Unfortunately my husband's PET scan showed a return of aggressive liver tumours. This was very bad news. Still, he is working and looks 'normal' apart from his ileostomy. He hasn't lost his hair with all the chemo and he bounces back from all the drugs pretty well. It helps in a strange way that he is younger than most and he's otherwise healthy. A perverse positive!
I had all sorts of visions about how bad things would be before Tony started his chemo. The reality has been different to my expectations. They've really been very good about dealing with the side effects of the Chemo pro-actively. Different people have different reactions, and different journeys, so read with interest - but, know that what happens with your wife on her treatment will be very individual. This is very much a roller coaster ride.
I was reading a 'survivorship' speech on the Peter Mac (I live in Victoria) website the other day, and the woman who wrote it described the journey as a Carnival. Sometimes you are on the roller coaster, sometimes you are in the house of horrors and sometimes you are kicking back enjoying fairy floss. It is not a linear journey.
The kids have been pretty good really. They now want to talk to people who share and understand their experience - the younger one has just really started to understand the concept of death. There is very little formal peer support available for primary aged kids... none actually. The Pallative care people have offered counselling - and don't be afraid to tap into Palliative care early (they are not just there for the 'end' of life stuff).
Still no job... bummer! We are away for Easter to have a break.
All the best.
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Sorry to hear about your wife's diagnosis. I understand where you are at. It is a difficult and strange place to be in. The journey is not linear - there will be ups and downs. In my experience kids are amazingly resilient - and they will need you to be the constant in their life. I don't hide my emotions from them and I give them the space to talk & cry if needed. Kids are often forgotten - and so are spouses. It is an awful lot to take in and it isn't easy as treatment goes on.
Things have calmed down for us in the last 6 months as Tony has been stable, but he had a PET scan yesterday which dictates what happens next - always a difficult time. We don't get the results until next Wednesday. I have a job interview on the same day, so I'm not sure I'll get to the appointment which is not all that good. Tony has "chemo brain" (yep, it is real) and I am not convinced I'll hear the full story / outcome.
Without knowing your wife's prognosis, I would recommend linking in with Palliative care early. They are not only there for the last laps so to speak. We had a great GP who recommended this - initially both of us were horrified at the prospect. They can provide some confronting, but important information about what is 'normal' - e.g. I was desperate for my husband to starting journalling etc for my kids, but they advised that 95% of people can't / won't do this because they can't face it (even mum's who you'd expect it from). I get that now, so I've stopped asking. They also have some resources (can get them on the Cancer Council website) that may help your older child - although my almost 8 year old still doesn't really get the 'death' concept.
The Palliative Care people told me about activities they do with kids to, for example create memory books about their parent who has passed away. This made me feel better. They also told me about their experience of working with kids and how they cope after their parent dies. This reduced my anxiety quite a bit. As a parent you want to protect your kids, but there are some things you just can't protect them from.
My kids know that sometimes bad things happen to good people, and it isn't necessarily anyone's fault (my older son wanted someone / something to blame). I am honest with them about what is going on, but keep it in the 'now' - i.e. I don't go too far ahead. They know death is a possibility / probability even, but they also know their dad loves them and is fighting very hard. One of my girlfriends died of Melanoma just before Xmas, and they had the benefit of knowing how hard she fought (initial prognosis 7 months, survived more than 3 years) to be there as long as possible for her 12 year old son.
The cancer council has financial advisors who can help access super etc (it is means tested - even though we were originally told it was 'free'. It cost us about $2K - but, we accessed 4 super funds & insurance - all paid out without hassle except REST which required a bit more of a push). We also got the early pay out fees waived on our mortgage on compassionate grounds - we had our mortgage with AMP and I couldn't speak more highly of them.
Everyone's journey is different. I hope that your wife can be cured, or at least show the bastards (the tumours) who is boss for as long as possible! As my husband says, we all have to die of something... we'd just like to do it on our terms! Have faith in your own strength - it is pretty amazing what you can get through. Always happy to chat, so send me a message if needed. I find knowing that I am not the only person out there going through this enormously helpful for coping with my own journey.
With love & best wishes,
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I am in Geelong in Victoria. I am happy to chat / catch up with people.
The word 'widow' is confronting. I am 41 now and I'd never imagined facing widowhood this young, although I always knew on the statistics I'd probably outlive my husband.
My husband is currently doing better than expected, so although he wasn't supposed to make September this year (and his Super & Life insurance have now paid out) my gut feeling is that he'll do better than 'average'. He's healthy, still working and is tolerating treatment really well. He's had Sirtex therapy on his liver tumours which has been quite successful at significantly reduced his tumour load. After Easter we find out if a second shot at the Sirtex is possible.
Amy - I get what you mean about not wanting to burden friends and family. I do not speak to many people about how I am feeling / coping with this journey. Part of me doesn't want to go there - and part of me knows that if I do, I will crumble. I am strong because I have to be strong for my kids and for me. Like you, I don't think most people really understand. I have a good friend who has survived Breast Cancer and she has been fantastic help - she understands that practical help and distraction on nights alone make a big difference. I have another friend who was widowed due to cancer a couple of years ago, and she has been great at bouncing thoughts off (especially those uncharitable thoughts that I'd never share with others like - I wish this would all be over!).
