A quick hello to all my mates - very briefly, thanks for your posts.  Ian is shattered and has headed for bed and I'll join him in a moment.  We have talked and talked and he is so sad and sorry that he let me down.  But wouldn't you know it, as soon as we were "OK" again, it was sort of "OK, now it's all about me again, I have actually been constipated since Friday and I need you to sort this for me."  I flipped again (briefly) because that was slotting me back into the role the hospital would have me play - relief nurse and general dogsbody.  I made him ring the hospice for advice and once again did my research (for constipation prevention this time) and threw out all the stupid pamphlets radiation had given us for diaorrhea.  Actually thinking about it, they probably hadn't even read their own questionnaire stating Ian's on morphine 24hrs a day and therefore 50% likely to be plagued by constipation.  Surprise, surprise!!

So we are both OK again - with ourselves and with each other - but I will not allow myself to be in a position like that again and when Ian has finished his radiation I will be making a formal complaint to the hospital.  I read the Patients' Rights form today.  Right 8 says so long as everyone would be safe, it is appropriate for a supporter or caregiver to be with the patient.  I note, with irony, that the form is about Patients' Rights.   WHO CARES ABOUT THE CARERS HAHAHA!

A cool, dismal, rainy day today - spring, what spring?  So no little side jaunt and Me Time sitting on a picnic table at the local duck pond.  A good thing too, I suspect, because people will be starting to talk about the Mad Woman in the Yellow BMW who comes to weep and feed the ducks every day

Night night from NZ y'all!!!

Just looked in at this thread. So sorry you having such a difficult time with everything. Life is such a *** sometimes and I do hope they start listening to your need as well as Ian's. ITs hard enough coping without this added anguish. We too have a local duck pond (but its my legs that take me there as I dont drive!). If ducks could talk .............!! In our moments of ranting followed by our efforts to be calm and cope throwing the bread seems so normal. Take care everyone.Jules54

Funny you should say "Cut yourself some slack" Vikki.  Our social worker has said the very same thing to me several times in the past.  P'raps it's time I started listening to other people's advice eh??? 

I would love to be talking about all the last few days have brought us to our social worker - but wouldn't you know it, our ravving about the gorgeousness of cruise travel hit its mark and she and her husband and little girl are cruising in the Pacific Ocean as I type.  It's so crazy that every time Ian and I have huge issues, Andrea is somewhere exotic - does she have radar for tough times ahead hahahaha!!  Last year when the Cancer Support Nurse on the chemo dayward told Ian "he was dying and he might like to cease chemo and enjoy his last days in relative good health" we needed Andrea badly to put that advice in perspective - and she was in Nigeria at a friends wedding   Now, she's floating about the Pacific, sipping cocktails and playing deck quiots   I don't know - staff!!!! Hahahaha.

I am up and dressed and ready to drive Ian 30 miles to radiation.  But I am adamant I will not go to the waiting room with him.  From arrival to departure is only 15 minutes anyway and I have better things to occupy me than obey the nurses instructions last week to Ian "to leave your valuables with your wife." Do I look like a rotweiller?? No - don't answer that!!!!

By complete spooky synchronicity, just as I had given up finding a home in the suburb of my choice, facing the North for maximum sunshine and outdoor privacy, built in brick - not plaster (one of Ian's pet hates with NZ's problems with "leaky" plaster homes), without interior guttering (another of Ian's bugbears), with enough lawn and deck to keep the cats occupied, a bit of raised veg garden to keep me off the streets, within walking distance of a little shopping centre, on a bus route, I found THE HOUSE.  When I did my "hissy fit" on Saturday and went to the duck pond I bought a newspaper and was flicking through the real estate pages.  KAPOW!! There it was - the house I can picture myself living in for years to come, in "my" suburb, close to (but not suffocated by) the city with cinemas, cafes, big library, amateur theatre and maybe the better chance of a part-time job than our tiny little town with so many people who turn their back on me knowing Ian is dying.

So I will drop Ian at the hospital and drive to the real estate agent - praying to the Angel of Real Estate that the house hasn't sold.  I will get an information pack and make a tentative booking for a viewing tomorrow after radiation.  If all went well, we can divide our time between both houses.  When Ian gets really sick we would be just minutes from the hospice in the "new" house which would be so much better than being 40 minutes away.  And best of all, we would have some history together in my new home.

Could something be going right for a change......................?

