Thank you all. 

I’m just so frustrated with him. Am I allowed to be? I’m not sure. I know I’m not going through this, god I wish it was me. I am the stubborn pig headed determined one who will not be beaten, back down or take no die answer. Mark on the order gZnd is the easy gonluvky do anything for an easy ride to avoid cobfrontation kind of guy. 

He disemt want to eat as everything tastes horrible, nirvrgat he can’t eat or is too sore to eat. He won’t take the build ups for the same reason. Has had 2 in total today and nirhibg else and nothing since Tuesday. Can’t make him see they are meds’ not food and he needs them/ has to have them. 

I’m having to battle to get him to take his meds. I don’t feel like I have the fight to do this for both of us as well as try and hold our family together whilst working two jobs. 

Hi Jo

I have been following everyones advice which I have been very grateful for . I think our husbands are going through the same treatment 3 Cisplatin and 7 weeks radiotherapy  T2 and N2  soft pallate  but you must be just ahead of us .But I am sorry you are having the struggle with your husband to take advice . My husband is just at the end of the 3rd week and we have the 2nd chemo session on monday he had terrible nausea with the first session so I am hoping we do not have the same problems as Mark has had. He has lost all taste now  and says everything tastes disgusting just like Mark he gets very depressed when we try something he thinks he will like then it tastes horrible.It  is so hard especially if your husband normally enjoys his food I think he had been lucky not to loose it sooner as mine has but that is also a shock that he cant eat now The only thing my husband has really managed is porridge banana and custard rice pudding and yesterday to our suprise a hot sausage roll flaky pastry of all things  He used to enjoy eating scrambled  eggs but forces them down we have tried everything but  the nurse told us once the taste buds go it does makes almost  everthing taste inedable but he  does have a Peg fitted but did'nt want to use it unless he had to . Oncologist has been  specialising in throat cancer for 25years  and he didnt really give Adam the chance to say no to having it fitted  . Its not very nice to go through the fitting  he is 69 was very fit and active but I was concerned about how he would cope  . Its the tiredness is a problem as well  better and able to eat morning and early afternoon goes to pieces after 5pm .

 Hazel's advice to have the feeding tube  is  really an option  to help him through this it would help with the medication as well.  Could you  get some back up from Oncologist or maybe a Macmillan nurse and try and talk your husband into having one fitted . My husband seems to listen to what they say more than me could you get a nurse to call to your home or on the phone  on the pretence of just a catch up and see if she could persude him .

We had a bit of an issue with pain relief he kept ignoring me about how much he should be taking  (does not normally take anything even for a headache) he thought he could do without taking it until needed until our nurse explained it is so much better to keep a level of analgesia in your system  could you ask your doctor or GP for an arm patch for pain relief to save trying to force the medication down.

The other option is maybe to say to him that although you are normally a tough character and he knows that but you are in this together to fight this awful illness and he is upsetting you and making this nightmare worse for you because he will not agree to extra help I think that is reasonable and not selfish even though he must be really suffering with what he is going through. It is so hard as a carer I do recognise your frustration as well as it being very scary . Okay when he is hospital not so bad but when it is just you and you have your children to look after as well it must be so hard . I am very resilient  and have cared for other members of my family with cancer related illness and  can normally handle most situations thrown at me but this has really shaken me so I do sympathise and hope Mark will come round. Thoughts are with you

Evie

Appetite/Eating - treatment end/recovery phase

I had this problem and I personally had the cancer treatment after being diagnosed with tonsil cancer last June, still in recovery, so can tell you first hand for real how difficult this can be sometimes. It's not easy but I understand as well as symphathise. 

To put some of this into contex from my own experience.
Its not always the case we won't eat or cannot be bothered or do not understand that we should eat something or take our Ensures. In fact in some cases, like myself ,sometimes we can't eat. As hard as that may be for others to understand, its harder for us going through it and sometimes difficult to explain.
If it were just that easy to have others say to us eat something.

My consultant and medical support team did take the time to further explain just how serious the treatment we have had and what we have had done to our bodies.Some fare better than others after treatment while some, like myself can take a bit longer to get ourselves together.
It can sometimes be as simple as nuasea and feeling physcially sick but add that on top of recovering from 30 blasts of radiotherapy each day while being so exhausted, debilitated, in pain/discomfort, throw in some mucas, maybe oral thush, dry mouth with no saliva that aids our eating function, neck sore/red and burnt or itchy,constipation from Morphine if you dont take something like Laxido etc etc
Oh and our taste buds are shot over and above no saliva to help eating function and putting things that might taste like cardboard or metallic doesnt help motivate us.
You get the ( honest )  picture I'm painting and while we get it we should eat, all these things can play a part in why we cant.I certainly wouldnt wish for this or would I wish this on anyone else.
The light at the end of the tunnel is great, eventually, but its a tough old journey we go through with many faecets of the fall out of our treatment that effects our recovery all at once.
So I guess I'm trying to outline some perspective from a patients point of view but words are sometimes not enough to explain how we feel or what we go through to others.

