Hello again, I've just come across your suggestion, there are a couple of questions I need to ask so I'll try them. In the end having heard nothing I wrote an email to our GP using the 'Repeat Prescription' address! It was desperate I know and the person who read it may have thought me bonkers but it got the response I asked for-the date of the two scans! Phil has a ct scan next Wednesday and an MRI on the 21st

We are both shrinking, all this worry and secrecy has changed our posture I'm sure of it. I keep crying all the time even as I'm writing. I'm looking too far ahead worrying about financial matters if Phil cant work and if I need to stay home to care for him! How to get positive?

Sue x

Hi Sue

So what if they did think you are bonkers - it got a result didn't it   It's good to have dates for things isn't it.  You know you are in the system and it's working.  I wish you the very best for Wednesday's CT and the MRI.  Ian had a CT last Wednesday and we get the result tomorrow morning.  A lot hinges on this CT

Boy, oh boy, I think I'm the wrong person to ask about "positive."  I loathe and deplore the word.  If I had a hundred dollars for every time I was told by people who hadn't been through the cancer/cancer carer ringer that if Ian and I would just be positive he would be cured I would have enough to pay the the Avastin treatment he is having privately at $NZ5000 every three weeks - give you some idea how many times that positive word was used on either or both of us????

I am sure you are still in shock.  I know I was.  People imagine you are shocked to get the diagnosis but then you deal with it.  Looking back I think I was in shock for weeks, if not months.  As things got worse there seemed no respite from bad news so the shock is hardly going to wear off is it when we keep having to rejig our coping mechanisms.  One morning I was just so frightened for Ian and so scared about a life without my darling man that I just broke down in the shower and bellowed like a wounded animal.  Ian and our cat came running and stared through the glass door at me like I was some sort of zoo specimen   But I felt better afterward!!  I read in a Coping with Cancer book that crying is physically good for us - it releases the stress hormones - so when I need a cry (and even now - especially now remission is over) I do cry - but I am careful to buy waterproof mascara - no need to advertise to the world that I'm having a tough day.

Your situation is so much more difficult I believe because you are keeping this from your kids at present.  I read in the same Coping with Cancer book that people pick up the vibes and maybe jump to the conclusion you two aren't getting on, having marital or financial problems or something.  So I hope you are both good actors or I suspect your kids will be suspecting something awful is up.  But I can understand you want to tell them once you know the full picture.  Sad thing is sometimes you don't get the full picture for months, as treatment goes along, and the cancer is beaten into submission/remission or not.

The financial side of suffering from cancer just complicates things doesn't it?  When we went into business 20yrs ago we took out income protection insurance and had paid heaven knows how many thousands.  The premiums had got difficult to manage and wouldn't you know it, just 12 months before Ian was diagnosed with bowel cancer, I changed the policy to 3 months stand down   I know I'm blonde - but really!!!!  So we had a very touch four months (because the first payment was paid in arrears - don't you just love insurance companies!) and the benefit was only 75% of Ian's previous annual income.  Even with that benefit we had a tough time for many months. 

I submitted another claim form with huge trepidation last July when remission ended - I was sure the insurance company would say - one claim only for bowel cancer - go away!!  But they didn't and though just 75% isn't great we are grateful for what we can get.

The Avastin has put a spoke in our financial works but as far as I am concerned Ian's life insurance will be paid sooner rather than later so we're borrowing from the bank to pay for the Avastin to keep him going for as long as possible and they'll be repaid eventually.  The hardest part about Avastin is that it can continue after the chemo finishes and as the oncologist warned it can lead to huge problems because when do you stop?  When the bank says you can't borrow any more?  When you're bankrupt?  It goes without saying that while the Avastin may keep Ian well for longer than just chemo alone, we won't be able to afford to do the things we adored together, like the travel we enjoyed during his remission, because we can't afford drugs/groceries and travel. 

But then wouldn't that be great - for Ian to live to a much riper old age (though bored to death, staying at home day-in, day-out with his boring old wife....)

So I still haven't addressed the "positive" thing.  I'm not sure.  Snatch light-hearted moments, singly or together, when you can - black humor works a treat in our house.  Take any victory (no matter how small).  Do things together that you always enjoyed whenever you can - a walk together, a coffee together (in someone else's cafe ).  Make the best of good moments together.  Take hugs when they are offered.  Make a list of things you enjoy, singly/together, known in our house as the Bliss List as suggested by our hospital social worker and do something on that list every chance you get - doesn't have to be expensive - just something that makes your hearts sing for a few minutes or hours.

