topic Re: People with young children in Coping with a loved one's cancer

People with young children

Symphony — Thu, 12 Sep 2013 08:49:23 GMT

Hi, I'm 31 and have 2 little girls aged 4 and 6. My husband is 42 and has incurable cancer. I'd really like to get in touch with anyone out there going through this journey who has young children. I went to the cancer council support group for the first time last week and there was only one other person there who wasn't a grandparent. So it you are under 50 and have young children, whether you are experiencing cancer or the partner/carer of someone with cancer, I'd love to hear from you. Blessings, Symphony.

Re: People with young children

purpleangels — Mon, 23 Sep 2013 22:07:29 GMT

Hey Symphony! Great name! I am nearly 41..... Have a daughter who is 8 and a son who is 5. My husband was diagnosed with a rare cancer six years ago next month. Unfortunately, he departed this world in February this year.... And the last year of his life I would not wish on my worst enemy.... It was awful watching and being unable to do anything! Cancer sucks!! But..... I have been supported by friends, neighbours, family, work colleagues, the kid's school/ pre school communities and at times total strangers..... I have certainly found the good in people!! Best of luck to you....... It is hard going!! Feel free to ask any questions..... I'll try and answer them!! Take care of yourself and your kids!! Take each day as it comes and don't be scared to cry!! Thinking of you and sending positivity your way! PA

Re: People with young children

Symphony — Thu, 26 Sep 2013 11:04:51 GMT

Hi Purpleangels, Thanks for your response. It is good to know that there are others out there who have gone through the cancer journey with their partner while their children were young. Honestly, sometimes I feel like I am the only one on the planet with a partner diagnosed with incurable cancer and also dealing with young children. I had planned to go to the cancer council support group again next week (it will be my 2nd time). I have organized to bring my husband with me this time. But now I am having second thoughts, as last time I found it incredibly emotional, during and afterwards. I found it difficult to listen to other people's painful experiences and journey with cancer. I found it difficult to be the only one with young children and to experience the great empathy of the other people there, most of whom have been diagnosed with cancer only since becoming older, and who's children are grown up with children of their own. So mostly the other people are grandparents, or even great- grandparents. I am getting a bit sick of being told that I am a strong lady, that I am a strong woman (by everyone that I know!) I feel like when all is well and we are having a good week, I just want to pretend like everything is going to be ok and I don't like to think about cancer or talk about it, or listen to other people talk about it. I have to go and run the bath, would like to keep talking though! Thanks again xxx Symphony

Re: People with young children

purpleangels — Thu, 26 Sep 2013 11:39:40 GMT

G'day Symphony! Haha! I had to laugh with your comment about the bath..... Yes...... Life with small children marches on so normally in some ways.... Have you thought/ heard about the cancer councils telephone counselling? They have groups and individual counsellors who call you at a suitable, convenient time. My husband had an excellent one who called him fortnightly and offered not only emotional support, but practical support too..... Maybe you could give that a try instead of the support group face to face.... I too am often told that I have incredible strength- which we do- but occasionally you would love someone to take the burden...... Although that is impossible...... It is quite a unique experience we find ourselves on..... Check out the young adult section too..... There may be a support group in your state.... I'm on the NSW/ QLD border...... And I don't know of any young adult group here or on the GC...... Doesn't mean there isn't one..... I just haven't looked hard enough!! Take care!! PA

Re: People with young children

Symphony — Thu, 26 Sep 2013 12:18:01 GMT

Hi PA, Yes, having the kids keeps me (us) grounded, and I think stops me from totally losing the plot. Of course, some days it just makes it harder. Like today; i would have liked to just go to bed at about 4pm and read a book and had red wine and chocolate for tea. No such luck! Thankfully hubby was well and did the dishes and reading stories at bedtime so I managed a cup of tea and some time out online. I have called the Cancer Council helpline a few times, when I was desperate. I do see a psych in person every 3 weeks at the moment but the helpline is great when something hard comes up unexpectedly. I didn't realize that they could call you, or that they had groups. Thanks, I will look into that- I'm in WA. Blessings, Symphony.

