I thought I would introduce myself to Revive. I wasn't sure where to put this post, so I chose this sub forum.
We are both under 30 and have three children together.

This is my post made over on talkbloodcancer.

Hello everybody.
My husband was diagnosed with CML last year. He is a big man and I was worried about his health and pushed for him to have a check up with the dr and get some routine blood tests to make sure his cholesterol was okay. He had the Dr's visit at 11am and was in a hospital ward by 9pm.
They picked up his high white blood cell count and rang him straight away saying he need to go see someone as it could be leukaemia. Honestly, who says that to someone over the phone? "Could be"? Anyway, he was also diagnosed with ITP. We receiving lots of jabs about being greedy and taking two rare diseases

After the initial shock and first week in absolute tears dragging the kids and my pregnant self back and forth to the hospital every day, life started to return to normal.

Anyway, onto the interesting stuff.

-He is on 600mg of Glivec and has been for going on 9 months now. He has constant nausea and fatigue, bad bone pain, and occasional swelling and his skin has only recently started breaking out on him.
-His blood work was brought down to normal within a month or two of starting Glivec. I think he reached the second phase of remission within 4 months. However everywhere I look everyone has different stages.
-He has already had three bone marrow bi-biopsy's and each one has shown he is reacting well. First one was for the Ph chromosome test, second showed no Ph chromosome but there was still the cells that created it (if that makes sense?), and the third one showed fewer cells than before, by a lot.


I know he is lucky and that treatment is working very well and extremely quickly, but life is still difficult.
The treatment is worse than the disease in terms of side effects and I struggle a lot of the time as I feel like I am looking after everyone by myself.
But I would rather have him here than not, so this is the path we were given

Thanks for reading,
Social

I won't use first names or give any specifics out as we like to keep this private, for the most part. So please don't feel as if I am stand offish

Social.

Hello again Social

I recently came across this _link_ about parenting when you have cancer. It's a _link_ to a podcast which I haven't had a chance to listen to as yet but it may be useful for you and/or your husband.

http://www2.healthtalk.com/go/cancer/supportive-care/webcasts/when-mommy-or-daddy-is-sick-parenting-with-cancer

Hope this helps
DanT

Thank DanT,
I found it to be all about children and how to address issues with children. I find out issue is the work load both of us have. Our children are too young to grasp the concept of cancer at the moment. We struggle just keeping who we were a live. We are both no longer 'happy' individuals and find putting on a brave face very hard, especially since I need to hold the home together and my husband still has to go to work to support us all. I appreciate the _link_ though. The website looks very useful.

Thanks
Social

Hi Social

Lisa & Gerald here we wanted to reply to your message as we have recently been through AML while pregnant with our second bundle of joy. Can't believe you husband has to work while going through this - I was lucky enough to receive extended sick pay from my employer for the first 3 months then my wife applied for 'financial hardship' with our bank, which allowed us to suspend our mortgage for a period of time (3 months - can be longer as agreed with your bank). This meant we could actually live on the benefit that we received from the government. (Just covered our mortgage payments) Every bank by law has to do everything in it's power to help you through financial hardship - although they don't like anyone knowing of this - and each bank has a department dedicated to this!!! they hide in the building where no one can see them LOL.

We were lucky enough to give birth to a baby girl 2 day's after we received word that Gerald was in complete remission... What a couple of weeks they were Hannah is now 4 months old and has just woken up and will want a feed so I'll pass the keyboard over to hubby who is sitting next to me.

Just to give you a brief rundown, I was diagnosed with AML on Grand Final day last year. I blame Port Adelaide myself, They won the GF 3 years previous on our Wedding day and last year they got thumped. Like you I went to the doctor for a severe cold and found myself in hospital the next day. I spent 3 months in hospital in 4 week stints. Chemo lasted for a week each time with a couple of weeks for blood levels to get back to normal.

I hope all is well with the kids. It can be pretty tough when Dad's not well but the more cuddles you give them the better they cope.

Hope all is well for you today, keep smiling

Gerald and Lisa

Hi Social

Just rememberd an episode of Oprah I saw on my last day in Hospital. I took a pretty positive approach to my treatment but this guy just blew me away. Checkout the _link_ below. Hope it helps

Gerald

http://www2.oprah.com/health/oz/oz_20071022_350_106.jhtml

Hi all. I'm Rochelle, I'm 33.
My hubby(35) is in remission (again) from NHL.We have 2 beautiful little boys, 5 & 7.
It's been almost 2 years since diagnosis, and been in remission this time about 9 months. It's great to read about other families in the same position - sometimes I just feel so alone with my thoughts. Surviving is feeling harder than the treatment at the moment - seems crazy to say that, the treatment was terrible, but this time is a real struggle.It's been almost 2 years since my hubby has worked, and I had to give up my job to care for him for almost a year. We have kept up with the mortgage through the generosity of friends & family that did a few fund raising things to help us.The people around us have been fantastic. But you get tired of being needy and down, so the front of 'we are fine' starts and it's hard to talk about how we really feel. Not that it's all gloomy either, the cancer has gone from his body - just feel like it's still there in everything else though. Normal as it was just doesn't exist anymore. Would love to chat to others that are finding it difficult to move forward.
Rochelle

Imallbetter - I was watching Oprah when that show was on and I cried like a baby. He was so inspirational. However, and I don't mean for this to sound as morbid as it does, he had the ability to have a final time. To take time off work, to have his family halt life so they could spend time together and say goodbye. It feels like for us that we have to keep life going and we don't have the luxury of taking time off from life to make sure we stay healthy, physically and emotionally.

