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<p class=”MsoNormal” style=”margin: 0cm 0cm 10pt;”><span style=”font-size: medium;”><span style=”font-family: Calibri;”>I am sure many of you are familiar with this story, but we are currently going through the worst week of our entire lives. My wife has just been diagnosed on Wednesday during what we believed was an exploratory test. This came as a complete bombshell and I feel like our world has just fallen apart. I suppose it has. She is in her early 40’s and we have two school age children aged 11 and 15. I believe this was discovered by accident as they were running tests to treat an unconnected condition. Ironically that condition has now cleared up and is fine. They have performed a bone marrow biopsy on Wednesday and she must wait two weeks before we know anything further.</span></span></p>
<p class=”MsoNormal” style=”margin: 0cm 0cm 10pt;”><span style=”font-size: medium;”><span style=”font-family: Calibri;”>After a few sleepless nights, hours on the Internet (me) and a roller coaster of emotions I feel we still have no real idea what’s going on and just in a state of disbelief. How can such a normal, happy life with our children just fall apart over night?</span></span></p>
<p class=”MsoNormal” style=”margin: 0cm 0cm 10pt;”><span style=”font-size: medium;”><span style=”font-family: Calibri;”>I would welcome any advice or comments on how to get through the next few weeks until we are told more. <span style=”mso-spacerun: yes;”> </span>I was thinking of trying to keep things as normal as possible in the meantime. I am thinking of trying to return to work on Monday but just don’t know what to do.</span></span></p>
<p class=”MsoNormal” style=”margin: 0cm 0cm 10pt;”><span style=”font-size: medium;”><span style=”font-family: Calibri;”>Thanks</span></span></p>
<p class=”MsoNormal” style=”margin: 0cm 0cm 10pt;”><span style=”font-size: medium;”><span style=”font-family: Calibri;”>Tony</span></span></p>
Hi
I am sure many of you are familiar with this story, but we are currently going through the worst week of our entire lives.
My wife has just been diagnosed on Wednesday during what we believed was an exploratory test.
This came as a complete bombshell and I feel like our world has just fallen apart. I suppose it has.
She is in her early 40’s and we have two school age children aged 11 and 15. I believe this was discovered by accident as they were running tests to treat an unconnected condition. Ironically that condition has now cleared up and is fine. They have performed a bone marrow biopsy on Wednesday and she must wait two weeks before we know anything further.
After a few sleepless nights, hours on the Internet (me) and a roller coaster of emotions I feel we still have no real idea what’s going on and just in a state of disbelief. How can such a normal, happy life with our children just fall apart over night?
I would welcome any advice or comments on how to get through the next few weeks until we are told more. I was thinking of trying to keep things as normal as possible in the meantime. I am thinking of trying to return to work on Monday but just don’t know what to do.
Thanks
Tony
Hello Tony,
I well remember the roller coaster ride when first diagnosed just before I was 42 and one of the things we both say looking back is that searching the internet at the time for information gave us both more to worry about. I have recently turned 50 and I am still in remission after a stem cell transplant in June 2007, the treatments are improving and age is on the side of your wife particularly if it has been caught early.
Mike
Thanks Mike. Yes you are so right. The Internet is a very scary place at times like this. Too much information and if you don’t know how to interrupt it can lead you to draw the wrong conclusions. Feel slightly better now I have found this site.
Hi Tony,
The best thing we found was to research what you can. Don’t just rely on a few web sites because they can be very scary. Think about what you want to ask the consultant when you see him/her. Write down questions so you don’t forget anything. Speak to the nurses at Myeloma UK, they’ve really helped me in the past. Take note that there a lot of under 50’s out there with this illness (I was 49 at diagnosys) and that a very large number do make it through the treatment. I don’t have specific figures but someone will.
Once you get over the shock and the treatment starts, don’t be surprised if you start to feel a little blase such as thinking of going for chemo as if you were just going to the shops. Your lives will never be the same again but you all still have a life and it’s a case of making the most of it while you can.
Above all, others have been before you and others will follow, use this forum to ask any questions even if you think they are dumb, chances are someone’s been through the same thing already.
Everyone here will be watching out for you so please let us know how you’re getting on.
