I rang Bill’s chemo nurse today (after I have tried his consultant twice) and asked if it would be possible to see her sometime this week whilst Bill is having his unscheduled and then delayed Chemo session. There are lots of questions I would like to ask. She said she could only see me if Bill agrees. We have met twice before whilst; in Bill’s company she explained what would happen. I told her there were things I would like to ask which Bill does not want to know and I can understand why he doesn’t want to know. He is so upbeat and optimistic about his treatment. Understandably, he only wants to hear positive.

I said I was surprised and pleased that Bill was so well after researching, reading peoples stories here and reading all the forums. He was diagnosed as stage IV cancer. Surgery too invasive as not enough healthy tissue would remain to rebuild – and here he is, large as life and twice, you know the rest. Now into his third chemo session. Apart from taste buds all over the place and constipation, which is nearly under control, he is great. She was very sharp and said ‘just because he is feeling so well doesn’t mean to say the therapy isn’t working’ whar???? Yes sweetie I knew it was from the first day, he neck had visibly gone down and he could move his tongue.

Amongst the many other questions I would like to know, is the ‘stage’ reassessed at any time? If so what stage is it now. How do we/they know if and when he has had enough chemo. Shouldn’t he have a scan before he has any more chemo in order not to suffer the side effects numbness in nerve endings etc. He suffers from chemo brain and forgets who has said what about whom. (He did before but we didn’t call it chemo brain then)

I am sure his first diagnosis was primary in his tonsils, secondary on his tongue and diseased lymph nodes. Now he tells me his lymph nodes have disappeared and the primary in his tongue has almost disappeared. Tonsils?

So how much R/T does he need, will he have to have more chemo as well.

More that anything, the consultant gave us 50/50 odds originally – has that changed? And unless it is 100% certain, I don’t want Bill to know.

What should I do?

Hi Angie

First of all, does Bill agree to you seeing his nurse? If so, you can choose what information you want him to hear.

Anyway - here are some of my thoughts - I'm quite sure others will respond differently

As for the other questions regarding Chemo and Radiation Therapy, as far as I'm aware, these are fairly well known dosages (to the learned profession) and will be given according to proven success rates. From my own personal experience, I was happy to let those professional people just get on with dishing out the treatment and me getting on with handling and getting through it. The nitty gritties were not important to me - but everybody is different. Also, you as a carer may feel that you need to be on top of every situation, which of course is admirable but sometimes it's not possible. However, just being there in a support role is the best that any patient can wish for.

Good luck to Bill with his treatment - It's no fun, but he sounds as if he's facing up to it well.

Cheers - Pete

Hi Pete. thanks for that. The problems is that if I say want to know something, he says 'no, no. don't make a fuss' he doesn't want to know so doesnt want to know and so I shouldn't either. Anyway. just got the message he is going to see the consultant today at 1.30. The appointment had been made a few weeks ago, then they said they would cancel as he is already in hospital however we're still on so hopefully will get some answers later today.

Speak to you later

Angie

Hi Angiebaby,

I have not had the treatment that Bill is undergoing, only surgery followed by R/T so I cannot anticipate how his condition will progress.

However I am with you, you need to know the pros and cons even if Bill only wants the pros, at the end of the day you are the carer and will have to plan for the future and know what to expect. Bill should give his permission for the Consultant/Nurse to tell you anything you want to know about his condition, he should trust you to handle that information sensitivley and in particular according to his own specific wishes, you do not need to tell him anything for his medical team will tell him just what he wants to know.

Bill is an individual as well as your spouse and of course has the right to the privacy of his medical records, but what would a spouse wish to conceal from his/her spouse with respect to that?

