A new Hello from Myelomaville - The joys of Myeloma and my first relapse

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Well, after being nudged by the Macmillan on-line team I have just joined this group and thought I'd drop a quick line to say 'Hello' and give a little overview of my wonderful life - visualise the classic clown car that backfires and the doors fall off! I think that currently sums up our family but, like the clowns, we never stop smiling. Apologies, as this may be a little long.

My wife was diagnosed with breast cancer in 2018 and whilst chemotherapy has been very good at holding the wee beastie at bay, it did get a chance to spread and reach out into the chest and the lungs. She’s on daily chemo and that has been really good, bar some side effects, however there are signs that things ‘may’ be bubbling once again. It’s far too early to say but two lymph nodes are slightly enlarged with, we think, one pressing onto the nerve supplying her vocal cords. We found out only last week the left one is paralysed, and she’s had a chronic hacking cough that she’s had for 7 ½ months now. It got so bad she broke a rib at some stage! She’s coughing away as I type this. However, I have had a play with a bedside atomiser that I’ve used with some oils designed to help breathing. We’re four nights in and the improvements have been stunning to say the least, lots more testing to do to prove it but wow, she’s sleeping through the night now.

For me, I’m the lucky soul with Myeloma, a blood cancer that I’d never heard of before and represents around 2% of all cancers. I was diagnosed in 2019 and this double whammy hit our teenage daughter very hard, she’s still struggling with it now, although there are some promising signs at the moment as she starts to mature and move from school to college.

I had chemo that worked very well and brought my paraproteins down – these are the readings from the blood that indicate the general level of activity of the cancer at any point. We did however have to stop this early, as I started to lose parts of my vision in my left eye, we thought it ‘may’ be due to the chemo but there was no past evidence of the chemo used causing issues like this before. I had some high dose chemo followed by a stem cell transplant which proved to be a pretty brutal five weeks in an isolation room followed by around 11 weeks of being Covid positive – this was when it first really hit the UK in March 2020. I ended up with Long Covid for best part of a year I think, it was hard to tell at some points if the long covid or the myeloma were the cause of certain side effects. The other prize I won was that 24 hours after I had the high dose chemo, the vision in my right eye was also damaged so I’m now visually impaired. The worst thing was that I ended up losing my licence and when I was diagnosed, I was just about to take my advanced motorbike test to qualify to become a blood biker for the NHS – Bummer.

Roll forward to December 2022 and whilst I had reached a form of remission I was always in pain and never fully well. I could however feel a change starting and all the way through this year my blood readings started to show a rise of the dreaded paraproteins. I knew it would come back and it’s something I’ve not been afraid of; I’ve taken it head on and, in all honesty, I’ve had a really good run on the first remission.

I officially released in August 2023 and we’re watching the bloods to see when we start my 2nd line of chemo, as they don’t want to jump the gun and used one of my options up too early. So, as I have a little break before chemo, I am rushing in my 2nd full shoulder joint replacement surgery which is currently pencilled in for December 18th Ho Ho Ho… I am currently practicing to open presents with one hand and my teeth as I’ll be in a sling for a wee while. I’m also going to get the Christmas lights up early also, God knows when they’ll come down though.

Lovely to be part of the group and apologies for the long pile of drivel above. I have a tendency to write quite a bit once I get going.

  • Hi Welcome to the group, though sorry you have had to come here.

    What does not break you, makes you stronger, yes double whammy for you,, and sorry for that.

    Though i was diagnosed, then my hubby, and two years ago my daughter.

     It is a long long road, at times, and we go along, we have no choice, we start of slow, then it speeds up, then we go threw the sound barrier, then slowly slowly things calm done, and we poodle along , until we  start to speed up yet again.

    They say life is not easy and at times we do find that out, though we keep going.

    You will get a lot of support here, everyone will support you, if and when needed, we all know how it fills, to go threw this.

    You can Rant, scream, laugh, cry, moan, we have all done it,

    Just wanted to welcome you and say Hi. xxx

  • Hi Rooneyfish (?)  A warm welcome to the Group. You are now among friends who know exactly how you are feeling! I have Malignant Melanoma Stage 4 and my husband was diagnosed in September this year with Bowel Cancer and is currently recovering from surgery. This is a rollercoaster ride with lots of ups and downs but you learn to go with the flow! I think it is definitely worse for our children, whether they are young or adults it still hits them hard!

    I see you are in another Group and wonder if you have filled in your Profile Page there. If I were you, I would copy and paste what you've written and then open up your profile page here and paste onto it. That will save you writing it all again. When someone new joins, most people will click on their username to find out the story behind the post. You can do this as well.

    I hope whatever treatment comes next for you gives you a much longer period of remission! You can chat here about anything you don't want to worry your family with and it helps just to get it off your chest!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Ellie,

    Thanks for the reply, much appreciated. You're right with the speed change of life, you know you have a nice and relatively calm period but always knowing that the next speed bump is on its way. Gutting to hear that all three of you have been affected, it's bizarre sometime how something like this can carve its way through people's lives. 

    I think we're lucky in that my wife and I are pretty much pragmatic people and take it on the chin. That's not to say it doesn't affect us, but we try and work around everything as best we can. For me, I know the end is coming and I've prepared as much as I can for leaving my wife and daughter. I want to leave as little as possible for them to do as they'll have enough on their plate. Mind you, I keep finding other things to do pretty much every week so my job list grows, and I enjoy doing it while I can.

