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~lezah~

My husband has cancer

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marvy

Lezah I remember you from a long time ago as well!!

I am so sorry to hear your husband has to do battle with the god awful C, I am feeling really angry with that disease right now, it is giving two good friends of mine a lot of grief at the moment. I have found myself visiting this forum a lot lately and being amazed at the strength and courage some of us humans have to find from somewhere. You are one of them.

I hope Wayne is feeling a lot better after the Chemo.

Were you a Brisbane girl originally?

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~lezah~

So, I know its totally frowned upon to bring up an 'uber-old' thread' .... but it makes me both happy and sad to go back through my darkest moments and the support I received from my friends through those scary years.

 

Let's cut to the chase - Wayne is alive and well!

 

I'm not going to delve into the detail except to say that stem cell treatment bites and Wayne has declared that he alone will decide if he puts himself through it again.

 

In other news, our boy is about to turn *10*. I know this was one of Wayne's personal survival goals - next one is 21!, so if the last few years are anything to go by, he's going to do it.

 

Cancer has given us some unexpected blessings - we've actively lived by the philosophy of 'Live the day' and have had the most amazing few years together as a family.

 

If my plight teaches anyone anything, please let it be to tell your loved ones how you feel everyday - and live everyday like its the last. Its a truly awesome way to live.

 

<3

 

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baddmammajamma

Lezah:

 

I am so glad that you gave new life to this thread. How wonderful to hear that your husband is alive and well! May he continue that way for a long, long, long time.

 

Best wishes to you and your wonderful family.

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But seriously

hugs here too

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wiggles

hugs here also

 

 

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By the way

I never read your thread initially but I have tears reading your update. That's fantastic. He sounds mentally strong and that's a big battle right there. I hope you have years and years and years of amazing adventures.

We expect and update photo of you all at your sons 21st :smile: .

Best Wishes to you all.

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Chelli

I'm another who remembers you back from the "teal" days of EB and moderating, and so pleased you have come back to give an update. So wonderful to read Wayne is alive and well :wub:

 

Lots of love to you all xx

 

Chelli

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jtsmith83

OP, I can't say I know what you're going through but I'm sending you love & light. I'll be saying a prayer for you, your DH & DS tonight. Be strong, thinking of you. :bighug:

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kim11

HI Lezah

 

I saw this topic this morning and was going to reply but my reply was too slow and I had to get the kids to school. But I just realized your initial posting was from several years ago and this was brought up as an update. I was going to offer some advice since my husband was diagnosed with cancer about 2 months ago- stage four lung cancer not related to smoking, we blame it on air pollution from living in Hong Kong for 3 years, until March this year.

 

I read a few of the posts and saw that your husband is well and hoping for another 10 years, that is great. My husbands prospects by the stats are 18% chance to make it to 5 years but that is just the stats on the computer and for much older people. He actually has a better prognosis than that since he is not having any lung involvement right now and is very healthy. He has started chemo and his blood cancer markers have gone down by 50%. Along with his inital response to chemo and a few other things about his tumour, a few gene markers and trials that will help we are very positive and hopeful that he will put it inot remission. His oncologist and specialists are also very positive.

 

It was good toread that you were also angry at one point with your husband initially. I am home now after dropping him off at chemo and very angry at him. I am a very positive person adn he is a very negative person at times. He spent most of the weekend, angry, assuming the chemo wasn't working and that he would be dead in a few months. Blood results today show that it is working really well.

 

anyway, sorry for the digression, I am home and calmed down and happy to hear your news. Any news about someone beating the odds is inspirational and great to hear. I am glad to hear you have enjoyed every day to the fullest as we are learning to do that as well. No one knows what the future holds and hopefully we can steal a few more momments before we go. I hope you have many more years ahead with your husband and family.

 

 

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RachH

Hi Lezah. I remember you from waaaaaaaay back in 2001. My DD is a few months younger than your Charlie. I am so glad that Wayne is doing well and that you have experienced blessings during adversity. Wishing you and your family all the best for a long and prosperous future :)

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Gangnam Style

.

Edited by Disappointing

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chat
If my plight teaches anyone anything, please let it be to tell your loved ones how you feel everyday - and live everyday like its the last. Its a truly awesome way to live.

