Cancer Research UK main site

I hoped I would never post this discussion

elkay
Offline

Yesterday we got the news we never wanted to hear.  My friends on this site know about my husband's 6+ year battle with colon cancer that had spread into his lungs by the time it was diagnosed.  The oncologist was sure Ian's first bludgeoning with Oxalyplatin IV chemo and Xeloda (5FU) chemo tablets would buy him 1-2yrs remission.  Ian dug deep and slowly got better and stronger and went back to his hard physical job as a truck mechanic and we went back to our "normal" lives together knowing that time was precious. 

My friends on this site have (no doubt) got sick of hearing about the wonderful times we had together in that remission that was so hard fought for.  I think I have convinced Newbie that yes, it is all worth it.  It's such a cruel battle but remission is so sweet, extra sweet when it is for so long as Ian's was.  It is so cruel that lots of people who have just as much to live for are denied such a long remission. 

5yrs 2mths after Ian went into remission abdominal pain and rising tumor markers prodded the system into action again.  On 30th August last year Ian began the Oxalyplatin/Xeloda combo again which ended on 23rd December with the news it wasn't working this time and the dozen or more tumors being measured were just getting bigger and bigger.  Between chemo regimes we snuck in a trip to celebrate our 35th wedding anniversary - no cancer was going to spoil that lovely five day trip.  Then on 22nd February Ian began Irinotecan chemo and we started paying for Avastin because it isn't publicly funded in New Zealand.  With each round of treatment Ian has got steadily more beaten by side-effects but in the week between chemos early this month we again thumbed our noses at cancer and flew to beautiful Queenstown in New Zealand's South Island and to celebrate Ian's 61st birthday we chartered a helicopter and flew over our stunning countryside and picniced high on a mountain top.

But the oncologist said three weeks ago that the Irinotecan must end - that it was, and I quote, expensive and making Ian ill.  He said the Avastin that we were paying for must also end.  And so we walked out of the chemo day ward on 13th June dreading what was to come.  In the days that followed Ian was desperately low, a combination I think of side-effects and the knowledge that active treatment was coming to an end.  After three days without a shower, shave, or dressing let alone much food he dragged himself out of bed, back into daily life again. 

Ian had the scheduled end-of-treatment CT scan on Friday and yesterday we went to the follow-up clinic to get the result.  We were told gently but firmly there was no more publicly-funded treatment available to Ian that would work.  We were (for the first time) shown the actual CT images, taking a virtual flight through Ian's body, flying past all the horrible, dreaded cancer tumors in his lungs, hovering over the collection of lymph nodes in his abdomen that are fat and swollen with cancer cells waiting to "get at" his liver which at the moment is amazingly clear.  People on this site had talked on seeing such images and we had never been given the opportunity.  How ironic that on the day the New Zealand hospital system ditched Ian (because that is what they did yesterday) we got to see those fascinating, horrible images.

Now Ian has been officially referred to the regional hospice.  We are lucky that one of the social workers there was Ian's social worker for 5+ years at the hospital so she knows many of the problems we have faced during this fight.  But it's still a very scary "line in the sand" time for us.

My brain has known since May 2006 that this time would come - my heart had it's ears and eyes covered...

Does anyone have any advice or help for me?????  I've dished out advice and hope and comfort willingly in the four months or so I've been here on this wonderful site.  I'm a giver, that's my nature.  Now I want to be a taker for once.

  • Offline in reply to elkay

    Hi Lorr,

    I guess you noticed what a strange shape The Gambia makes as a country?

    Rumour has it that the Brits sent a gunboat up-river as far as it could navigate. Every now and again they fired a cannon to the portside and to starboard. Where the cannonballs landed marked the northern and southern  borders of the country. When they couldn't navigate any further they fired a cannon from the bow of the gunboat. That marked the eastern border of the country. Regardless of the ancient African Empires, tribal groupings, culture, geographical features or anything that might usually define a country the Brits just claimed themselves a river and enough surrounding land (as much as they could hope to defend) to give them acess to the inland products of Africa. Sadly, a major "product" at the time was slave labour. The French held on to Senegal, which completely surrounds The Gambia (apart from the Atlantic Ocean).

