I would like to take the opportunity to say thank you forum members as well as the forum itself. I couldn't manage without it.

If you don't mind I would like to use the forum to share my experience and to find some support.

First day of treatment. 6 hours are required to complete treatment. And that's without seeing any specialist.
What an emotional day - traumatised - and still is. NOTHING could have prepared me for this.
Seeing your loved one getting 'poisoned' and then 'grilled' was harder than I thought. I can't stop crying, even now. While I was busy organising our family life, appts , food, clothing, meds I was fine but now I'm a mess.
Maybe it's letting go �

Simon was scared - but not displaying any emotions. He kept apologising for having done this to the family - as if it's his fault ???
He's still smoking - it does worry me and kind of hurts me that he hasn't got the drive to stop. He knows about all the risks. I just don't get it.
He's been suicidal for many years now and life has been difficult. Doesn't he want to get cured? He said the 'spirit' has left him and he's waiting to die.

It is so difficult to deal with a mental and physical illness at the same time.
And our journey has just begun � the forum posts have prepared me mentally -somewhat - as to what is going to come but to support someone who doesn't have a drive to live is so draining.

Heike,would it help for you to tell him that since we can't go back and live our lives over, it is meaningless to say it is anyone's fault? We just need to move on. It is a better use of his and your energy. There is so much going on with new approaches to cancer treatment and new drugs, one never knows.

Good luck and hugs to you.

Very well said Gloria.

Sorry for having sounded 'harsh' but I guess it was all coming out. Both illnesses have a huge impact on the family and everyone seems to be suffering.

Today was a much better day - emotionally. We had a nice family dinner and were able to talk about a few things.

Simon had his pick done - 2 lines.
We have also learnt that he's going to have chemo 33x as many times as rads.

Heike - Glad to hear that today was a better day for you and your husband. During my son's Tx, I always grabbed eagerly at those moments and they helped me to keep going.

There were many times though, when I doubted my own sanity and ability to help my son getting through his treatment. He had been hospitalized for suicidal depression even before the discovery of his cancer. Seeing his suffering and how he just wanted to give up, I tried giving him all manner of reasons why he should keep fighting the cancer beast, even to how it would affect me (his mother) if I were to lose him. I couldn't bear the thought of losing him. Nothing worked until I mentioned his 5-year old daughter and how it would be devastating for her to lose her father. It was then that he started to fight and survive. Everyone is different. what works for one may not work for another. But as a caregiver, I think - "Whatever works, DO it!"

As for guilt over the past actions which may have caused his cancer - nothing can be done about the past. It's over and done with. So forget the apologies - what's important now is: "Where do we go from here?" I'm not a smoker so I cannot begin to know how difficult it is to quit but from what I've observed, for some it may be a lot harder to do than for others. There are ways to do it and they bear investigating. In life, for anything challenging, it is overwhelming when looking at the total picture from beginning to end, - but if we can just take the first step and keep going to the next step, then we've done something positive. It's ok to fail because we get many "do overs". "Just Start" is a lot easier to do that to contemplate the whole journey.

Being a caregiver is a tough job but to be able to help your husband, you have to make sure and take care of YOU and your physical and emotional health. Caring for your husband, your children and your job is a lot to handle. Lots of caregivers have had to talk to their doctors about managing the stress with meds. When relatives or friends ask "how can I help?" be sure and have a list ready to give them. Hope you continue to have many good days. Just start.

Heike, don't ever apologize for allowing your frustration show. We have all been there. We know what it feels like when we seem to be losing control over the situation. Caregiving is hard, hard work.

Do you have a hobby that can focus your mind and fill in those moments when you are waiting in the hospital, or when your husband is asleep and you get a few minutes to yourself? I knit -- mostly socks because they are easy to carry. Even now, when I go with John for his infusions of the trial medication, I always have a pair of socks that I am knitting with me. By the way, I have found that knitting is a very good conversation starter. Every time I pull out my knitting, the ladies in the waiting room will come and talk to me. One gentleman too, one time asked me in the elevator, "You are the lady who knits socks, right?" and then he proceeded to tell his wife how amazing it was that I was making socks with only four needles. She wasn't pleased because she said,"I did that too." Apparently he never noticed, ha!!

Heike, this is a safe place to vent, no one is here to judge, were all here to support.

When my husband went through treatment it was up and down emotionally the whole time, you just gotta keep going, just take it a day at a time (focus on trying to get him to eat/drink as much as possible).

