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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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
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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.
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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. 🙂
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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. :)
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I have been talking about my experiences and feelings on the forum, under the topic "People with young children." A couple of other women with similar situations have responded. Perhaps you'd like to take a look. :)
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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.
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Thank you for sharing your story. It is very reassuring for me to see stories of other people who have been (or are) in a situation that is similar to my own. I identify with many of the feelings that you have mentioned. I keep coming back to your post and reading it again. It helps.
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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
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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.