I am a German married to an Aussie and living in Australia, Adelaide. We have 3 children aged 16, 18 and 21.
Unfortunately, there is very little support in Aus as well as resources.

My husband (51y.o.) was diagnosed in March with oropharyngeal cancer, stage IVB, HPV 16 positive, and has bipolar disorder.

His surgery was 26 days ago, Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette.

Treatment starts on the 28th, 33x Rads and 4x a week chemo , cisteplan.

First up I am the carer for my husband, he's been suffering from severe depression for five years and last manic episode was April 2013. He doesn't work.

The learning curve about cancer, terminology, treatment and privacy laws has been steep . Don't want to touch the psychological and emotional trauma we have been through. In short - my husband doesn't really 'register' as to what is going to happen to him. It's as if it's all going above his head. As it is he's already having trouble performing normal day to day tasks, I.e. Getting out of bed, having a shower and brushing his teeth.
As a family, we have to organise everything for him. It is sad to say but reality for us. Now we are facing treatment. Having read up on as much as I possibly can - I AM SCARED , feeling lost - the medical system doesn't cater for people with mental illness and no matter how much I am emphasising it I seem to get no response at all.
I feel that he is just a patient amongst everyone else and no-one wants to listen. How is treatment supposed to work with someone who is already having trouble looking after himself.

The time after surgery was horrible. Getting him to eat or drink, or just having a shower was a major task. His oral hygiene is almost non existent. To get him moving is a chore.

I am working and have a house with hormonal teenagers and am trying not to loose it. I am devastated and scared of the unknown � I don't fancy having to deal with a manic episode or even a deeper depression on top of it.

Sorry that you and your husband are having to deal with this and being a Caregiver is a tough job BUT try and get over the emotional aspect as soon as possible because it won't do either of you any good. Have a frank discussion with him and tell him what you are dealing with and what he needs to do to be a responsible patient. Have a discussion with his docs and let them know what's going on. Perhaps they can hook you up with a local support group. Do keep posting and reading on this site. I'm sure you will hear from numerous Caregivers with vast experience so take a deep breath and let's get you both thru this treatment and the recovery. I'm not underscoring the difficulty you both face but it has to be done and it's doable.

Heike, contrary to what common sense tells us, not all patients want to know about their condition and their treatment. My husband is a case in point. He refused to learn what his prognosis was when he was told that he had metastases in his lungs. When he was initially diagnosed, he did not want to come on this forum to read anything because in his view, it was all "too grim." It does make our job as caregivers a lot harder because we have to take responsibility for everything. I finally made an agreement with my husband -- I would take over the management but he would have to listen to me. It worked and got us through his first treatment and continues to work now that he is in a clinical trial.

Do your older children drive? Can they take over some of the driving when you husband starts treatment? Your local Cancer Society may likely have volunteer drivers who can pitch in and help as well so that you won't be running between your job and the hospital.

Your children could certainly be asked to take on some of the household chores and the nursing duties. They can, for example, keep an eye on his meds and his weight.

Your husband's oncologists should know about the meds he is taking. The same is true of the doctor who prescribes the meds for his bipolar disorder. Ask the latter to call the oncologists and ask for advice. Doctors routine do that so that the patient gets the right form of care. I even had the Emergency Room doctor calling the medical oncologist when my husband developed blood clots after his second chemo session.

The diagnosis and the looming treatment are overwhelming. Make it a point to take it one step at a time and try not to get ahead of yourself with too many "what if" questions. Deal with the issues when they arise but don't worry yourself about them before.

Do you have access to pastoral care or a therapist at your hospital? They may be good sources of support as they would understand very well what the caregiver of a cancer patient is going through.

I wonder if your husband will be fitted with a feeding tube before radiation starts. At our hospital, this is almost mandatory for Head and Neck patients who are getting radiation. If that is the case, you can at least not have to worry too much about forcing your husband to eat and drink as what he needs can be delivered through the tube.

Come and post when you have questions. We do have members who are from Australia and New Zealand. They will know more about the system and will probably give you good advice.

Good luck and keeping you in my thoughts.

Heike, that sounds absolutely awful. It's bad enough for healthy people going through this treatment let alone those who have other medical problems. Have you been referred to a social worker? Such a person should be able to give you access to all sorts of assistance. The same with the Cancer Society. I was surprised and pleased to hear the other day that they will provide frozen meals if I want them. This is just an example of help that is out there of which I was previously ignorant.
I don't know how the Australian medical system works but assume it is not too dissimilar to New Zealand's. When my husband was diagnosed with dementia and I was struggling to cope I had excellent help from a social worker and occupational therapist.
I wish you well in the weeks to come.

Maureen

Thank you for your comments David.
I have been reading since day one of diagnosis and have learnt so many things that don't even get said by professionals.
My frustration is that I am not able to find any support for people with a mental illness undergoing treatment. Surely, there are people having to battle both.

