So how come we have to wait until Friday- today is Wednesday- for an appointment with the Hospice Doctor!!!! T is now under the hospice for pain management but so far not so good.
We realised that T has been in constant pain with his lungs since they did the biopsy on them last OCTOBER!!!! All this time being told on a regular basis that one should not have to suffer pain, as they all prescribed something different.
I phoned the hospice this am and was told to go to my GP as Friday was the first appointment available with the Dr. there.
Duly went to the Dr who prescibed for us the morphine patches that the radiologist in Hamilton suggested yesterday. The Gp suggested that some of the pain is probably due to a nicked nerve and suggested another drug, one I have used as a sleeping pill in the past…The R in Waikato was pretty shocked at the drug regime T was on, old fashioned and ineffective were pretty much his words. He is on;codeine, paracetomol, steroids for the brain swelling, plus oxycontin, no wonder he is a bit addled.
It is quite absurd that everyone is panicking about the brain tumour which causes no pain and ignoring the lung which gives him more and more pain!
The upshot of the visit to Waikato Radiology yesterday is T is to have two weeks of radiation at Waikato- that lodge again! Then, if his dna markers are one of the one in three suitable will have a newish drug- well new to NZ, called tre something which is producing good results.
Won’t know the dna result for a couple of weeks- sigh- more waiting….
We now wait for the Waikato Hospital to let us know when T starts over there…could be next week- who knows. All the while the three months without treatment is being nibbled into….
…is what Terry has as well as the other unspellable disease , mesolithemioma.
The lead surgeon with a name like a Turkish restaurant rang us yesterday morning confirming more than our worst fears actually. All made worse when we received a call from the oncologist asking if we could go in and see him yesterday, a day before the planned appointment.
His comments, ‘this is the worst news you could get, this is very bad’, oh no, they do not try to scare you! Google Edward Kennedy, he died of the same thing.
Anyway, the O will now get in touch with Waikato Hospital and talk to the radiologists there and looks like T will have 6 weeks radiology and chemo then come back and have chemo for the meso. Just maybe the brain chemo mix may help the meso….
Progression if untreated is rapid, three months of fast decline to a vegetative state. With treatment, about 18 months- maybe. The tumour is far too deep to operate.
Joan you will be pleased to know we now both have cell phones- basic ones!!!! Now getting the wretched phone line sorted. Discovered Vodafone help ninnys with ipads too!!!!
T is in good spirits but relies on his stick for stability when walking and is on steroids so his skin his good!
Interesting that the kiwifruit king who lives above us had a brain tumour…..he recovered and carries the damn thing around in a jar!!!!!
Just a message to friends, we are not contagious or malformed and T looks forward to company!
That is what I felt like trying to get any information out of Waikato.
Finally all the ducks got into a row but it took some moaning and snarling. Imagine a Jack Russell cornering 3 surgeons and barking non stop and you will get an idea of what went on. T now has an appointment with the O here on Wednesday. Wednesday looks like this; 11.30 T’s clips come out, 12.30 I have a crown done, 3 pm see the oncologist….All it needs in this mix is a headcold and the day will be complete.
T has about 8 metal clips in the back of his head, nestled in his pink hair. He is feeling Ok but a bit battered, I suspect the chest pain has worsened as he now often takes codeine in the middle of the night.
And just to make our day on Friday, when we returned from the hospital we discovered we had been hit, yet again by hi cane, this time a newly flourishing ornamental hedge at the gate had been defoliated. Timing was spot on from the hi cane spray of the previous week. hedge is now useless and will have to be pulled out. EBOP is more concerned about the process of notification than the actual damage. Have just written my yearly letter to the local paper- in response to a sanctimonious letter from the CE of the Kiwifruit growers….
Weather is warming up slowly but have decided that the open fire is a nonsense as we bought a load of wood three weeks ago and have about a weeks worth left- don’t think heating artificially would cost much more than the wood. mind you better than a gym workout lugging the damn wood upstairs!!!! T thinks the heat energy is greater from the wood fire but electricity does not leave a film of dust everywhere either!
…..is covered in pink hair due to the ?iodine used…
He came through yesterday very well, far better than after the lung biopsy, think a proper pain management plan may have helped!
