Diagnosis part 2

On November 8th, it was another trip to Lower Hutt.  This time Peter came with me so that we could both hear the results of those awful biopsies from the week before. Talk about good news and bad news, well there was bad, good news and bad news.  The bad news was that the frozen pea was definitely cancerous, Invasive Ductal Cancer of the Breast, apparently the most common and the easiest to treat, if caught early, as are they all.  The good news was that the area of calcification they had taken biopsies from had all turned out to be non-cancerous.  However, that in itself, while a relief, was immediately tarnished by the fact that having established that, they wanted, now, to make sure that the other area of calcification was also not cancerous, or otherwise.

With the official notification that I had cancer, Robyn, Carl’s Specialist Breast Nurse, who sits in on all the consultations, handed me a ‘Cancer pack’.  On top of Carl’s detailed explanations of diagnosis, prognosis and treatment there was a whole heap of paper to read as well, just to make sure that we were fully informed, in case one or other of us had glazed over during all the verbal explanations. One part that I didn’t glaze over for was the fact that now there was a non-cancerous part to the equation with one part still unknown the treatment could change from a straight out Mastectomy to a chance that there could be a Lumpectomy, or in their terms a Wide Local Excision, accompanied by a Sentinel Node Biopsy and followed up next year by 6 weeks of radio-therapy.  And the bad news on that possibility was that, because the frozen pea was right on the edge of my aureola, I would have to lose the nipple.

To me that is almost as bad as losing the whole breast.  That’s still quite a disfigurement that will be with me for the rest of whatever life I have left after all this.  When Carl talked about the Mastectomy he talked in terms of an immediate re-construction being available if I wanted it, because of the unlikelihood of the cancer having spread into the lymph nodes.  But with the lumpectomy and losing the nipple with it there is no talk of reconstruction, even though the disfigurement is almost as great I would have thought.  In fact, I do think.  OK, there will still be something to put in a bra, but it will be smaller and misshapen.  In the cancer pack I read, somewhere, that the NZ government provides subsidies for prostheses in cases such as I imagine mine would be. That’s not what I want to define the rest of my life either.

Something I shall have to enquire more about on the next visit.

But meanwhile, back to November 8th. An appointment was made for me to go down to Lower Hutt again, the next day (9th) to have the extra biopsy on the ‘hard to find’ area of calcification.  And, oh dear, was it hard to find.  That day, I think I must have had the most photographed boob in the country.  It was one of those nasty ones where I had to firstly stand up for a lengthy series of mammograms till they found a picture they thought they could work with.  I think there must have been nearly 15 mammograms trying to get that far.  Having obtained the right sort of picture, I was then put on the gurney again, on my side, with boob clamped into the mammogram machine while what seemed like another 15 mammograms were taken while they positioned me exactly, so that the Dr could reach the area of concern with all his needles to take the required samples.  I ended up with my hips downward on the gurney, my arms over my head, and my whole top half almost completely off the gurney with my head between my arms, all but eating the mammogram plates and with one of the radiologists having to support my top half so that I didn’t fall off.  And though all this I had to remain so still, so that they could do their positioning and eventually stick all the needles in.

I might add that all of this was taking place on a boob that was already showing a bright rainbow of colouring from the bruising of the previous week.  plus there were two incision marks healing.  (The biopsy needles were wide enough that they had to make small incisions to get them into my boob.)  The incision from this biopsy was under my armpit and in the ensuing days both it and the new lot of bruising made for quite an uncomfortable time. The bra-less 60s beckoned, but I didn’t back then and nor did I that week.

I had had the foresight to bring a little lunch with me this time and ate in the car park before driving home over the hill again.

So then began another nightmare week of waiting, waiting, waiting, sleep deprivation and so on.  On one of my periods of sleeplessness, in fact, it was November 15th, the day I was due to go back to Lower Hutt for the results of that horrible biopsy, I heard my Ipad ping with a Facebook notification. Not being otherwise occupied, I answered the message back and surprised one of my lovely friends in the USA who thought that all good people in NZ should have been asleep at that hour, 4am.  But I had already been awake since 2.15 so I had no compunctions about picking up the Ipad and writing back, and so began a ‘chat’ that lasted over an hour.  I was so grateful for the company, and the sympathy at that desperate hour of the day, and all this while she was supposed to be working.  You have to love friends who love you like that.  And for her it was a bit of double whammy because her sister in Christchurch had had a Lumpectomy (and the Sentinel Node Biopsy) for an Aggressive Lobular Cancer only a week before.  In a way, I almost felt guilty, unburdening myself on her as I knew full well what her sister’s situation was, but I had no sister but her to ‘listen’.

So the day of my next appointment (November 15th) had dawned, rather early for me, and again we piled into the car and drove over the hill for the news that the second (‘hard to find’) area was benign.  I almost felt that it should have been cancerous or at least pre-cancerous, just because of the ordeal I had been though to get any sort of result at all.  But that result certainly simplified the treatment options.  Although I could still have the Mastectomy if I wanted to, the lumpectomy followed by the radio-therapy sounded like the least invasive option, surgically anyway.  So I have been booked into Boulcott Hospital in Lower Hutt for the surgery on November 28th.  I have to be there at 7am and nil by mouth since midnight on 27th.  That means I shall have to leave home, at the latest, by 5.45am. Ye gods and little fishes.  Another time when good New Zealanders should still be in their beds.

The emotional rollercoaster

Those two words, breast cancer, for a woman mean immediate start button on an emotional rollercoaster.  I don’t know when the ride ends.  I’m still on it.  The highs, the lows, times you feel strong enough to tackle the world and others when you wish it would swallow you up.

That ride home to Carterton on November 1st was dreadful.  The first problem, much more easily fixed, was that it was after 3pm and I hadn’t had anything other than a cup of tea at the radiology clinic since breakfast much earlier in the morning.  For a Coeliac takeaways and eating lunch from a cabinet in a cafe are fraught with difficulties.  Most cafes seem to think that all we ever want to eat is the orange almond cake, which is nice, but not lunch. The Indian Cafe in Lower Hutt where we liked to eat on occasion had closed for lunch at 2pm.  Finally we drove past a Burger Fuel.  They do GF hamburgers, yummy ones too albeit a little large for a 3.30pm lunch. So armed with the burger and a bottle of coca cola (when did I last have one of those?), we drove home.

Its so silly how something as petty as not having lunch and being unable to easily find anything to eat can assume such  monstrous proportions in one’s mind. Truth be told I was past it then.  I couldn’t have cared about lunch, but my tummy was rumbling and eventually it blotted out all else.

Having consumed the burger and coca cola with only minimal drippings down my front, I found I couldn’t open my mouth to speak without the tears coming on, so we drove in silence for most of the way.

I have no idea, then or now, what was running through Peter’s mind.  We just drove.

We had to go via the supermarket as I had nothing unfrozen that I could cook for dinner.  I can’t even remember now what I bought, or what I cooked but I cooked something for dinner.  Did I?  Maybe Peter cooked it.  We ate and watched TV. For the most part I still couldn’t speak without tears welling up, but there were three grown children living in different parts of the world who really deserved to know as well.  So I faced the computer screen and wrote a group email to them, and later copied it to the brothers and sisters in law and a few friends I knew would care.  Typing the words was much easier than giving voice to them. Much to my surprise Simon (the only son and the only one who lives in NZ) rang shortly after I had sent the email, and surprising enough I was able to speak without the tears.  I was grateful for that, and for his call.

So then began the waiting, waiting, waiting, waiting,  one of the worst parts of the rollercoaster, at this stage, waiting. Waiting for those results on 8 November. Almost every night I would wake at some time in the wee small hours and find myself unable to get back to sleep.  My mind raced away with me on journeys I didn’t want to travel but they kept intruding into my consciousness anyway, scenarios that I had been assured were most unlikely in my case, all the what ifs, just the thought of breast cancer and the potential disfigurement, all causes of massive sleep deprivation throughout the week. And come November 8th I was an emotional wreck.  I still am.

Diagnosis part 1

I was so supremely confident that the diagnosis would be favourable, I told my husband he needn’t come with me to the Dr’s appointment in Lower Hutt, so sure was I that it would be a quick trip in and out, then off back home again.

The mammogram had shown the frozen pea that I knew about, but also two areas of calcification in quite different areas of my boob, that were so removed both from each other and the site of the frozen pea that they caused concern to both the Radiologist Dr and Carl Dowle.

Call me a prude, but I am not used to undressing for strange men.  I’ve been happily married for 43 years to the same man and he and he only has been privy to those parts of my body that I was now having to parade before a strange Dr.  The only other times I had willing exposed by boobs to anyone was for the purpose of feeding my children, and then it was discreetly done, not with my whole top half bare.

So there I stood under the gaze of Mr Dowle.  Put my arms this way, put them that way, etc, etc.  Back into my clothing and to the chair beside the desk.

So that was it.  He pronounced right then and there that he was in no doubt that the frozen pea was breast cancer.  He also thought that those two areas of calcification were pre-cancerous but to confirm that I needed to have biopsies done, one on the frozen pea and one on the area of calcification that they could easily see and reach.  He then told me that the lump and the areas of calcification were so far apart from each other that the whole breast had to be regarded as ‘unstable tissue’ and that the only treatment was to have a mastectomy.  The one up side was that he thought it unlikely that the cancer had spread because the two areas of calcification were closer to the lymph nodes and they had the look of pre-cancerous areas rather than cancerous ones and were unlikely to have spread cancer cells elsewhere and so the mastectomy would be the whole treatment and not have to be followed up with chemotherapy.

WHAT!!!!!

Suddenly the frozen pea was no longer a skin lesion, it was cancer and there were two more pre-cancerous sites that needed getting rid of as well.!!!!!  I’ve always been quite emotional and tears are never far away.  I can’t watch lots of TV programmes or movies without unbidden tears coming to my eyes at both sad and happy moments.  Well this certainly wasn’t a happy moment.  I dissolved into tears.   

To his credit (and because I came from ‘over the hill’) Mr Dowle arranged for those biopsies to be done straight away, before I left for home again.  But that was the beginning or more embarrassment and pain.  

First they tried  a biopsy on the easy to see area of calcification.  That involved that wretched mammogram machine again. They took a few preliminary mammograms so that they could site me in exactly the right place so that the Dr could reach the area with his ‘needle’.  That involved the administration of two shots of local anaesthetic while I was lying on a gurney with my boob clamped into the mammogram machine. I dared not look at the ‘needle but it sure sounded like more than a needle and the Dr did say it was wider than a normal needle. Five samples later I was moved to a different room and allowed to lie down on the gurney while they located the area of the frozen pea with ultrasound.  Again I had local anaesthetic administered, but oh dear, not enough. At the first attempt to snip some of the tissue with his ‘needle’ the Dr hit an area that definitely was not numbed.  The pain was so sharp I moved involuntarily (quite a bit), with the needle still inside my boob, and then the tears flowed again.  Both the radiologist and the Dr were in no doubt, despite the fact that I hadn’t uttered a word that, I was in pain and that the procedure wasn’t quite going to plan. Another dose of the local and they tried again. Seven samples later, I was finally able to retreat into my clothing and try to act like a normal person, who hadn’t been through all that for the past hour or so.  The Dr told me that I had taken the equivalent of a bashing at his hands, in that past hour and, I suppose, combined with my emotional state, they thought it was not a good idea for me to drive all the way home on my own.

It took me ages to regain my equilibrium again.  They gave me a cup of tea, and with all the good will in the world offered me a chocolate chip muffin, which I had to refuse because of my coeliac disease.

The only problem was that I had another appointment following on from that with the Dr, that I had thought would be over and done with in such a short time.  The next appointment was to be measured up by a dress designer for a dress to wear to Maria’s forthcoming wedding on 4 January 2013.  I was crushed.  The prospect of being measured up for a new dress, that hadn’t been designed yet with the prospect of a mastectomy hanging over me was so terrible, I could hardly contemplate getting into my car.

But fortified with the tea I walked out, and drove into Wellington for the dress measurements.  Only a matter of just over a couple of hours had passed since I had been given an almost positive breast cancer diagnosis with the only treatment being a mastectomy.  I had been an emotional, tearful wreck at the Radiology clinic and here I was about to be measured up for a Mother of the Bride dress.  I actually managed to tell Zowie (the dress designer) of the problem, without dissolving into more floods of tears.  

When I left her place, I went back to the car to call Peter and asked him to drive me home. When he arrived there was no way I could convey the morning’s events without more tears. And so we drove home.  

My next appointment with Carl Dowle was on 8 November.

Where am I now?

In my secondary school years I revelled in the world of languages.  I loved them and they came to me an awful lot easier than things like Maths and Chemistry.  In my final year at secondary school I took, English, Latin, French, German and History. That combination and the insights of the teachers I had gave me a burning desire to see the world, but back in those days it was a 6 week journey away by ship and cost thousands of pounds as we had then.  My measly public service salary, after deduction of food and rent, never was enough to go save the necessaries to undertake that sort of trip, and besides 18 months after I had moved to Wellington I had met the love of my life and marriage and the ensuing home and family consumed me.  Although that yearning for an overseas trip never abated.

I did go to Australia, several times in my later years, with my talented teenagers to watch them compete in Australian Track and Field meetings. We spent our savings sending our elder two teens to Europe, but still never went ourselves.

One of our children was lucky enough to obtain a scholarship to Tulane University in New Orleans, and I went to visit her in 1996.  In 1998 the same child (an adult then) represented New Zealand in the Commonwealth Games in Kuala Lumpur and, of course we had to go and watch that.

After we had moved to Carterton there seemed to be enough money that we could finally plan that long yearned for trip to Europe.  So plan, I did, and made bookings to visit Maria and her fiance in London and take a river cruise along the Danube, Main and Rhine Rivers.  I was as excited as a kid at Christmas time at the prospect of this trip and couldn’t wait for the September 1 departure date.

One night in August, in bed unable to sleep because of a small niggling pain I found a lump in my right boob.  Now, I call it my boob because my mother had died in 1977, months before Maria’s birth, of breast cancer, and I suppose there was a sub-conscious thing going on that no-one got boob cancer.  It was always breast cancer, and I was going to do my damnedest not to fall prey to the same disease my mother had.

But there was this frozen pea sized thing in my boob, and all that money for the trip of my dreams had been paid over only days before.

I made the decision right then and there that this would have to be my secret.  Who knew whether I would survive to do this trip another year away, we had made these plans so that we could meet with Greg’s family before the wedding.  No point if we went a year later. All sorts of logical and illogical thoughts ran through my mind.  But I was so very determined that that damn, stupid lump was not going to spoil that trip to London and Europe, so I put it to the back of my mind and carried on with life as if it weren’t there.

We were away in London,Europe and Australia for nearly 6 weeks and I had the most wonderful time.  For me, it was like constantly walking through the pages of story books, living the dream and seeing things with my own eyes that I had heard/learnt  from my school teachers, read and absorbed in the many years that had passed since I left school.  Even the languages I had learnt all those years ago still served me quite well when we ventured out on our own into shops and cafes in Germany, Austria and France.

We arrived home on October 10th.  On October 11th I rang my local Dr only to find that he was booked though till October 16th. I have only just realised the coincidence of that date now that I am writing all this down.  That was my late mother’s birthday.  Had she lived she would have been 91. So it was on her birthday that I saw my local GP and he confirmed that the frozen pea should be inspected by a specialist.  He said he would do a referral to a Dr at Boulcott Clinic in Lower Hutt, over an hour’s drive (and over the Rimutakas) from our house in Carterton.

That night I told Peter I had been t the Dr that day and that I had a lump on my boob.

I waited and waited for a letter to come from the clinic.  While I had managed to obliterate the lump from my mind while we were on our trip the wait for that piece of paper from Boulcott Clinic with a time for an appointment was agonisingly mind numbing.  On October 25th, the day of our 43rd wedding anniversary I rang the Boulcott Clinic.  They said they had never received my Dr’s referral!!! I rang my Dr and the nurse there confirmed that t had been sent on the same day as my last visit.  So I rang the Boulcott Clinic again.  The nice lady on the end of the phone said that I would have to have a mammogram before I saw Dr Carl Dowle (who was in Sydney at the time).  She made an appointment for me to see Carl Dowle on 1 November and I tried to make one with Pacific Radiology some time ahead of that date.  My explanations of the urgency seemed to count for nothing in the eyes of the Radiology clinic.  They didn’t have a spare appointment for me.  I called back the lady at Dr Dowle’s office who arranged it for Monday 29th October.

I’ve had the government provided free mamograms since they were available and at 63 I was looking in the face of being phased off the system at age 65 as I would not be considered at risk of getting breast cancer past that age.  But there I was on 29 October in the clutches of the mammogram machine.  I don’t think a man could ever conceive of the embarrassment and discomfort of a mammogram. I don’t know what the definitive test for prostate cancer is, but I am sure it doesn’t involve squashing a penis flat between two plates of an X-ray machine.

There were cheerful noises while I was having the wretched experience.  They thought it looked like a skin lesion. That brightened my day considerably.  I thought that perhaps everything would be OK.  A skin lesion was nothing compared to breast cancer.

 

About Me

My name is Sylvia Maunder. I am 63 (just). I live in a lovely rural township in Wairarapa, New Zealand called Carterton.

I have been married for 43 years to my husband, Peter.  We have three fantastic adult children, Simon (married to Keri), Frith (married to Jason) and Maria (about to marry Greg).  There are also six grandchildren, three for both Simon and Frith.  Life should be grand.

In 2006 my life was turned upside down when I was diagnosed with Coeliac disease and I had to immediately adopt a gluten free diet.  I was given the diagnosis the day before my 57th birthday – just as well I hadn’t baked myself a birthday cake that year.  I spent my birthday that year going through my pantry tossing out anything that had wheat, rye, barley, triticale or oats in it.  Five big rubbish bags of food and the containers that it had been in went to the tip and what was salvageable went to work to be shared among those whose ordinary lives included those everyday items with no ill effects on their health.

While there are some things from the world of wheat that I really miss, I have pretty well come to terms with it now and can exist quite happily in the gluten free world.  I just wish we weren’t charged so much extra to be able to eat healthily, though.

I was brought up in Christchurch, an only child – something I have rued all my life, but there was nothing I could do about it so I just had to get on with it.  Our neighbourhood, is not and was not flash.  Lower socio-economic it would be tagged today.  My father, for much of my life was ‘the local law’. He was a traffic cop and in that neighbourhood it was pretty dire, growing up as the child of the local cop. I was teased and bullied constantly.

Outwardly I grew up as any normal kid, but inside the house, or rather outside it,  at the local RSA or The Bower Ave pub on his days and evenings off, my father would drink away the family finances and come home, not raving mad but drunk enough so that you shouldn’t cross him. He often used to hit my mother and wasn’t beyond using too much force with me either.  They weren’t the sort of stories you spread about the local cop.  He used drink to bury away his war experiences, and my mother retreated into mental illness as a way of escaping the treatment meted out to her.

I was bright at school but never bothered with a university degree as I was so desperate to leave that life and start a new one where drink and mental illness wouldn’t define me. So I left school at 18, left Christchurch and went to work as a public servant in Wellington.

The going was pretty tough for a basic grade public servant in those days, but I managed to get by and my life grew richer (and I don’t mean monetarily) with the addition of  friends, a husband, children.

Two years ago, as step 1 in the path to retirement Peter and I sold our business, and our Wellington house, and moved to Carterton.

And, why am I writing this blog?  Well I just read an article in Pink magazine about how therapeutic it was to write one, so here’s hoping, and if anyone else finds it helpful to read it,God Bless and I wish you a successful journey.