Hi Cathy,

My limited understanding of scans is that unless something is of a certain size it won't show up. Which is why they wait awhile before scanning again. My son just has the up the nose thingy at his checks and his neck examined all over and I have learnt just to accept that if they are happy with him then so am I.

Take Care
Mum
xx

Hi Cathy

To be honest pet, I hardly understood a word of your last post. It was a bit like seeing a consultant who talks in jargonese and cannot relate to the patient, sorry if that sounds a tad impolite of me.

I don't consider myself to be "Sun reader" and can hold my own in a variety of conversations but I feel you are delving far too deeply into all of this. I belive that the reasons we are not told the in's and out's of the disease and it's treatment are twofold. Firstly, it is far too complex a matter to explain to each and every one, and secondly it would scare the bejesus out of a lot of people.

Personally, during my recovery, I would hate to have someone around me who was constantly questioning the follow up procedeure. It would do nothing to ease my mind that I was on the road to recovery.

I know that the NHS make mistakes and people die because of it, but I do not think that worrying yourself and others around you helps the situation. If I were that concerned I would be a private patient and surround myself with the best of care at my beck and call. Mind you, that situation may lead me to paranoia and hypocondria.

I have read elsewhere on this site that our type of cancer has one of the highest degrees of reoccurance. I also read that the later it is discovered, the greater the chance that the cancer has spread to other parts of the body waiting to "start up" again. As I wasn't diagnosed until VERY late on, what am I to do, worry myself to death?? I think not.

I am sorry if this isn't read the way it has been written. I would much rather have this conversation over a pint of Liffey water whilst flicking peanuts at people! I respect your right to question the system but I worry about the effects it may have on Chaz. No matter what, I know you are doing it with the best of intentions.

Anyway hun, many congrats on becoming a "doctor". I shall attempt to become a nurse by this time next week and we shall have the makings of a rather interesting adult Chrimble game!

Ray

Well it looks like its nearly a month since my last post and I was wondering how Ray and Mimi are doing as I know that they were both due checks over the Christmas period.

Our Christmas was quite fun with Alex here and I managed to get up to London to do some social stuff which was lovely. Chaz did quite well with his eating until he was struck down with gout and some skin erruptions that have mostly cleared up with help from the GP. Last week we did some really normal things like eating out when on a shopping trip and going to the flicks to see Che and The Reader - both were fab.

Yet, despite GP attention and blood tests which were mostly normal we both seem to be quite miserable at the moment, not knowing whether the treatment has worked and whether Chaz will have to have surgery or not. Chaz seems very depressed and is up till all hours, which really worries me. I just feel so very sorry for him at the moment and it breaks my heart.

We are meeting the powers that be tomorrow and I just hope that they give him a very thorough physical examination as I wasn't very satisfied last time.

I hope you are all well.

Cath

Hi Cathy,

Glad to hear that you had some semblance of normalcy with Alex visiting over Christmas and on your outing last week. We've got to learn to cherish those moments.

I had my PET/CT scan right before Christmas and won't see my oral cancer doc until the 21st. This afternoon (I'm eight hours behind you) I see my breast cancer doc who has been sent the same test results. Because I haven't heard from either of them, I'm assuming that all is well. I asked to have the results sent to both of those docs, to my ENT and Primary - among them, at least one should have contacted me if there were any problems. Right? Keeping my fingers crossed!

The cloud of doom doesn't hang around me any more and most days I'm feeling 100% normal, or my 'new normal' which means that I no longer obsess about cancer and none of my activities are curtailed. I have long periods of time (days and days) when I'm totally detached from cancer, pain and memories of pain, and am free from those dark moments. This usually ends when reading something disturbing from someone on the board and realizing it isn't really over yet....but now I bounce back to the next cycle of feeling my new normal. That's progress for sure.

I understand Chaz' depression but never had the problem of staying up all night worrying! At his stage I was still sleeping far too much. When you're an impatient person, being told that time will heal you doesn't help; unfortunately, it's all we have. Worrying never made a problem go away, but things like meditation, watching funny movies, walking dogs, learning something new on the internet, doing something for an elderly friend or neighbor - those things worked for me, although sometimes only temporarily. As time goes on, the depression fades away. Lincoln said something that I learned in grammar school and carry with me: "Most folks are as happy as they make up their minds to be." It works.

Good luck to you two, good luck to me and the rest of us!

Mimi

PS: I have a sometimes friend who is what I call a Depression Junkie. She revels in her depression and told me once that it makes her feel Sylvia Plath-like and was part of her personality; without it she would be no one. Now that's the real illness!

Hello Folks ,hope u dont mind ,was pottering through the new posts and thought I would join in.Glad to hear xmas went well Cathy and you and Chaz were out and about doing some shopping and EATING now that us indeed is a bonus also the cinema this all is positive the rest is par for the course worrying and waiting and Chaz is porobably just assessing things the best way he knows how sometimes pottering in the night is best for some people ,I am a bit like that when I have things on my mind .I am hopefull that the appointment tomorrow will go well depression comes with the territory at certain points my hubby was the same .