Lorraine

Hi Elkay,  So pleased you've managed to talk and things are looking up,   sounds very strange looking for a house facing North, but then we had hail and ice outside the back door last Saturday and your coming in to cool down.....   Really hope the house works out it will  give Ian some re-assurance knowing your sorting things again!  In your own way of-course.  Going off on one give us time to re-focus, thank goodness for ducks.

How much do they pay social workers down in your neck of the woods, must be better than here.

take care, gardenlady.

Hi Lorraine,

Hope the house hunting is going well and more than that that the radiotherapy is becoming more or less routine.  Moving in the middle of all the rest that's going on seems both crazy and a good idea so all the best with that!

Expat x

Hahaha Expat

Took my eye off the ball real-estate-wise!!  The gorgeous house that was so "very me and Ian" was listed two weeks ago and some expat Kiwis coming home from Australia with lots of valuable Ozzie dollars recognised a great buy when they saw one.  They had a contract on the place when I enquired on Monday and went unconditional yesterday booohoooo.  The agent I spoke to took us to a lovely home yesterday on a back section, so claustrophobic with houses out every window and I swear I'd have topped myself within a month of living there on my own   She saw our reactions to it and swears she won't waste our time again - we need "big sky" if not actual long distance views after having views 15 miles to the east and 5 miles to the west.  She's got two houses coming onto the market in the next ten days or so but they will have to be gorgeouser than "the house we lost to tempt us to pack and move."

Yes, radiation is the New Normal and quite routine now.  Today was the first time I waited in the waiting room for Ian - I usually go for a coffee or something - but a friend drove us over today to save me doing so and it would have looked odd if I'd not accompanied Ian in.  The obnoxious nurse wasn't at radiation so I didn't run into her. 

After we had "reconciled" Ian offered to request a viewing of the radiation suite for me.  I pointed out I didn't need to see it now.  Going with him to the door and getting a picture in my head of where he would be was just part of my coping mechanism on that first day - especially as no-one had told us it wouldn't be painful.  Seems silly now, but we were both too scared to ask if it would hurt.  It was only as the nurse walked into her protected area that she said "This won't hurt."  You can imagine the flood of relief for Ian - and me when he told me 10 minutes later....

Today was No5 - half way through - and it seems to be helping as Ian doesn't limp any more and he can raise his left leg up high without pain.  He's still on morphine - two long acting tablets twice a day now rather than elixor - but he's cut out the paracetemol without any return of pain.  The word "discomfort" is no longer in our vocabulary - he can see how it put everyone off the scent and they all thought he was happily pain-free!!!!!!!

How's things for yourselves - did that postponed chemo get underway????

Lorraine

Hi Lorraine,

It seems things are sort of trundling along for you two.  I know nothing about radiotherapy really except that it can cause fatigue but I hope that it achieves what the team are looking for.  And let's hope that estate agent really has understood what you're looking for.  We were lucky with our current house in the UK - we were renting where we needed to buy and I saw a 'For Sale' sign in front of a lovely house when we'd been there a couple of weeks and had just about started looking.  The sign had just gone up; we were the first to view, it was the ONLY house we viewed, and we managed to buy it!  Hope you have such luck with these new properties.

The postponed chemo eventually went ahead last Wednesday rather than Tuesday; I gave all the Neupogen injections, but on the Tuesday the nausea/throwing up was too much to get to the hospital.  Wednesday was unfortunately a bit chaotic - the Oncology unit was organising a conference over the weekend and was going to be closed on Thursday, so there were patients everywhere, my husband's oncologist doesn't have a clinic that day but was on the wards... blood tests went ahead and were good, the chemo went ahead, but between them Doctor and husband both FORGOT about any prescription medications.  So that is still to sort out. And must be done today as tomorrow is a public holiday and then it's the weekend again. Meanwhile Avastin nosebleeds have started with a vengeance so I need to make sure I keep the red and other dark shirts in circulation, and the red pillowcases on his side of the bed.  Less alarming to look at when you wake up in the morning... you get my drift.

I booked tickets to England for Christmas but I can't work out whether it's a terrific idea (the cold! the risk of infection! the jet-lag!) but husband wants to go.  This is the man who these days feels he can't leave the flat for much, not even an evening out with friends, because of the diarrhoea and (increasingly) nosebleeds as well as fatigue.

So that's how we are.  You did ask...

Take care, have some fun and some hugs,

Expat

Hi Expat,

I was just checking-in and clocked your post.

I'm sorry to hear that you're both now coping with so many obvious symptoms as well as the underlying illness and it's treatments.

