What with waiting to get onto magic ‘lists’ and generally just waiting I was really pleased when the co-ordinator in Tauranga for the Gyno dept phoned last Tuesday (3/April) to check that I had received notification of my appointment with the Auckland ‘list ‘ makers for today- Thursday 5th April.
I knew there was supposed to be a MRI done so hounded the MRI people here and managed to get an appointment a week earlier than they were planning on.
“It won’t have a report done as our pelvis man is away(school holidays’). I replied not to worry as the list makers in Ak would take no notice of the Tauranga report anyway.
We set off at 8 am , appointment wasn’t till 11.30 am but we were not risking anything.
A quick stop with all the trendies at Nosh to buy essentials like Panko crumbs and lavash bread and we were ready to face the list makers.
First mistake, got a registrar, who was pleasant but very surprised when I asked what the date was for my radical hysterectomy, expecting 23 or 30th April- they only operate on a Monday.
No! No! she responded , we are only going to have a look at your kopu under anasthetic to ensure that all the decisions we have made are correct. It was to be done on the 30th April, with surgery sometime off in the never never…
I erupted and said, I was going home as I had had enough of their sodding system and would probably die of a stress related heart attack before they got to me anyway.
She backed off immediately and went and got senior list maker. I said to the senior list maker that it was fast becoming a no go zone for me as I HAD HAD ENOUGH!!!!
I asked her what would happen if I did nothing, never really got a reply to that. She threatened fistulas, great holes in my kopu- maybe!!!
Senior list maker suggested that they have the look up my jacksie and then for me to make a decision. I said I was not waiting until the 30th for that. If that was the date I was gone!!!
Now even having the hysterectomy is hughly problematic because of the nature of it, everything goes including my pelvic lymph nodes. These are my big worry as 30% of patients get lymphodema FOR LIFE!!! Luvvy white stockings. Then there is the re siting of the widdle apparatus, one has a catheter for five days to retrain the site!
The lymph nodes are really the main problem as their may be microscopic nasties in them and they may not show up hence the great desire to whip them out.
So what about having radiation I asked- well that can cause de da de da de da, thickened this, thinned that. However, radiation is the only treatment when it gets really really bad, I am on the cusp of really really bad. So lets wait….
So why do I need the surgery if the cone biopsy got it all???? And that is all that will get me back there on the 23rd (T’ s birthday), if they got it all in the biopsy I am not going back on a maybe about the lymph nodes on the 30th of April for the full monty. Yes, managed to get a date in the end and now don’t even think I want it.
I definitely am in favour of the third option- do nothing. I am 66 for heavens sake and if I get another three or so years so be it. At least I would not spend 6-8 months getting over it all only to have the NHL carry me off in three years anyway.
Have to be at the hospital at 7 am on the 23rd and we have decided we will simply get up at 5 am and go…Surgery only takes half an hour but after it they will tell me (cautiously) what they think. We will be home by 5 at the latest.
We never left the hospital till 3.30 pm today after having had my zillionth blood test and ECG etc etc… and then took 3 hours to get home- Easter!!!!
I will say the senior list maker gave me an hour of her time , sorry for the patients who had to wait….