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

Thank you for your advice Karen. I will follow it up but what you are referring to is a center which offers complimentary paid services and is the only one. It's about one hour away from us and offers workshops, counselling, literature and well- being in general.

No, he doesn't get treated at the Royal Adelaide Hospital which treats public patients. He is under private cover and his Cancer Care Center is a good hour away from us. As this is new to us we are still learning about the system. The treating doctors operate at different hospitals which are a little closer to us so we have to go there. Luckily, they are not too far apart from each other so I'm hoping we are able to manage.

I will contact SA Cancer Council again and ask what services are available to us.

Thank you Don. Yes, you are right we do need more support but I seem to hit brick walls � one feels helpless and alone.

over the years the children have had their fair share of having to deal with a mental illness. My oldest is in her last year of her physics degree and my youngest last year of high school. At times it can be pretty tense.

I just want to be as prepared as best as I can be. I can deal with mental illness but I don't know anything about cancer apart from what I've read and to be honest it sounds scary. I am worried having to deal with both at the same time.

Thanks again

Welcome to OCF! Im sorry to read what you are facing. Its not an easy road trying to be caregiver, breadwinner, mother and everything else all at once. You have found a wonderful resource to help get your family thru this.

When I went thru my first round of OC, I was a single mother of 2 teenagers. It was not an easy road at all! I found what worked best with them was to give each one a few responsibilities. My son drove me to treatments and my daughter had household duties like dogs, laundry, etc. I made the assignments fair by having them both take the same amount of time every day. Even though my daughter had many more jobs, it would take her about 2 hours like what it took my son to drive me.

Does your husband see a mental health specialist? If not, ask at the treatment facility what is offered. Im sorry but I dont have any info about how the health system works anywhere but in the US (with only a tiny bit about Canada). You may need to speak to his mental health professional and let them know your husband needs to help take care of himself. They should be able to work with him on that. Maybe there is a program to help him with daily living skills???

Hang in there!!!

I think the problem here is comprehension? Am I correct? And then after that compliance. That's what it sounds like to me. Often Bipolar patients choose not to take their meds and are non compliant or the meds aren't as effective as they should be.

Add to this the fact that there will be certain things he HAS to do throughout treatment - cancer meds - eating and drinking - when things are very very hard - skin care, and oral care - and you have a very slippery slope.

Ideally you need a one on one with the dr. who denied you the peg. The peg will not solve your overall problems - but it will take a weight off your shoulders. One less thing to worry about. Plus - the way it was put to me before going into treatment, it's a "just in case" I was to try and use the formula with it - to see how I tolerated the feeds (i didn't and ended up having it removed three weeks after the end of treatment - as I didn't use it) but I was VERY MOTIVATED.

You need to talk to him or her privately. They cannot outright discuss your husband's medical status without you having a power of attorney, but this isn't medical information perse... He needs to know what you are facing and why it is a good idea to have it in place.

Plus most meds can be delivered to your husband through the peg as well, which will also help you.

Radiation at the best of times really sucks, so trying to get someone normally health through treatment can be a real task, someone with a mental illness is going to have a harder time... unless he's catatonic.

I do hope you get some help. I know a Cancer center isn't doable for you but the plus to one... other than having all the drs and treatments in one area, is that they see EVERYTHING, and I anticipate they would have something in place for patients who have a mental illness.

hugs to you.

Yes Cheryl, that is right what you are saying. Compliance is the key word it seems to me no matter how much noise I'm making it falls on deaf ears.

My oldest daughter and I have drawn up a schedule. My husband's input has been zero. We are 'cancered out' already. No interest or input on his behalf so it seems.

Atm we have chemo appts in the morning and rads in late afternoon. Can someone tell me whether it's better to have all in one hit or having a break between appts? The reason I'm asking is what is mentally, psychologically more feasible. Given we have to travel to two different hospitals for treatment.

Is he having his chemo in the morning or just a consult with the dr.? Same question for rads? The problem with being at two different hospitals is moving between them takes time. Ideally on chemo days he should have rads first the. Chemo as it can take a while. Radiation in and of itself is very fast. 20 minutes? Sometimes (they should) they will piggy back a weekly rads check up with him so that can take longer.

Chemo he will have to have blood work before hand so that can become an all day affair. I really would push for the peg for him.

If you're tired now, three weeks from now you'll be beyond exhausted. Hugs.

Yes, chemo in the morning and Rads in the afternoon.
We were told the chemo first and then before Rads. Chemo is supposed to be 1.5 hours long the first of every week 2.5 hours. Rads 40 min.

Regarding the PEG my husband is going with his doctor's advice. Little I can do

Thank you for your advice and help.

The thing with doing chemo first is there could be a hang up in waiting for the drugs and having his blood drawn etc... Which would make you late for rads - and make for a longer day. Plus he could be feeling unwell after chemo - nauseated etc...

What chemo are they giving him?
Cisplatin should be flushed. It takes a certain amount of time to run the chemo but there are is another drug they run with it - plus they need to flush him and it's imperative that he drink a crap load after cisplatin because it's very hard on the kidneys. My hospital has a habit of running it overnight with IV fluids so they would have me come in give me rads, then chemo and then they would send me to rads the next morning and send me home.

I've been through chemo twice. Once when I had it (three big bags) and once with my father in law - his was the regiment your husband will likely have - they would have him in early - he'd have his blood drawn, then he'd check into chemo day care. And we would WAIT - some times an hour sometimes two (they had to wait for the blood work results then order the chemo from the pharmacy), then they would hook him up run fluids, his Benadryl, he would pop a steroid, then They would run his chemo and more fluids. It was on a Monday and it never ceased to take less than 4 hours - they usually gave him rads before hand because it was short and easy to fit in - plus after chemo you really just want to go home. We were at the same hospital for both, and it was still an all day ordeal. Others may share there experiences and it's possible they are different but as far as I know the actual chemo may be run over 1.5 hours but there's more to it than just running the bag.

