lost,confused

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lost,confused

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
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Re: lost,confused

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
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Re: lost,confused

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
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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
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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
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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
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Re: lost,confused

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
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Re: lost,confused

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
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Re: lost,confused

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
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Re: lost,confused

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
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