Hi all My husband was diagnosed with Bowel Cancer in March and is currently halfway through his chemotherapy program. I have been feeling quite isolated as my family are all elsewhere except for my mother and we have a strained relatonship at best. I have three children who are each handling things differently and it seems noone is actually handling anything particularly well. I have always been the glue and am not feeling that strong myself at present. I would really like to connect with other carers and also like to talk to anyone going through the nightmare of cancer as it would be handy to hear all aspects of the journey. I keep hearing keep positive over and over again and now feel guilty for having 'down' times. Is this normail? My husband does not discuss feelings and abhorrs any sign of what he considers weakness so any discussion about his illness is made into a joke or brushed aside. I think he may need to concentrate soully on his cancer to cope with the things that are happening to him. He has also had to have an ileostomy. At 46 he has always been so fit and active, and the inactivity has made him nasty towards the children. I am not sure what to do as I am the meat in the sandwich and can understand he is feeling scared and frustrated. But of course I cant allow this to happen either, Has anyone else come across this kind of thing? I cant talk to my friends as they just think I am mean complaining when he has cancer but it is tearing our family apart. Am I being unreasonable? Can anyone help? I apologise if this is bringing anyone down. I am usually the queen of positivity. Sorry guys. Larn75
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Frequent Contributor
Hi Larn75, I am not a carer for someone with cancer, but I am a 36 year old young adult cancer survivor. I just want to say all those things you have expressed are SO VERY reasonable and i am sure you will find all these to be common feelings amongst those of you who are primary carers. It must be even harder for you though... as you are also a young mum trying to hold your young family together. In the young adult section of this site - or if you use the search tool in the 'People' section, you might find a few new friends to talk to who also have children and can share some stories, hopes and fears with you. Hang in there and all my best, Nikki
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Thank you Nikki
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Hi there Larn75 How are things going? As a mother I understand yoyur difficulty, yet mine is from another angle as a one year cancer survivor. Mum's naturally feel like we need to be the peace keepers and constantly feel guilty if our family is having a tough time as though we have to "fix it". Why we feel like this I'm not sure. It was interesting to hear that you felt there were times that your husband was "nasty" to your children; possibly resentful for not being as active as he used to be. I personally have been irritable and at times short tempered with my husband and daughter as I now struggle with being on my feet. I am not the same person and at times I have felt resentful that my husband can still go about his life; also being extrodinarily fit and active. I want to be the same woman I was and am still learning the "new me". Sometimes I want him to talk to me more about what we have ben through and I don't know if he can ever fully comprehend how different life is for me and how hard day to day stuff can be..I'm always tired but don't want to complain to him as he works hard too. I know from reading your side of the story that it's hard for our partners too..the fears, the frustrations, the anger....why us? We can't always be positive. It would be living a lie. But we can take one day at a time and that's enough. Let's chat some more soon. xxx
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Regular Contributor
Hi Larn, Ruby and Nikki, As a 2 year survivor, I still have great trouble with the fatigue and ability to cope with stress (mentioned this on another post I think Ruby).My husband was very supportive when I was very sick but I don't think he realised how sick I actually was. Your husband may also be feeling very isolated but because he is a bloke, he won't talk about it. I have always been the peacemaker and the gobetween in my family as well and so often didn't discuss those things with my husband which were really troubling me. Is there any way that your kids can be minded for an overnight stay or even a day and ask your husband what he would like to do that would be really special. In this atmosphere you may be able to talk with him.My kids were older but it wasn't any easier as no-one sat them down and talked to themabout what was happening. As a survivor, I guess we do become immersed/obsessed with what is happening to us and often very resentful. I used to find great solace when I was taken for an "airing" by my husband or friends and they would take me to look at the ocean or have morning tea. If you can find a friend who has been through this experience in some way (sufferer or carer) they would be the one who would listen. Cancer is often a very good way of working out who your true friends are as well. Try a few of them out over a cuppa. Maybe also try the cancer help line. I didn't find it until later but wish I found it earlier. With cancer you can't always be positive, hanging in there during this time is as good as it gets. I know we aren't face to face chats, but there is always someone to listen to you here, as Nikki and Ruby said. Take it easy,one day at time, Samex
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Contributor
