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