This is I suggest something for you and Bill to deal with, for once Bill gives his unconditional approval to you knowing in full his medical condition, diagnosis and prognosis then you can deal with his medical team direct such that you can be prepared. Try to explain this to Bill and why it is important for YOU to know as far as can be known the future even if Bill wants to block out the downside of his condition so as to remain at all times positive, can't blame him for that, Eh! Alan

Hey Angie,
I can tell you're feeling very frustrated and anxious at the mo.
I was the same as Pete in that i let them get on with it - but look where that got me! I wish i'd questioned the dose of my chemo. A customer at work, who's an oncologist, told me in the week "there's no way you should suffer nerve damage like that. Someones made a very grave mistake". He was trying to persuade me to go for compensation but i just don't want the grief!
before R/T starts Bill will have scans etc done to pinpoint where the R/T will be aimed. Noone told me at this point how well i'd responded to treatment. When i had my scan at my 4th cycle i was told i'd responded well (after treatment they said there was no traces of cancxer but they couldn't say at the time). My oncy also said that if i hadn't have responded so well to Chemo then she wouldn't have put me through R/T.
She explained that R/T was broken down into Palliatve R/T & Radical R/T. Radical meaning they're aiming for a cure.
I'm not sure what you can do if Bill wont let you find out everything you want to know. Other than jumping in and asking while he's sat there.
Make sure he keeps an eye out for the nerve damage. Mine started with just a slight tingling in the fingure tips.

Let me know how it goes.
Michelle

Hi Angie
Dont be put off if you need to know

I did not ask enough questions and you think about them later so go ahead and ask

Rt is measuerd in Grays i had 55 grays in 4 weeks

I had chemo but no nurse just day one turn up and recieve it

Hope all goes well

Dave and Sue

Hi everyone

Hope you don’t all think I have been discourteous or ungrateful not responding to your very welcome posts but my Broadband either wont let me on at all or lets me stay on a few minutes then crashes but think me and BT George in darkest Bangalore may have fixed it.

First of all, thank you all for your responses, as ever, so positive and so supportive.

I went to see the consultant with Bill on Tuesday, which was most enlightening, mainly because there were two of Michelle’s favourite people there, the student doctors. The senior one who looked about 16 and another young lass of about 14. The 16 year old had to explain everything to the 14 year old so I got a lot of my answers, as well as having a look down Bills throat whilst she was wearing that scull cap thing with a light. (I would love to have a look when they put the tube down, which the students did not do and I thought could be a bit OTT to ask the Oncy if I could have a go!!)

Apparently they do not re stage the tumour and I didn’t dare to ask whilst Bill was there if is odds were any better than the 50/50 given originally.

They are saying now that he will start R/T on 29th June and another dose of chemo on 2nd July, being mindful of Michelle’s Chemo O/D but didn’t dare to ask. I couldn’t possibly say to Bill I wanted to see either his chemo nurse or his Oncy to ask questions, he would dismiss it out of hand saying there is no reason to ask any more questions and knowing that I am a very determined lady he would be frightened I might upset someone and jeopardise his treatment. Whilst we were there I was asking when they would be doing the next scan and would we have some feed back and Bill is saying over the top of me, no, no, that’s fine, they know what they are doing. As Alan says I can’t blame Bill for blocking out the downside.

I was thinking of ringing the help group they advertise in of all places, the ladies toilets in the hospital but need to get my head together with what I need to get answers to. There are so many things that puzzle me. The Oncy said he wouldn’t need a PEG fitted. How can he tell?

Bill came out of hospital last Friday, not bad at all really, a bit worse today. Erin (6) says he looks like Uncle Fester.

Thanks again guys

Angie

Angie i have to step in here and tell you right out that if you want to know you have to ask.If that means telling the doctor in front of bill that despite what he says YOU need to know then you must do it.Rob was absolutely useless at asking questions and just said yes sir no sir three bags full sir.Me i need to know every minute detail,even if it is something i wish i hadnt asked.The doctors very quickly got used to my infernal inquiries and always made the time to talk to me directly.

When Rob started to have bad side effects it was me that went seeking out the registrar while he was having his treatment,and me that used to talk to the nutritionist. He never told them the truth anyway!!! If he had mouth sores or a lot of pain he just used to say "well they told us this would happen" My answer was "yes they did but you dont have to suffer".