Do not forget that you have to take care of yourself too, not just your husband. When you are overwhelmed take a few minutes for yourself (as corny as it sounds I used to take 10-15 mins when I felt overwhelmed and find something on youtube that made me laugh, I know of others that go for a quick walk, or even yell into a pillow, call a friend to talk, or come post here even, etc)

I know your husband is still smoking have they tried anything to help him quit? My husband could not quit on his own he took Rx meds to help him.


~Trinity

Thank you for your ears, compassion, advice and thoughts.

Re smoking he's been given nicabate patches, now he smokes on top of them. No matter how much we tell him that's wrong as he's doubling his intake, he keeps smoking.

Day 4 and he is already struggling to eat anything. He simply refuses to eat since yesterday. I 'forced' him to drink one of Christine's milk shakes per day but that's it.
Due to daily chemo I know he gets a litre of fluids via drip but other than that no other water.
It worries me but there is little I can do to make him eat and drink if he hasn't got the will.

He's developed radiation parotitis, a version of the mumps and has inflamed saliva glands already.

He's already expressed stopping with the treatment as it is getting difficult. On top of that treatment is like a full time job, that means he has to do a lot and take responsibility. He's never had this kind of responsibility, so it adds to his dilemma.

Trying to stay positive. Looking forward to the weekend and hoping to have some me time or spending time with the kids.

The radiologist is still of the opinion that no PEG is required and he should try to go without it.

The kids are struggling a lot as everything revolves around Simon which isn't really new to them. Mental illness has been cruel and they haven't had a father for the last six years.
Tonight I'm off picking my son up as he's got drama productions 3x a week. I must admit it is sooo difficult to find a balance and not to forget the kids. After all their school and uni lives continue and have commitments.

Please also remember to find time in all this chaos to be kind to yourself. You have the weight of the world on your shoulders. Even if you take 10 minutes every couple days to walk around the block it would help to clear your head.

As far as the kids go... try finding helpers. Anyone who has offered their assistance to you during this difficult time, now is the time to take them up on it. There are a million things they could do to help that would take some of the pressure off you. Cooking dinner for your family, picking up the children once a week, picking up prescriptions for the pharmacy, even walking the dog, a play date or doing a load of laundry is helpful. The children can even get their own responsibilities that would help.

If your husband is already talking about quitting be prepared for a real battle as the end of treatment comes. Unfortunately, treatments get progressively more difficult as time goes on. I wanted to quit too but my son and nurse refused to allow it so I had no choice but to finish mine.

Ask for hydration at the chemo lab to help avoid dehydration from his refusal to drink water. This will catch up with him and he is going to feel awful.

I honestly dont know how you manage with your husband struggling against everything he is supposed to be doing. Its hard enough to get thru this in the best situation, but to avoid everything he should do will only make it 10x harder for him. This will soon take its toll and he will begin to really feel lousy. This is all part of getting rid of the cancer. Its a fight, either he wins or the cancer will. I wish I could somehow help your husband to understand how serious this situation is and how he needs to step up. I know his mental ability prevents his fully understanding everything.

I wish your husband could get a better handle of his tobacco use. By continuing to smoke its causing so much damage to his body. I know how hard it is to quit. I hope he will wake up and decide one day that he is stronger than the tobacco and throw them away for good. Im sure he wants to be around for to watch his children grow up. Smoking while on the patch could be harmful.

Best wishes!!!

PS... Here's a tip. I put it on a separate post in case you want to try it.

Try printing out some posts you want him to read and 'accidently' leaving them someplace where it makes it appear as you did it for your benefit only. Maybe if your husband read some of the advice you were given it would wake him up. It kinda reminds me of how my children would occasionally become stubborn and not follow my directions, only to end up doing it later anyway. You know how kids hate their parents to be right. This has worked for many families over the years.

Good luck and stay strong.

Heike, if your husband is not taking in enough fluids, he can quickly become dehydrated. Keep an eye on the colour of his urine, if the colour gets darker, he is dehydrated. He will feel extremely bad when that happens. My husband got lightheaded and literally passed out in front of the doctor. See if you can arrange for him to get hydration at the radiology clinic. It will take several hours each time, but he will feel better and you can take the time to go Nd run errands if you need to.

Heike - I wonder if it's time for the 'Nurse from Hell" to make an appearance? I am not the "yeller" type but at one point in my son's Tx, I had finally had it with his resistance to everything and I did yell words to the effect that I was doing all I possibly could to help him survive and the very least he could do is help me out a little - that I just couldn't do it all by myself! Or maybe you could "arrange" for one of his doctors to have a very stern talk with him about putting on his big boy pants and start taking care of his responsibilities. What he appears to be doing now is slow suicide, so maybe a talk about funeral arrangements might also help. I am so sorry you are having such a difficult time but please do try to arrange some time for yourself. I hope things get better very soon.