If your husband wants to visit the UK in December, there's little, short of a full psychiatric assessment to have him declared mentally incompetent, that you can do!

I guess none of us ever know what it's sensible to wish for each other. Obviously "hope he gets better" is crass and stupid. "Hope you cope" puts a burden on you. I'll just settle for wishing you the best possible.

Russ

Hi Russ,

Thanks for your wishes.  We lurch along - I go to work and to choir and keep things going on the domestic front and my husband spends most of his time at home.  The last lot of chemo (should have been last Thursday) was postponed because of poor blood count and this time they tried a blood transfusion; we will see whether the effects last until Thursday this week. The flight booking is still 'live' though... and at this stage if we changed our plans it wouldn't be easy to get our 3 children to come here instead.  We shall see.

I hope Jan is doing well. And your alotment still lookes like an alotment rather than resembing a swamp.  And Lorraine, I hope Ian is doing well too. Good luck with your house plans!

Expat

And so we are, a month on from my last post... Our cancer roller-coaster is now a cancer bungee-jump, on an almost daily basis!!  All the bad days overwhelm the good ones and I can't remember what happened from one day to the next but I'll try with the help of the Cancer Diary which has proved its worth again and again when my mushy brain won't co-operate....

I last posted on 14th November early into the ten days' radiation.  Ian was too ill on Day 7 to even contemplate getting out of bed, let alone being driven 30 miles for radiation.  He had been put on Domperidone to combat the side-effect of nausea and vomitting (and much later it turned out he was allergic to Domperidone - so needless to say Ian got steadily more ill).  He was well enough after three days in bed to start radiation again - and even to come with me for my second viewing of a home in Palmerston North - but he hated it!!!!  He continued with the radiation until the ten days treatment was complete but we had an upsetting "discharge interview" when the nurse absolutely refused a follow-up CT scan even though the radiation oncologist had promised one when we spoke to him early November.  She grudingly agreed to making an appointment for us to "discuss the possibility" of a CT scan with the radiation oncologist early in January.  We had been told by several people "in the know" that the internal swelling from the radiation would make an earlier CT pointless, so we withdrew with the intention of fighting another day.

The first day post-radiation Ian felt nauseous.  I told the hospice nurse and she again pushed Domperidone.  Scarily she also demanded to know who had put Ian on the 12hrly long-acting M-ESLON morphine.  Duuuhhh!!??!!  She had!! That inspires great confidence in the woman's ability and the hospice's record system doesn't it?  That night Ian vomitted but radiation staff had said this was normal so we took them at their word.  Ian vomitted violently on Saturday night (just 30 mins after taking the Domperidone that he was still being made to take).

But things got really bad on Sunday with sudden, violent retching spasms that racked his body - and just a tablespoon or two or phlegmy-type mucus stuff - even though he may have even only a little while before.

We had had enough by Monday morning.  I rang everyone involved in Ian's care.  Radiation Oncology changed their stance from "vomitting is normal" to "your husband must have food poisoning."  The GP wasn't able to return my call till much later.  The hospice nurse said "Put Ian in the car and drive him 30 miles to the hospice."  Ian flatly refused to get out of bed.  So the hospice nurse had to drive the 30 miles herself to visit and tried to coax Ian into sitting in the car, telling me I could drive at maybe 30 or 40mph, who cares how much traffic built up behind me.  Ian still refused to get out of bed.  So she jabbed him in the arm with a sub-cut anti-nausea drug and called an ambulance (to be paid for by us).  (Incidentally if it had been an emergency trip to a hospital it would have been $NZ60 - because it was a "pre-arranged transfer to a hospice" we've been billed $220 - thanks we needed that ).

The hospice nurse told me to pack a bag for one night and departed.  The ambulance arrived 3 or 4 mins later and Ian hobbled out to then lie down.  I did a head count of cats (to make sure none were stowaways onboard the ambulance) and off we went.  Have any of you travel as a carer in an ambulance with soft suspension?  It was me who needed a nausea jab by the time we'd travelled 30 miles on a winding road

Ian was transferred to a room and there was a discussion between the senior nurse, the senior social worker, the ambulance driver and Ian and me as to whether this was an emergency transfer ($60) or a transfer ($400).  We all agreed it was an emergency (hahaha).  I have since found out the local Cancer Society field officer has had this discussion with the senior social worker and begged her to warn people of the size of the ambulance bill - but clearly the hospice don't want to upset people - just let them find out when the postman comes calling