I guess there is nothing you can do about the peg, I just hope he does what he has to. He may surprise you. But I've worked with people who have a mental illness, and bipolar people are okay as long as they take their meds but as I am sure you know some are non compliant becaus of how they feel when off them - or how they feel when on them.

I would also wonder how all the other meds will effect him - and if there are any interactions between them. As your know he probably has to have his meds tweaked as it is occasionally, but throw in different meds, pain meds, steroids etc.. And there may be some issues,

I don't envy you this, but as I said he may surprise you. Hugs my dear.

Cheryl, I do value your input. Thank you so much. I feel very much alone on this journey regarding mental health issues. But as you've said he may surprise us all.

I don't really know what you mean by what chemo do they give him. I was only told Cisplatin and instead of giving him one big dose weekly they are giving him four small ones thinking he might handle them better, I.e. Being gentler on him.

I have told my husband about your experience having rads first. I will follow it up with the specialist and ask about it.

Cheryl I have read that the treated area needs to be moisturised with sorbelene as often as four times daily. Is that correct? Also do you apply the cream before rads or after or both?

Also, I have written down a recipe about a milkshake that people have been recommending regarding calorie intake but I don't know what carnation instant breakfast is. I assume it's something American ? Are you able to tell me what a substitute would be?

So scared about the unknown but little we can do about it. Trying to be as prepared as we can in order to support him. Getting him out of bed and to get him to participate in 'life' - daily activities is one of the hardest things.

On top of it he's a smoker and yes, he has been told about the risks he's still smoking. Mental illness and smoking has always been linked together and I'm hoping he will stop - better has the will to stop. It's a worry �

The Carnation Instant Breakfast comes in several varieties and either powder form or already mixed and ready to use. Each serving of Carnation Breakfast Essentials Drink has 21 essential vitamins & minerals which is why its a great additive for the shake. Maybe you can order it online?

I understand about smoking... its an addiction thats very difficult for some to stop using. Your husband must get it into his head he truly wants to quit using tobacco (in all forms) in order to succeed. Unless he makes the decision to quit and is determined to do it then he will never be able to quit. Most smokers need at least 7 attempts before they can quit for good. Im a former smoker who now is missing half of my lower jaw all because of my bad habit. Now I help educate thousands of school children about the dangers of smoking. So much better to never start so they never have to battle the hurdle of trying to quit. This is one your husband needs to have the willpower to do on his own. I hope he will make that choice soon.

Don't apply any lotion before rads. It will just make it burn worse. Liken it to putting tanning oil on. Not a good idea. This is not the type of tan you want to enhance.
Kathy

Thank you Christine. I have tried to find a shop that ships to Australia but haven't been successful. I emailed Nestle itself and am hoping to hear from them soon. We can get Sustagen , maybe that's a substitute for it?

What an amazing job you do. I hope the youth is listening to you. Australia is very much anti smoking and now won't operate on head and neck (in public hospitals) if you smoke. I hope that you can reach out to as many as you can.

Heike, I know that you can buy Ensure powder in 900gm tins from pharmacies in Australia. It costs about $22 maybe $24 per tin
Ensure is what most of us in NZ and Australia are recommended to eat/drink by hospital Dieticians as we go through this treatment.
Most of us get the ready to drink cans of Ensure plus. You can make this up yourself . The Ensure powder tells you to add 6 scoops but to make it equivalent to Ensure Plus you just add 9 scoops per serve.
This formula will provide your husband with all the calories, protein, carbohydrates and vitamins etc. that he will need . Make sure he drinks the equivalent of 6 - 8 ensure plus drinks per day. Of course you can add fruit, yoghurt, nut butters, oils and / or anything else you want to this .
Also make sure that he has some medication to help with constipation. He will get constipated. everybody going through this treatment does.
Hope this helps,
Tammy.

Thanks Tammy. Will get it tomorrow.

I wouldn't have known what to buy.

Some of your questions have been answered. Which is great everyone here is very helpful. There are other nutritional options the ensure is great. You can also pick up a protein powder to mix into a smoothie or if you get an unflavored one you can toss it in soups. They have chocolate, vanilla, and berry flavored too. Often one scoop is 25 gms of protein - he'll need a lot to heal.

The smoothies - you can add fruit and yogurt and ice cream.

Smoking is not a good thing - it would be best for him to quit but again you've already got a lot on your plate and frankly he'll either do it or not.

The type of chemo - I meant the name.. Cisplatin he'll need a lot of fluids. It can mess with his hearing - and is hard on the kidneys.

Let me clarify - is he having chemo once a week for 5-6 weeks?

(The other chemos are erbitux, or carboplatin - these are the most popular)

Someone answered your question about the cream so that's great. I used to apply it directly after radiation and a few times later in the day, and once before bed. If he's fair skinned he may burn and blister badly, if he's darker skinned or olive skinned he may not have it as bad.. I tanned mostly. Had this funny tan from my nose down...

Anyway best of luck...

Thinking of you as the treatment starts tomorrow Heike. Love and prayers from Brisbane.

Cheryl he is having 4x a week chemo and 5x rads and the drug is cisplatin. The doctor prescribed 4x chemo per week instead of once thinking he might handle it better to get it in small doses plus getting a drip as well.

Thank you for all your input. I am feeling so anxious and it's not even me who is getting the treatment. Hoping I've got it all organised �

Will watch out regarding hearing loss, dehydration and constipation.

Here we are, one day to go until treatment starts. Time flies.

Thank you for your prayers and kind thoughts OzMojo.

Emotions are all over the place as time gets closer. I'm sure tomorrow will be quite emotional.