The only advice I can give is to stay on him. During my treatment there were times that eating, drinking, or even sitting up seemed like the hardest things in the world. And I know that when my wife tried to get me to eat or drink I know that there were times I got frustrated and was short or even mean about it. But without some prodding from her I know I would have ended up doing even worse.

I agree with checking about getting some extra fluid with treatment or in between. Dehydration is a vicious cycle; when you get dehydrated you feel terrible, and it's really hard to catch up with just drinking because of how bad you feel. The PEG is a last resort, but some people definitely need it to get through the treatment.

What a great idea. Will try to do that.

I habe been in contact with our mental health department again and am hoping to get some help. Although knowing my husband he will find it a bother having to talk to someone.
Even being positive this time that I was heard and some follow up will happen. I have annoyed enough people so that they remember my name� fingers crossed.

Yesterday, he was very depressed and picking someone up all the time is exhausting. Well, the weekend is here and it seems as if one Is 'on holidays'.

Heike - I admire your strength, your courage and patience. Sometimes you do have to try different things before things start to happen. I'm keeping my fingers crossed for you, too.

It's so nice to have a weekend off the relentless treatment, isn't it! You sound more cheerful, Heike and good on you for making a noise so people remember you. It's very hard to break through that medical/bureaucratic barrier sometimes. One question (one people have probably asked before): is there no medication that will ease your husband's depression?

I hope you have a bit of a rest and that next week goes as smoothly as it can.

Regards
Maureen

Maureen it feels like being on holidays.

Yes, he is on medication regarding his mental health and does take them. But there is no such thing as a 'guarantee' that they work. He's had to change it often and sometimes it's a trial and error.

Anne-Marie you won't believe it but we got a telephone call from the Mental Health Department and this on a Sunday !!! Didn't know they do that �

Simon has been assigned a case worker !! She wanted to make a home appointment but Simon declined.

Unfortunately, I didn't get to speak to her - Simon picked up the phone - and I was very disappointed to learn that He didn't want her help but having said that it's very typical for him.

How is that for timing. There is me trying to get heard and get help � the phone rings and he happens to pick it up and declines the service. I am soooo angry and it's frustrating to see someone declining support when they desperately need it. Why do they think the support think is bad? Grrrrr

Unfortunately, due to privacy laws they do not have to speak to me if he hasn't given any consent to do so. What a stupid system. If there is someone who hasn't got the ability to admit they are ill and needs help why not working with the caregiver together??

Anyway, enjoy the rest of your weekend. And thanks again for your support.

Re the privacy laws - Maybe you could talk to someone at the Mental Health Department re how to go about getting your husband's consent for you to be involved. I can't imagine that they wouldn't realize that someone in depression and undergoing mental health Tx, might not be able at times to make logical or healthy decisions. I seem to remember some time ago a similar situation where the caregiver had finally gotten her "patient" to cooperate or sign something to enable her to be able to consult with the doctors. Maybe someone else will have more ideas or suggestions.
Your and your husband's particular situation reminds me of another caregiver whose husband continued smoking until the end. This was back in 2007. Her name was Liz in the UK and her screen name was Cookey. She started her blog at the point where her husband entered Hospice care - although I think she posted even before re her experiences. If you think it might help, you could check out her blog which starts here:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=63463&page=1

About your husband's reaction to talking to the case worker. . . it's probably his wanting to be in control which is common to oral cancer patients when they feel they've lost control over so many other things which Cancer has taken away. . . do you think he might accept the idea if he knew that it was something that could help you as much as him? Something that would help you take the best care of him?

Can you try to get some "family" help? If your husband doesnt want to participate, the family counseling would still help you and your children. It would give you some ideas on how to better handle your husband during all of this. Many treatment centers offer mental health support for both the patient and their families.

Best wishes!!!


PS... If you could somehow get your husband to sign over power of attorney for his medical care then you could better call the shots. I would imagine this would be pretty hard to do. But maybe you could approach him as saying if he was too ill to speak for himself then you could get him the help him he needed.

The privacy laws can be infuriating. When my husband was diagnosed, at his first visit to the RO's, they actually had to checked with him that it was all right to talk to me if they needed to call. Some people do not give that permission, which I find weird. The doctor could not tell me my husband's prognosis without my husband's permission either.