A palliative oncologist arrived soon after.  She asked about the days leading up to Ian's admission and proceeded to scold me for letting him get so ill without telling them.  The fact the hospice nurse had rung three days before and been told about the vomitting was completely overlooked.  Then Ian told her about wanting a follow-up CT scan to see if the "mass" had been dealt to.  She very politely and firmly told him a CT was out of the question.  The role of the hospice was not to intervene or do testing - their role was to dish out symptom/pain control.  We were both very, very angry.  I asked how long they had specialised in euthanasia?  That didn't go down well!!  I pointed out that under the hospice's watch the lymph node mass in Ian's abdomen had grown to 14x10cm and it was only because I had rattled the GP's cage and then she had rattled the hospital oncologist's cage that it had suddenly been decided radiation might be appropriate.  Heaven knows how much more brutal the radiation had to be to deal with a 14x10cm mass than if it had been zapped when it was, say, 2x2cm back in August 2011.  The meeting was not going quite how she had planned and it was concluded.  She suggested it might be better if we talked with another oncologist who might be able to explain their approach better.  You're right there lady!!!

We had a long talk with the social worker who has "walked beside us" for six of the seven year battle.  She organised a Family Meeting two days later when Ian was feeling a little better and was up and dressed.  Ian and I were outnumbered by two social workers, one palliative care nurse and the head oncologist.   He asked me for my take on things and I refused to speak.  I told him I was sick to death of the whole random, crashing from one crisis to another cancer journey.  I was sick of people telling us what we wanted to hear and then refusing to follow through (e.g. the CT).  I was sick of being carer 24/7/365 until things went wrong and then being blamed because they did go wrong.  I was angry Ian had been bullied into increasing a drug that he was allergic to.  I said I despised them for just wanting to increase Ian's pain relief to ease his death instead of doing what they could to make his life a little longer and a little more pleasant.  In fact I suggested he was running Euthanasia Central.  Another meeting that wasn't going well.....  I then said I was going to shut up, I wanted no further part, but I would stay in the room to support Ian.  He then blew me away by speaking up for himself.  He was wonderful, utterly stressed but all the more powerful for his struggle to get across his frustration and anger and desperate desire to keep living with reasonable quality of life for a few more months at least.

The oncologist was, I think, actually shocked at how we perceived their actions.  He stressed that less morphine than ever is used these days to treat pain; that the administration of morphine that we saw for Ian's Mum just four hours before she died in 2000 wouldn't have killed her even though the staff had told us "it would hurry up her death."  He wants us to trust the hospice and he is prepared to intervene if that's possible to slow the disease or to be frank and honest and open with us if he can't.   He has agreed to a CT scan mid-January with an appointment four days later to get a result.  We appreciate the olive leaf/CT.

I won't go into our ten days' experience of the "home away from home" that the hospice is supposed to be.  Suffice to say we don't think it is a home away from home.  I guess it suits lots of people.  I guess when you are dying and your loved ones can't cope at home it's the place to be.  But Ian wasn't dying, just really sick, and it just felt to us like a hospital without uniforms that had carpet on the corridor floor.  Some staff were lovely.  Some were cold-hearted bullies.  One grudingly allowed me to sleep on a mattress for the first night but wanted me to go home the next day.  When I pointed out I had come in the ambulance, she suggested I walk.  I told her we lived 30 miles away!!  That night I was sitting in the uncomfortable visitors chair beside Ian's bed.  We were holding hands and were both upset.  The late shift nurse came in, asked us what was the problem and we spilled our guts.  I told her normally when we were scared and upset I would just lie with Ian in my arms and stroke his back.  Here I was sitting stiff and starchy beside his bed, pathetically grateful to be allowed to hold his hand and sleep on the floor at the foot of his bed.  That lovely, kind, caring woman announced there was a spare bed and she immediately parked it beside Ian's bed for the next four nights.  We could lie "together" touching or holding hands and life felt just slightly less scary and more normal.  It was a bit bizaare though I think for the night nurse to come in and find two bodies - although she always knew which one to check - after all I didn't have a syringe driver attached to me.

So after five days of me washing my one pair of spare knickers and one spare shirt (mental note: when a hospice nurse says pack for one night, always pack for five!!) we were told Ian could go home, still attached to the syringe driver.  A friend came and picked us up and drove us home.  Never has home felt so good!!!!!!!!!!!!!!!!!!!!