    Often Gambian people would ask me where I was from, when I said "England" they would say "Oh...our old colonial masters". They seemed to be saying it affectionately but it stuck in my throat to say "yes". I would say "My old baronial masters built colonies here when my ancestors refused to be slaves anymore." Some Gambians seemed to relate to that.

    I gathered but didn't actually see expat's news. I'll try to catch up with her after this. Isn't it terrible that we all live with this inevitable sorrow in the future, mingled with the inevitable relief that the person we care about is no longer suffering? Jan is well at the moment but she's not the energetic go-getting Jan that I married. Sometimes the old Jan emerges but mostly she's reduced from her old self. Like you, I cherish the moments when she's able to be her old self. Like you, I ache when she's debilitated.

    When/if the little beast comes back Jan will have a whole new set of challenges. I sometimes wish I had somebody to pray to to help us through those challenges. Bit late to go running to "God" at this point though. 

    I feel empathy for your casual nurse at the hospice. As an agency nurse I once spent an entire shift (eight hours) working with an elderly lady who spoke only Cantonese. She had had a fall and had to be escorted to the Accident and Emergency Unit at the local hospital. I don't speak Cantonese. She suffered from bi-polar affective disorder (manic depression). She was incapable of walking and wasn't aware of the fact. Every time she tried to walk somewhere I would assist her but neither she nor I knew where she wanted to go and she would start to fall and need me to help her back to her chair.

    When she had been treated (broken wrist, needed a cast) I arranged an ambulance to take us back to the psychiatric ward. I saw her back to her bed and went to write up my notes for the day in her file. In her file was a collection of laminated sheets with maybe 50 key words (food, drink, toilet, hurts) in cantonese, with cantonese calligraphy for the patient and pronunciation guides for english speakers (ie Tea-soo) which means (If I remember correctly) "I'm thirsty". Nobody on the ward had thought to let me have these sheets, they existed only to prove that the hospital was sensitive to ethnicity issues. This couldn't be proved if the sheets were actualy being used by a nurse to communicate with the patient, the sheets had to stay on the patient's file as evidence.

    I don't know why this happens, but casual and agency nurses, the world over, are not given the tools or the guidance to do their jobs properly. This is not to say that permanent nurses actually bother to do their jobs properly. None of the permanent staff on this psychiatric ward used the communication chart either.

    As you have become aware carers rank only slightly above parasitic infestations in the hospital hierarchy of importance. Nobody told you there were mattresses available? Just be grateful they didn't try to eradicate you with some spray or other.

    Yeah, one day at a time, and be glad for any Good memories that each day brings.

    Thinking of you both
    Russ

  • Offline in reply to Newbie

    Poor Gambia - just another asset seized by an expanding Empire!!  On our first flight to the UK in 1989 we were joined in our row of three seats from Abu Dhabi by an oil rig engineer from Wales.  He warned us that if we went to either Wales or France at all, we must make it very clear that we weren't English - then we'd get a better welcome.  We did a day trip to Bolougne by the old hovercraft service and we made sure our Kiwi accents were very strong that day - and were warmly welcomed 

    Today is the third in a row of awful days.  Ian went to bed on Wednesday night and wouldn't get out again from then, other than to go to the toilet.  He also had three days of constipation.  He was tired, apathetic and flatly refused to dig deep for the energy to get up and shower.  When the public nurse came to our home yesterday I took her aside to brief her and gave her a few minutes with Ian alone.  She offered suppositories and assistance to shower the next day (today).  There is enough independence still left in Ian that he had a bowel motion within ten minutes of her leaving (followed very thoroughly by three more during the day) and this morning he let me coax him into the shower for me to shower him while I had my own shower.  A bit bizaare I guess - but a means to an end.  Then I asked a neighbour to help me put a spare single bed in the lounge so that Ian could lie (and snooze if he wanted) but be engaged in my day (and vice versa).  There is so much for me to do these days and I hate leaving him alone down the hallway in the bedroom with just his thoughts and regrets for company.  There is a very real risk of blot clot and I like to keep an eye on Ian for any sign of distress and definitely to be within earshot in case he should ask for help.  That strategy seemed to work well but at lunchtime the violent unproductive retching returned followed by an afternoon of sleep and then full-on vomitting at 6pm.  Each time I rang the hospice for advice and reassurance (mainly so I don't get lectured for not keeping them in the picture).  Ian's palliative care co-ordinator declared on Thursday that his blood calcium had lowered from 2.9 to an acceptable top-of-the-range of 2.6.  I suspect that isn't acceptable at all.  My research on the internet suggests that some people are within the range but display alarming side-effects, e.g. nausea and constipation.  Ian's situation will be reviewed by doctors and nurses on Monday.  Meantime we have Sunday to get through.  I am at last very focused on updating our Wills and putting the finishing touches to Ian's Advanced Directive.  I anticipate a fight to keep him at home and the Advanced Directive will be my weapon of choice when Ian can no longer speak for himself.  I have shilly-shallied for too long in getting this done and I believe we are fast approaching the end of the journey.  How can I type that calmly - I suspect because it is a very surreal situation and a large part of my brain refuses to accept what my eyes are seeing.  Time for bed.  Ian has the benefit of a double-dose of Nozinan nausea control which will make him very sleepy.  I think my homeopathic sleepdrop remedy will have its work cut out tonight.