Rochelle - Treatment is what is knocking my husband around. He has been able to deal with the side effects to a point. It is the fact that he has to work while dealing with with it all and that is where the problem lies. I have found myself becoming a very resentful person. My grandmother recently died leaving a large sum of money to my mother. She has her life set up and has no need for the cash. We have put out hand up to say it would help immensely if we could get some money towards our mortgage. That way my husband can stay at home and look after the kids and get better and I could work. But she has pretty much said that she won't as if she pays off our mortgage then we won't feel a sense of accomplishment I get that it is her money but the fact that she has no use for it and attempts to talk to me about what she could do with it frustrates me and feels like a huge slap in the face. If my husband didn't have cancer we wouldn't be asking Everywhere we look friends and family are breezing through life care free money being thrown at them and we are here struggling financially and emotionally with three kids, a mortgage, and cancer.
I understand feeling like a drain. I feel as if I need to put a strong face on for our friends and family. We don't want my husband to be treated any different because he has cancer but the fact is he is a different person now and it is tough. Sometimes I wish our friends and family knew just how tough without having to listen to us complain.
I hope your husband is able to fight it again and again and again. I just hope he doesn't need to.

I know we will survive as a family and I pray my husband will be there at the end, but it is just the state we will be in that worries me.

Social

Hi Social
Lisa here - I certainly can relate to how your feeling as sometimes I think it's harder for the partner/wife as they seem to be the ones who have to 'hold it all together'. Gerald was admitted into hospital and I had to put Georgia into day care because I couldn't take a 2.5 year old into an isolation room as she would just tear up the place and Gerald and I couldn't get any time to talk. When Gerald stopped being paid we went on Governement support - Center_link_ benefit's, we got most of our day care costs covered and then our day care manager put in an application (only the day care provider can do this part - so ask them to if you use day care). The application was for financial assistance due to us both not working and then we had free day care!!! which helped keep me sane as I got some time with my husband. I would also look into suspending your mortgage, it took me a bit of time to get it organsied but even if you just say okay were going to take 3 months off just for our sanity. Get the government support - suspend your mortgage and put the kid's in day care... it will just give you both time to connect again and to work out how to go forward. I know it's a temporary measure but I was a real life saver for us, although he didn't have the option to work as he was in hospital for about six months - four weeks in with one week rest at home for treatment. I also saw a phycologist as she was fantastic in giving me the support and help I needed and also advise on how to get through it all. It felt good to have someone I could go and talk to that was just about me and how I was feeling. IF you go to your GP tell them how hard it all is and that you need to see someone they can put you on a program which is supported by the government also which pay's 75% of each appointment. I ended up only paying $25.00 for a session with a clinical phycologist. (I can't spell it LOL). I know this is a lot to take on and I hope I haven't bombarded you All I can do is tell you what worked for us in the hope that some of it may help you and your family.

I also used to write emails to everyone telling them of Gerald's progress - it was healing for me to get it all out - and all the replies would come back after each one which would pick us up and make us feel good. Also offers of support would continue to come then because I would drop hint's in the email....

We'll I had better go now and clean up my horribly messy house....

Love and light
Lisa xxx

Hi there, I was diagnosed with CML about 20months ago, when I was 25. Much the same as your husband I just went to the GP for a simple test (to see if I had started getting allergies or hayfever), I was rung up by my GP asking to see me and i said sure Ill come right over. She says 'oh Im not at work yet' I got off the phone and said to my work collegue, oh hell I think Im dying, ha, three hours later I was in the Royal Adelaide having Leukophresis (not certain of the spelling).

Im on the 800mg dosage of Glivec, and its hard to get used to it. Im one of these girls that incorporate some alternative/natural therapies into my healing. The one thing I wanted to say was if your husband is on a diuretic to keep the fluid retention down, I suggest (and I hope you dont mind my suggesting) Dandelion Tea, you can get it frrom any health food shop. I suffer from the fluid retention gaining anywhere upto 3-5kg in two days if I dont take the diuretic tablet, but since Ive started drinking a cup of this tea every morning I haven't had to worry about taking that pill for teo weeks now. Which sometimes can simply make you feel light swallowing one less pill.

I hope the side effects get better for him.

Song