Richard
I know exactly how you feel and what you are going through. 18 months ago, I was diagnosed at the age of 40 -my children were aged 10 and 7 and I had to keep pinching myself to check that it wasn’t a nightmare. I spent my nights crying myself to sleep and my days trying to be normal so that the kids wouldn’t suspect anything.I am still smouldering -which I am grateful for- but myeloma is a burden that I will always carry. I can now say that I have found peace and calm acceptance and you and your wife will find this too. I don’t think that my underlying anger will fade-I’m angry with the cancer cells for burdening me when all I want to do is live an ordinary life with ordinary concerns. It feels surreal because I feel so healthy and like your wife, I was diagnosed after a routine blood test.Take care, the shock will fade and calmness will descend on you.x
Hi Tony
I’m so sorry to hear that you to are going through this traumatic time, I am 42 and have four children aged 17,14,10 & 8. I was diagnosed on December 23rd and like you l felt a bomb had been thrown at me yet not gone of. I didn’t have to wait for the results of my bone marrow extraction for a diagnosis so it was such a shock to be told a t what l thought was just a blood appointment that l had multiple myeloma. My advice to you is do as much research on myeloma as you can,the myeloma web site is such a good web site and it’s so encouraging too.even the cancer research web site is good too, but like others have said some other sites stay away from.I’m going in hospital in May for my stem cell transplant as my body responded really quickly to the chemo and other meds they gave me, so try and be possitive which l know believe me is hard, but like me your wife is young and hopefully her body to will respond well to treatment.i wish you and you family all the best what ever the result of the bone marrow biopsy is. Xxx
Hi Tony
Welcome to the site you never wanted to join. As you read you will find that there is a great amount of research going on into a cure for MM. Treatment options have mushroomed since I was diagnosed nearly Five years ago so stay positive.
Apart from this Site the American site Myeloma Beacon is very good.
There is a Project called Black Swan, looking for a cure for MM. Hold on to the hope that it will be successful in your wife’s lifetime.
Very best wishes.
Mavis
Hi Tony
I remember the anxiety, tears and sleepless nights then my husband was diagnosed with Free Light Chain Myeloma but you will come to accept it. My advice is to take each day at a time and find out as much as you can about myeloma from myeloma.org.UK. I have found the nurses on this site very helpful and friendly. Get in touch with them if you have any questions.
I was also prescribed diazapan which calmed me down and allowed me to sleep.
Maureen x
Dear Tony,
I joined the forum today – I was diagnosed on March 20th with smouldering myeloma after 2 months of blood tests and the bone marrow and bone biopsy. I too am feeling a whole gamete of emotions as you can probably tell from the time of this post. I have carried on with my normal life as a teacher but have found returning from the Easter holidays this week very hard. I think that talking about it and keeping each other positive is the best way forward. As Mike has suggested finding out is good but I am finding the figures mind boggling as I look at the paperwork I have. It is scary but also this forum does help you to know that there are others going through this.
I made the decision today to get some professional counselling so that I can off load my thoughts to a third party. I don’t know if this will help but will let you know if it does. I am lucky enough to have older children and I have been very open with them but its hard telling loved ones news like this.
Try to keep positive and all the best with the up and coming tests
Ali
Ali don’t stress, some people smoulder for years! I was working as a secondary SENCo in Southall, London when diagnosed. 2 years later I am heading towards 15 months post transplant in complete remission, retired, living a normal life back home in Surfer’s Paradise Australia. The most hopeful thing the consultant told me when I was diagnosed was to think of myeloma as a chronic disease like diabetes, rather than cancer. Who knows there may be a cure in our lifetime?
Carol
Thanks so much for you post Carol that really does help me to try and put it into perspective. Let’s hope there can be a cure in our lifetime. Good luck a lovely part of the world. May I ask a personal question? How were you at diagnosis as I am thinking about retirement or carrying on working.
REgards
Ali
Hi tony
i remember the worst week of my life well too it was March 31st 2014 I was 44 at the time and have 2 boys aged 15 & 12. Me and my husband did not tell the boys for 6 months as eldest had GCSEs and his prom. It was an horrendous time. All I can say is after the anitial shock things will get easier for you and it will not seem so scary. I have just hadSCT in February and although it was tough going it is doable. All the best for your wife’s results. I will be thinking of you all .
nicky x
Hi Tony,
Sorry bit late replying, but just on a catch up. Reading your post really took me back to the shock of diagnosis of something I had never heard of, at first I thought skin cancer!!
Looking at the date you posted, things may have moved along, so I will finish.
Wishing your wife and your family the very best, at the worst of times. This site is very useful and friendly.
Take care
Kind regards
karen
Hi Tony,
Haven’t been on the website for a while but have a mixed diagnosis now as they can’t decide whether it is smouldering myeloma or another type of blood cancer. I have been seeing a counsellor and this has really helped me to get my head around the diagnosis and to start and plan things for the future. I am lucky enough to have a really supportive boss who is easy to approach and my family have been great.
Its really important to talk and not let things bottle up or get out of proportion.
Good luck and hope your future appointments go well
Ali
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