I think Christine's suggestion is a good one -- get family help instead. Is there a pastoral/counseling unit at your hospital? Can they help?

I hope you can find a way to convince your husband to accept help. Maybe through other channels. No offense but I suspect you are a real broken record and he has pretty much tuned you out. A friend, relative, or someone else he has a relationship with would be worth a try.

At least here in the USA, trying to obtain power of attorney is very difficult to do unless a person is obviously incapacitated or of unsound mind.

Maybe a bit of trickery might be justified to get a release but only you can think through something like that.

Good luck.

Maybe if your husband felt like he did have a choice in the matter of his treatment, it might make him more amenable to suggestions. So here are two choices:

1) If he continues to refuse any help, and just wants to die, the whole process of dying is not pretty and can drag on for a long time.

2) If he accepts help from wherever it is needed, to make him as comfortable as possible, he may have a better chance of getting through the tough part of Tx and surviving the whole experience.

If the idea of #2 seems daunting, maybe he could consider agreeing to just ONE meeting so he can be better informed re what the help consists of. Sometimes an objective outsider with experience in his/her field can get better help and communication going than a friend or family member. Sure hope something good happens soon.

Thought I'd take a brake from posting BUT because I don't post doesn't mean I don't read them. I always value your input and need it too.

I found communication can be added stress as well that means keeping family and friends informed abroad and in Australia. I managed to create a Facebook page just for Simon in order to do that. It turned out to be a brilliant idea now I don't have to text everyone.

I managed to get consent from Simon to discuss his health with the health professionals except mental health - still working on that. I'm glad that I don't have to worry about it anymore.

He has completed 10 out 33 and the side effects have started to show. The forum has helped me greatly concerning these as I was prepared and didn't come as a surprise. Thank you so much to everyone who has contributed.

Unfortunately, Simon is still smoking. It seems as if he's smoking even more. It is sad to see but what can one do?

He is not keeping up with looking after himself and when at the doctors he even lies to them. The care is shared between my oldest daughter and myself, we are just managing but are exhausted coming Saturday. It seems life gets taken over by Simon completely and little time is left for us. The day starts and ends with him. No time to 'shut off' so it seems.

I find myself being cornered. By that I mean the health professionals are looking at me as if they are saying what the ???
Mentally, emotionally, I'm drained. I want to take everyone by their shoulders and shake them so hard so that they wake up. Mental health is a real problem and needs to get addressed while undergoing treatment but unfortunately, they are not equipped for that.

Enough of my whinging � the weekend is here, better refuel and be ready for week three.
Thanks for listening again.

Being a caregiver is a difficult often under-appreciated task. Throw mental health issues into the mix and its a recipe for making things twice as hard. I cant imagine the frustration you must go thru every day, all day long.

When you first came to the forum and explained your family's situation I instantly knew this was going to be one rough road, especially for you. As a caregiver please be kind to yourself. I know there arent enough hours in the day but you must take a few minutes once in a while just for you. Time to clear your head and forget about having the weight of the world on your shoulders. Even if you take a walk around the block by yourself every night its a big help. Give it a try, it cant hurt.

There have been several other members here who have had difficult husbands. These poor caregivers have struggled from day one as their husbands have chosen to ignore sound medical advice. Ive seen a couple times the spouse become so frustrated at their lack of input and attention to their own health they have simply told them step up and help take care of yourself or Im done fighting a losing battle. Its come down to the ultimatum of the husband choosing to become an active participant in their treatments to get the "problem patient" to contribute. Such a shame that the bigger picture isnt understood! This is a life or death fight. If your husband continues to fight the people who are trying to help him instead of the disease then Im concerned this wont turn out very well for him in the end. I wish I was able to have one hour face to face time with your husband. Im certain by the time that hour was over your husband would "get it" and help himself more.

Im so sorry you are going thru such a hard time!!! Please begin immediately taking time for you. I know it will help you to feel a little better about not just yourself but the situation.

We are here not just for the patient but for you too. Hang in there!!!

Heike - It was good to see your post and to know that you are still with us. It is sad about the smoking. For some it really seems so very difficult to give up. But you cannot take on the responsibility for that. No one can make another person, think or feel or do anything that they are either not able or not willing to do.

Do take time for yourself even if it's just a walk around the block, lunch with a friend, seeing a funny movie, whatever gives you a break. It does help.

Heike, I hope that you will print out Christine's and Anne-Marie's posts above mine, and leave the posts where your husband will find them. You can add mine to that print-list if you'd like.