So solutions
If its something as simple like nausea or feeling sick which puts you off eating I was prescribed Metoclopramide Hydrochroride for anti sickness and that worked a little for me while I was nearing the end of my treatment. I was advised by my specialist nurse that I should be drinking 6 Ensures a day to get some kind of fuel and energy ito my body. Thats a hard one and not always possible.

When I was in full recovery mode, eating was more difficult and I had a real appetite issue and struggled with for some time. I lost quite a bit of weight and eventually I went back to my medical support team who gave me some great gentle advice and we came up with an action plan to try and help.
They also put into contex again, that my body was still running a marathon every day and was looking for fuel/glucose from anywhere it could get it and needs more calories than normal to try and even maintain just an even keel.
So action plan - I met with my medical support team of specialist nurse/speech & language specialist and dietician - first of all it was determined that my swallowing function was reasonably ok so that was not a barrier. I was then given an explanation and help to understand the difference bewteen good calories and wasted calories ( I posted few pages ago with a little more detail ) as what we are looking for is nutritional calories that will add value/help and also supplemented by Ensures or Complan for a period. They also did explain to me that at that time, as I had waited so long, that my body was pretty much in starvation mode looking for scraps of fuel, and that only source without fuel input would be body fat and body muscle, which in turn aint going to make us feel better and hinder recovery period.
I was given sheets/logs to complete and I had to write down everything I put into my body and was to try and eat small portions of what i could and was little and often rather than main meals.
Breakfast/mid morning/lunch/mid afternoon/dinner/bedtime.
So i tried to get into this routine, baring in mind fragmented sleep and fatigue made the timings difficult sometimes, and was advised to try and up the calories. Things that went down more easily like full fat yoghurts/scrambled eggs(with cream in) cottage pie, rice puddings/custard etc
May not work for eveyone but I felt that by going back to the medical support team and hearing it from them and having a plan mapped out plus I knew I had to go back in 2 weeks and hand my sheets/logs back into them to show them what I had managed. They will weigh you to check and no point in lying to myself by filling in fake fuel intake. and this gave me a strange mental motivation to show them and myself I could do it. I did have the mentality that I was taking medication rather than enjoying food and that I was making myself better. Whether I enjoyed any of it was irrelevant.

I never had a PEG fitted and not was I given an option for some reason and was never discussed. not that I wanted one. Hazel will give you some great advice over PEG and the benefits of having and that also maybe a route that could be explored as a solution.

Sorry for the long explanation but from a patients point of view it can just be a time thing and eventally something has to give and the alternative is they will do it for you in hospital if you cant manage.

Luckily my partner was great, very supportive and understood that I was not doing on purpose and was gently encouraging trying to help any which way and not adding to agnst by showing any personal frustrations felt. Would not have done any good and I would have responded accordinly. I did feel bad for her as I knew she was worried and just wanted me better but at that time I felt powerless to help myself for the above reasons.
I hope gives some contex/complexities into the frustrations and understanding of some of the underlying reasons why we cant sometimes eat and maybe worth while trying the anto sickness meds or if like myself it was a little more of drastic measures required, then back to the mecical support team to outline where you are and get an action plan and have them support/monitor you.
You can be kinda left to your own devices after treatment so I had to go back to them eventually to explain where I was in terms of appetite/fatiguwe recovery etc,
I made up electronic version of the sheets given in Excel and logged everything I took and that was quite a good focus. I didnt want to go back and show them a bunch of blank entries and was no point in lying to myself and filling in fake food/liquid intake. Happy to share the spreasheet and examples of what I recorded if you wanted to email me in PM, I can send an attachment

No intent to cuase further aginst but the above does inject a little reality into our real world during recovery from this difficult treatment. 
To leave on a positive, my saying of there is light at the end of the tunnel is actually true and although its a tough journey and often a long one, we do nudge forward.
Hope helps and taken in manner intended, and hope for resolutions that fit circumstances best
I have also update my blog with this should anyone find it helpful to go over timelines I logged each week post treatment

radiotherapythroat.home.blog

Onwards & Upwards

Ian

Hi Diann

i see that Ian has replied to yiur post in detail, it’s a long slow road to recovery he will get there we all face differing difficulties but we are proof that there’s is light at the end of the tunnel.

Have yiubthe Ensure drinks food supplement prescribed they are high calorie if struggling with them dilute 50/50 with water 

good luck 

h x

Hi big Bertha.

think you need to get Mark to look at my blog I am the been there’s done it got the T shirt girl .I in week 4 was in same position as Mark and like Ian eloquently puts it it’s not  us the patient being difficult it’s  the  cancer in our bodies that has taken away the basic  function  of being able to live by eating and drinking as the rest of the world or that’s what it feels like to us at the time. 

My advise is see the dietician in the morning either before or after treatment insist on seeing her and you need the nasal feeding tube or at least a goodbtalking to if the dangers of de hydration the radiotherapy is ni walk in the park  even now I have to try and eat 3000 healthy calories a day and that is justbto maintain weight i Ann 5 ft2 and 9 stone so nit big our bodies are fighting or have fought those illness and the next few months for yiu will not easier if Mark is  struggling now. 