 

I totally agree. I lost a family member to cancer who was too young to leave this earth and it hurts...it bloody hurts. It was the hardest thing I have ever faced. I still miss him and will until my time comes. I have learned to enjoy my life and follow my dreams. Thank you for the update.

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lezah

Ladies

 

As always, you continue to inspire and delight me - if I sound like a broken record, sorry, but thank you all for your messages and best wishes.

 

Quite a way back in the thread, I was asked what Wayne's prognosis was - I think I 'accidentally on purpose' didn't answer it, because typing it would have made it real..... In September 2007, I was told that Wayne was unlikely to walk again and had a 'good' shot of living another 3 or so years.

 

And I knew that if I told Wayne he was never going to get out of the wheelchair, he wouldn't have made it three months

 

In just a matter of days, we'll celebrate Wayne's 4th year post-diagnosis - not that we really 'celebrate' - in fact, its pretty much just another day.

 

A few specific call outs

 

It was good to read that you were also angry at one point with your husband initially.

 

Kim - I *so* hear you. Chemo turns our most beloved into ... well, quite frankly, bastards. I didn't stay with Wayne during his second stem cell transplant because he was so horrible to me during his first (which he acknowledges - now) that I felt like I had no sympathy left. Sometimes now, I get accused of being 'cold' when he's in pain - I'm working on it, but sometimes it feels like a hiding to nothing.

 

 

And Silverback - yup, you remember me - I am Hazel (my grandmother's name) backwards. While shocking and horrifying to watch my DH go through two stem cell transplants, my heart goes out to you having to go through it with your son. If he agrees to go through it again, Wayne will have to have an allogeneic transplant. He has flatly refused to allow Charlie to be tested as a potential donor and I believe him when he says he isn't sure if he could do it again, mentally, emotionally or physically.

 

 

So, here's the deal - if you guys keep posting, I'll keep replying!

 

 

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Snagglepussed

You are a strong strong lady Lezah. Love to hear your updates and am sending you all the positive vibes I can muster! Live each day like the last is something we should all do!

Our lives can change at traffic lights and invariably do! :(

 

God Bless

Another oldie from the teal days!

(was girolama)....

Edited by Snagglepussed

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glitters

I'm just devestated for you & your families Lezah!! :hugs:

I absolutely can't imagine what you're all going through, i am praying that your DH goes into remission asap and that you all can look to the future and stay healthy. oh i don't know what i'm trying to say :(

 

:bighug:

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Angel1977

Lezah, I have just finished reading your story and I am SO glad to get to the updated reply to read good news. I think you are an amazingly strong person, who adores her family. I'd love to hear updates if you are able to post them, your writing style is a joy to read.

 

Take care of yourself :bighug:

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Gangnam Style

.

Edited by Disappointing

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alwayshappy

Lezah, I am travelling the blood cancer journey too. Well not me, but my 31 year old sister. She had Hodgkin's Lymphoma, so some similarities to multiple myeloma. She had a SCT in July last year and is currently in remission. She is also on a trial drug. SCT's are evil procedures but they do cure many people, or at least extend life and quality of life. It is incredibly distressing to watch someone you love go through them. My sis is faced with an allogenic SCT if she relapses.... not a nice thought at all.

All the best to you, Wayne and Charlie. Keep fighting the good fight.

Regards,

alwayshappy

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jules363

Oh Lezah, I am so happy to get this update, I can't tell you! I have wondered about you and Wayne many times since this thread, and I am afraid I did think the "worst", as we did not hear from you any more. So glad to be wrong, but so sorry to hear what you have gone through. I have seen a friends child go through SCT, and it is absolutely cruel. Lifesaving, but very, very hard on everyone.

 

 

Edited by jules363

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lezah

Girls

 

I'm always so happy to see your relies - especially now that I've heard / read some of your own stories.

 

I can't help with the 'I don't know when . how" diagnoses.

 

I got told fairly 'straight up' that Wayne's condition was terminal - ok - I got told *very* bluntly.......

 

But credit to his doctors, noone's ever given up.

 

Yes, We live with a cancer that has no cure and where the best option of treatment has technically failed (but has maintained his count for several years - so I think 'fail' is misleading!