Your husband is being both very selfish and very self-centered. You know this, all of us who have been following your struggle to help him know this. He needs badly to know this.

So, for you, take a moment and realize that we are not responsible for anyone but ourselves; and we (and we alone) are 100% responsible for our lives and our actions (including in-actions).

You are not responsible for the fact that his fear drives him to be an intractable ass, he is.

You have CHOSEN to assist him every way you possibly can because that is what we all do for those we love, but you are NOT responsible for him refusing to cooperate in his own salvation, he alone bears that responsibility.

Please, do not torture yourself with self-doubt; you are doing everything humanly possible to wake him up to his reality, but only he can do that, you cannot do it for him.

Hang in, but don't try to carry his burden; it cannot be done and the doomed effort will damage you. Please don't let that happen.

Good Luck, and Be strong in rejecting any idea that you are responsible for the consequences of his refusal to cooperate in his own survival.

Bart

Heike, being a caregiver myself, I know that the worry and the frustration wear one down even more than the physical tasks. It is the mental anguish that makes you feel tired and isolated because no one else seems to understand the whole picture. Do set aside a few minutes every day when you shut off the thoughts of illness and caregiving. When you are taking that walk around the block, look at the buildings, the people and make up background stories about them to take your mind off the troubles at home. You have to look after yourself, you still have a life to lead.

I have been struggling to write although I wanted and needed the support but everything just seemed too much.
I wake up and my brain is on auto drive � Simon / cancer and I go to bed doing the same. It never stops. Burning out slowly but still going.

Thank you for your messages and yes, you are right he should take responsibilities but the reality is different. Still struggling to find any support, the system is horrendous. I get told it's a team working together but in reality everyone is working alone.

In the meantime I have gotten consent from my husband to discuss his health with all professionals.
My fears have become reality 'cancer depression' has set in on top of his other mental health problems.

He's had an infection between week 2 and 3 and reacted badly to chemo. They had to remove PICC line and he was on IV antibiotics as well as oral. He became very anxious and was agitated during this time. The infection has cleared.

We have finished 20 out of 33 treatments and the path is very rocky. I have difficulties getting him 'to look after himself' , I.e. Applying cream, drinking water or anything else. It's tough.

Thanks to all of you for your contributions to this forum. Because of it I was and am well aware of side effects and can address them as they arise.

I gather you are done now how are things??

Hello Cheryl,

Thank you for asking. Yes, treatment has finished. Last one was Thursday. Can't believe it but we did it. It has been a rocky, exhausting and emotional ride. In the end I took control and still do.

Simon went through treatment without a peg. His teeth, jaw and gums are in good condition, skin no major damage apart from a cut behind the ear and ear lope, hearing ok.

He's lost 21kg since discovery of lump until now. As he was a big man he could afford to loose the weight. He doesn't eat, can't keep food down but manages supplements. Dehydration is still a problem as well constipation or diarrhoea, he's gagging a lot and of course having to deal with dry mouth and mucous build up.

They wanted him to come in 3x a week for the next fortnight for IV fluids to make sure he's dehydrated but he declined. Let's hope he manages to drink enough water.

Unfortunately, he hasn't managed to quit smoking �

Overall, I think we are doing much better than a few weeks or months ago. Also his mental health is slowly improving (he was put on anti depressants as well) and seeing the oncology psychologist is helping too.

He is just plain asking for this cancer to come back if he continues to smoke. In my 8 years on this site I don't remember one patient that lived when they did not stop smoking.

Thanks for being so blunt David and yes, he was made aware of it by oncologist and surgeon. But what can you do?
If this wasn't a wake up call than I don't know what is.

I used to get worked up, stressed out and angry about it but for my own sake had to accept it and try not to think about it.

Heike, you are doing a wonderful job.
Really hope the next weeks of recovery go smoothly.
Being the Caregiver is the most difficult Job. Simon is so lucky to have you.
Tammy

It's a tough place to be, Heike, and no matter what anyone says, some people decide the stress of quitting is more than they believe they can handle. Just know, no matter what, you can't be their behavior police. Try to not let it bother you too much. You have enough things on your plate that you can direct the outcome. Keep focused on what you can do, not what you can't do.

Your husband is very fortunate to have you by his side during this journey.

Thank you Tammy and Uptown.

Yes, very true to focus only on things that one can do and can change. It's frustrating though to see someone not taking care of themselves.