Re: People with young children

yvette975 — Fri, 27 Sep 2013 04:40:49 GMT

HI Guys , New to this website and it is my first post. My husband was diagnosed 12months ago with stage 4 bowel cancer with mets to his liver and lungs and was classed inoperable/incurable. I am 33 he is 42 and we have 3 small children 10,8 and 6. We have been given a very small time frame and all I can say is it SUCKS. As a mother I feel it is my job to fix it , I am the one with bandaids and special cream that will cure all and yet in this when my children need me to heal their hurt I cant.To make matters worst I know it is happening and I still cant stop it. My heart breaks at the thought of their little hearts breaking. I hear you when you say you are sick of being told you are a strong women, im pretty sure if I hear it again someone is going to get hurt! hahah. What if I dont want to be strong? what if I just want to fall in a heap? anyway so much more to say but I think I have said enough for now, I too feel like the only one i n the world going through this and feel nobody else gets it! nobody else feels what I feel! and it is so hard.... hope to hear from you both soon ox

Re: People with young children

Symphony — Fri, 27 Sep 2013 09:35:28 GMT

Hi Yvette, Thanks for posting. Welcome! I hear your pain. I'm right there with you- my husband was diagnosed with stage 4 lung cancer with 3 mets to brain in March this year. We went from being fine and cancer-free to emergency brain surgery to palliative care. Non-small cell carcinoma (non- smokers lung cancer.) The more I learn and the more I talk to people, the more I believe that doctors do not have the power to give you a certain length of time to live. They can give you averages and guesses but that is all. Many people (that I have met in the last 6 months) live much longer than the doctors have "given" them. We were given a very grim time frame, but did some research and discovered that this prognosis was based on data where the average age of diagnosis of this type of cancer was 70 years old! Only 2 percent of people with this cancer are diagnosed under the age of 50 and my husband is one of the 2 percent. We believe that he will live many years yet. We did 4 cycles of chemo designed to shrink the lung cancer, and then we decided to stop. The doctors wanted to do "mainentance" chemo every 3 weeks for the rest of his life, and they said that it would give him an extra 6 weeks to 3 months of life. The 4 cycles of chemo he had did a lot of damage to his body and caused extreme fatigue and nausea. He has had no symptoms from the cancer since the largest brain tumour was removed. All of his ill health in the last 6 months has been from the treatment. I hate telling new people who don't know what has happened. They ask, "what are his chances?" "Has he gone into remission?" I hate seeing aquaintances in the street who I haven't seen for 12 months, and who don't know. They are busy with their children and I am busy with mine, so when they ask, how are you? I lie and say "fine!" It is too much and too hard to get into for someone I hardly know. And about being strong... is it a choice? I do not see it as a choice. The children must be fed. The clothes must be washed. My husband must be cared for. When you have children, and a sick husband, can you afford the luxury of throwing in the towel and saying, no, I can't deal with this? It does happen. I did it yesterday! But it lasted a couple of hours. It passed. If I don't do these things, who will? What is the alternative to being strong most of the time? My counsellor says that this is a marathon. I must take time out and look after myself, so that I can look after everyone else. I am getting better at doing it. I am getting better and better at being open with my feelings, sharing what is happening with supportive people who want to help. I am always pleasantly surprised at how understanding and supportive people are, even complete strangers. My children understand that Daddy has cancer but they do not know the prognosis. We do not say that he has a certain length of time because we do not know how long it will be. We do our best to keep life as normal as possible and keep to the daily routine. The only time this breaks down is when I am not up to doing it. I have to go as Miss 4 has cut her finger and needs cream and a band-aid. This I can do. :) xx Symphony

Re: People with young children

yvette975 — Fri, 27 Sep 2013 09:52:04 GMT

Thanks so much for taking the time to reply. . Wow so much you said is so true. I always say to people that I didn't realize there was an option b! I didn't see the other box to tick, this is what is happening and we just have to deal with it the best we can. We have been on fortnightly chemo for the last 12months so I have no idea what cycle we are up to. We have done radiation for 6weeks too. Our kids are the same they know daddy has cancer but don't know we have limited time. I very much believe routine is the key and I do my best between them, hubby and working full time. I too find myself retreating from public appearances as I too hate telling the story over for those that only want to sticky beak and pretend they care. Anyway miss 6 has fallen asleep on my lap best be putting her in bed. Although I do enjoy the cuddles. Thank you again so much I allbof a sudden feel like someone else actually understands. Hope miss 4 is ok 🙂 ox

