests and a bone marrow biopsy! Have joined the other discussion forum and found it very reassuring.

[Author]

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