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