 

Anyway - as prompted by Jules - it'd be nice to have a carer's thread - it'lll be hard, to relive far too much stuff that I've chosen to bury - but I'm willing :-)

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**Kylie**

Lezah - I also remember this thread from ages ago, however, never posted......my husband also has cancer - (adrenocortical carcinoma or ACC for short). His cancer was first diagnosed in Aug 07 when they thought it was a pheo.....how I wish it had "just" been a pheo, even though they can be serious.......however, unfortunately it turned out to be ACC. It recurred almost 3 years to the day of his first surgery, and he had secondary surgery in Sept 2010 and removed the tumour (again!!), his spleen, half his pancreas and one of the blood supplies to his kidney.

 

ACC is extremely rare, and traditional chemo/radiation is not an option. He declined to take an oral chemo (the oncologist said he wouldn't touch it either), and we are just taking each day as it comes. We've also been told it is terminal, so we are becoming good friends with the hospital/oncologist/surgeon etc..... Our GP said pretty much to live its day like its your last which we've been trying to do.......

 

I also remember the anger feelings also (especially when it came back.....and I can distinctly remember feeling like I was such a b**ch for feeling that way) Guess it is normal?!?

 

I hate this disease!!!!

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maxim

Lezah, I have just come across this thread. I'm sorry for all that you have been through and very happy that your husband is doing well. My prayers that he will live a long, long time beyond your son's 21st.

 

Edited by bluebb

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maxim

And also Chyloe, I am also very sorry to hear about your husband's prognosis. I pray that as with Lezah's husband, terminal means many, many years away.

 

A big cyber hug to you both :bighug:

 

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Minimouse27

Hi OP

 

My dad has multiple myeloma & has had it for 18 years now...

 

It started in 1993 much the same way as your DH- horrendous back pain that felt like he was on fire. Back then the MM was caught in it's infancy & was diagnosed as a plasmacytoma so radiation was needed only. The oncologist who saw dad through then has been with dad on his journey since 1993 & is incredible... (we live in Melbourne)

 

 

In 1996, dad's neck started hurting...MM was back with a vengeance & spread. This time, some crazy doctor at the Alfred where dad was donating stem cells (in prep for his bone marrow transplant) said six months max. Horrible man.

 

Lots of chemotherapy, radiation, autologous BOne marrow transplant- cocaine to numb his throat due to pain- liver shutdown... He got through it!!!! By 1998, he was a new man... His amazing oncologist never EVER gave up!

 

this cancer lay dormant until 2004 where a freak car accident (minor one, p plater was smsing & rear ended us) caused some of the cancer cells to get active in one of his verterbrae. A couple of months after this accident he started getting tingly legs & losing hisbalance. He had a tumor on his spine that was enormous. We had the top doctors St Vincents operate within 24 hrs before the tumor caused paralysis. Chemotherapy followed under the care of his oncologist followed by 6 weeks radiation & guess what?? All clear again...

 

Since 2004, dad has been very well!! His ability to walk for hours is impeded granted but he is working & living life to the full....

 

He sees his doctor twice yearly for blood tests...

 

ETA- just read the entire thread and noticed you are in Qld.

Also, my dad was 33 when first diagnosed (which was considered extremely young).

When they told you bluntly it was terminal- GRRR- that angers me. MM is not curable, but you can certainly live with it.

 

Your update really warmed my heart :) your DH and yourself sound immensely strong!!!

 

Thinking of you both :-) I want to see a pic of DH at your sons 21st. My dad used to want to see us get to 21 but he has witnessed graduations from uni, my wedding & a grandson this year.

Edited by ninack

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alphabetical

What a heartbreaking story. I am so sorry for you and your family. We think we are having a bad day with cheeky 5 year olds, whinging 2 year olds and a newborn who won't Sleep, but we forget that these are the easy days compared to what some people have to deal with. It puts everything in perspective and reminds me not to sweat the small stuff. It sounds like you have close family and I hope you can take as much help as is offered to you. There are some fantastic services on offer for carers, most of them covered by Medicare. You should speak to centerlink about them. My mother was offered them when my dad had cancer. Some are just options for time out for carers to take care of themselves like massages etc. You have a tough road ahead and I wish you strength and most of all i hope you have good news after your husbands treatment :)

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