Thank you Ruby, Nikki and Samex, It was really helpful to read your comments. It has given me a good look at the other side of the coin so to speak. I am currently away on a much needed timeout, feeling guilty but refreshed. Chemo is over for now and there are no appointments until next week so jumped on a plane to see my cousin who I am very close to. Just for some wine and giggles, and we have certainly indulged in both!! My phone has rang constantly with calls from home but all is well and everyone is just anxious about seperation this year. We are a strong family unit who talk things through and we will crawl through this to the other side as well!!! One step at a time right?!?!?!?! My thanks and best wishes to you all. Larn75
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Glad to see you having some time out. Hope your weekend was full of gossip and trivial chats laced with some heart to hearts where needed. Samex
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Contributor
Hi Larn, As my kids say "cancer sux!!!" I hope you are hanging in there, it's so tough on all the family, I often think it's much harder mentally on the carers than it is on the cancerer (OK...maybe that's not a word but couldn't think of a better one). I went thru the anger with the kids, I can relate completely. I don't think that they ever really picked up on it as I was soooo conscious to keep it bottled up but inside I didn't like them very much at all. I love them completely and would die for them but still was very angry with them. A lot of it was just anger at the world but some of it I think was that after cancer my priorities and values changed so much but those of my family didn't...still the same as before...... it has taken a while for those values to start to shift a bit and I am starting to like my children again (i hope I don't come across as winning bad mum of the year award....just need to be honest here :-) It took me a while after treatment finished to start making changes but I have and it's working. I am much happier and my kids are so much happier too. They are not as materialistic and we do spend a sickeningly amount of family time together but it's wonderful.... creating memories. I do hate my cancer with a passion but there have been many positives that have eventually come out of it....it's just taken time. Sending lots of love and hugs and good vibes your way. Sharon xxxxx
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Hey all, Thanks so much for your posts, you are all so kind and I really, really appreciate it! Back to reality now. Really loved seeing my cousin we laughed so hard at times I think I pulled a muscle. 🙂 I also got to visit with my Grandad who has terminal prostate cancer and is just waiting for the scan that says 'bones to brains' in his terminology. Seems that the C word is really having a good crack this last few years. My uncle broke down and cried which as awful as it may sound, was something that really needed to happen. The rest of the family thought it was so out of the blue, but I was not surprised. He hasn't said anything to anyone before and I did receive an email a couple months back that indicated he may be struggling, but unfortunately we were right in the middle of our battle and I didn't get to follow it up with more than a few words of support. It is out there now and I have got them to all choose jobs between them that will give uncle less responsibilty. Also they are now aware that he is not coping as well as they thought. It was nice to see how quickly they all jumped up to pitch in. Really nice. Has anyone had any experience with anxiety attacks in their children? My daughter who had quietly plodded along this whole time is now having really bad panic attacks and it is effecting her schooling. I have her booked in to Headspace for some counselling but am worried she will fail year 9. She already struggles academically and is missing a lot of school! She has always been so independant, bubbly and social and now is clingy, quiet and a hermit. Cancer piled on top of normal teenage drama has really ko'd her. Would love to hear any opinions or advice as this is a very scary turn of events. She txt me about 10 times a day while I was away. Also she has started sleeping with her big sister most nights. Seems a big regression for such a carefree little spirit as Boo. Anyway thank you all again for your wonderful comments. I am so glad we have all got each other. And Sharon i will send you numbers via email, thanks for the offer of friendship. Take care everyone Alana
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Contributor
Hi Alana, The kids are my greatest worry! They take the weight of our cancer on their shoulders and especially year 9, that is a tough age group as it is. I got a pack sent out by a group called "Now What" from www.nowwhat.org.au or 1800 669 942 that is aimed at teens with parents who have cancer. And...ok... it's not the complete answer but it's written for teens in a great format. It helped. I found out about it from a poster at my cancer care centre. With my younger one I did an anxiety course at Macquarie Uni (Sydney) and that really really helped. I am not sure what age they go up to but it might be worth getting in touch with them or a similar uni close to you. It's part of their child development area...I will try and find the paperwork. Even try "canteen", they would have lots of experience in dealing with teens and cancer. Worth a phone call. I hope that gives you some ideas???? Give her time and spend time together and with Dad, lay in bed and watch movies as a family, go for coffee, let her be with her friends, be silly together and laugh together. She is probably so scared she is going to lose Dad ...I know that was my guys biggest fear and their first question "are you going to die". Her insecurities are probably going into overload. I know with my guys they just didn't know what to do so I actually sat and gave them a list of things that would really help. It gave them some responsibility and a sense of being involved. Again...not the whole answer but it helped them come to terms with things a bit. Take care of you. Sharon xxxxx
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New Contributor