Apart from having to be at the house at 9am daily for the District Nurse to come and "charge" the driver with a new dose we had our lives back (sort of) and as Ian got more well (unbelievably) he got more bolshy and wanted to be cut loose from the Mothership/driver   After twelve days he requested it be removed and the powers-that-be agreed to its removal on Day 15.  Even that was chaotic.  No-one from the hospice let the District Nurse know what oral drugs should be taken instead.  Talk about Fawlty Towers.

So the driver came off on 10th December and if we were brave enough, we could actually leave the house and stay away overnight.  But no, cancer couldn't let us have fun could it?  I drove us 90 miles to a winery for lunch on the 12th and we had such a lovely lunch.  Ian polished off three courses (but it's an expensive winery so they were tiny portions hahaha) and we got home and I remember thinking "Life can be good, even now."  By 9pm I'd changed my mind because Ian leapt up from his armchair and rushed off to the loo for a completely sudden vomitting spasm - no nausea, just retching and retching.  Not wanting to get the blame, I rang the hospice and the night nurse suggested it was something in Ian's lunch - maybe the olives in his beef carpaccio???  Ian decided it was another crock of **** like we've been handed in the past - sort of "we don't know, so we'll make something up to pacify them!!"  His hospice nurse rang in the morning and I told her how this had frightened us both badly.  She was a sweetie and came over to see us and reassure us that it might mean nothing at all and may never happen again.

Thursday was fine and Ian was feeling even more energetic and well.  Friday morning I brought him breakfast in bed but forgot his oral meds.  He got up to go get them himself and returned to the bedroom.  He carried on into the ensuite bathroom, had a pee, and then retched nine times violently.  No nausea, no warning, and not even any breakfast brought up.  And yes, I rang the hospice and the nurse said to come in and see an oncologist that afternoon.

We were going over anyway to meet the builder on our house site so off we traipsed with changes of clothing and all the drugs just in case we ended up staying   This time we met a new lady oncologist and she was lovely and reassuring and helpful.  She wanted Ian to take Nozinan for the nausea (which incidentally he doesn't get before the vomitting).  I said it's so strong it makes him dozey and he is just sleeping away the last months of his life in his armchair when he isn't in bed - how is that quality of life.  She told us what no-one else had - take the Nozinan at night and the worst of its drowsiness-effect will help with a good sleep and it gives 24 hours of cover!!!!! so he will be alert and well all the following daytime.  EUREKA!!!!  Three oncologists and dozens of nurses later we have someone who actually gets it!!!!  She also queried the massive doses of paracetemol everyone was insisting Ian take for break-through pain on top of the long-acting morphine and the fast-acting morphine elixir.  Ian said he wasn't happy about it either.  He suggested he'll never know if he's having break-though pain if he keeps chugging down the paracetemol - and what if he didn't take them and he got some pain - that wouldn't kill him would it - and then he'd know that he needed a little extra help.  The oncologist was happy with that too.  We left her office walking on air!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And Ian's days since Friday 14th December have just got better and better.  He is alert and awake and almost-energetic every day now.  He is engaged in life, enjoying the house-planning process, enthusiastically following the Ozzy Big Bash cricket and we are looking forward to seven days away soon to eat good food and do lots of people watching and see in the New Year with the Auckland Sky Tower's fireworks display.

We do know, however, from the blood test on Friday that Ian's bloods are showing signs of the cancer progressing - I won't say more till we know more.  We knew that was going to happen.  We just want to bloody it's nose for a bit longer.  There still some fun in us yet!

Ironically, on the 23rd December Ian will have been in the hospice system for six months.  I was trolling the internet the other day to see how long people are usually in the hospice system.  I suspect Ian's hospital oncologist may have dumped him too soon, but I'd be the first to admit that I too thought he was dying back in June.  A huge percentage of people go there (let's be honest) to die and they die within seven days.  Only 11.8% of US hospice patients are still alive six months after admission.  So once again, my man is set on p****ing people off - he tells me he has made it his life's mission

So that's our last five weeks in a rather big nutshell.  I hope there is something in there that might help someone in a similar position - fight tooth and nail when you have to!!!  You won't win a popularity contest (I'm not expecting a Christmas present from any of the staff at the hospice ) but you just might get to spend a few more precious days, weeks or month with the one you love.

Not sure if I'll get a chance to post again before we leave for our holiday - if I don't have a lovely time over the holidays everyone.  I am an athiest who doesn't even believe in Santa so I won't say Merry Christmas - but I will say I wish you all the best New Year you can have.  Treasure every moment with your loved ones!!!

And congratulations on getting to the end of this mini-novel

Lorraine