https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12615#M133 Hello Emily Thank you I will definitely stay in touch, can I ask how old your husband is? It seems when we go for treatment John my Husband is the youngest there. Its like everyone else has much more severe cancers which makes his seem insignificant and he shouldn't complain.We are lucky we can have treatment in our home town Bendigo country Victoria and don't have to travel to Melbourne much. The Oncology Department are an amazing Team the Dr and nurses are just brilliant. Our live have certainly changed My husband doesn't share his feelings very well or like talking about his illness with me or others and doesn't like talking to Councillors.He has moments where he shuts us all out. We attended his cousins funeral last year he also had NHL for several years but developed a Brain Tumor.Jimmy was the same age as my husband John. Can you tell me a little about your husbands moods, emotions during your journey. I say your journey because despite my husbands thoughts about he is the one with this illness we are in this together and it affect the whole family. RenyHill Mon, 02 Dec 2013 22:07:08 GMT RenyHill 2013-12-02T22:07:08Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12612#M130 hi my husband(47Yrs old) of 27 yrs as of last week was told he has NHL stage 4 18 months ago at Christmas, we have been on the CHOP R chemo journey every 3 weeks at first now every 3 mths . Our lives have changed so much I was wondering if there are any others on the same journey as ours.Would like to compare notes and experiences, emotions,mood swings coping tips. We seem to have lost our way a little.He has had reasonable results but for one lump that is still growing, he is having a Bi opsi and bone marrow done this week.Then PET scan at Peter Mac the following week.We are trying to stay strong and positive but it is hard sometimes so thought i would just see if there is anyone else on a similar journey Thanks Mon, 02 Dec 2013 04:52:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12612#M130 RenyHill 2013-12-02T04:52:37Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12613#M131 Hi Reny, my husband finished chemo for stage 4 NHL 2 years ago. Feel free to message me if you want to compare notes, vent or ask any questions. He's doing really well, and has been in remission for 2.5 years so far. I hope this is encouraging for you. love and hugs, Emily Mon, 02 Dec 2013 09:25:32 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12613#M131 little_stitcher 2013-12-02T09:25:32Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12614#M132 Hi, I have Follicular NHL stage 4, diagnosed in July. I am 34 and am 4 months into a clinical trial chemo-antibody regimen. I am having Bendamustine and GA101 every 4 weeks but would've been on R-CHOP if the trial wasn't an option. It is tough, but I am trying to stay positive. There aren't a lot of NHL patients under 60 so it is isolating dealing with this while managing 3 young children and a part time job. Happy to discuss and compare notes etc. Kind regards, Catherine Mon, 02 Dec 2013 10:34:02 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12614#M132 Catherine251 2013-12-02T10:34:02Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12615#M133 Hello Emily Thank you I will definitely stay in touch, can I ask how old your husband is? It seems when we go for treatment John my Husband is the youngest there. Its like everyone else has much more severe cancers which makes his seem insignificant and he shouldn't complain.We are lucky we can have treatment in our home town Bendigo country Victoria and don't have to travel to Melbourne much. The Oncology Department are an amazing Team the Dr and nurses are just brilliant. Our live have certainly changed My husband doesn't share his feelings very well or like talking about his illness with me or others and doesn't like talking to Councillors.He has moments where he shuts us all out. We attended his cousins funeral last year he also had NHL for several years but developed a Brain Tumor.Jimmy was the same age as my husband John. Can you tell me a little about your husbands moods, emotions during your journey. I say your journey because despite my husbands thoughts about he is the one with this illness we are in this together and it affect the whole family. RenyHill Mon, 02 Dec 2013 22:07:08 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12615#M133 RenyHill 2013-12-02T22:07:08Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12616#M134 Hi Catherine yes it does feel very isolating being so young and having NHL, I hope your journey is a positive one. Also I hope you have a good support network as I believe this is important to your recovery.Our motto is this is just a bump in the road and we have a 4wd so we will get over it, but it has changed our lives forever and at times it is hard to stay positive. Thanks will stay in touch Renyhill Mon, 02 Dec 2013 22:15:34 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12616#M134 RenyHill 2013-12-02T22:15:34Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12617#M135 Hello Emily Thank you I will definitely stay in touch, can I ask how old your husband is? It seems when we go for treatment John my Husband is the youngest there. Its like everyone else has much more severe cancers which makes his seem insignificant and he shouldn't complain.We are lucky we can have treatment in our home town Bendigo country Victoria and don't have to travel to Melbourne much. The Oncology Department are an amazing Team the Dr and nurses are just brilliant. Our live have certainly changed My husband doesn't share his feelings very well or like talking about his illness with me or others and doesn't like talking to Councillors.He has moments where he shuts us all out. We attended his cousins funeral last year he also had NHL for several years but developed a Brain Tumor.Jimmy was the same age as my husband John. Can you tell me a little about your husbands moods, emotions during your journey. I say your journey because despite my husbands thoughts about he is the one with this illness we are in this together and it affect the whole family. RenyHill Mon, 02 Dec 2013 22:19:00 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12617#M135 RenyHill 2013-12-02T22:19:00Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12618#M136 Hi Reny, my husband was diagnosed when he was 39. He was usually the youngest patient in the chemo ward by several decades too(but not always.) His moods seemed fairly stable throughout- he's never been a particularly moody person. I think he was able to express as much of himself as he needed