Never thought how much impact cancer diagnosis and treatment has on caregivers and family. Well one day at a time. First week in 3 months without any appointments. Yeah. Better make the most of it.

Thanks again. I wouldn't have been able to care for Simon in the way I do hadn't it been for the members on this board.

I check now and again to see if you have updated as I read all your posts.
There is nothing I can add that has not already been said. However your comment below reminded me that I had read here once that if one person in the family has cancer everyone has it!
[quote=Heike]
Never thought how much impact cancer diagnosis and treatment has on caregivers and family. [/quote]
Best wishes to your family and to you with your tough job as caregiver.
Beste Gr��e Gabriele

Hey there - congrats on getting through it you've done wonderfully. You do the best with what you have - hugs.

Good to know that you have made it through treatment; wishing you smooth sailing from now on.

Heike - Glad to hear that your husband and you made it through treatment. Hope improvements keep coming your way for both of you. You have been such an awesome caregiver!

Hallo Gabriele,

Thank you for your lovely lines. Being German and reading just a few words in German brings some joy.
Having to learn all these medical terms in English was a challenge.

Yes, it's so true cancer has impacted on all of us. The kids had their friends over for a long time. It's nice to have some 'life' back in the house.

Hope you are doing ok.
Alles Gute
Heike

Can I ask how to reintroduce food. I'm a bit at a loss here.

Simon has lost now 25 kg and simply refuses to eat. Gagging having been the trigger for not eating which then led to getting sick.

Also he developed two mouth ulcers and the mouth wash is burning.

Consider getting a Nasal Tube and by pass the mouth for a few weeks. It was a game changer for me post Tx. It's a non surgical 10 minute in office procedure and he can pull it out when he's finshed with it, at least my doc gave me the OK to do it.

What is he gagging on, Ensure/Boost or solid food? At a post treatment workshop that I attended, some people started with apple sauce, rice pudding etc but got most of their daily food intake from Ensure/Boost. That was some four or five weeks post treatment. Have you tried rinsing with flat club soda? Our hospital recommends that for mouth sores, too. It worked really well for John. You might want to look for the low sodium club soda at the supermarket.

Hello,
Not eating is not good but what is worse is not drinking liquid and keeping swallowing working. Dehydration comes on very fast and can send him to the ER in a blink. Keeping the throat and swallowing working is critical too; otherwise there is chance he might be on tube long term.

I know you do the best you can but keep trying.

As to gagging, get some anti nausea meds.

Ask at the treatment center for a speech pathologist. A barium swallow test should be done to ensure there isnt any physical problems preventing proper swallowing.

Thank you for your suggestions.

The gagging started in week four of treatment. Simon said that when anything touches his tongue he can't handle it and the gagging reflex kicks in. He says swallowing is fine.
He has anti nausea meds but the oncologist said that it isn't related to nausea as it is his tongue otherwise he's fine.

He manages to drink 3 glasses of ensure and maybe 3 glasses of water. Definitely not enough but I can't make him do more. Sometimes he tolerates wheet bix but that's it.

He gurgles with soda water to get rid of excess mucous which seems to help. The mouthwash , Curasept he's on, stings and he doesn't tolerate it.

His energy levels are very low. Tired and exhausted all the time.

Since rads was just finished 9 days ago, its understandable that he would still feel pretty lousy. It will be a couple more weeks (longer if he doesnt increase his intake) before he begins to feel better. The fatigue can hang around for months.

Its his choice if he wants to get better or continue to feel horrible. The first 3 weeks after finishing rads are the worst ones as the radiation is still working. This is where he runs the highest risk of ending up hospitalized for malnutrition and/or dehydration. Im sure his throat is feeling very painful so I give him alot of credit to still be swallowing 6 glasses of anything.

I hate to say it but you might have to be blunt with him so he understands. Its up to him how quickly he recovers, increase his intake and bounce back quicker or continue doing only 3 glasses of ensure and it will be much longer.

Being a caregiver of a difficult patient must be a very frustrating job. You are holding up very well! Much better than I think I could have done.

Best wishes!

Heike - Just a note about the mouthwash. . . . My son went back and forth between two different mouthwashes - Magic Mouthwash and something else that was sold over the counter at the drugstore. When the first mouthwash wasn't working, the second one did. And then when the second one didn't work anymore, he went back to the first one which worked again. So It might be a good idea to check with the doctor about trying a different mouthwash. It helps to numb the mouth for a few minutes so that swallowing can be less painful. For my son, the two weeks after treatment ended were absolutely the worst with not wanting to drink or eat and being so very tired, sleeping a lot, to the point where I would often check to see if he was still breathing. But slowly, after the two week mark, he began to improve and each little improvement was celebrated because I could then see the light at the end of the tunnel. I had to record all his intake of food and water and when he argued about not wanting to drink, I would point to the chart on the refrigerator so he could see for himself that he hadn't had the daily quota of liquids. It's so hard to see someone you love suffering so, and sometimes you have to try different things before something works. It does get better so just hang in there.