Re: People with young children

tropical — Sat, 28 Sep 2013 09:56:39 GMT

Oh you poor girls. By your standards, I'm geriatric. I'm 49 and my 52 year old husband recently died of brain cancer after living with it for 13 months. Our children are 17, 18, and 20 - much older than yours. I just thought I'd make the comment that brain cancer kills many young people, many of whom have very young children. Sadly, the prognosis is only 14 months so these families know from the outset the condition is incurable. There are many international online forums out there where young families discuss living with cancer. I'm not sure if I'm allowed to mention them here because it will take traffic away from this one. To find them just search for your type of cancer and young children. I discovered one when my husband was first diagnosed and I gained a huge amount of support from them. So many of us have transitioned to widowhood so we've moved onto the bereavement page their site offers. The age of people we chat to is about 30-55. There's one lady who's 64 but she's young at heart! New people ask about dealing with young children all the time. I wish you all the very best.

Re: People with young children

Selly — Fri, 04 Oct 2013 18:25:35 GMT

Hi symphony I have 3 young children 8,3 & 2 I'm 35 & hubby (52) has pancreatic cancer. I can't believe I'm not alone! Thankyou so much for posting. It really sux hey. Everything you said is true. The thing I would l would love most is if I woke up & it was all gone. We got our life back. Initially I found it hard that our once 'normal' life got totally turned upside down so suddenly. It feels like we live in a different world compared to our friends. Speaking of friends I have found most of them to have found it all too hard so they have chosen to keep away. Right when I need them most. I see there comments on facebook (their lives go on normally) & it hurts that they are not there for me. Actually I don't really have much support from anyone. You have to keep going tho. It's awful seeing your loved one so sick from the treatment that's supposed to help them isn't it. It makes u wonder if they would be so sick if u had of done nothing? Do you do any alternative treatment? I hope u get some much needed time to yourself. Take care Selly

Re: People with young children

yvette975 — Fri, 04 Oct 2013 22:07:53 GMT

Hi selly, I remember when hubby was first diagnosed feeling like it was all a bad dream and every time I woke up in the morning it was like a slap in the face that would literally take my breath away. A slap of reality that broke me every morning. Needless to say that feeling has thankfully passed and only hits every now and then. The friends aspect is so hard, hubby found the same thing that people just stopped coming over stopped calling. I suppose they didn't know what to say but as hubby pointed out one day "he was still the same person" . As for treatment I have had that conversation so many times before, if we didn't accidently find out how long could we have gone without anything changing. Unfortunately for us the diagnosis is not good and hasn't been from the start , so some days I wish we never knew so we could have continued with life the way we were. Although the strength mentally emotionally and physically that my husband is showing amazes me every day and I am so proud. As for my babies they are amazing and are the reason I keep going. Take care and it's good to know we are not alone! Ox

Re: People with young children

Ray84 — Sat, 05 Oct 2013 11:10:41 GMT

Hi Symphony I'm 29 have 2 young kids 7 and 5 year old I have testicular cancer only found out 2 Weeks ago I have cancer I too feel like I am in a bad dream. take are and know you have support from others in this group. Ray

Re: People with young children

Symphony — Sat, 05 Oct 2013 13:08:12 GMT

Hi everyone, The Cancer Council Support group was great, and hubby liked it a lot! He is planning on coming to the next one. There was a lot less tears from everyone this time and I found it much easier during and afterwards. I spoke about how talking here on cancer connections has been helpful for me as there are younger people with children who are in the same boat, or at least the same flotilla of boats! Going together opened a few issues for us as we spoke to the group about things that we have difficulty speaking to each other about. After the meeting we discussed what had come up and had a frank conversation about chemo and what our plans are for the next few months, which was great! We don't get a lot of time alone together without the kids. Thankfully it's the school holidays so the kids are having a sleepover at Nana's house and we will have an evening off that we can spend together. 🙂 Blessings, Symphony