However trying to get information , simple stuff, like how long will he be in is impossible
Dealing with people for whom English is probably a third language is very trying to say the least. As I do not use a cell phone and visiting hours are strictly enforced I am not there when the Drs make their rounds. I gave the hospital my friend’s number, she received an unintelligible message from a totally indecipherable name which she eventually deduced was from the hospital…Hopeless, I eventually heard the message and garnered that T had survived surgery. This was well after the event. The receptionist and the ward porter are New Zealanders….
Apparently from what a nurse said T can have the chemo for the mesolithemioma now, so that is another battle in process as I try and get a Dr to ring Tauranga to tell them this. The oh so helpful staff (mmmmmmm) were going to get the oncology registrar to ring me at my friend’s place last night, I waited, and waited….He was not available at the time as he was ‘in theatre’….at 6 pm????
So today will be another battle for information…
The ipad is refusing to drag up email so I am not getting any messages, not even from wine companies or cruise companies, so something is not happening.
Heading says it all, just think of an appropriate four letter word!
We duly set off yesterday morning for Hamilton, me at the wheel as T is well past driving. he nearly put us in the ditch a couple of weeks ago so that was it. He is surprisingly good at being a passenger. Local motorists are now getting extreme road rage but cie la vie!!!!
Arrived in Hamilton at the rquested time of 12 noon and T was duly ensconced in a nice single room.
They hurried and scurried and took blood, inserted lines into his arm and truly they did do this, painted an arrow on the right side of his head where the offending tumour is.
We went thru the drug regime he was on about 4 x, I eventually just left the bag on the bed for any interested participants in this little drama.
Only one asked when did he stop taking the heart aspririn. he hasn’t I replied, oh dear was the response from one of the many multicultural nurses.
Upshot, no biopsy as he was on blood thinners. Nobody had told us. Nobody had sent us any documentation either.
By this time it was 4.30 pm, I was in a fearsome rage and would have savaged anyone at that point. Many apologies were given, we were even asked if we wanted to make a formal complaint, my response was why would we bother!
May get back in on Sunday for Mondays list, depends how many car crashes there are in the Waikato over the weekend. Otherwise it is a week away. I was very vocal about the fact that this is holding up chemo and also allowing the brain tumour to grow bigger. Said Sunday sounded like a damn good option, upshot was very inconclusive, more mmmmmmming.
We went to my friend Shirley’s place for the night and drove home today scattering motorists left right and centre over the Kaimais.
I phoned Tauranga Hospital to see if they could put pressure on, the O we deal with is away on holiday and no Waikato surgeon is going to listen to a minion from Tauranga so no dice there. Needless to say we feel like victims in all of this and have greatly elevated blood pressure.
T is back on the sofa and I am back to carting wood up to keep the place warm, though it was nice today.
After 10 days of harrying doctors and hospitals and thinking Terry had had a stroke we finally arrived for his first chemo on Friday 2nd August.
In my harryings the previous week I had made one last phone call to the oncology nurse telling her that I thought T had had a stroke and could someone please please look at him before starting the chemo. I had done the rounds of doctors and the hospital during the last 10 days and got nothing more than mmmmmmm….
We arrived at chemo bright and early and T wobbled in on his stick, yes he was that bad , could only walk with a stick and was wobbly on that. If he had to go left he went right, he laughingly suggested I get him a lead. I didn’t think it was very funny, my sense of humour has taken a pounding.
T nearly missed the scales when they weighed him and had to lean on the wall, the nurse went to find the oncologist.
The O did the usual stroke tests, T’s finger missed his nose by a about 20 cms when using his left hand…
Right, ‘a cat scan today’ , I nearly fell off my perch! Such speed.
We duly had the cat scan and tottered back to oncology.
“I was wrong ‘ says the O,’he has a tumour the size of a fifty cent piece deep in his brain surrounded by swelling’ almost fell of my perch for real this time, T later said he had wondered if that was what was happening. I must say I was surprised as he had worsened over the weak, a stroke is usually a one hit baddie, but I was not expecting a tumour.
They have moved fast, he is going over to Waikato to the Neuro Surgical ward on Tuesday for an MRI then if it is biopseable(is that a word- probably not) they will biopsy it and see if it is metastisized mesothelemioma or a new tumour.
He will then either return to Waikato for radiation or to Dunedin for a one off Radiosurgery. I think we are both plumping for Dunedin as we both have bad memories of the Waikato cancer set up.
He is taking a drug to reduce the swelling and after two days is already walking better but does not venture far from his bed. Has lost 3 kgs.
Chemo is off for now. But yes, the O did get the funding for the better drug, found out on Tuesday on one of our ‘do something’ visits.