Unknown and Unsure

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Unknown and Unsure

Hi, I am new to this, both online chatting and the cancer journey. My husband was diagnosed in Feb 2009 with oesophageal cancer which has spread into his abdomen. Surgery and Radiotherapy were not options for treatment. He has just completed his 6th round of chemo. The prognosis we were given in March was 12-18 months with treatment, SCARY stuff. We try not to focus on the time frame thing as we know it is only an educated quess and everyone responds differently. We wanted to keep things as normal as possible, particularly for our two sons who are about to turn 6 & 8. It is very challenging. We are trying to be honest with them at an 'age appropriate' level. The CT scans to date have shown reduction, so we have 'delayed' telling our boys anything more than "Daddy has a growth in the top of his stomach. It shouldn't be there and the Doctor is going to give him medicine to try and make it go away or make it smaller. The medicine might make Daddy feel sick and tired (forgot to mention grumpy!). You will still be able to do the things you normally do school, sport etc, but if Mummy has to take Daddy to get the medicine then we will organize for someone else to take you". Can anyone give me some feedback on how their young children coped?
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Re: Unknown and Unsure

Hiya Mrs Elton When i was first diagnosed with cancer some years ago my son was only a baby, so i havent really had any experience in the area you are wanting some feedback in. Just wanted to say hi and welcome. It does sound like you are doing all the right things with your children and am sure that the cancer council help line might be able to point you in the right direction. :) Julie
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Re: Unknown and Unsure

Thanks for the welcome Julie, I have spoken with various 'professionals', I was hoping to get some feed-back from 'real' people who have 'walked the walk' not just 'talked the talk', so to speak!! As a mum and a wife, like most women, my kids and my hubby are at the top of my list and I'm a distant third! I am also highly aware that I need to share my own fears, concerns, hopes and rollercoaster ride with other people in a supportive environment just to try and keep some sanity in the mix! I am and always have been the kind of person who finds it best to talk about things rather than pretend everything is OK. I do have some school mums who I can talk to but I am concious of not wanting to 'wear out' their ears or have them turn away because they don't know how to 'handle me'!! Having read several of the posts on this site, I am sure I will find this is a 'safe and comforting' place to visit and share the ups and downs. Best wishes to you and yours,
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Re: Unknown and Unsure

Hi Mrs Elton My husband was diagnosed late Feb 09 with GBM,a stage 4 brain tumour in his frontal lobe. We were told he would have anything from a day to 2 years. We have 2 girls aged 9 and 3. In March he had an operation to remove the tumour and has been on chemo since April. We told the 9 year old that dad is very sick, that he had a tumour removed from his brain, that he would be grumpy because of his treatment and that he needed some peace in the house so he could heal. My grandmother passed away in April and I took that opportunity to talk to her about death. I have also spoken to her teacher at school and she has started seeing the counsellor at school. I also have her spending more time with her grandparents and with my closest friends so that she has a support network to turn to if my carer responsibilities increase. In May hubby had a massive seizure at home and we had to call the ambulance. The younger one was with her grandparents but my older one was home. It was such an awful thing for her to watch...her dad, a big strong man, having to be taken out on a stretcher by 4 ambulance officers. One of the officers gave her a hug and told her not to worry he would take care of her dad and I think that made a huge difference. She was a little worried for a while but bounced back pretty quick. We too have tried to keep things normal. I have continued to work full time. However, we have deliberately filled our weekends with more family time. I have also allocated alone time for each of the girls with dad during the week. In August we were told that my husband had a recurrence but the doctors wanted to watch to see how fast the new tumour was grwoing. A scan was scheduled for 4 weeks later. During the four week wait, we took the girls to the Gold Coast for a week as we were worried his mobility would be further affected if the tumour became aggressive. So, I try to keep things normal but I also try to ensure we'll have no regrets. My younger one is a little too young to understand. According to her - dad is all better because his hair has grown back. I worry at the moment about them having to witness his slow deterioration. But for now we take it a day at a time and we keep lines of communication open. As you know its not easy turning theory into practice especially since each child is so different. All the best. Regards Sangeeta (Sorry this got a little longer than I meant it to)
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Re: Unknown and Unsure