LIfe does go on. As time goes on I am accepting that, and planning for two outcomes - a miracle outcome where he lives, and life on my own. Can't quite picture moving on with another partner yet, but I know that day will come too.
Happy to chat,
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I have not been online for awhile as things have been going along pretty smoothly for the last few months. My husband had Sirtex therapy in September which has killed off a good number of his liver mets. Unfortunately the Radiologist who did the procedure could not access the right side of his liver, so those tumours are still there. There is no spread anywhere else in his body still. It has given us a glimmer of hope, but as all of us on this journey know - the news can turn around at any time. His next PET scan is at Easter and we'll get the results when we get back from our Easter holiday. That will be a tense appointment as it'll determine whether the 'dead' tumours are still all dead (i.e. not just stunned) and if there are other treatment options - or Sirtex to the right side of his liver. Anyway, he's having fortnightly Chemo, but life is more normal than it has been for awhile. He's still working 3 days a week as a teacher.
Thank you for the replies to my original post. They have confirmed that I am on the right track. My boys are doing remarkably well at the moment. Their school has been fantastic with them. They both refused counselling, and I only saw the Palliative Care counsellor once and spoke to her over the phone. She made me cry - I don't need that now.
I am preferring to live today and worry about the future later. While his health is ok, there is no point wasting time on dwelling on the future. My husband keeps telling me that we all think we are going to live for ever, and we 'think' he's going to die of cancer - but, he could get hit by a bus tomorrow. His black sense of humour gets me through - there is truth in what he is saying. He is remarkably strong and positive.
I took a redundancy from a very stressful job just before Xmas, and now I am looking for a job I want to be in. My husband's insurance and Super has paid out, so we don't have a mortgage or loans any more. Strangely, we are in a good spot right now. Lets just enjoy it while it lasts!
Take care everyone - this is not a fun journey, but having somewhere to write down thoughts and know that you are not alone is very helpful.
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I am a different stage to you (my husband is still fighting his cancer, but has a terminal diagnosis) but I have asked the palliative care counsellor the same question about support groups for people in my situation & widows with young kids. I am 41 and have a 9 and a 7 year old. In my area there is nothing around. The counsellor said they've tried to set up a number of groups, but they just keep petering out after a year or so. I am in a 'regional city' and it is put down to the size of the population of widows with kids.
There are other organisations around like "Parents without Partners" - it isn't quite what you are looking for, but it might help you get out of the house a bit more?
I have a few friends who are single mothers and they have been good. One had cancer herself, so she 'gets it'. My divorced friends try to understand & be supportive of what I am going through, but in all honesty I don't expect anyone to 'get' this journey unless they've been down this road. I know I tried to support friends going through this before my husband's diagnosis - but, once you experience it personally you know that you really didn't fully understand.
Even though my husband is still around I already feel the separation beginning - many more lonely nights while he is fatigued & sleeps early. Many more weekend outings on my own with the kids to let him rest. I know it is only a taste of things to come - but, it is a distressing window into my future. I am sure you understand where I am at.
Hope you find what you are looking for,
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I am sorry to hear about the progress of your father's cancer. I understand your devastation & desire to have him here forever. Unfortunately, a part of life is death & it is pretty tough to see this progression.
I wonder if a part of the reason his second wife is being controlling is that this is a way she copes. The first thing I did (quite unconsciously) when I found out about my husband's cancer was try to put order & structure around the chaos. I have discovered that this is the way I cope when things are out of control. I also wonder if she struggles to talk about what is going on because it is too painful for her? She may not have the ability (either emotionally or otherwise) to give you the answers you are seeking.
Are you able to talk to her about the way you are feeling? Do you get any time with your dad on your own?
I have started seeing the palliative care counsellor, and while it was a distressing conversation - it has helped me to adjust my expectations and 'normalised' some things (like my husband's increasing grumpiness). It is ok not to cope all the time with this stuff. It is hard, and you do need to let the emotion out.
I wish you the best on your journey.
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I hope your husband is living 'well'. The whole timeline thing is interesting in its own right. On the one hand you want an idea of how long you have together, on the other hand these are average figures and nobody can tell you which side of 'average' your situation will be on... So, you are preparing for death with a very uncertain timeframe and absolutely no idea about what is about to hit you or how fast your love one is going to deteriorate. I have a whole new view on time now - as I see the weeks disappear in my work calendar, a part of my brain says that is one week closer to losing him (Tony). Your whole way of looking at normal things changes - there is always that elephant in the room. So, I get what you are saying.
We have avoided talking about timelines with the kids. They know that Daddy may die as one possible outcome - but, we emphasise the fact that he is fighting it and that is why we need to give him rest etc while he is having Chemo etc. I have boys, so being quiet is quite an ask from them - I usually have to take them out somewhere or organise play-dates so my husband can get some sleep. The oncologist is more black and white about the fact that Tony WILL definitely die - as the liver tumours will eventually overwhelm him... We have figured that they only need to know that Daddy is dying when the active dying stage begins.
We don't want to give the kids false hope, but at the same time we don't want their childhood to be consumed by grief and we need to try to maintain normal-ish parent-child relationships for as long as possible. So, until Tony is really in obvious decline - we will remain as normal as possible. It is hard enough that I have all the questions.... Kids say things straight though - my 9y.o. told me that he wishes dad wasn't here and he was going to pretend that dad wasn't here! What he was really saying is that he can't deal with thinking about the cancer & dad is a reminder of that... I am gobsmacked that that parents are left to muddle through this on their own.
I am at the beginning of this journey relative to other people on this site, but I can appreciate how the grief fatigue can set in. I have well meaning friends who have said things like "it is good that you are all back to normal now" as my husband is continuing to work as long as he can. Normal? Normal went out the window on the day of this diagnosis! The cancer is there with us every minute of our day... and on nights like tonight when Tony went for a lay-down at 6pm and has slept through, and I am sitting in the lounge room alone with the dogs and goldfish on a Saturday night, I ask myself - Is this my future?
I've also had people say to me: "At least you have time to say goodbye, not like if he was killed in a car accident". This floors me. Yes, I have time to say goodbye, but I have to grieve a living person without being a misery-guts around them and while trying to go on as normally as possible (while preparing finances etc for the inevitable). The 'average' survival rate for people with stage IV colorectal cancer is 24-30 months on Chemo. We are about 4 months in now... this could go on for a very long time yet. If he died tomorrow in a car accident I would still grieve, but in some ways it would be much simpler. This is all very morose isn't it? I am sure that we aren't supposed to think like this, but I find my mind takes me to these places now.
I've rambled on (again!). Look after yourself,
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My husband has stage IV colorectal cancer (diagnosed 8/11/11) and is receiving palliative Chemotherapy. While at the moment he is quite well and is tolerating chemo with few side effects - we won't know for another week whether it is making one spot of difference...
I have a 6 year old and a 9 year old. We are honest with the boys about where things are at, but try to keep things in the present as much as possible. Both boys are aware that their father may die. ('May' is good enough for now.).
I have been very surprised at the lack of support available for primary aged kids. I just assumed there would be something like Canteen or Camp Quality available for them - particularly the older one. There is nothing (I am in regional Victoria).
My 9 year old is having difficulty dealing with what is going on and his behaviour has been terrible. I know that some of it is just because he is 9, but some of it is not. I've a whole range of emotions from him: grief, bargaining, anger... Recently he just wants his father to disappear so he doesn't have to think about cancer.
On another forum topic people have recommended books that may be helpful. I am interested in any other advice or conversation about how to manage young children through this journey.
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This is my first post on this site. On 8 Nov 2011 my husband told me that he had cancer on the way home from having a colonoscopy. While he was blase, I was numb and stayed numb for the next four or so weeks as all the tests were done - each week brought worse news. He has Stage IV colorectal cancer and multiple liver mets. He had the primary removed on 30 Nov with a lymph node clearance, and now we are trying to deal with the liver mets. A liver resection is not possible and the oncologist is clear that my husband's Chemo is palliative only. My world has turned upside down too! I am happily married to my soul-mate - yet I am now contemplating a very uncertain and lonely future for me and my children. I never expected that I'd be a single mother. I am 40 y.o..
I try not to think too far ahead as I find staying in the present helpful in dealing with my grief for the most part. I am learning to tell people to stop when they ask too many intrusive questions or want to talk too much about the future. I've learnt to accept help and even if it is just for respite. I make time for me every week - a massage usually, or a movie with a friend. I am back at work and being back in a routine has definitely helped. Despite this, I've been drinking too much and having a bit too much chocolate & ice cream... I am diabetic, so this has stopped as of this week! And, I still regularly collapse in a heap - usually late at night when I am on my own!
I have a 6 y.o. who doesn't quite understand death (apparently daddy will turn into the Hulk!) and a 9 y.o.. I've been dealing with my own reactions - numbness, despair and avoidance... all the while having to carry on as normally as possible for the kids and deal with their reactions (the 9 y.o. has struggled and his behaviour has at times been awful). It has been very hard work and very emotional.
Meanwhile my husband is taking this all in his stride. I suppose he is in 'fight' mode and quite a different place to me. I admire him really in the way he has handled it and remained positive. He was the model patient after surgery, and he is tolerating the Chemo well - and was able to meet his goal of going back to work 8 days a fortnight while on active fortnightly Chemo cycles.
People say that it is good to see that we are back to 'normal' - what!!?? I no longer know what 'normal' is and I am worried about the future and how his disease will progress in terms of speed / symptoms / pain etc.
I am rambling - I just wanted you to know that you are not alone.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.