I know what you are going through to a degree. My kids are in their teens and they have been recently indicating things like "we used to all be happy now all we seem to do is bicker" and "why do we only have to focus on cancer or words to that affect", or my son simply goes into his room to escape some of the tension or anxiety. I am taking my son away for a few days on our own next week. This should be good for both of us. I have booked a couple of nights and will "wing" the others so if we decide to stay somewhere different we can make our mind up at the time (much to his annoyance as he wants everything planned and mapped out). I understand how hard it is to try continue in a 'normal" fashion. I find myself struggling regularly. I am hoping by spending some quality time I may also have the opportunity to discuss how he is feeling. We have a bit of a reprieve at the moment but we are under a number of other pressures as a result of what is going on (financially, emotionally, physically) as I am sure most people are. I think small things can bring relief. I read feedback suggesting watching a movie together , having a laugh together etc. It doesn't need to be anything out of the ordinary as long as you can have a bit of a laugh or spend some quality time together. I know sometimes even simple things can seem like effort, but little things can be the most enjoyable. I am concious of this and I am trying to do more with my family so we have some nice memories rather than focusing on all of the other issues. Anyway, the main thing is that there are people that will support you and listen to you, like on here. All the best, Justin
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Hi, my husband is the same, making jokes or brushing it aside is his usual response regarding his cancer. During the time he was having chemo he wanted to focus solely on being positive and getting through the treatment as best he could. He didn't want to discuss anything until we had results from CT scan after 4th round, then when those results were through and the prognosis hadn't changed, he didn't discuss anything anyway! He has improved 'slightly' since he completed his treatment, he could only have 6 rounds of chemo and that has finished now. We are waiting for another scan in early November to see what we are dealing with now. I guess we all only have a certain amount of energy to use and we each have to use it in the most effective way possible, and it will be different for the patient than it is for us the carer. Best of luck with your fundraiser on Saturday 24th October (our youngest son turns 6 so it is a special day for us too), well done on exceeding your target and have a ball in your pink wig!! Good luck with your
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Contributor
Larn - no apologies needed! The best advice I can offer is to speak to a counsellor. It helped me immensely. Sounds as though you could do with some coping strategies. The same will apply to your husband. It is perfectly normal to feel isolated. A cancer diagnosis is an "extreme" and confronting event. One way to preserve and to continue the relationship is to try to "accept" the diagnosis. Also work out what you can control and what you can't (same for your husband). Remember to take things slow and a day at a time. You may find things that you enjoy doing together as a family and other times, create your own space. This is important as there are lots of changes/adjustments happening and still about to happen. It may help you or your husband to join a support group (try Hospital or ask oncologist) and to be with people who are going through a similar situation.
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Thanks Jules Jp, Unfortunately he refuses counselling. Boo on the other hand has finally accepted that she does. Win some lose some and in typical fashion us girls are moving ahead and acceptng what is happening, whilst T stays put. This year seems to see us girls growing closer and gaining stregth love and friendship from each other while he is pushing further away. Today has been a really bad day and it took all my will not to put my babies in the car and run. Feel like I have been battered about (figuratively not literally) and have reached the end of my tether. How can someone face death and win only to deliberately sabatage his relationship with his family? I am trying to understand, but we have zero money left as he is pouring it all done his throat. I can't take anymore. Lucky for him I don't quit easily, but is it lucky for the girls? They are falling apart in front of my eyes, largely due to his nastiness and negativity and he refuses to acknowledge that anyone besides himself can be affected by HIS cancer. Rrrrrr. Sorry, I should go, hate being so angry and helpless, and then bringing others down with it. You all have enough of your own stuff to deal with. :-(
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Hi Alana, Sounds like you are having a really crappy time. I'm glad that you girls are getting closer but it is so sad to see the kids suffer. This whole process is so energy-sapping and soul destroying. You will get through this, you ARE strong and it's OK to feel angry. Be angry towards this insidious disease and keep sharing with us so that you can take some pressure off yourself. Take special care of you, find something that makes you feel good (that doesn't involve spending money), a walk on the beach, listening to your favourite music, a bubble bath (if you haven't got a bath, find a friend who does!). Just find something that will give you the time to recharge your batteries, restore your energy and your focus. It's inside you, we know it. Remember how fantastic your fundraising was and maybe start to think of your next project (if that will make you feel better). My heart is going out to you and I am sending you strength and hope. Take care, Mrs Elton
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