Archive | December 2012

Four little kisses

Once again I play the waiting game. This time its waiting for the wounds to heal. The one where the sentinel node was taken is doing quite nicely but the other one where the larger excision was made is taking quite a bit longer to heal. The bruising has almost subsided but I can still see the tell tale sign that the radioactive die is still in my system. Just as well I am not travelling overseas for my Christmas holidays.

In recent days I have had a letter from the local DHB presenting me with an appointment to see the Radiotherapy Oncologist from Wellington, in Masterton on 9 January. I have to admit that the thought passed my mind that that larger wound is taking so long to heal it might not even have healed by the time I see the Oncologist! Again the waiting is one of the worst parts of this whole experience, making the little things seem to drag on so much longer. On Friday the Wellington DHB rang me up and offered me an appointment to see the same person in Wellington on 7 January. I told them that I had already had a letter from the Wairarapa DHB with an appointment for the 9th, which was met with a little embarrassment on their side. Silence ensued while they spoke with the Oncologist who said we should stick with the original appointment on 9 January. Just two days longer to wait than if I went to Wellington.

But Christmas is almost upon us and Simon (my son from Auckland), Keri, his wife and their three children, Cameron 7, Jamie 5 and Caleb 3 arrived on Thursday 20th to stay with us for about 2 weeks, or at least until after Maria’s wedding. The house is certainly a lot noisier. Last night at the dinner table next to Jamie, who is either eating or talking at about 100 decibels (or should I say, shouting rather than talking). Gentle reminders that I was right next to him seemed to have an effect for all of about 5 seconds before the decibels were again going through the roof.

Our scaredy cat, Macy is sinking into paranoia. She can’t cope. The slightest noise from any of the more recent inhabitants of the house has her running for safety either under our bed or under the duvet cover. As long as we can’t see her she doesn’t exist, she thinks. We have to coax her out to eat food. She doesn’t dare go to her normal eating spot in the kitchen. Too many noisy children out there. Buffo is more laid back and suffers the ministrations of the children with very little rancour. He’s had the odd swipe but always with closed paws. But yes, he retreats to our bedroom or outside when he’s had enough too.

Yesterday,we all piled into our cars and travelled to Levin for my Mother-In-Law’s 100th birthday. She had cards from the Queen, the Prime Minister, the local Member of Parliament, the local District Council, as well as many other friends and well wishers. There were 50 people there and while the great grandchildren had a lovely time getting to know other young people they have never known of before, but who were still their cousins, once removed. On the other hand my mother-in-law seemed somewhat overwhelmed by the occasion. She spoke with me on 4 occasions not really realising who I was. But no offence taken. There were quite a few reasonably close relatives who were in the same position, but it was an occasion that not many will have the pleasure of in their lifetimes.

The one good thing, for me, from that party was being able to face so many people, most of them relatives, admit that I had breast cancer, and talk about it without all the tears, so maybe that side of me is healing rather better than the physical.

At home with the children on Friday evening, I was feeling a bit tired, sat on one of our armchairs after dinner and surrendered to its comforting arms. Very soon I was joined by Caleb who wanted to snuggle on Grandma’s lap. Not normally a problem but as he wriggled, his little elbows were digging into my boobs, right on and near my wounds. I quickly grabbed his little arm and explained that Grandma has been in hospital and that men had had to cut me with knives. It’s a concept he is familiar with as he recently had a spell in the emergency room after badly gashing his leg after running through a glass door. He turned around and with his little finger pointed out on my boobs, saying “hurt there’, I nodded, “hurt there”, yes”, I said. “Hurt there, hurt there” and I agreed that yes it did. Then he looked up at me and said “I kiss it”. And proceeded to lay four little kisses across my sore breast.

A Rare Laugh

I woke up totally out of sorts yesterday morning, jumped on the computer and ended up being on it for hours before I completed the normal things one does in the morning like shower and dress.

Since the operation I have been wearing the special post surgery recovery bra I bought from Masterton (in the Senior Moments to Cancer Brain chapter). I laundered it once in the bathroom sink and dried it overnight on the heated towel rail, but I was desperate to give it a proper wash. So yesterday was the day, but I only had the one of those bras, so I had to try one of my normal ones back on for the first time since the surgery.

For all my angst over my changed shape, and I can see a definite difference, I put this bra on and the swelling is still such that I more than filled the old bra and I guess, outside my clothes, no-one would have noticed the difference, for a while yet anyway. I didn’t know whether to laugh or cry, so I had a laugh. Crying can come later, for this part of the grief anyway. I had already shed more than a few tears in the earlier part of the morning when I was feeling out of sorts.

So, fortified with the notion of a near normal shape, I ventured out, with Peter to do the supermarket shopping and then later in the afternoon to the local New Rags Market, a Christmas showcase for local arts and craft, and I enjoyed spending a little bit of money on entirely frivolous things, although there was a bit of Christmas shopping slotted in there too.

This morning I actually managed a sleep-in – two hours later than normal, although the last couple of hours were punctuated by pings from Peter’s Ipad as he played on his new Sudoku App. I guess he must have solved quite a few of them judging by the number pings 🙂

Post-Op visit to Surgeon

Given the seriousness of the disease, “Cancer” and the enormous emotional upheaval with which a woman is faced when the word ‘Cancer’ is prefaced by the word ‘Breast’ everything seems to be over and done with so quickly at this stage anyway, but my mind still reels from it all.

Yesterday was the appointed day to visit the surgeon in Lower Hutt again and have the results of the pathology on the tissue removed from my breast – there, I’ve had to admit it and lose the word ‘boob’ – and from the Node Biopsy. After Peter and I had had breakfast I fiddled with the packet of things I had received from the Cancer Society which has now become intermingled with the material I received in the Cancer Pack from Boulcott Clinic. There is one booklet in there which I have not been able to face. Its called ‘After Breast Cancer Surgery – Looking Ahead’. I’ve had several attempts at reading it and the only part of it I can read without tears welling up as I try to read, is the part on Radiotherapy.

It’s an Australian Cancer Society publication I can’t fathom why I can’t face this booklet but even as I prepared to go to the post-op appointment I still couldn’t read it without great big tears rolling down my face and dripping onto my clothes. I had thought that the feeling of relief I felt after the surgery might have translated into a bit more self assuredness and a lot less of the tears and tissues. But no. I had to give up on it again and just go do something else to while away the time before we left to go to Lower Hutt. I had thought that I wasn’t even too worried or anxious about the visit but the tears and tissues might have indicated otherwise.

When we arrived at the Boulcott Clinic we were ushered into to see Carl Dowle after a short wait. Straight down to business, he told us that the tissue removed from my breast had about 2mm of clear tissue all around it and that the node biopsy had shown no evidence of Cancer cells. Hooray for something. It should have been a great relief, but it wasn’t, because in that message he also told us that he had, unknowingly, removed three tumours!! The biggest one, the frozen pea that grew into a chick pea, the one I knew about, was 18mm in diameter. But there were two others, one of 11mm and one of 2mm. I can easily see how one would miss removing something only 2mm in size and I can understand that it would have been easy to miss seeing it on one of the numerous mammograms I had had prior to the surgery. But what absolutely amazes me and frightens me is the fact that the mammogram machine and the surgeon both managed to miss the fact that there was another malignant tumour 11mm wide growing in there, when there had been all that kerfuffle about the two areas of calcification which turned out to be benign.

So while all that is running round in my brain the surgeon has moved on to the statistical probabilities of my likely survival with a 6 week course of radiotherapy and whether that should be followed up by Hormone therapy, and if so, which one. The favourable results in the pathology report rule out any necessity to consider chemotherapy as a treatment. I had expected that to be the case once I heard the results of the report but the relief I thought I might feel never eventuated. Those other two tumours are really bugging me.

Apparently I shouldn’t be worried. It’s gone now. Is there another rogue frozen pea growing somewhere else in my breast?

Cancer brain, all the logical and illogical thoughts that race unbidden into one’s consciousness. But am I being illogical? I don’t know. I guess I’ll have to find out in the 5 years of checks which will follow my completed treatment.

For the statistical analysis he used something called Adjuvant Online, a website to help health professionals and patients with early cancer discuss the risks and benefits of getting additional therapy (adjuvant therapy: usually chemotherapy, hormone therapy, or both) after surgery. (I’m learning so many new words throughout all of this. Adjuvant wasn’t ever something my limited vocabulary had come across before.) He entered data into the site on the size of the tumour, but only the biggest one because it’s most unusual, unheard of, not recorded for anyone to have three tumours, the grade and it was a Grade 2 tumour, and various other statistics from the pathology report that elude me now. The website throws back at him that I have a 78% chance of still being here in 10 years time. But of that other 22%, 14% will die from something else, other than Cancer. 7% will have a recurrence of Breast Cancer. My chances of sticking around a bit longer are enhanced by a measly 2% if I undertake 5 years of hormone therapy to repress the production of oestrogen which fuels the growth of the cancer cells, even though the radiotherapy is supposed to kill off anything and everything around the site of your recently removed cancer/s to prevent just that very thing. Yet 7% of women have a recurrence.

He discussed the options of Tamoxifen versus Aromatase inhibitors – more new words. Both of them have some pretty nasty side effects. If I choose to have the hormone therapy and he seemed to be angling towards the aromatase inhibitor treatment, mostly on the basis that the side effects were not quite as severe, but one of the effects is to weaken your bones and become more susceptible to Osteoporosis. Oh my goodness, that’s also something which can be a side effect of Coeliac Disease. I have already had one bone density scan, about 1 year after my Coeliac diagnosis. While I was in the next room having the dressings removed from my wounds by Robyn, Carl was picking up the results of that bone density scan from 4 years ago on his computer. I am stunned that all my records seem to be so readily available. But that was fleeting compared to everything else going on.

I had thought that removing the dressings would reveal the true shape of the new me, but all it really revealed was more sticky tape beneath. The only sutures I have are soluble internal ones. The two wounds on my breast are all held together with steri-strips, one long one on each wound with several more at right angles along the length. The wound where the excision took place is about 10cm long and begins to show that my shape will never be the same without re-constructive surgery, and over the node biopsy the wound is about 8cm long. Not a pretty sight, even covered up with steri-strips. Everything is still swollen and there is a lot of bruising too, but most of the swelling appears to be where the biopsy took place, strangely enough.

So back to the Bone Density Scan. Four years ago it was pretty good for a person of my age, but I have an appointment for another one in two weeks time. A copy will also be sent to the radiologist to consider in planning my radiotherapy. When the appointment with the radiologist will be is a bit in the lap of the Gods as the Christmas Holiday period intervenes in the normal sequence that it should be conducted. Carl, or someone, will also consider it, I guess, when the decision is made about the hormone therapy.

So armed with more information and another load of inner turmoil, well, on my part anyway, we left Lower Hutt and off we went to Wellington where I was to have the second fitting for my Mother of the Bride dress. It looks as if it will be lovely. Zowie had a mock up of the dress for me to try on and for her to tweak where necessary. As I looked at myself in the mirror, all I could think of was whether or not anyone would notice that some of my top half was missing. Its fairly detailed with ruching on the bodice and is a princess line style, so probably will hide the worst, but then when she came to the tweaking it needed pulling in under the bust. She’s about to emphasise what is now my least desirable feature I was thinking. Despite the lovely colour and lovely fabric I feel diffident about wearing it before it’s even made.

The Wellington skies had leaky eye syndrome when I emerged from the fitting. Peter had been off at Animates buying more supplies for the feline inhabitants of our home. Fortunately there was a shop verandah to wait under, but I didn’t have long to wait.

From there we went to the Office Christmas lunch at a pub near the office in Karori, which, last time I had seen it was called The Quiet Lady. Now it’s the Pickle Jar. And was I in a pickle. For the first time I had to confront my workmates with bits missing. Of course, nobody was crass enough to comment. Maybe they didn’t even notice. But I felt as if I had gone to lunch with a bunch of strangers. I don’t feel I am the same person any more, physically or mentally.

Post Surgery

Strangely enough in some ways it was almost a relief to have the surgery done.

A Wide Local Excision – strange terminology that, the verb ‘to excise’ meaning to charge a toll or tax but the noun ