I am writing this to help me make sense of it all. We travel quite a lot and over the last two years everytime we come back to NZ I developed terrible stomach pains which sent me scuttling to Accident and Emergency at Tauranga Hospital.
The first time it happened was exactly two years ago,September 2009, when we arrived home after 5 weeks in Bali, we had just lost our wonderful American doctor and had to see an alternative. Never once meeting my eye she simply muttered after I told her my symptons,’drink peppermint tea’. I duly did and eventually the pains went away.
The reason we were in Bali was to acclimatise ourselves to an intended stint in Bougainville with VSA. Two years worth supposedly starting in October 2009.
October came and went and no departure to Bougainville as the house was not ready.
We decided we would head to India for 6 weeks, more acclimatisation was our excuse. Great trip, bit of the squits but nothing much.
Arrived home,January 2010, two weeks later nasty, nasty stomach pains. Went to the private Accident and Emergency centre where a Dr shot me full of pethidine- bliss. Sadly the pains returned a day later so went to another Dr in our local practice who admitted me to hospital.
Now, getting into hospital is not an easy thing to do. You either wait for hours in emergency or go in as a planned admission.
Just to complicate matters Terry was away at a sculpture symposium, so I had to figure out how to get the 20km plus into the hospital. Luckily a friend was visiting that afternoon and she took me in, no place to park so she let me off at the door.
Four hours later I finally made it to a ward. Diverticulitis kept getting muttered about.
At the same time as I was being admitted a friend from my book club was also being admitted for similar pains.
The ward was full, strange being in a mixed ward, at one stage I was in a room with 3 men. They are not staunch when in pain.
The local surgeon comes and sees me next day and gives me a mighty jab in the painful bit, and says he doubted my wisdom at going to Bougainville at my stage of life. I could have killed him. They fiddle about for days, at one stage they mutter ‘TB’ only because I had travelled to some shit holes over my time.
They ruled that out and finally gave me a stomach scan. The radiographer administering the contrast did not screw it up properly and it went all over my hair and face, it was very sticky. Since then every scan I have I am paranoid about the connections being checked. The connection being between the needle inserted in my arm and the contrast medium.
The scan showed up some necrotised nodules, lymph nodes that seemed to have exploded then imploded. I was loaded with white cells and a high infection level so it figured.
They then decided they wanted some samples from these nodules and proceeded to carry out a medieval torture on me with long needles guided by an on screen image. Wow, the pain was unbelievable.
They never got enough of a sample so sent me home promising me a laparotomy, where they slice your stomach open and take samples in a few weeks time.
I waited, I fumed, I kept VSA apprised of the situation, they were ‘wait and see’.
From the needles they decided and eventually informed me that I had Non Hodgkins Lymphona but no idea what level or stage.
My son got married, I was in a state of shock and huge anxiety about what was going to happen. I was also grieving for what I knew was going to be a ‘no’ from VSA. Bugger bugger.
My son had delayed his wedding for us as we thought we were going to Bougainville in October and would have been due for leave in March, we were going to an isolated spot and got leave every six months. Waste of time really, I felt really guilty about the delay as son and new wife had a wet and stormy two weeks in the South island when it had been lovely up until the wedding.
I have another bad stomach attack, but just end up in A & E and get filled up with Oxynorm which makes me quite woozy yet every nerve seems to scream.
I eventually got notification about the operation, duly arrived at 7 am. By 10.30 am my blood pressure had risen so much it rings the alarm bell, 225, but the lower one was 110 so all seemed OK.
Terry leaves as they indicate they are finally ready to operate on me.
I get to the door of the theatre and the stomach jabbing surgeon takes me back to his office and says they cannot do the bone marrow whatsit as he is not qualified and I will need to come back again, in fact I might as well go home and have it all rescheduled, laparotomy and bone marrow jab.
A friend had told me not to argue with monsters like this – cry instead. I did and it all proceeded. I cannot for the life of me fathom out the behaviour of the surgeon.
The reults come back about two long weeks later, NHL in my bone marrow and my mesenteric- the bits that hold up the colon just below the tummy button.
I let VSA know, the bone marrow does it, they are very cautious and say they will wait until the chest scan results are in. It takes another 3 weeks to get the chest scan and another week to get the results. VSA are not interested. Don’t think it was the chest x-ray just my age- 64 at the time and the remoteness of the location. We were two days off sending the unaccompanied baggage- all 100kgs of it when the second attack happened – the one dealt with by A & E. We delayed sending it off. Eighteen months later there are still some items lurking in one of thwe cartons .
I hound the Oncology Department as to what is likely to happen, am told some people with what I have got have no trouble for at least a year! Good God I think, what is my expected life span now?
Read up on the net, and scare ourselves silly, but realise it cannot be cured but can be held if it develops with chemotherapy. Not likely I mutter. I am put on six monthly scans followed by a vist to the oncologist. We end up with a visiting American who is all long on jollyness and quite short on information.
Vows that my stomach attacks are nothing to do with the NHL.
I am put on a mile long waiting list for a colonoscopy, takes 5 months to get it. I write to everyone about the vagaries of the health system, my MP, the CEO of BOPH, to no avail of course. Everytime we decide that we will just give up and pay to go privately the public system begrudgingly provides the service. Colonoscopy provides nothing new, maybe low level diverticulitis, maybe not!
In the meantime we head off to Australia in July and then onto Vanuatu to do some volunteer work with a local church organisation, for another 6 weeks. See, I am not giving in!
I have an attack the night we get home!!!! Nothing to do with the cancer says the oncologist next time I see him.
We go on a cruise to Noumea for Christmas 2010 and part way through I am hit with nasty stomach pains, take my drugs – oxynorms and am fine again after a couple of days.
When we get home I have another scan, this time I have to go to Whakatane and they do my pelvis as well as my abdomen, they think the nodes may have shrunk…
We planned to do the Thames Path in June 2011 and then come home on the Dawn Princess through the Panama Canal. A total time away of about 3 months.
I spend April and May pounding the local roads, and by the time I have my next oncology visit in June I have racked up over 200 k’s and am fit as an old bunny.
I am totally shocked when the oncologist- the American has gone and I meet with the HOD, tells me the nodes have grown significantly and I need chemotherapy.
I say no way, we are leaving on Tuesday. he says if I feel unwell I am to come home.
I retreat in shock.
We do the walk, all 260km’s of it, not a problem, do the cruise, all 7 weeks of it, not a problem.
Home one day and wham bam, stomach pains again.
We head into A & E, wait two hours, come home, go to the Dr the next day, get a pethidine shot, not much relief, next night, I call the ambulance and use the admission letter given to me by my now quite respected new male GP and wobble off in the dark on my back to the hospital.
Treatment in A&E seems to have reached a new low, they are swamped with whooping kids and stoned youths. I reach a ward at 5 am, 6 hours after arrival.
I am woken up by a large black Fijian, accompanied by a small male Englishmen, they prod my stomach and then keep back while a gentleman of Arab extraction prods my stomach as well. They feel a ‘mass’ above my waistline. Arab man says he will organise a scan. I distinctly saw a little pink pig fly across the room, he actually said today or tomorrow. I snarl silently to myself imagining at least a weeks wait as per usual then another week for the result.
Surprise, I have the scan the next day and nice Arab comes and tells me the result the two hours later. It is worse, more tumours above my waistline and the rest have grown as well.
He has no doubt they are what cause my stomach pains. Hallelujah, someone who makes a decision and does not hem and haw and maybe and could be….
He tells me he has seen HOD of oncology but it still takes a week for me to get an appointment.
I do not see the HOD, am down the food chain with a registrar, she gives me all the information I need, chemo sounds absolutely awful, it really is a poisoning of the system.
I meet ‘my’ nurse, who is deaf and needs to be talked to face on- the Cancer Society Co-ordinator tells me this. However I cannot start for a week as she is away and I decide I may as well go to Garden Club on the Wednesday.
How do I feel at this stage? Well up until the last attack I have always snapped back really well, but this time it has been slower. Could be due to the huge number of useless Oxynorm that I took before being admitted to hospital could be stress.
I feel full of trepidation about the reaction I will have to chemo and a bit miffed about losing my hair. I paid 85 dollars last week to get it cut! Basically I am quite irritated at the whole thing, but not in a ‘why me’ kind of way, just miffed really.
One thing the Registrar let slip was the high number of lymphonas in the Bay of Plenty. I suggested she looks at the main primary industry- kiwifruit, for an answer.
I have little doubt that my NHL is at least in part due to exposure to hi-cane, got caught in it once in the days before neighbours had to be notified. In subsequent years we have always gone away during the hi-cane spraying season but the damage it does to our deciduous trees is shocking, it defoliates them. Our neighbour denies it is him, all grovelly when we get EBOP out then threatens to beat us up as he ‘is sick of us’. Hi-cane must have gotten to his brain!
So tomorrow is Garden Club day, Thursday I go and look at wigs and have my orientation with the deaf nurse then Friday they start pumping it in.
Not sure how I will manage the garden club outing, ‘how are you? will be the question, do I say ‘fine’ or ‘oh can’t wait for Friday and chemo!’
Reactions at the garden club outing fitted into the usual 3 catergories, ignore it and me, to ‘Oh my god, how awful’, to ‘well, what is happening now and what can I do for you’. I like the latter. Usually all I ask is that they keep in touch. One woman always greets me with’… and how are you Margaret?’ in a tone that an undertaker would not even use when talking to the deceased! I always scuttle off as fast as I can. I can mentally see the measuring tape and the shroud in her hand.
I loved one close friend’s response, she looked up all the chemicals I was going to be fed. I learnt somethings too.
