What a difference a day (or two) can make to a happy, excited posting.  The discomfort Ian's been feeling in one testicle and his groin became outright pain and is being investigated by ultrasound urgently tomorrow morning.  He is now on an oral morphine and needed three doses to get through the night last night.  The GP is adamant that we should go away for my birthday trip.  It's pretty clear to me it'll be my last birthday shared with Ian and probably our last break away from home together.  The Teflon Two are head-butting reality now..........  I've cried a little bit but I'm pretty shell-shocked really.  We are still going to meet the building company today to look at house plans and I guess Ian's having Erbitux this afternoon (though I haven't asked him yet) - still going through the motions I guess.  My heart's not broken - yet - but I can feel a little crack opening up in it....  and now I am crying so I'd better stop typing and scrub my face and go back to bed and hug Ian.

Dear Lorraine,

I sincerely hope that they find out what's causing this pain and that it is an infection, not a 'new normal.'  And if whatever treatment he needs to deal with the pain needs a few days adjustment then postpone the birthday for a few days.  We had to do that with my birthday this year - the actual day is in February, but my birthday treat didn't happen until the end of March.  And our wedding anniversary (15 September) is still pending. Take care, Expat xx

Hi Lorraine - just read your story.  I hope and pray that the radiation treatment will be a success for Ian.  The poor man has been through so much likewise you too but I have to admire your attitude and humour in all this - good for you and may we all join you in putting two fingers up to cancer - we can and will get through this.

Glad you enjoyed your birthday.  You deserve some happiness

Still keeping you and Ian in my prayers.

Mickied

I am up and awake and worried sick in the middle of the night.  I'd left the computer on and I saw your post.  I guess you mean well, as all religious believers do.  But while you are talking to your God, ask him why he would give a lovely man like Ian terminal cancer.  What do you and your God call "success" with radiation?  A cure? A period of remission?   We (you and I) might "get through this."  Ian will not - he has just weeks to live as far as I can see.  Tonight he was shattered after a 45min journey each way and a 30 min talk with the radiologist.  He took morphine and now he is tossing and turning, sitting up, then lying down.  His hands are cold - just like the time when he was diagnosed and they thought his body was shutting down.  How he will stay well enough to start radiation, let alone endure it I do not know.  Perhaps your God could have brought the consequences of the "mass" growing and pushing aside Ian's kidney and aorta to the attention of the oncologist sooner.

Sorry to sound warped, twisted and bitter - but the one getting the two fingered salute in our house is your God.

Lorraine

Lorraine I am sorry if I offended you in any way I never intended to because that is the last thing I would do to a person who has always offered me valuable advice  I just don't know what words of wisdom to offer you at this difficult time but I fully understand your anger why did he give my father-in-law cancer and then decide to take my father so suddenly alongwith my mother's three brothers within a few years - nobody knows Lorraine or understands.  Suppose when I say keep you in my prayers it is to ask for you to get the strength to cope with the difficult days and weeks that lie ahead.

You don't sound warped or twisted you sound human and very strong to be honest.   I have always said that about you Lorraine.  I really admire you for how you cope with the things you are faced with.

Again I am so sorry if I offended you.

Take care

Mickied

Hi lorraine

I am sorry to hear that Ian is having such a difficult time.You dont sound bitter you have always shown us on here how to walk such a dark path with grace and courage.I know i cannot say anything useful but i wanted to send best wishes and i hope you find what you need to get you through.

emma

Thanks Emma.  I should sound bitter and furious even (rather than angry) because I am both.  I should accept with grace that other people turn to a God neither Ian nor I believe in and spout their mumbo jumbo and mean well.  I am bitter.  I am furious. 

Why was I the only one who bothered to do a bit of research to see what a para-aortic lymphatic mass might "do" once it became swollen.  I knew months ago such a swollen mass would press against the kidney and ureter.  I have watched for signs of this, maybe pain in the kidneys, difficulty passing urine...  I did not share my knowledge with the oncology team or hospice team or GP because I thought they would have made it their business to know as well.  Turns out I was the only one with my "eye on the ball."  And then that groin pain and swollen testicle was a swerve ball (pardon the horrible pun) - I just didn't see the connection - accepted their talk of an "infection" and then their discounting of pain again in just two or three weeks as "pain from the scarring of the infection."  What a crock of ****.  So in the twelve weeks that went by, the mass had free reign.  And I am left feeling that, yet again, I have let Ian down by not "rattling cages" sooner.  When the ultrasound technician was checking Ian's testicle, I piped up and said he had a blah blah "mass" and did she think that was significant.  She went straight to it, identified the problem, measured the mass and reported to the GP.

We've got through the night - me dosed up on a quadruple dose of homeopathic sleep medicine, Ian on oral morphine.  I'm coming to grips to the Newest Normal.  I think Ian must be too because he doesn't seem as desperately low as he did last night.  He refused food last night - first time even in seven years fighting this disease - so he'll be hungry now.  I'd better get him some breakfast.

Thank you for your good wishes Emma.  You are one of those on this site who are "walking the walk and very much entitled to talk the talk."  Support from you means the world to me.

Lorraine

Hi Lorraine

I too am bitter and angry because my so called God decided to shorten my dear father-in-law's life - his cancer has now spread to his stomach and lungs and it could be a matter of time now and I don't think keeping you in my prayers did any harm and to be honest the person i pray to his my father.  I don't pray to God after all he took my father away from me suddenly without any due warning. 