Unfortunately, my husband has lost the battle with bipolar disorder. He's given up on life and has absolutely no drive whatsoever. That in itself brought a lot of problems on the family life and life in general. Every day seems a struggle.

Finally in January we got a social worker involved but to my dismay I have to admit that the Australian medical system is horrendous it seems one is only a number and paper work gets done to make the system look good. It has been recorded that he's suicidal but that's about it. They promised to see him in hospital amongst other things but nothing has happened. It's so frustrating not being able to link those two illnesses in order to achieve the best outcome.

In the end I am alone with all the problems as usual but having to support someone who is suffering mentally and facing life changing treatment is overwhelming. Almost too much to bare.

Gloria, you are right in stating not everyone wants to know.
I must say the 'chemo guy' was most accommodating and painted the picture of treatment in very nice colours to my husband and was upfront with everything.
He's already asked about quitting when things go tough or not undergoing treatment. The oncologist made sure that he understood what is lying ahead of him but it seems it's all going above his head.

Unfortunately, none of my children have a driver's licence as yet but the oldest is working hard to get it asap in order to assist with appointments.

I have just learnt about the my rights to get informed about my husband's treatment and progress. As some communication was done via mobile phone calls to my husband only I was totally left out. And his inability to retain all of the information made things worse.

His treatment will be at two different hospitals. One for chemo, the other for radiation and for surgical needs again at another one. So far I've been given one appt that is for radiation stating I'd be told the others on the day. What a joke. And this is through private health cover and not public.
Thinking we'll get better care.

I have been trying to get a psychiatrist working together with the specialists at the hospital and the doctor who's supposed to have done something about it , hasn't. It's so frustrating.

The Radiologist decided against a PEG given that only one side of the neck requires radiation. I stressed about the problems we've encountered post surgery but he said it can always be fitted 3 weeks within the treatment if need be.
He thought if my husband starts off with one he will get lazy about trying to swallow and recovery will be worse, I.e. He'll be dependant on it.

Thank you for your kind thoughts and help. It feels as if I'm turning in circles and don't get heard.

Maureen, my daughter has contacted 'Canteen' which is an organisation for children up to 25 years of age who are affected by cancer. She can find some support there.

I have contacted the cancer foundation (I wasn't even allowed to join their forum for head and neck cancer as it is for cancer sufferers only and not for their carers. What a joke. I am and will be the primary caregiver but that's another story).

I have learnt that the Cancer Foundation has a peer support so I asked my husband to contact them. Well what can I say he got contacted by a cancer survivor (not with the same cancer though) , had a chat and the person said I'll give you a call in four weeks and see how you are doing. Hmm� I don't want to sound ungrateful but truly, that's it?

I have been able to get some support through the Carers Association mainly offering workshops and how to cope with stress. That's all nice but doesn't really help me.

I have spoken with Mental Health Association there is no support available with regards to cancer.

I am sure that there has to be some support out there. I will keep looking.

The best resource has been this forum so far as to expectations, treatment and medication. It seems as if I have to learn all about it in order to know what to do.

As to myself I haven't stopped crying, filled with sadness and desperation. Having suffered from my own loss of my husband and marriage due to mental health now this.
Trying to stay positive but it's so difficult. Times are uncertain and I can bear only so much. What if I am not coping? Who is taking care of the family, house, property maintenance and paying the bills?
Well one thing at a time.

Thank you for listening and your support.

I cannot even imagine what you are going through. I don't think we can really offer much advice as we are not in your country, but please know we are here to listen to you and be your virtual shoulders to lean on. All you can do is the best that you can do, if your husband gets to a point that you can't help then he may end up in the hospital and the professionals will take it from there. We will be thinking of you and watching for updates.
Best wishes,
Kathy

Heike,

sorry to hear what you and your family are going through. I'm from Melbourne so I understand our private and public health systems. Is your husband being looked after at the cancer centre at Royal Adelaide Hospital? I'm surprised they have him travelling all around the place for different treatments. Combined chemotherapy and radiotherapy treatments are usually performed at the same hospital. As part of treatments patients are given access to social workers, therapists, counsellors, dieticians etc.

One place for support and counselling is the Cancer Care Centre in SA. My understanding is they provide services for cancer patients and their families. Their contact number is (08) 8272 2411.

Hope this helps.

Karen

Your situation sounds like you need help and outside the walls of your home you are going to get the basic support to treat the cancer.

Hormonal age children in the house? This is THE life altering experience together and the bus taking this journey has all of you as occupants. It is time to engage them to support you as other options seem very limited.

Easier said than done but pulling together will make everyone stronger in the end and provide the highest level of support for your husband and their dad.

Good luck,
Don