Re: People with young children

Symphony — Sun, 06 Oct 2013 00:56:33 GMT

Hi Ray, Welcome. Yes it does feel like a bad dream, doesn't it. I feel it is both easier and harder when there are children involved... they help to keep you grounded but there is also the overwhelming burden of responsibility and the thought of the future. I know that it is different for me because I am the wife of a cancer patient and I do not have cancer myself. Our family does ask for and accept help from family, friends, the cancer council staff and the wider community. Counselling helps too, a huge amount. We have made use of Solaris while my husband has been having treatment, and also while he has been having a break from treatment. The staff at Solaris listen and understand; most of them have experienced cancer themselves or within their close family so they "get it". I am loving the support and empathy that I have found within this group, I hope that you find the same. Symphony

Re: People with young children

Symphony — Sun, 06 Oct 2013 01:41:45 GMT

Hi Selly and Yvette, I was so tired last night (we drove 600km during the day)that I blithely did my post about the support group meeting and didn't see that you had both posted yesterday. Before my husband got cancer, I didn't know what to do or say to other people with cancer, or who had partners with cancer. I have found that since my husband was diagnosed, this seems to be a common feeling. People generally don't know what they can do. They don't know the right thing to say. In our society we are not trained to talk about emotions and how we feel. Especially men. In our experience, having young children in the house and a husband having treatment means that friends don't want to "intrude" on our home, and instead wait for an invitation. I have found that it is only people who have had an experience of cancer themselves or within their family, who know what to do, what to say, and what we need. Many people in our circle have offered help- "Let me know if there is anything I can do." They just don't know what they can do. I just need to ask them to do things. I have found that asking people to do things that they find easy to do works well. Practical tasks that would be a huge effort for us, are easy for others, but I need to ask them to do it. My husband seems to have a resistance to asking for help from friends and family, and can occasionally feel a little angry/sad/upset that offers of help are not renewed frequently, especially when he is unwell and can't do things himself, and he sees me exhausting myself. Some friends are unable to deal with the idea of cancer. They are good friends to spend time with when all is well and you want to have some fun and get away from it all. Unfortunately during palliative care this does not happen very often. For me, I have a friend who is a confident, assertive woman and she asked if she could organize some school mums to come over and help me clean my house. I found this very difficult to accept. But eventually I did accept and I am so glad I did. It allowed people who wanted to help, to help me in a way we both felt comfortable with. Once a month, I suggest a day, and a bunch of ladies (that I know already) turn up with cleaning stuff and morning tea. I have a list of jobs written up, the jobs get done, the house is clean and I have friends for morning tea, which I didn't have to make. We usually go from 9.30- 12 noon which means that it isn't too tiring for anyone. We are planning a garden/backyard busy bee on a Saturday fairly soon, when the men can get involved. This has been on the backburner for 4 months as I don't have anyone to organize it for me, so it hasn't been done. (The last 4 months have been mostly chemo and sick kids.) Some other things that I have asked friends to do, include mowing the lawn, ringing my husband once a week for a chat, picking up the kids from school, bringing a plate to my children's birthday party so that I didn't have to prepare so much food, picking up groceries for me, doing a rubbish run to the tip (we are out of town and have to take our own bins to the tip in a trailer.) This has worked really well as I can put together tasks with people who are happy to do them. Oh, another thing which helped immensely was asking for people to drive my husband to treatment/appointments. After the brain surgery, my husband wasn't allowed to drive for 3 months. We are 30km out of town. 5 days a week I would have to get everyone into the car, take our 5 year old to school, then drive to town and take my husband to appointments with our 3 year old in tow. Exhausting, especially when one of us was sick. We had many people around who were very happy to just drive him to and from appointments, and sit in the waiting room, or drop him off and then pick him up(and save us the petrol.. and the hassle!) Easy for them to do... hard for me to do. Selly, I have a lot to say about alternative/complementary therapies but I will do that in another post. Yvette, I hear you. I miss life the way it was before too. xx Blessings, Symphony

Re: People with young children

purpleangels — Mon, 07 Oct 2013 09:40:27 GMT

Hello there world!! Just a quick post to offer my thanks and gratitude!! Symphony...... Many people ask me how they can help.....and I often don't know what to say.... You have given me some ideas for some really practical tasks that people would be able to do and wouldn't mind doing to help out....... So Thankyou!! Thinking of all of you out there tonight who are walking this path...... PA XXX

Re: People with young children

Melanie — Sun, 13 Oct 2013 13:36:14 GMT

I am here- 31, with 2 children aged 1.5 & 4. My husband-36- has a GBM & has for 19 months. I will be back tomorrow, to discuss in further. Going to head to bed after a emotional day. Ben's 36th Birthday today!