All I ever did (and am still doing) was find a way to cope with what each day brings - good or bad - and to try not to let the highs or the lows get too extreme.  You are on a huge rollercoaster ride now and there's probably no getting off.  We just have to hold on tight, shut our eyes sometimes, and maybe (like me in the shower!) scream sometimes.

Does this help?????????????

Lorraine

Hi again Sue

Don't know why the site has bleeped me at the end of the posting.  I'm pretty sure I typed "Enjoy light hearted moments..." but I got *****-ed.  Goodness me - and me such a woman of high moral fibre

Lorraine

Steve I am so very sorry to hear about your dad.. My dad was diagnosed with lung cancer about 4 weeks ago and mum with breast cancer less than 6 weeks ago.. This disease is terrible for everyone.. You have all the support you need from this site, I am really sorry and hope your poor dad gets some relief very soon. Lik you I never want to lose my dad no matter what, I am so not ready to lose him and I can;t imagine you are either.. My thoughts and prayers are with you all XXX

That's quite an amazing response Lorraine, thanks ever so much, it's quite clear you are a commando! I'll take it all on board and I'll keep you informed. Today it was very sunny, Phil won a game of golf and did some gardening, we even had some rumpy pumpy. I told him it was difficult to believe he was ill. He agreed it was strange. I worry that the treatment will change all that!

Kind regards, Sue x

I'm wondering how it's gone today, you mentioned that you were expecting results, I hope it's not bad news. x

Hi Sue - a quick post before we leave for the hour's journey to hospital for Ian's chemo.  Commando - me? - I haven't been commando since I was being potty-trained

I'm afraid it was bad news.  8 1/2mths of chemo has just left the tumors "stable."  Richard was happy (and encouraging) to do today's and the three more, and the 280 chemo tablets waiting with Ian's name on them and one more Avastin.  But he sees no point in continuing the Avastin at the huge cost for us (and little benefit to Ian).

So if I thought the journey had been sometimes scary, sometimes fun (I'm talking holidays here!), we're now charting unplotted (for us) territory here.

But you're only at the start and who knows, your Phil may eclipse Ian's 5yrs 2mths remission, and that would be wonderful.

Keep up the "happy" (you won't find me using the p....tive word) times - fancy golf and rumpy pumpy being on the Bliss List   We are seeing our hospital social worker while chemo is being administered this afternoon.  I will tell her just how much the Bliss List she suggested to us can encompass.

Keep as happy/coping as you can and turn to each other for comfort whenever you get the chance 

Lorraine

thankyou  for giving me advise , i see my nurse on tues to tell me when it all begins does everyone have the same packege of treatment in our case or am i looking to deep ,i tend to wait till the day to find out then think neg  i,m scared to ask how long peoples chemo lasts as i think i,ve got more ,will i def lose my hair.when you feel ill with the chemo do you lie down and let it work or do you find the strenth to make yourself not give in or do you not have the choice

Horrid for both of you in equal parts I imagine. I hope you manage to retain your obvious good sense of humour and your undoubted strength of character. What a good person you are to still want to engage with others at this time. I think I might become quite bitter and twisted if Phils journey is half as harrowing. Today was his MRI scan, again no communication so I said lets go back to the dept where the tumor was discovered, within half an hour a nurse had fetched the doctor and they told us the biopsy confirmed malignancy but the CT scan looks favourable at a glance meaning no metastasis yet. As we left the nurse said she would ring Phil within 48hrs with other answers, and their plan of action.

I hope the weather isn't too bad there for you.

Kind regards, Sue x

Thank you for your nice comments Sue - but honestly, I can do "bitter and twisted" too, have done on numerous occasions but have so far struggled and succeeded in shutting out the stuff or people I am bitter about - don't know if that will work as time goes on   Three of our siblings are causing us enormous stress but enough of that - they are just poor excuses for kind human beings.

H U R R A H - well done you for seeking out a human with some answers - and fabulous that the ugly METS word doesn't look to be in Phil's vocabulary!!!!!!!!!!!!!!!!!!!!!  I guess you will very soon be in a position to tell everyone around you - and if you have good people around you, get some solid, loving support.  YOU GO GIRL!

We have had some dodgy weather after a glorious Indian Summer after a gloomy NZ/British? official summer.  Yesterday we had our frost and our farmlet was crispy and icy.  Our bedroom faces the morning sun so we made porridge topped with chopped bananas and slivered almonds and a big brew of filter coffee and went back to bed.  We sat up watching a morning chat show with the sun streaming into the bedroom and onto our faces, with little native birds swirling around the bird feeders in the garden outside the windows - as happiness-filled as we can get.

Keep well, strong and hug your man often!!!!

Lorraine