Dont want to scare or bully you but I have helped over 30 people   Directly  who have contacted me .None if us in here are medically trained but we’ve been through it from day one to wherever we are in treatment. and my blog has now over 8000 views all over the world in thus last year just by sharing my experience ok we  are all different but the thing we all want is the get through this horrible illness .Yes we all know the outcome can be good but like my oncologist said the treatment is among the worst you can have , just close your eyes imagine youncan’t or dont want  to  or drink nit just at that moment but every minute of the waking day ,I still say to John some days it’s just so hard I can’t remember what a normal mouth feeling is and I am 1 year on Tuesday since meeting my oncologist for the first time  Positive mental attitude is what got me to where I am .but it ain’t an easy road .Plus is he in any medication at marks stage I was ibuprofen co codomol and oramorph if he isn’t it’s not there to drug him  it’s an aid to recover y

please think  seriously about forcing the issue  

rant over again.john my hubby says time for tough love  

Hazel xx

Hi Jo

I wish I had some great advice on getting your husband to eat, drink or take his meds.  It sounds as though you've both been having a really tough time - and I'm really sorry that you're having to go through it.  

You've already had replies focusing on what problems Mark is likely to be facing and why he's finding it so hard to get anything down, but not so many that have dealt with what it's like to be a carer for someone who won't 'co-operate' by doing things that will be of obvious benefit to them.  My husband has now had 25/30 RT sessions and 5/6 Cisplatin chemo, so his taste buds and throat are going through the same stuff as yours.  The fact that he's doing very well and doesn't mind knocking back the supplement drinks he's been given (Fortisip) is obviously helping me cope with holding everything together.  However, I felt I could really relate to the last line of your post, and the despairing frustration within it, because it's how I've felt for the last 4 years dealing with our teenage daughter who struggles massively with anxiety and depression.  What I've learned in that time is that however much you care and want to help someone, you cannot 'do it' for them.  Instead, you have to do what you can and then step back and offer support rather than judgement.  It's much easier said than done (because it feels like letting go and is totally against your caring instincts) but if you can manage it just some of the time, then you'll feel less stressed and the situation will feel as though it's improved for everyone. 

It might sound blunt, but remind yourself that he's a grown-up and perfectly capable of working out what he should be doing.  Make sure what he needs is available, help him in whatever way he asks you to, then get on with the things you need to do.  It shouldn't feel like a fight that you carry all the responsbility for taking on (although I know it does).  Your energy would be better spent on holding normality together, for yourself and your family.  

If you want to let off steam privately, then feel free to message me.  I'm not an expert on cancer, but when it comes to emotional health I have years of hard-earned experience!  Try to find some time in each day to yourself and keep in mind that these times won't last forever.

Jacqui



 

Hi  Sory to hear you are both having a tough time of it. My husband was exactly the same, I struggled and am a pretty inpatient person so it was so hard understanding why he just couldn't eat. I read alot of what these guys on here wrote and it really is easier said than done. My husband says now, it is psychological, where it is so uncomfortable and unpleasant to eat or drink anything you just don't want to. Sometimes after spending half an hour to eat or even drink something (Ensure) to then just cough it back up was just really hard to do.

I would say see what the dietician says regarding a naso gastric tube (depends on his weight loss) and go from there. For us, the NG was a query as in-he nearly had 1 but didnt in the end. 

It is very frustrating for you and that's just how this is I'm afraid, but it's short term and this is just what they go through-it's hard.It will get better but it's very emotionally hard for you, I understand how you feel.Just make sure he is drinking enough fluid-even if its just water, if he becomes dehydrated then he will have to go into hospital. 

Good luck-but like they all say on here-there is light at the end of the tunnel, you're just in the hardest bit now-it will pass. My husband is 5 weeks post treatment and was very ill but now is going out again and eating out! Back to normal pretty much with food, avoiding some-like spicy but normal diet really. We still have a way to go too but am trying to stay positive and enjoying him feeling better again.

Take care of yourself and try not to worry too much-it sounds pretty normal to me and yes! very frustrating and of course you will feel it-it affects you too, but it's all part of it. Big hugs Joy x

Fantastic news! Really pleased for you both! Go and live your lives- well done xxx

Hello all- Great news today-went for 6 week post hosp check with Oncologist & no cancer! I'm still a bit in shock as we didnt realise today we would get that news-sounds silly but I thought the scan told us/you  in another 6 weeks time-but the oncologist did say 'no its clear, thats it'...so is that it? how conclusive is that?

We both walked out a bit shell shocked-in a very good way. I know its 5 years & all that until they really know-but is today as big as it seems? We're just on cloud 9 at the moment-so yes a very bright shining light at the ned of the tunnel & boy it's so worth it-very happy :-)

Thanks all that gave me such good practical & emotional support xxxx