  • Offline in reply to elkay

    Hi Elkay

    Do hope you managed some decent sleep and that the new day will not be too challenging for you and Ian. It is a remarkable journey that you are on and your stamina and grit (and an amazing sense of humour in the hardest of situations) is truly emotional to read.  The deep love that comes through in your posts is truly wonderful and I cant begin to imagine how hard it is to keep posting when you must be feeling shattered. It is inspirational and know there are many on this forum who wonder how they will find the inner strength when they are faced with the hardest of battles. Life is  so 'not fair' when such good people are suffering. Sending you virtual hugs and a more peaceful day. Jules

  • Offline in reply to elkay

    Dear Lorraine,

    When I read day three of 3 bad days, all I could think was "sh*ttidy sh*t sh*t". Can't say anything to make it better but think you're coping blimmin marvellously and getting your ducks in a row is a good thing to do.

    Hope Sunday is a day of rest from all things sh*t for you (but hope the sh*t keeps flowing for Ian - no constipation again for him).

    x waterbabe

  • Offline in reply to elkay

    Hi Lorr,

    I don't even know what we should hope for. Would it be better now to have a gentle slide, a sudden fall or an amazing, though temporary, recovery? Any more good days have got to be a positive thing right now, but how many of these ups and downs can even the sturdiest realist amongst us (and I think that means you) take?

    My experience is that it helps a little to know that other people are thinking about your pain. I am.

    The advanced directive stuff is really gutting, I know. Let's not go into the awesome conflicts it brings to any of us. I have no doubt that when/if Ian cannot speak for himself he will have a very assertive advocate.I also know that, however painful it may or not be, to you, you will be upfront about Ian's decisions and not override them with your own.

    You've talked a lot about your journey and you've never pretended that it won't have an end. Maybe you're right and this is the final act. I'm so sorry.

    You've been an inspiration to Janet and I and we shall be willing you on with all our strength to see through this stage of Ian's ilness whether it be the final part or just another dip.

    All our best wishes

    Russ and Jan

  • Offline

    Such a lot of water under the bridge since mid-February when I last posted.  The days and weeks have just combined into one big swirling blob of nothingness...  I was trying to think of an appropriate word - but we just seem to have day after day of just surviving, no more happy times out in the garden with the kittens, very few laughs, and for me hours and hours of chores and hard physical work (for a basically bone-lazy late-middle-aged woman), fetching, carrying, preparing little morsels, chilling gallons of water to try to keep the bone/calcium at bay, dishing out pills and now in the last few days pushing a wheelchair back and forth through the house, running backwards and forwards from the lounge to the loo with a urinal/pisspot, struggling to load the huge wheelchair into the boot of the car, struggling to get it out again....  The physical stuff attached to caring for a loved one at home is endless.  Please don't get me wrong.  I do love Ian still.  But this job is just so very, very hard.  I hardly ever cry now.  I just plod through the day.

    Yesterday I was walking back up toward the house on our crisp, crunchy lawn (we are having a 70 year drought in New Zealand) and one of the kittens popped out of the srhubs.  I lay down on the crunchy lawn in the shade of a tree and two more came to join us.  It felt so deliciously selfish to lie there in the shade doing absolutely nothing for five minutes.  At the carers' course I went to at hospice last year I met a lady of 70+ who said the course was her first two hours off in months.  I did wonder if she was telling porkies.  I now know exactly what she meant - and her so much older than me!!! 