Hi Mimi glad to read you are doing well and as usual always have a good little anecdote to tell .Funnily enough I have a relation on Paul's side like that who is constantly doom and gloom and thrives on it ,god help her ,then she wonders why she is never invited to any family parties .I agree with you Mimi ! if there was any problems I am sure they would have been in touch ASAP .Good vibes sent to you for your results.So glad you are feeling in good shape you deserve it .

To Big Ray, a character indeed .I hope you ARE NOT throwing peanuts at people but are enjoying the Liffy water. Still advocate the Bailleys without the peanuts . ( in moderation ! lol).

Wish you all good results .
Bell .

Hi Mimi and Bell,

Mimi I am glad that everything sounds so positive and that you have done so well at getting on with a normal life and I must say that Bell's positive attitude is incredibly inspiring. I spend quite a bit of time reading historical posts on this site and Bell,it certainly seems as if you have gone to hell and back a few times in the last four years. Coping with Paul's depression and withdrawal must have been incredibly difficult. I am and always have been overly affected by the emotions of those around me and I am much more scared of my inability to cope with the mental effects of this disease, i.e. seeing Chaz sad and depressed than dealing with the physical aspects.

Bell ,you are right we have had some great days of late and boy have we enjoyed them. I apologise for posting on a bad day – but I suppose that I am more likely to post when I am feeling down. Chaz's late nights have actually been spent on a project - putting all of his music in electronic form and meticulously cataloguing it – not a bad way to distract.

Anyway we are in a more positive mode today as we went to the Cancer centre yesterday and he had an endescopic examination and everything looks ‘normal’. Most of the staff that bumped into him said he looked well. We had a long conversation about the policies and timing of neck scanning and of neck dissection which I had orchestrated and although I still don’t really agree with them, it did give Chaz an important opportunity to ask questions and get a better understanding of the rationale for neck dissections etc which was useful.

We then spent the next few hours driving around Brighton on a sunny afternoon looking at second hand convertible cars – something we have been doing for about a year. It is not something that we need, but I am being supportive as Chaz inherired some money last year and I think Chaz needs a treat.

So, apart from some new aches and pains that Drs think are down to nerve damage from radio we are in quite good shape and I must try and put apprehensions about what the scan we are having in 3 weeks aside for a while.

Where is Ray, I would love to go drinking beer and flicking peanuts with him! I miss him and hope he is ok.

Best
Cath

Hi Cathy good to hear from you,Glad Chaz is feeling brighter its such a roller coaster of emotions and possible side effects and what if's. Can really bring you down more often than not but on the good days it does help to go out and do nice things like looking at convertables, sounds lovely and a wee treat for chaz sounds just the ticket .

Like you we are having a few hick ups with possible side effects but Paul got new medication for this head pain which has finally succeded in giving relief ,phew !!Clinic feel sure it is nerve damage but are checking anyway .Paul has his MRI next Wednesday so we will take it from there. I am finding things slightly different from a few years ago when evrything sent us into panic mode even though we did get a major knock last year.I think becuase Paul has gone through RT a second time in May I seem to be able to convince myself that this will indeed be RT nerve damage so we are contenting ourselves with that thought and now we have the pain under control for time being we are just getting out and about and focussing on things needing done and catching up with friends.

The worst few days will be after scan as every time the phone rings I get THAT feeling in my tummy and Paul refuses to answer phone .Somehow you never get used to that.In the meantime we seem to go hell for leather thinking and filling in the time with as much as possible .

I have noticed since all this began I am consumed with time .How much time has passed since it began and how much time to wait for scans and how much time to wait for results I completely look at our calendar differently now also ,time between appointments etc . Ok starting to have one of my rambles methinks, so will go and get some work done .Will be thinking about you both .

Love Bell .

Dear Bell,

Goodness I know what you mean about THAT tummy feeling. I had it a few weeks ago when the GP called the house - Chaz had had a blood test and I started thinking terrible things, but in the end he was just following up on some general inquiries I had made re neck dissections.

I am so glad that Paul's pain medications have finally started to have some effect and will be keeping everything crossed for you on Wednesday.

Chaz has put down a deposit on a convertible today and is well pleased so - we have had a good couple of days.

I will have to keep thoughts on time until my next post as my battery is about to run out.

Take care,

Cathy

I am still feeling poo and can't wait to see my gp next week. My upper arms and shoulders feel like they are going to fall off. I still find sleeping at night a real problem and I have to admit that my diet is shocking. Then again, when you have very little taste and practically no saliva, eating is a chore and I use any excuse not to. It doesn't help that I live on my own and so don't have anyone to nag me to eat...not that that would work!

quote:

Jhonethan

Good god! Go away.

Idiot.