to, although he is English, and was bought up with a 'stiff upper lip' etc, so it wouldn't have been easy. He was very practical and resolute throughout. He is now 2 years post treatment, so it seems for the moment like that part of our lives is over. He is really busy just living- he's just started a new job, has developed some new hobbies and is just getting on with things. Unfortunately his cancer was diagnosed in the context of a couple of years worth of really severe job stress, culminating in redundancy earlier this year, so I think he's coped remarkably well with all the s*** he's had to go through. Maybe you just need to give your husband time. He will react to this the same way he's reacted to bad stuff in the past, so unless he isn't following his usual pattern I wouldn't worry unduly. Take care of yourself, too. It's definitely true that cancer effects the whole family- I used to feel like 'we' had cancer, it just happened to be in my husband's body. Take care and keep in touch, love Emily Tue, 03 Dec 2013 06:58:09 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12618#M136 little_stitcher 2013-12-03T06:58:09Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12619#M137 Hi Reny, Thanks for your kind words. I do have a good support network, and it helps that my mum is in remission from having NHL 4 years ago. While cancer does affect the whole family, I think women and men manage it very differently. While my husband has been privately upset and stressed by my illness, I do feel very alone in my fight. His way of showing support is to help with the housework and kids during my chemo week and sit with me in the chemo day unit. In terms of emotional support, he really doesn't feel comfortable. I am rarely upset, but when things get to me he has trouble giving me hugs and supportive words. If I complain about the insensitive words of others, he will defend their intentions instead of acknowledging my feelings. Us women are more adept at putting ourselves in the shoes of others and nurturing those we love. My children have been upset and anxious at times, but as time goes on it seems like 'old news' and life is some semblance of normal for them. This can be a good thing as it reduces their anxiety, but not so good when the side effects worsen each chemo cycle. Each family copes with circumstances differently but at the end of the day the common thread is strength and unity. Catherine Tue, 03 Dec 2013 09:29:25 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12619#M137 Catherine251 2013-12-03T09:29:25Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12620#M138 Hi Catherine, I am in a similar situation and for now I'm not on treatment. I hope your treatment worked well for you and you are enjoying a good health. I think you were quite lucky to get that treatment. What Hospital did you go to? Season's greeting, Koala Wed, 30 Dec 2015 06:03:49 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12620#M138 koala 2015-12-30T06:03:49Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12621#M139 Hi Catherine, I am in a similar situation and for now I'm not on treatment. I hope your treatment worked well for you and you are enjoying a good health. I think you were quite lucky to get that treatment. What Hospital did you go to? Season's greeting, Koala Wed, 30 Dec 2015 06:05:52 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12621#M139 koala 2015-12-30T06:05:52Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12622#M140 Hi Renyhill. I'm in a sort of similar position to you. My 41 year old boyfriend has multiple myeloma. It was only about a couple of weeks after we started seeing each other that he was told he was no longer in remission. I know how hard it can be. Back in 2014 when he was re-diagnosed we were told to expect him to be having a bone marrow transplant by April of that year. As most know though cancer plays by it's own rules and now in January 2016 we are no closer to the transplant than we were back then. Multiple myeloma is generally known as an "old people's disease" and I often find myself thinking he's too young for this. He too is often the youngest in the waiting room or wards at the times when he's been admitted. It's a really hard thing to have to confront. He can be tired, irritable, forgetful and even plain flat out rude at times during treatment. While I understand what it's like to feel like crap, be frustrated at not being able to do the things he wants to do etc, I also understand what it's like to be on the receiving end of that which can sometimes last a few days. I've not coped particularly well with the situation overall I must say. I have a history of severe depression myself and tend to use alcohol as a coping mechanism, a habit I'm trying hard to break now as I know I'm not doing him in any favours with his recovery if I'm getting plastered. For me it's not so bad when we can have at least one day a week of some sort of "normal" - you know go out for dinner (or even have dinner together), not have to leave somewhere when he's tired, he's achieved something for the day which puts him in better spirits all that kind of thing. It's those stretches when those bad days stretch into weeks with seemingly no end in sight that I struggle the most with the disease and myself. I have feelings of total guilt when I'm angry and upset that he doesn't have the energy or is in too much pain so can't go to family events or plans are spoilt and yet at the same time I'm the first one to tell him to stay home if he's undecided and clearly looks like it's going to be a struggle for him. I battle the feeling of being a grade A bitch at times like those. Plenty of people miss out on a lot more stuff in life than that and I should just be grateful for the days we do get to be like any other "normal" couple. What I've found hardest about finding people to support those who are caring for someone with cancer is that a lot of times people don't really understand how heartbreaking it is to deal with day after day, it is draining and does take its toll. Anyway I'll stop rambling now and hopefully something in there has helped you. Fri, 15 Jan 2016 05:38:03 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12622#M140 Flazum 2016-01-15T05:38:03Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12623#M141 Hi, I had NHL when I was 21 a year and a bit ago. I had primary bone DLBCL which is rare. The R-CHOP and radiotherapy treatment was very successful and I am clear. I am open to any questions that might help you or anyone else. Sun, 17 Jan 2016 11:04:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/lost-confused/m-p/12623#M141 LimeGreen_14 2016-01-17T11:04:10Z