    We have been backward and forward to the hospice several times since I last posted.  Ian is now on a permanent syringe driver delivering anti-nausea and pain-relief very efficiently although most days he needs a break-through tablet of strong pain-relief.  We had a terrifying time at 3am recently when he started vomitting towards me in the bed, though thankfully he had a plastic vomit bag tucked beside his pillow which caught all the vile stuff.  There is a supposedly 24hr public nurse system we can call on.  Call on yes, attend quickly - no!!  We were lucky that that night the nurse who covers approx 200-300sq miles alone from 11pm to 7am had just been to our town and was only ten minutes away on her drive back to her base 30 miles away.  The next night Ian started vomitting again at 9.30pm and when I requested the nurse come to give him another jab in the leg I was told she couldn't come to our town and get back to base within her shift so the next shift would come over.  When the nurse knocked on the door at 12.10am I met her zombie-style at the door and could barely speak with exhaustion.  Welcome to public-health nursing New Zealand-style. 

    So another eight day stay at hospice resulted but the tweaking of the drugs has worked well since.  Thank goodness for our black humour - during our stay at hospice that week most of the occupants died over the weekend.  We kept our room's door well and truly shut and the Grim Reaper passed us by.  Although I thought he had me on his list at one point - with no patients to give supper too, I was actually offered a plate of cakes one night.  I ended up with massive indigestion and did wonder if I was having a heart attack and the Grim Reaper had the wrong half of us on his list!!

    There is a constant battle now with blood/calcium.  As the cancer scuffs off calcium from Ian's spine it accumulates in his blood, causing (for him) jumbled talk, constipation and exhaustion.  This is being monitored by the hospice by blood tests and by eye-balling the patient.  But he doesn't help by being the consumate host when the hospice nurse comes to visit, sitting up, chatting happily.  So I do the "he's actually not very well, he's falling asleep constantly, he's jumbling his words, jumbling people's names...." routine and I could see the nurse didn't believe me.  She did believe the 3.35 reading on the blood result the next day though - not too far off the point where Ian would lapse into an irreversible coma.  So off to the hospice again last Friday for Pamidronate by IV.  Ian's getting nearly four weeks out of each IV - which is wonderful because it is extending his life.  It is expected that it will be less and less effective and the blood/calcium hasn't come down as much this time as the last two times so it's a work in progress.  A newer, better drug is available - Zometa - but it isn't funded by the New Zealand Government and hospice aren't comfortable with charging us the $500.  In an ideal world it would be free - it isn't - so we are happy to pay.  Ironic isn't it - I am finding the job of caring for Ian now a huge one but I am still advocating for him, still rattling cages, still writing out cheques for drugs if it will help.... 

    Tonight was the first night in many nights that I had some time to myself to update this.  I got that "time off" in the grottiest way.  To combat three days' constipation I had the idea of buying Ian dark Stout-type beer.  Ever since his colon operation beer has given him diaorrhea.  So Lorraine's cure for constipation - instead of the tablets and the foul tasting goo - is beer.  So one 330ml bottle later (while I am sound asleep in front of the TV at 8pm after another hot, busy day) Ian wheels himself to the loo and just makes it before a good dose of diaorrhea.  Then I am woken to the sound of him calling for me, wanting me to wheel him 20ft from the bathroom door to the bed and undress him.  I wonder if the public health nurse who comes tomorrow to refill the driver will reward me or scold me??  So while Ian is in bed sleeping off the diaorrhea I have some time to myself.  Ironic eh??