    My daughter's mental health isn't fantastic, and she doesn't know about the very latest change in my wife's condition - we will however let her know once we know for sure as we promised her from the very start that we would not hide anything from her. We know her cancer will return but due to the way it spread and her super reaction to her chemo, it's a very uncertain prognosis. That makes me worry more for my daughter, although she is growing more now that she's in college. I was given 7-10 years back in 2019 with a best bet of a 3-year remission which is what I've had. Currently each remission is rated at only 50% of the first, giving me a relatively good gauge on my timeline. That's only ever a guess though, based on averages so like interest rates - it can go up or down. 

    Lovely to speak with you and thanks for the reply.

    John

  • Annette,

    Thank you so much for the info on the profile page etc. I've got things to learn on how the Macmillan pages work as I never realised you had separate profiles for different groups. I'll aim, to have a look at this tomorrow with a bit of luck and try and sort that out.

    Sounds like you guys are going through the wars also, so sorry to hear about it all but I guess we are all in the right group. One of my old school friend's husbands is going through bowel cancer, although in all fairness I don't know much as I've only recently reconnected with her on Facebook. My father in-law had bladder cancer that spread, and he went through multiple operations to try and sort things. Luckily, he managed to come out the other side, but he went through hell with multiple operations to the point now he's refused anything else. He's got a hernia the size of a tortoise! Both of my in-laws are not doing well now and are probably on the radar for trouble as they are in and out of hospital through COPD and possible mini-strokes etc.

    Sadly, unless some Lab Rat comes up with something soon my remissions are set to generally be 50% of the previous so I have a rough guide as to how things are likely to progress. However, I'm okay with that it's more the effect things will have on my wife and daughter that concerns me more. 

    Thanks a million for the message and I'll try and work on the profile bit tomorrow as I'm starting to flag after a busy day - what a knacker I am eh? Laughing

  • Hi i have always had a positive attitude, though some times, i do drop my guard then come back up.

    My daughter was Diagnosed with Breast Cancer, had a mastectomy, and reconstruction, though got an infection in it and landed up with sepsis, she has now been diagnosed with PTS though she is doing well.

    I did say to my oncologist if i had not taken the last treatment they offered, i would be long gone, yes she said, so now i go with the flow.

    I did lose my hubby, eight months from his Diagnosis, never ever thought he would go before me, though another story now.

    Reading your post, really we could all right a little book, what an adventure we are all on, talk about a road trip, like  know other, like we are travelling the globe, here there and every where.

    I think we all protect our,  children, the best we can, even though, mine are all adults, still my kids, though since their dad went, i do tell them more. when i have to.

    Been good talking, and others will come along, you will fill as this is a second home, at times.

    xx

    o

  • Blimey R. fish,

    I hate using the word journey but you have certainly been on a round the world one.

    no one can forecast the future, the longer you go on, the more chance of trials and other options.

    8 months to a year in 2017, and I’m still here. Sell by date well out of date!

    good luck.

  • Hi Rooney, welcome to our exclusive group of lovely people. My you've been round the block we'er here to rant rave, cry, laugh with . I hope you and your wife had a decent night's rest with your oils, need to remember that one incase needed in the future. Sending hugs and good vibes to you both. xx

    Moi

  • Hi  

    Hello John and a very warm welcome to the group. As you have already found out, you will find a lot of support and experienced information here. Just to be clear, we don't have separate profiles for different groups. Your story is your story. Just click on your username then profile and save when you've written it or as Annette suggested, when you've copied and pasted. You can read anyone's profile by clicking on their username. I am currently stable after treatment but who knows how long it will last. Chemo is my only line of treatment so whether it works or it doesn't is my prognosis. Is your daughter receiving help and support for her mental health? It must be very tough with both of you being unwell. I like your dark humour, the clown car analogy was good. Dark humour keeps me going but not everyone gets it. The very mention of death makes some people uncomfortable as it forces them to confront their mortality. I worked in the NHS and to me, death is part of life. Anyway, hope you get lots more replies and hope your surgery goes well.

    A x

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  • So, so sorry to hear about your husband. For me that's an option that I do think about and would not want my wife to go before me, which I know is a selfish thought. 

    Funny you mention about writing a book, I did. Admittedly it was during my first year of treatment where I was quite unwell and also going through the early stages of my partial sight loss. It was hard to physically write it as my eyes caused me so many errors, typos etc. and it's taken me a couple of years for my eyes to settle and for me to also find the best ways I can adjust my IT to make things as user friendly as possible. Hence the book was no prize winner, but it was designed as a tool to keep me bust whilst off work and to also try and raise some money for Myeloma UK. It's a Kindle book called 'The Road to Myelomaville' and is, as you can guess, designed for a very niche market as there's not that many of us with Myeloma. Writing it certainly filled the time as my appointments were always hours late.

  • I've certainly earnt some air miles I have to admit and it's been a ride. 

    If I can keep chugging along enough for a genius in a white coat to come up with some solution, then I can't ask any more than that. Since I had my stem cell transplant in 2020 I know the views on this as the best option are starting to waver a little with new drugs coming into our field. I'm realistic about it all though so I'm not expecting miracles as we often see those farther down the line in treatments aren't always open to some of the new treatments. If those following me do get a chance however then I'd be happy with that and I'm open to trials for theta very reason - to help those that follow. 

    Great to see you proving those sell by dates are not worth the paper they are written on, good on you and keep that journey going.