Using a Waterpik on the lowest setting with the tongue scraper attachment, warm water and a bit of the mouthwash in it works very well too for getting rid of the mucous.

Gloria what is a waterpik?

Anne-Marie, Simon is going to see radiologist tomorrow. Unfortunately, I won't be able to accompany him but will tell him to ask for another mouthwash.

I like the recoding method. That way one doesn't have to argue. As I'm not home all the time it's tricky but I figure the weekend was a fair indication about his intake.

Will give it a go though. Thanks.

Thanks Christine. Yes, it is frustrating, it feels like looking after a toddler sometimes � but on the other hand I don't want to discredit anything as I have absolutely no idea what goes on inside the body and mind and above all what it feels like.

Learning from you OFC members I have started the process 'to back off', that means he has to take charge in taking care for himself.
Having said that, I have just been diagnosed with a couple of health issues myself and need to take care of myself for a change. It's easy to dismiss oneself when being solely focused on one person.

A waterpik is tool that uses pressurized water to get into the tiny spaces between teeth. Its available at most pharmacies and retail department stores here in the US or online thru our Amazon link.


Waterpik @ Amazon

I already typed the search word in, just hit enter on the Amazon page to bring up the waterpik.

Heike, this is the link to Waterpik in Australia

http://waterpik.com.au/

Heike, I ordered a Waterpik from one of the online pharmacies in Australia.
Just google it and see what comes up.
Tammy

Heike you can find Waterpiks at Harvey Norman if you want to see one before buying it, I bought mine at Chemist Warehouse, it was cheaper.

Thank you for all your entries. Will head off get one.

According to specialists Simon is remarkably doing well. He's lost now 30kg and is eating / drinking the bare minimum. I guess it's up to him whether he wants to speed up recovery and looking after himself.

I, have been in a lot of pain and pushing myself too much and above all forgot to look after myself.
Now I'm struggling with degenerative arthritis in my spine, prolapsed disc and neurological pain that may cause irreparable damage to my spinal cord and legs facing spinal surgery.

To be honest my feelings are ll over the place. A bit much to take in �. Simon cancer and myself possible spinal cord damage �

Trying to keep it together. Thanks again to all of you.

You have a lot on you plate, Heike. It is so tough having to look after Simon when you yourself is not in the best of health. You can only do so much.

Nutrition and hydration are vital for healing. Vital. He should not be thinking "I'll just lose weight I can afford to lose some, I'll just get it back later" as many of us do. It doesn't work that weay, and makes your recovery much longer. The experienced folks here will harp on about it, because its true.

My mum has degenerative arthritis right now too. Her husband is under chemo for lung cancer, her daughter is recovering from chemo and a masectomy and her son, me, is dealing with SCC! Every journey is different and you're on a tough road. I hope you are getting the support you need and if there is anything we can do to assist, please ask.

Reading your story Dave I don't think I should whinge. Oh boy, life can be cruel. Little do I know so it seems. Neuropathy is the new word in my vocabulary.

Dave, in fact Simon isn't doing well at all. Today he fell, getting dizzy all the time. He's not keeping up with fluids. Been thinking of taking him to the hospital. He seems to very weak.

No matter how much I whine he just doesn't see the need to look after himself but I shall keep pushing.

It's so difficult Gloria. It's like having a little child but a grown up version.
On one hand I have to look after myself as no-one else is going to do it for me but on the other it means I'm selfish by looking after my own needs first and not his. I wish I had magic wand that works

Heike, do not, for even a moment, think that you are selfish. If you get sick, both you and Simon will need looking after. If you look after yourself first, then Simon will get the care that he needs from you. If he is falling down, I would take him to the hospital to have him checked over. It may be he is dehydrated or he needs more nutrition. In any case, the doctors will be able to tell you what it is. While you are there, can you get the doctors to read Simon the riot act -- let them tell him that he is endangering his own recovery.

