[cygnetParticipant]

Hi Jane

Sorry to hear about your husband – I’m not surprised you’re both still reeling from the diagnosis. I’m not sure I’ll ever totally get my head around my situation…

Have you seem Myeloma UK have an info sheet on Daratumumab? I think there is also some info on it on the Myeloma Beacon website which is a reliable source too.

Good luck

C x

[cygnetParticipant]

Hi Mark – & can I echo everyone else in saying sorry to hear you have joined the smoulderers. (of which I too am one)…

Everything Rebecca says is worth reflecting on. I have read many of her posts & have followed her advice on choosing carefully who, when & what to say. Subsequently only my husband & I know about my diagnosis – apart from the medical team, dentist & physio. At the moment I feel I don’t want to be treated differently & I know telling people I have this “sleepy “cancer will change how they view me so I have chosen not to. Luckily (!!) I had pneumonia last year & have a history of back/disc problems so any blips/ excessive tiredness is presumed by others  to be linked to that. I exercise 5plus times a week & am self employed working part time. I have had lots of support from lots of lovely folk on here too 🙂

If it helps to reassure you I was diagnosed a year ago just before my 53rd birthday. My pp was 27 – everything else was OK so I am on “watch & wait” monitoring 3-4 monthly.  My pp has subsequently dropped ( yes it can do this) so has been 21, 24 & 24 again. This has stopped me panicking about topping the 30 mark. But – & this is the twist in the tale – every case is individual. Now I am learning to live with this situation I am focusing on getting as fit & healthy & stress free as I can & on finding out as much info as |I can so I know where to go if/when my time for treatment arrives.

If you or your wife have questions & want to talk to a human being, the Helpline Nurses are wonderful.

Love & hugs,

C xx

 

[cygnetParticipant]

Hi Teepsy

Sorry to hear you’re having a difficult time. I don’t know if this helps but I had my results about four weeks after my biopsy & skeletal scan.

The waiting is definitely the worst bit ( although it may not feel like it so soon after your bone marrow biopsy!!) It helps if you try & stay distracted & busy but do talk to the Helpline Nurses as they are very supportive & knowledgeable. The folks on here are very supportive too!

Take care,

C xx

 

[cygnetParticipant]

Hi Sarah

Welcome – & I’m so sorry to hear you’ve had a difficult few weeks worrying & waiting. I was told at a similar time last year that was my pp was 27 & then  – like you – had a tortuous wait for a New Year bone marrow biopsy & skeletal survey.

I haven’t had any treatment yet as such – just “watch & wait” monitoring with 4 monthly appointments  for the past year so you may find you are on a similar path. I am not the only one for sure!!

I think it’s the waiting for the results that’s the worst bit!! I constantly pep myself up with little rewards ( any excuse hee hee!!)

Love & hugs,

C x

[cygnetParticipant]

Hi Geebee and Welcome!

Yes, the diagnosis process is rather excruciating ( in more ways then one sometimes!!) and even after all that the questions & confusion continue for all of us I think.

I was reeling when I first found myself where you are just over a year ago but it’s amazing how  life settles down. I have found the folks on here very supportive & the Nurses on the Helpline are great too & Maggie’s have an online community if it goes quiet on here.

I have come to the conclusion that at least while we are smouldering we can use every opportunity to find out more about options for treatment, coping strategies etc. Certainly I feel very different now to how I did this time last year. I find exercise & mindfulness practice helpful – plus a supportive GP – & I have also not told anyone ( apart from my husband of course) so I can get on with my life as it is now.

Good luck

Sending love & hugs,

C xx

[cygnetParticipant]

Bless you – how unfortunate  for you the sale of the house is coming so close to the anniversary of losing your mum and Christmas.

Please remember no one can take your memories away and everyone grieves differently. Now you also are grieving the loss of your family home and everything associated with it. Give yourself time to do this at your own pace in which or whatever way you need to.

My sister and I recently sold my parents home after our Mum died of pancreatic cancer in March. It was never our childhood home but it was a terrible wrench so I can’t imagine how this must feel for you.

As for Christmas, I am trying hard to focus on happy memories of Christmas past. I know that’s what my mum would want and I’m sure your mum wouldn’t want you to be unhappy either.

Sending love & hugs,

C xx

[cygnetParticipant]

Welcome home Graeme! I hope you have a good night’s sleep in your own bed!

Thank you for your blog & for sharing your experience with us.

Sending get well wishes,

C xx

[cygnetParticipant]

Hi Louis & Dino

Thank you so much for these insights – as someone who may  well find themselves where you are in the future I am finding your blogs extremely illuminating.

Hang is there guys – you’re moving onwards & upwards – & hopefully closer towards getting home & more of your life back – everyday!

I assume you’ve both thought of skype etc as a way of keeping in touch with your nearest & dearest?

Sending virtual get well soon wishes & hugs,

C xx

[cygnetParticipant]

Hi Mike

Thanks for sharing your wise thoughts & reflections.

For me, what strikes me as I read the various posts is how varied the approach to MGUS/ smouldering/active myeloma is & this postcode lottery effect worries me. Even the NICE guidelines seem vague – for example in  my area (East Kent) they don’t measure free light chains I’ve been told. I only found out because I saw a registrar who requested them for risk stratification but when I saw my  usual  (general)haematologist she said the health authority “didn’t use them.” Hmm….. I guess we have to stay aware & proactive – certainly I’ll be exercising my right to a second opinion from one of the London based myeloma specialists if & when the need arises.

Please keep us updated on your treatment progress –  my fingers etc are crossed for you.

C xx

[cygnetParticipant]

Hi Dino

Stay positive – we are rooting for you!

Sending love & hugs,

C xx

 

[cygnetParticipant]

Hi Andy

This is very good news  & it’s great to have your contributions back on the forum!

Keep up the positive work recovery/physio wise … & keep counting down to your next holiday 🙂

Love & hugs,

C xx

[cygnetParticipant]

Hi Andy  – great to hear from you. We were all worried about you.

I’m sorry you’ve had such a difficult time but I’m glad you are feeling a little better.  Like some of the others I don’t “do” Facebook so I was grateful to Fiona for keeping us updated.

Take it easy & listen to your body

Love & hugs,

C x

[cygnetParticipant]

Cupcake

I am so sorry to hear your news. My thoughts are with you at this difficult time.

Sending love & hugs

C xx

[cygnetParticipant]

Hi

Thank you for this info – I’m not on Facebook but have been concerned about his silence.

Andy –  please get well soon; I’m sure I’m not the only person missing your welcome input on here!

Sending love & hugs,

C x

[cygnetParticipant]

Hi All

Thanks for your kind words – my consultant rang me yesterday with my pp result as they’d re-done it as ” urgent” . Now I can smoulder on until January for my next appointment which feels quite good as it is next year 🙂

Helen –  feeling for you in this lead up period & just a thought… I decided  this time I would manage my pre appointment jitters by marking each of the 10 days leading up to it with a  treat. Nothing massive – sadly I’m not rich enough…but just a little something to brighten up my day.  ( eg my favourite coffee in Costa, a bunch of flowers  – that sort of thing.) It did seem to help to take the edge off it & it did seem to help to stop me dwelling on if, buts & maybes too much.

Love & hugs,

Cxx

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