    So we keep on keeping on.  Our "fun trips away from home" now consist of trips to the hospice.  Any suggestions of little drives out to nearby cafes are refused.  Our new house will be started soon, once the plans have been approved by the Council.  I had looked forward to us travelling the 30mls together to potter around the site and nod approvingly or tut-tut....  I think I'll be doing those "inspections" on my own if I can get friends to Ian-sit for me and it will be a miracle if we move into that new house together in four months time.  Our hospice social worker rang today to ask how I was doing.  She caught me as I was scrolling through our many "dining out/yummy meals" photos on the computer because I am going to have a dozen or so printed to put up in the new kitchen to remind me of happy times.  I had just got to a photo of Ian polishing off haggis, tatties and neeps in a snowy Edinburgh in 2009 and I was bawling my eyes out for the first time in weeks.  The weirdest things can find the crack in the armour!!  She has suggested now is the time to implement my plan to increase my home help's days/hours.  It made so much sense and I had even been the one to tell her that's what I would do when things got too much - I just needed reminding.  Maybe with a bit more help - and our crazy Irish home help's wonderful, zany sense of fun - I won't feel so overwhelmed soon.  I hope so......

    Lorraine

  • Offline in reply to elkay

    Hi Lorraine, don't know what time it is there but it's 9.20am here and I'm at work, supposedly doing some work on a spreadsheet but decided to drop in to see you instead, any excuse.  I'm sorry you're having such a rough time, I can hear the exhaustion coming through in your e-mail.  Hold on in there girl you can do it, we're all routing for you!  I know what you mean about looking at photos and bawling over happier times, I often wonder what it will be like to go through photos etc 'afterwards' will it be a comfort or a torture - well I'm sure I will find out one day.  At present everything is plodding along with hubby and me.  Chemo every other week and our lives run around that.  He had an extra couple of weeks off of his chemo over Christmas when his Hickman line blocked up with a blood clot and he had to have it replaced, he was so much like his old self it was amazing! 

    We are expecting another grandchild in April and looking forward to that event.  I don't look too far forward these days, couldn't book  a holiday or anything further than a couple of weeks ahead, just cant do it - I'm a pessimist I just know something would go wrong.  Hubby had a scan a fortnight ago and we're waiting for the results, I try to put it out of my mind and concentrate on other things.  He had an argument with the nurse at the hospital the week after the scan because we have to wait a month for the results of the scan due to the way his appointments fall and he tried to get across to her that it is cruel to make people wait this long for the results but I don't think she understood!

    Well must get on, work to do and bills to pay!  Hang on in there and take comfort from all your friends out here thinking about you.

    XX

    Lyn

  • Offline in reply to elkay

    Hi Lorraine

    Woah; don't even know if you will manage to find the time to read this but am just going to send you virtual hugs and flowers. Your days are full of poop in more ways than one and the struggles are even harder and yet your love for Ian and your humour (black or white) still bounces out of the computer. You sitting on your hard lawn surrounded by the fluffy ones was such a serene moment in an otherwise hectic life that felt there should have been a photo opportunity but then that would have spoilt the moment. Please don't use that selfish word again. It could never be applied to you. I cant even begin to imagine how you managed to cope with these difficult, exhausting days following on from Ian's long cancer battle (your inner strength and bouncebackability ~(think I made this word up) is absolutely astounding to me and no doubt to all those around you. I think you are never in the same place long enough for that Grim Reaper to catch you but on a serious note, take that increased help as soon as possible. You need to have a bit of recuperation time to yourself for the times ahead (even if it is just a glass of something in the next room whilst someone else watches over Ian). Your own sanity depends on it. Often think on how you are doing and guess now I know. Wish I could hold your hand and make you the British answer to all ills, a cup of tea. Take care and hope the drug treatments keep helping Ian for as long as possible. Best wishes Jules

  • Offline in reply to elkay

    Bless you Lorraine!!!

    Just want to pop in to say I hope you get that extra help soon and keep snatching five minutes serenity when you can!! I am amazed at how you and others just keep going. Isn't it funny how when you think you just can't do anymore and have nothing left you still seem to find something in the reserve tank you never knew was there?? I guess the truth is that you just  keep putting one foot infront of the other Lorraine - what else can you do!!!

    I don't know what would become of us without a sense of humour and happier times to hold on too!!! I do hope you get that extra help very soon!!

    Big virtual flowers hugs extra help and free drugs!!! ( the helpful kind that is!!!!)

    Ann

  • Offline in reply to elkay

    Ah Lorraine, take more of those moments with the kittens. I reckon the beer was a good thing - it got those bowels moving didn't it?! Look after yourself and definitely increase that home help.

    Thinking of you

    x waterbabe

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.