The not-eating and drinking is a story that I heard over and over while John was undergoing his treatment. Every time we were in the Radiation Nursing Centre, there was bound to be at least a patient there who had to be told by the doctors that unless he/she ate, there was nothing the doctors could do for him/her. Even the doctors and the dietitians were getting frustrated with the hard-headed patients on a regular basis.

That's a good idea that Gloria had about getting your husband's doctor to impress on him the importance of proper nutrition and hydration. You have to try different things sometimes. When my son was having a lot of trouble with sores in his mouth, he reached a point where he refused to eat or drink and I had to threaten to get my daughter (police officer with a gun) to come help me shove him into the car and take him to the hospital and have a feeding tube put it. That did it. He started trying a little harder. I felt so badly for him - I could see how very painful it was and how he suffered. I don't know what could work with your husband, but as Gloria says the doctor might be able to help. Sometimes someone other than a relative can make more of an impact on how important it is to get proper nutrition and enough to drink.

Well, I did threaten to take him to the hospital and it seems that it has worked. For the first time he hasn't lost any extra weight (this week) and his metabolism is working too. He even brushed his teeth!! And tries to eat a little.

I don't know what it's like to lose the ability to taste anything and can only imagine how hard it must be to eat something without taste.

I'm off to see the Neurosurgeon. Let's see where my journey takes me.

Thanks again for all of your support. Couldn't have done it without you.

We eat for pleasure ans when you take that senation away, you might as well give me a pill. That was the first horrible part of my treatment, loosing my taste. Worst part is for a very long time your brain is telling you exactly what you are about to put into your mouth will taste like and then BAM it either has no taste or even worse it tastes bitter or just plain bad.

Heike, here's to hoping you get good news from the neurosurgeon.

It sounds terrible David, not an easy way to live. And yes, one of the pleasures why we eat is taste but if your own health is at stake wouldn't that be incentive to eat? The drive to live � little do I know so it seems.

As a bystander I find it frustrating, hurtful, pulling my hair out in desperation to see someone 'wasting away'. Maybe hypnosis can help to retrain the brain?

Unfortunately, my appointment is another 4 weeks away. Sadly, I haven't got private health insurance , only Simon, so I have to wait my turn. I have tried to skip the queue by wanting to pay cash for consult but no such luck. It's like being a second-class citizen �

I'm sure I'll survive it's just frustrating

Simon had his CT scan done and all is clear. PET scan in 7- weeks time. I reckon the waiting and the unknown is almost unbearable.

Not a day passes where cancer isn't on once mind. I guess it will remain like this forever.

As time goes on, the further cancer, treatment will be in your mind, although, certain events, dates, will bring them back, hopefully only temporarily. It all becomes a blur after a while, and I even forget my worst times after almost 5 years, If it weren't for my medical records, updating doctors. Etc.

It does get better, and good luck. Waiting is the worst though.

Hello everyone

Although I haven't posted I am always watching �

Simon had his Pet scan and it came back clear. What a relief.
Eating is problem no 1 still as well as dry mouth. Otherwise he's doing ok.

From my point of you recovery is worse than treatment. Definitely a long road ahead. Having been consumed by cancer it's time to live life again, easier said than done though.

Hope you are doing ok. My thoughts and prayers are with you.
Take care of yourself and your loved ones and be kind to each other.

Heike

Heike, that is fabulous news. Celebrate and enjoy.
Tammy

Congratulations Heike and Simon. May our signatures never grow longer!

So true David. Congratulation to you too.

Tammy, it's been an emotional journey so far. Thanks for your thoughts and best wishes. Hope everything is ok up your end.

Good Luck and best wishes fo many years to come!!! Semper-Fi Bob

Hi Heike, that is very good news indeed. The dry mouth will pass too. Maybe you would like to consider cooking more with a slow cooker. Take care of yourself too.

Hello folks... Caregiver here. Prepping for what is to come. My friend had his mask made today. He has a 3cm tumor on lower 3rd of tongue. He was a mess while mask was being made. He is having a harder time swallowing in the past few weeks since diagnosis. He almost choked as he could not move his head at all when the mask was being molded. It was very bad for him. Has anyone experienced this? I am concerned about the rad treatments that will star and he won't be able to swallow. I realize the time in the mask during the rad treatments will not be as long as forming the mask today but.. has anyone experienced this? I will of course discuss with doc. Treatment will finally start the 14th. Thanks

Yes, the mask making process is horrible!!!! Im sure many patients struggle with it, I know for me it was no walk in the park.

Sandy1028 - I pm'd with how I prepared for my radiation and the mask, plus I had a mouth guard to keep my tongue in place.