Manatu

Pig's Ear Park and Other Adventures

Month: May 2012

The next appointment

Nah, never wore either of those outfits- very subdued in gray.

So, to sum up, 65% survival rate with this, would not make much difference if I was younger , but would be less after 70. I should start all the nasty  treatment on the 11th of June. I think I could have started it earlier, but the 11th suits.

I must admit that saying a  65% survival rate somehow sounds worse to me that saying I have a 65% chance of making 5 years.

Todays visit to Hamilton hospital was hotly debated by me as I thought having another onclogist visit after one last Monday in Tauranga was a bit over the top. However the message I got was come or get no treatment. Last weeks visit to the oncologist here was pretty straightforward, told what drug I would be on and that chemo lasts about 6 hours once a week for 6 weeks. No probs!!!! Well, none apart from the threat of tinnitus, damaged nerve endings in fingers and toes and a few other trifling things.

After the onclogist last week I had to go to Hamilton for a CRI and the dot tattooing. I have never encountered such indifferent lacksadasical treatment, so going over today I was not filled with joy.

Also on Saturday a letter from Waikato addressed to Margaret Smith found its way after 8 days , into our letter box which is one of several. I hope whoever opened it enjoyed reading in detail about my cervix. Yes, I took a punt that it was for me- it was. Our Dr is M Smith so whover typed it put my name down as Smith.  Had all my other details correct and even noted my name after the cc’s…

My first task today was to show the office staff the letter and envelope, much grovelling, even asked if I wanted to put in a formal complaint. I said I would wait until after my appointment- there could be more than one complaint thinks I!!!

The Nurse Co-ordinator came and met me, said her counterpart in Tauranga had described me as ‘forthright’. ‘ not a miserable old bitch then- I was quite surprised!

Finally meet with the onclogist, he has Williams ears!!!! I had prepared a timeline about the whole process, he immediately told me I was wrong about the date I was diagnosed with NHL, well I thought maybe I am wrong, at that point I produced the Margaret Smith letter, he then checked the other dates in the Smith letter, 10 years early for the laparotomy. He then seriously looked at my time line and compared it with my hospital notes. I graciously accepted his apology. My blood pressure only got up to 185!!!!

He also apologised for the slowness in getting me thru the system, I did say I was wondering about the prediction of 6 months left  as I was initially diagnosed in Feb. Suggested they treat me soon before I am no longer treatable.

I told him the date I wanted treatment and he was surprised- it is 3 weeks hence, said I had been told it would be at least two more weeks so what did another week matter. He said if it was him he would be nagging to get it done. I said I am a great nagger but it never seems to gain me much in the hospital system.

We  parted on friendly terms and even he  cracked a joke, ‘Goodbye Mrs Smith from Parker St”

We then went up and had a llok at the Cancer Lodge, very new and bright, T is allowed to stay on the nights I have brachytherapy, otherwise he will stay with Joan’s sister Rose.

We then went and had lunch for a second time with Rose. She commented that I seemed much happier with Waikato than I had the week before- my word I hope they managed to get those dots in the right place…..

So, feel quite remote from the fact that my chances are slimmish, (glass half full or half empty?), does not seem to relate to me, perhaps because I feel well and have no pain.

Clothes for the next hospital appointment

Photo One taken on  the Dawn Princess 2011  before  Fort Lauderdale , photo two , taken in FL where I was doing an advanced witchery course.

Executive Summary

Very straightforward as an ES should be: six months left if I do nothing, with external radiation, brachytherapy and chemo, a 70-80% chance of another two years and a 55- 60% chance of making another five years.    

Blame the low stats on my background of NHL. And just to make it even better(but wait there’s more…) the skin cancer scar on my sternum is acting up and ‘looks like it is back’ said the ca nurse! Oh Joy!

Background.

No I won’t number off each section….

We had a lovely time in Kumeu- yes it is possible. We stayed at a very upmarket B&B called The Duckpond- google it…

We went up on Monday and believe it or not we had cold duck for dinner. The on Tuesday we went to the Pah Homestead which had two excellent exhibitions on one by K something Bush, very different, all pastels and Beadsley like but with some gritty modern messages. The other was Sitting pretty, a series of portraits by a local artist, of local celebreties, Jo Segar was great and Mark Sainsbury also looked pretty good. The house itself is great, all 1870 architecture with a protected view of One Tree Hill.

Back to Kumeu after much hissing and spitting getting from the homestead to Kumeu for a sumptious dinner of…. tuna salad.  Well, it was wet and nasty out.

Wednesday dawned a bit murky but cleared eventually and we arrived at the Gibbs Farm at Kaipara on the dot of 10, we were allowed to stay until 2 pm.

It is stunning. Suffice to say we wandered around in a gleeful daze for about 3 hours. Apart from the wonderful sculptures he has zebras and giraffes plus a stag in full roar.

Lots of alpacas wandered all over and lots of gobble gobble  turkeys.

The site is stunning as well, right on the Kaipara. Lots of local sculptures/artists including a slightly strange wire construction from Ralph Hotere, plus a Neil Dawson pyramid. The stars of the whole show though are the  huge pink vaguley erotic sculpture by who know who and the giant steel arches by who knows who’s brother.

Alan Gibbs who owns it all (and does not chrage admission) has in the last few years moved to having sculptures   commisioned, and getting sculptors to do the biggest work they have ever done. It was thrill to see the Sera sculpture having seen his work at the Guggenheim in Bilbao. (forgive a girl a bit of name dropping).

We topped the day off with dinner with Joss and Rob, lovely to catch up.

We drove at breakneck speed to Hamilton where I managed to get us lost- all changed since I lived there, just in time for the dreaded appointment at 11.30 am. We left at 1.30 pm. Suffice to say it was gruelling couple of hours for all involved.

Plan now is I go over on Tuesday to be measured and tattooed- I asked for a butterfly but was declined. ‘Only small dots to mark the singe site”

Then wait for a couple of weeks -I suggested some happy pills would/may be a good idea, until I spend each week for five consecutive weeks at Waikato. Sigh. Allowed home at the weekends and just to top it all of on weeks two, three and five they knock me out at some point and insert rods up my fanny, not sure how long they leave them there but heard a woman moaning about them in Auckland.. Men are softies, they just get little pellets for brachytherapy….

Think I will give T some happy pills as well…

I am not miserable, resentful, don’t think it is unfair just exceedingly bloody grumpy about it all. One good thing- my chances of getting lymphodema are very low , about 1%, it is surgery that buggers them- unless he was fibbing…..

You can wipe off this year said the expert, and you won’t feel like you do now for another 3 years.

He asked what sort of drinker I was, I modestly admitted to moderate(liar) from this point on I told him I am heavy!!!! Then again happy pills may be just the thing.

 

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