Re: People with young children

Melanie — Mon, 14 Oct 2013 15:13:14 GMT

Wow- we have quite a few on this site suffering the same/ similar fate. I'm so glad you started this thread :) Hi, I'm Mel & I'm 31. My husband is 36 & has been dx with a grade 2 astrocytoma brain tumour, 19 months ago- which has progressed quite quickly over the last couple of months, indicating change to a GBM. We have 2 awesome girls, 1 x 4 yr old & one 19 month old. Yep- you read right- she's 19 months. The dx came 6 days after she was born. I went from having a husband who worked away, to a husband who now couldn't drive, couldn't work, & is dying. And I have a newborn. I hear you so loudly on the "your so strong", your are right- we have no choice, no option b. We are required to be strong. But I must say, I say "your amazing" to my husband all the time- & that must be the same feeling for him. He doesn't feel amazing, he's just coping- for us, just as I am coping for them. Friends, come & go- sometimes we see them, sometimes we don't. But many have shy'd away from us. I hate seeing old friends, that don't know- or only know he's been dx'd.... cause I'm coping- doesn't mean when I say "he's very sick" "yeah, i'm doing ok considering my husband has a brain tumour" that I won't burst out in sobs & upset myself- that person & feel horrible for the rest of the day. I quite often respond "i'm well- how are you" & completely avoid the conversation. My mum once asked me, why I was not honest about what is actually happening. This question was prompted by my eldest brother, complaining that he didn't know what to do because when he asked if I was ok, I responded yes. I took a breath, and carefully explained to her- if I was to tell you what goes on in my head, or even more so what actually happens in my day to day life- you would be devastated, it would give you nightmares. No one needs to know this stuff, its better to be ignorant than to know this stuff. Could you imagine- Hi, how are you? Hi, well actually I'm pretty upset. I can't seem to get these thoughts out of my head. What thoughts? Can I help? Well, maybe- can you tell me how I am to explain to my 4 year old daughter that the most important male in her life is dying? Oh and can you tell me how to organise a funeral? So that when it actually does happen, & I am so upset I don't have to think about it? How about- Can you tell me how to not get upset whilst watching my once fit & healthy husband, wither away, forgetting things, falling over, sleeping & sleeping & sleeping? OH & last question- for this minute anyway- can you tell me how I am going to cope if my husband dies in his sleep, & I wake to find him gone? Who do I call? What do I do? Do I keep it from the kids & rush them out of the house? With that, that well meaning person is now standing there staring at you in disbelief, wanting to (if not already) cry. ARGHHHHH These thoughts are to be shared with no one that doesn't go through this awful rollercoaster, they don't deserve that pain. We have had good times, & recently (last friday) had bad news of more growth. I am so lucky to have had a normal last 3 months, now it's back to hell. Anyway- enough rambling (at 11pm... gosh I really should go to bed) Symphony- I am in WA as well- what support group are you going to? I have been thinking about attending but too scared that it would upset me too much. I hope all is well for everyone- back to reality. School holidays are over 😄

Re: People with young children

purpleangels — Tue, 15 Oct 2013 10:37:10 GMT

Hello out there! Hey Melanie! I here ya about the thoughts in your head.....and how it is just not cool to tell anyone how you are really feeling/ thinking....... That's why this blog is awesome!! No judgement, just venting!! Take care of yourself so you can take care of your family!! PA xxx

