People with young children

yvette975
Occasional Contributor

Re: People with young children

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
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Ray84
Occasional Contributor

Re: People with young children

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
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Symphony
Occasional Contributor

Re: People with young children

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
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Symphony
Occasional Contributor

Re: People with young children

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
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Symphony
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Re: People with young children

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
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purpleangels
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Re: People with young children

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
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Melanie
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Re: People with young children

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!
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Melanie
Contributor

Re: People with young children

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 😄
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purpleangels
Contributor

Re: People with young children

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
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Symphony
Occasional Contributor

Re: People with young children

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
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