The visit to the wig lady goes well, despite my saying that I wanted a red wig when push came to shove I looked like a harridan in a dark colour. Chose a suitable gray number- quite short plus I may get a very slightly ashy blonde one.
From there to the oncology appointment with ‘my’ nurse. The cancer co-ordinator was right I do have to speak face on to her. She went through the list for the next day and over the drugs to be used. Gave us prescriptions for various things, lots of predisnone and something made by Dr Teddy in India and the wrong sleeping pills, I have a phobia about generic drugs being used, have had a few nasty surprises in the past. So I was extre,mely ratty when T came back from the pharmacy with a generic sleeping pill. Cost 24 dollars the next day – on the way home from the poison shop to get it put right. Not much I can do about the predisnone and Dr Teddys.
T went to the pharmacy while I did a lost minute scuttle around the supermarket. Stocking up for the millenium!
Neither of us slept very well on the Thursday night, and were grateful when the alarm went off at 6.30- due in at 8.30 am.
I made sandwiches- no lunch provided nowadays I was told. Changed the bed linen and generally phaffed about, showered washed my hair and despite even watering my newly planted lettuces I was ready to go by 7.45 am.
First disaster, the bag with our lunch etc plus books was behind T’s seat, it tipped over and knocked over my portable bodum of coffee(of course) I dived over and cursing and snarling retrieved the bag but not the coffee which was all ove r the floor. Who got the blame!!!! Who usually totters downstairs with all the bags – me! Who took it this time!!! Not me!!
We arrive at oncology at 8.10 am- nobody around…Now when we had our orientation we were not shown where to go, it is just presumed you know. We waited and after a few minutes someone I had never met came out and asked what we wanted, ‘treatment’ I replied. “Oh’ was the response I’ll find someone. The male cleaner was enjoying it all of course.
The nurse finally appears and I am parked up in a too high lazy boy, feet swinging above the ground. Have some pills popped into me- phenergan to dope me up and 5 prednisone, the first of about 40 to be consumed over the next few days. Yes, I was surprised, they fill you with poison then you take Dr Teddy plus prednsisone and one other drug for the next five days!!!!
The nurse could not understand my grumpiness about generic drugs, informed me that with all I was going to have to take why should it matter, but that was exactly my point, it does matter, I do not want more side effects than necessary.
My blood pressure by this time is 185 over 100, quite good for me with a bad attack of white coat syndrome.
It gradually goes down to about 140.
Gay shoves a line into my hand and so it starts. The first dose Rituximus, the supposed ‘breakthrough’ drug takes about 4 hours, they tried to speed it up but my blood pressure and temperature both shot up. I am there for a total of 7 hours, the other two poisons take less time. I feel a bit woozy but totter out to the car.
I actually slept for a couple of hours at one stage, scoffed the sandwiches and a few mandarins plus a cup of the worst tea in the world.
Visit the pharmacist and get the sleeping pills sorted out. Come home, change my clothes collapse on the sofa and sleep for another two hours.
My hands and feet seem swollen but that is not a side effect I am supposed to have until much later.
Take vast quantities of pills fall into bed but do not get to sleep, listen to the radio for half the night. T is still awake so we share a sleeping tablet, both sleep until 5.30 am.
Saturday September 24th 2011
My goddam eyes are puffy now and my hands are stiff.
I remember grapefruit is a diuretic so juice one and have it. Hopefully it will work.
I feel a bit woozy, a tad more than after the oxynorm, but do some washing, water my vegies and have a snooze.
This afternoon after more of Dr Teddys and todays 5 predinone I pick more grapefruit and weed a few errant plants.
Ally from the book club rings up and we have a long chat about life and things in general then I give Fiona a ring as she has been most supportive. Shall miss them a lot when they move away.
T is down playing with his polysterene monster that he is making into a masterpiece for an art show and the weather has gone all overcast. NZ plays France tonight. So all must be right with the world.
I peel potatoes for dinner so am still partially functioning. However I suspect that this is the best end of the chemo and that one gets more tired and ratty as it goes on.
I let the Missionary organisation know today that I may be delayed in taking up the appointment in Honiara with the Dominican sisters but I would keep her informed. The chemo will go on till after Christmas and they want someone there in February.
Sunday I feel a bit better, totter around the garden but mainly sit about. I am still in charge of the kitchen so that is a plus.
Monday I notice that my hair has gone dull, not a bit of shine, amazing how fast the hair shows up your health plus my scalp feels prickly. Monday night we go out to a birthday drinks do, I manage the entire evening and even have a couple of drinks.
This all feels a bit like a first pregnancy if i can remember that far back, everything about it is different and you are not quite sure if you are feeling something or nothing. At least the anti nausea pills have stopped me from being sick. I just feel a bit numb and almost jet lagged.
Received my next appointment card for chemo in the mail, so game on I guess.