Thanks Sangeeta, that was really helpful. I have kept both our boys teachers informed every step of the way and as ours is a relatively small school, most of the other staff are aware of our situation too. The school is a 'safe' place for me and the boys. I have spent a lot of time there over the last 3 years with my involvement with the P & C Assoc. so am well-known amongst the staff (for good reasons!) and most of the students know who I am as well as I often speak at assemblies. I have seen our school chaplain a few times earlier on in the journey, but not so much of late. We have discussed her speaking with the boys individually just to let them know they have someone they can talk to, but it hasn't happened yet. When I first started telling other mums of hubby's diagnosis and got the usual 'If there's anything I can do to help' speech, I made a 'register' with columns for name/phone number/mobile/days not available and asked them to complete it. I had (or could have got) most of their numbers but thought by having them complete it, 1, it meant they did the work and not me! and 2, showed them I was taking their offer seriously. I haven't had to call on any of them for help too many times so far, hubby has a 'port' fitted so the first day of treatment was always a 6-7 hr day which would mean I may need someone to take and collect the boys from school, We've had the odd oncologist appt that has been outside of school hours but fortunately most of them have been middle of the day sort of timing which hasn't interfered with the boys schedules. We spent 6 days on the Gold Coast prior to hubby starting treatment as we weren't sure how his mobility/energy would be once it got started. We're from WA so it's not a short trip for us! We really did enjoy it (well I mostly did, I guess I was acutely aware of why we were doing the trip and that took a little of the shine off it at times for me). We have been fortunate that hubby has coped with the chemo fairly well all things considered. His first 3 cycles he had a very tender mouth and his tongue would swell up, I mean really swell up, which would make talking/eating etc very difficult. Luckily we have a friend who is a dentist who was able to suggest another product to the one our oncologist had suggested and it was much more effective in providing relief. Tinnitus is the biggest issue in terms of side effects now, he has completed his 6 chemo cycles, obviously his energy levels are low but he LOOKS normal. He always has looked normal, to look at him you would not know there is anything wrong. I sometimes think it is causing great confusion to our boys that Daddy looks just the same and yet he isn't the same. It is so hard to fathom as an adult, so it can't be easy for our children. I am grateful that he is so 'well' and grateful that our boys don't have to see him disappearing before their eyes,......but I have to wonder, What will the future hold? Strength and courage to you all.
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Re: Unknown and Unsure

Hi Mrs Elton, welcome to the forum. From reading the above posts your doing a great job with your kids, I was diaganosed with cancer in 2007 and have had 3 operations and radaiation treatment. I have 7 kids which are now 13,11,9,8,6,4,2 years, the only thing i have found is that sometimes my kids used to get a bit angry that no one else's mum or dad we knew was always sick, just theirs. I too kept the teachers and the school informed every step of the way so if my kids starting playing up they knew what was going on, The school also sent 4 of my kids away on a camp for 2 weeks when things got too stressful for them then my eldest went away 2 weeks after that for a week. You are doing a good job, just dont forget to have time for yourself as you need a break too. It is nice to meet you.......Sham
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Re: Unknown and Unsure

Thanks Sham and nice to meet you too! You are obviously an incredible and special person to be a parent of 7 children! It must be very busy in your house and tough, tough enough without having to add cancer to the mix. I take my hat off to you! I feel very strongly about keeping the teachers/school informed, they are my eyes and my ears when I am not with the boys. We are hoping to pick up on any changes quickly and address them before they become bigger problems. So far so good! I have realized that I need to have time for me and have started putting things in place so that that can happen. Tuesday I spent the majority of the day on the couch watching The Thorn Birds on DVD, thoroughly selfish and thoroughly enjoyed! It is an old favourite of mine and gave me a trip down memory lane and a brief escape from the 'real world'! Good luck with your appointment tomorrow (hope that is a current note) and take care of you........
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Re: Unknown and Unsure

Hi, As a survivor and a teacher, I too see it as important to keep the school informed. My son was 13 when I was diagnosed and he attends the school where I teach. My Principal was fabulous and spent a lot of time explaining things to him that my husband (not a talker) hadn't discussed with him. He is a bright boy nad needed to know hat was happening to his mum. It is also important for teachers to know what is happening in kids' lives as it often accounts for what might be unusual or out of character behaviour in class or the playground.Sometime teachers get a bad rep but generally when they are informed - even to a basic degree - they can make allowances and often assist kids who have crap happening in their lives. Hang in there coping with 7 kids - what a woman !!! And Mrs Elton, no shame in watching tele or nana naps for that matter! Samex
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Re: Unknown and Unsure

Thanks for all the messages guys, just want to clarify, I only have 2 children, Sham is the wonder woman who is mother to 7!!!
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