I hope you get the strength to cope with whatever lies ahead of you in the next few weeks.

Take care

Mickied

Hi elkay

I hope that ian managed some breakfast.

My husband plays the role for me that you do for ian.It has been so helpful to me to see it from the other side and i am very aware how lucky ian and i am.

I try not to spend to much anger on the doctors mistakes or the throught that if only i done it differently.It is hard when you are presented with this smooth authouritive face to question it and i think doctors do not always  find it easy to listen.I think it does not help that we want them to say something that we dont want to hear-we want them to be right when they say it is a lesser problem.

I would not usually type this story as it is not going to fill patients with confidence but somtimes i think it would be more useful if we could accept that sometimes doctors are like machanics in that they are trying to fix something that you do not know much about and sometimes they will get it wrong and if you are unlucky you will get a bad one and then it can become dangerous.I had a spectaclar *** up a few years back-After the 4th operation on my face for the av malformation i went home, as usual feeling rough as old boots and then i started to feel worse-stuff was coming from my ear.I rang the doctor and he said that is just an ear ache -go to you gp which i did and then various ent doctors.I did not want to spend christmas in hospital as my daughter was not yet 2.They gave me stuff to put in my ear and said that would be fine.It wasnt-I managed to last untill after Christmas  lunch(the wonders of pain killers) and then the bleeding started.We drove to the ent hospital but they did not know what to do with me and the original London hospital did not want me so they put me in an ambulence to another london hospital-again ent-which could not really do anything except pump me full of antibiotics.After that when they identified the problem -blood poisoning,it cost me my hair,the facial nerves on the left side of my face,months of intervenous antibotics and 6 operations in 6 months and an open head wound and drainage site for 18 months.

I am more inclined to question things now but i still find it hard to listen to what i know rather than what the doctors tell me.

I dont know if it is silly of me to type this story i just wanted to say i know how it feels when it all goes horriably wrong and i know that you will find the strenght you need to see you through these days.

We can be angry if we want- I envy toddlers who can just throw them selves on the floor and howl

Maybe that would be a good fund raiser-a sponsered tantrum

My daughter wants the computer back so i will stop meandering on

best wishes

emma

Emma, thank you so much for your post.  And of course it resonates with me - I am married to a truck mechanic after all!!!  In our very first dealings with his oncologist he said he didn't really know what approach to take for the lung mets tumor and he was going to consult with his peers here and overseas.  Ian was very impressed with that.  He never felt that he was such a good mechanic that he "knew it all" and he respected a man who would admit he needed advice and guidance and some other opinions.

Your experience was appalling - there's no other word for it.  I can't believe that we as humans can get it so wrong from time to time (hopefully no more often than that) and other people pay such huge prices for our **** ups.

I have spent many stressful minutes ('cos let's face it we don't get more than a few minutes at the feet of the oncologists do we hahaha) biting my tongue and swallowing my pride so I don't undermine the relationship between Ian and his oncologist.  I am so disappointed that his GP would assume groin pain and a swollen testicle was an infection out of nowhere, when Ian had been under her care for palliative treatment since June.  I guess she (and the oncologist) will know next time for the next person....

One thing that dulls my anger (for now I guess) is knowing Ian IS dying - nothing they botch up changes that, nothing they do well changes that.  He will die in the next few months - it's just that every month/week/day that was "extra" to what was predicted was so incredibly precious.  To think even one day might have been robbed from us makes me weep.

Why does it take something like cancer to show us how much we value our loved ones?????????????????????

I think Cancer Research UK and the Cancer Society New Zealand need to throw themselves behind your wonderful idea for a fund raiser -

     SPONSORED TANTRUMS INTERNATIONAL!!!

Better get cracking.  Ian did get his appetite back but has found that the "mass" isn't leaving much room for a full stomach so he's eating little and often - he's my own special little baby bird - every time I go past I have to drop in a tasty morsel of worms

Thanks Emma - if I remember right, a while back you posted to me that I'd helped you get some balance back - today you've returned the favour.  Bless you!!!!

Lorraine

Lorraine, I'm so sorry to hear the whole story about what has gone on since your birthday. You told me a few weeks ago about the what if's and not questioning things sooner that it's ok to be angry. so rage, rage as hard as you can, you are an excellent carer and I doubt any of us would see you go out without both barrels blazing. The future is frightening and the realization that Ian won't be there is unbearable. It seems so many (the insurance lady, the doctors) have already "written him off" but he is still here! He is with you right now, so go to him. Sit with him, wrap your arms around him and inhale him. Hold on for as long as that b*st*rd of mass will let you. We don't matter right now, Ian & you are what matters. Take care. Kristina

Hi Lorraine

Just to say that I am so sorry for what you and Ian are having to go through, I know I'm stating the blindingly obvious when I say that life is just so frustratingly unfair (now there's an understatement). I wish I had wise words to offer,  but I don't, but just wanted to let you know that I am thinking of you, a lot.

Vikki

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Hi Lorraine

Just to say that I am so sorry for what you and Ian are having to go through, I know I'm stating the blindingly obvious when I say that life is just so frustratingly unfair (now there's an understatement). I wish I had wise words to offer,  but I don't, but just wanted to let you know that I am thinking of you, a lot.

Vikki

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