August 2019
1 Kudo
Hi Trysta, I can relate a bit to what you are saying. My husband is having a relapse of Follicular lymphoma, and I can relate to all the emotions you describe. I'm glad you found this forum! Another great place to go for support is the facebook page 'Caring for Husbands with Cancer'- which is exactly as it sounds, a forum for women who's husbands/partners/boyfriends have cancer. It is extremely supportive and very active (it now has about 1400 members from across the world!) You are definitely not alone. Hugs, Emily
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March 2019
This is a beautiful tribute Neville, Barbara seems like a very special person. Thanks for posting.
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March 2019
1 Kudo
I'm so sorry you are both in this situation. It's so hard. But I'm glad you've found this forum. It's a great place to vent/ask/encourage and just connect with other people who are affected by cancer. My husband was diagnosed with stage 4 Follicular Lymphome in 2011, so I know a bit about what you're going through. For about 12 months I've been a member of a Facebook group 'Caring for Husband's with Cancer', and they are great as well. It's a big group now, about 1200, so really active, and very encouraging and supportive. I encourage you to join that as well- there are guaranteed to be women who in your demographic in similar situations. You are definitely not alone. Sending encouraging hugs, Emily
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March 2019
Hi Chickhens, I'm so sorry both of you are in this situation. The only advice I have for you is take one day (or even one hour) at a time. You will cope, and you will do what you need to. I'm so glad you found this forum, it's a great place to get support and the Cancer Council itself is a wealth of knowledge and practical help. If you would like something more specific (and are on Facebook) there is also a facebook group called 'Caring for Husbands with Cancer' which is specifically targetted to women in our situation. (My husband was diagnosed with lymphoma in 2011 and has been in remission after 6 months of chemotherapy). It it really big now (nearly 12000 members from all over the world!) so it's very active and very encouraging and suportive. Know that you are not alone. Love and hugs, Emily
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March 2019
9 Kudos
This was written by a member of "Caring for husbands with Cancer" just yesterday (shared with permission) OK ladies, I am getting overwhelmed with all the ‘mean’ cancer [patients] out there. I think we need a Carers Protection Society. Honestly, I think it is time we spoke up collectively about this, instead of suffering silently behind closed doors, choking on our tears alone. We are kind, compassion, caring people. Their situations are damn tough, but it is not OK to be treated badly because of their suffering. Just because they are having a crappy time, a most nerve shattering experience, doesn’t give them the right to abuse us who are giving up nearly everything just to help them stay alive. Time to take some action ladies, the line has to be drawn somewhere.
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March 2019
4 Kudos
More importantly, what can be done about it? There are about 1100 members of an international facebook page I belong to - 'Caring for husbands with Cancer'-and I reckon about 30 of them at any one time are dealing with significant abuse, and they're just the ones that post about it. Only about 2 have left their husbands, and the catalyst has been physical abuse of their children. Is there any way counselling can be made a standard part of treatment for people diagnosed with cancer? (I don't want to say this is an issue only with male cancer patients) Also, are there any safeguards put in place when people are prescribed medications known to cause aggression, such as steriods? 'Chemo rage' is a phenomenan known to Oncologists, but what protocols are put in place to ensure the safety and comfort of people sharing a house with the 'rager'? I would like to see the Cancer Council advocate for carers in this regard, and any suggestions you may have about what members of the public can do to help would be fantastic. I really appreciate the service the Cancer Council provides. (I'm also aware that your organisation is the cancer council of NSW- is there a national organisation we can recruit as well?)
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February 2019
Hi Peshet, what a dilemma! If I was in your position I would feel like I would need more information- is there any way your husband can have one treatment at the higher dose (that would take 3 weeks) and then make the decision? That way he would be able to determine if the higher dose was tolerable, or if it would be better to have less radiation for longer. Either way the outcome is going to be the same though, so there's really no wrong answer, it just comes down to what you and your husband think would suit you best. I wish you all the best. love Emily
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February 2019
Hi Amanda, unfortunately I'm hearing this kind of thing a lot (I created a post about it not long ago- feel free to read it if you want). I belong to a facebook page called 'Caring for Husbands with Cancer' (my husband was diagnosed with non Hodgkin's lymphoma in 2011) and this seems to be a common problem. It can be the medication people are on, it can also just be a destructive way of dealing with the understandable stress, anxiety and grief of having cancer. I also think it would be helpful for your friend to discuss it with her husband's doctor, because if the medication is causing the problem it's relatively easy to fix, and either way your friend and her husband need some clinical support for this situation. I can also recommend the facebook page 'Caring for husbands with Cancer' to your friend, too- it has over 1000 members, so it's very 'active' and you get some great support and understanding from other women in the same situation. Your friends are also lucky to have someone like you looking out for them- having a spouse with cancer can be very lonely, and any type of interest or support from friends is extremely valuable. Please let me know how they get on. love and hugs, Emily
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January 2019
10 Kudos
I belong to a Facebook page called "Caring for Husband's with Cancer". It's really big now, international and has over 1000 members. The reason for this post is that more and more women are posting about how abusive their husbands are (ususally emotionally and verbally abusive.) There have been three women in the past week posting that they can't take the abuse anymore and want to leave their husbands. One is planning to leave (her husband was abusive before his cancer) and two feel too guilty because of their husband's cancer and can't afford it. It this something other people have experienced? My husband was diagnosed with stage 4 Follicular Lymphoma in 2011 and did not become abusive at all, but he is able to express his painful emotions in a contructive way. Is it because these men only know how to express pain and fear as anger? Sometimes it is the medication they are on, and once their Doctors are made aware of the situation and a different medication is prescribed they become pleasant again. Sometimes the relationships are not great before the diagnosis, and obviously cancer makes everything worse. Sometimes it comes out of the blue, and women who are stressed out of their brains trying to care for their husbands, work, manage finances and in some cases raise children as well have to deal with being abused on top of it. I'm wondering if counselling should be prescribed as part of cancer treatment to avoid this? My cousin became a quadraplegic and counselling was as much a part of his rehabilitation as physiotheray- I'm wondering if it should be the same for cancer. Does anyone have any thoughts on this?
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January 2019
2 Kudos
Hi Katie, I'm so sorry your family is going through this. My husband was diagnosed with stage 4 Follicular Lymphoma in 2011, so I understand a bit of what you are going through. The only advice I can really give you is buckle up! This will be one of the most traumatic and exhausting experiences you will have, so make sure to keep yourself in good condition as much as possible. Don't listen to anyone who creates stress in your life or disrespectfully questions your decisions, keep your supporters close and don't be afraid of leaving people behind if they drag you down. This time is about you and your family. And don't be afraid to say yes if people ask if there is anything they can do. Maybe even keep a little list of jobs that need doing, and if someone offers to help give them a job that would be appropriate. Often people want to make things better but don't know how to- by asking them to drive someone somewhere or take care of a load of washing you are enabling them to make your lives a little bit better. And keep in touch! This forum is a great place to come when you need support. I wish you happy moments each day, love and hugs, Emily
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