Re: People with young children

Symphony — Tue, 15 Oct 2013 13:15:37 GMT

Hi Melanie, How devastating for you to have your husband diagnosed when your baby was only 6 days old. I can remember what it was like in those early days after giving birth and I can't imagine how devastating that must have been for you. I would like to respond at length to your post but we have driven 400km home today after a family holiday and I am a little frazzled. We live near Albany and we go to the Cancer Council support group in Albany, which is once a month, for all types of cancer. I had a quick look on the cancer council website and there seems to be only one metropolitan brain tumour support group which is in Nedlands. I have also had the telephone support groups recommended to me as being very convenient for a mum caring for a sick husband and small children. Not sure if you have seen the info, here's the link: http://www.cancerwa.asn.au/patients/support-and-services/support-groups/ Have you been offered support from the palliative care team? I wasn't 100% sure if your husband was having palliative care (given a terminal diagnosis). Our palliative care team works through the local hospital and Silver Chain but I also found some info here: http://www.cancerwa.asn.au/professionals/pasce/ I read what you said about what to say to other people. At the beginning of this journey, a friend said to me, "draw in the supportive people, let go of the unsupportive people." And let those supportive people help you! For a period of time I wasn't accessing counselling on a regular basis and I really needed to. That was when I found it hardest to respond to friends and aquaintances without totally losing it. I wasn't coping, and would call the Cancer Council Helpline when I was having a hysterical episode on the kitchen floor. I have found the cancer council's free sessions with a local psych invaluable- I found out about it from the Rural Cancer Council Coordinator. I'm not sure if the same service is available in the city, hopefully it is! 🙂 I hope you have a great local contact from the Cancer Council who has your husband's case file and is working on supporting you both through this time. (And can tell you about other services offered through the cancer council... free social worker to help with Centrelink, free financial counsellor to help with a will, superannation payout, credit card insurance, etc... hopefully you have been able to access these already.) I hear your embarrassment and fear of being upset, and upsetting others. Melanie, you are supposed to cry. It is an upsetting time. People who ask how you are (who know what is going on) want to support you and are offering a shoulder to cry on. If your husband is too sick for you to talk to him about your worries and fears, (and I've been there) for your own health you really need to find one or more people in your life that you can talk to honestly, whether it's a family member, friend, psych, a medical professional, a Solaris staff member or a local cancer council person. Sometimes crying alone at night isn't enough. It is ok to be out of control and share your feelings. Other people might stare at you in disbelief (if being very emotional is out of character for you- I know that it has been for me) but wouldn't it be more strange if you weren't upset? And I hear this when you speak of your brother and mother, that they are concerned that you are not coming across as upset. In my experience, I have found that I feel best when I just let it flow. If I'm upset, so be it; if I'm not, that's good. But it's when I hold it in, and try and "cope" for the sake of my husband and daughters, and don't allow myself a release valve, that I pop. If you repress your feelings, you will get sick, in one way or another. At the moment I see the counsellor once a fortnight in person, and I have a day to myself once a week (alone) in town. That's my release. I have a (free) 1 hour session at Solaris, usually reflexology or healing touch, and I talk to the volunteers there. Most are women. Almost all have had a close experience with cancer, through parents, partners, children, or themselves. They understand. I go out for coffee and lunch. I might meet friends. I do a few errands but try and keep the day for me. I drop Miss 6 at school and pick her up afterwards, but the rest of the day is mine. If my husband isn't up to caring for our 4 year old, my mum comes to stay at looks after her. If mum wasn't nearby, I think I would be using child care one day a week, just so that I could have that time. Other things that have helped are: journalling (on paper, with a pen), this forum, going to the support group, going to the support group with my husband, both of us seeing (our own) psych fortnightly, and next week we have a joint session with his psych because I asked for it. Also: the girls having sleepovers at Nana's house, me doing stuff for me, going to Solaris on a regular basis, and Ian Gawler's book, "You can Conquer Cancer." It has a whole lot of info on just about everything, how to change your lifestyle and improve your chances through diet, exercise and meditation. It includes a couple of chapters on dying, info on funerals etc. My husband read the book first and made notes in it with a pen. Then I read it, and we discussed what the book said, and what my husband had written. It allowed us to discuss what he wanted in terms of funerals etc, which otherwise we just haven't talked about. One of the reasons we are returning from our holiday on the first day of school is that recently we found out about a place in Perth which does intravenous Vitamin C and blood oxygenation, and my husband went there to find out more about it. From what I have researched on intravenous Vitamin C, it can do amazing things for cancer patients, whether they have a positive or negative diagnosis. There are a few things which can disqualify you from treatment (severe kidney problems etc), but thankfully we are eligible. It is at the Churchill Health Centre in Shenton Park. It is hard to find info about, it doesn't have a website. It is quite expensive as it is not on the PBS, but we are going to do it. It seems that I have written a lot even though I didn't feel up to it! Looking forward to hearing from you. xxx Symphony