Some people prefer to go to hospital and blindly accept everything they are told,but it is your right to ask questions and their duty to answer you.If Bill doesnt want to hearwhat they have to say, ask if you can have a word after he has left the room.
Lastly Angie dont set too much store by percentages not one size fits all and even people with a much worse case scenario can confound statistics.Just think positive and fight like hell.

love Liz

Thanks Liz, I know you are so right. I think I have said before, Bill sounds very much like Rob in many ways. I can’t understand how a mature man with great intellect and much presence turns to a simpering jelly when confronted with a chemo nurse! But as Alan (DWR) says, you can’t blame him for blocking out the down side.

I know there are things that I don’t need to know the answer to, like how come people like Rob, Dave, Alan, Brian and many more on this site whose cancer was not as advanced as Bill‘s had surgery and have suffered the consequences of re building tissue, affected speech, difficulty eating etc., is R/T going to destroy the bits that others had taken away surgically. The Oncy seems so laid back about it, ‘oh yes, there will be some discomfort but you are a strong fit man, there is no gain without pain, you will be fine’.

Well, I need sometime to get my head together, write down all the pertinent questions I need to ask because I know I will digress and become woolly minded. I need to get focused which I will – soon.

Great to see you’re back on form!

Angie

Angie on our american sister forum,i have noticed that far fewer people have surgery than here.A lot have neck dissections done after radiotherapy but a lot of the late stagers just have chemo and rad,and quite a lot of the very early stages do as well.Rob had very aggressive treatment because he was young(44) very physically fit and early staged.T1N2cM0 so they were hopeful of a full recovery,but that doesnt lessen Bills chances with radiotherapy.Radiotherapy kills everything in its path, and reduce tumours to nothing over the course of treatment and it will knock him for six make no mistake,but your doctor sounds less than nurturing of his patients i must say.

I hope you may have more luck with your radiographer who will be your front line contact and as far as we were concerned ours were one step removed from saint hood and such a huge help,and source of information.

Good Luck tomorrow and stay strong girl,and i won't hold your origins ( i cant write the place ) against you.they breed em tough there too.

much love Liz

Angie,
Keep asking questions! You need to know what is going on for both your benefit. As you have read on this site we all have had slightly different treatment and all survived in our own way. As far as the Peg is concerned, your onc may only be giving r/t to one side and therefore you have a better chance of eating.
I had a peg because of r/t to both sides plus chemo. Thank goodness I did! I dread to think how much more weight I would have lost!It will be a time for ups and downs for both of you, so the more info you have the better!
Anne

Thanks Anne, it may sound like a daft question but why did you have r/t to both sides? One of my questions would be; how come he had his primary on the left hand side of his tongue and infected lymph nodes on the right hand side. Surely the tumour cannot cross over?

Liz, your rose might be the wrong colour but you're a real beauty alright!
Thanks again.

Night Night till tomorrow everyone

Angie

quote:

your rose might be the wrong colour

To understand what Angie meant, read the "War of the Roses"

During the Wars, there was even a Battle in Wakefield. The ruins of Sandal Castle are visible from my study window.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Angie Robs primary tumour was on the right side ,and his secondary tumour in the mandibular gland was on the left side.when he had his bilateral neck dissection, the nodes under the primary were clear, but he had two positive nodes on the side where the 6cm secondary was.
Throughout his treatment this confused the doctors who despite their best efforts could not find out how it had croosed over.As a result he had RAD to both sides of his mouth and the underside as well.Hence the reason why he suffered so badly.So the answer to your question is yes it can cross over.

love liz

Hello everyone, Sorry I an taking to long to answer, have just sit down for the first time today. Thanks everyone for your comments and Dr V for enligtening everyone re War of the Roses. As you know the battle still goes on depending which rugby team you follow (league obviously).

How strange the cross over seems to have happened to quite a few people here, if it is so common why are the Dr's puzzled about it.

Am going to ring Oncy tomorrow.

See you tomorrow folks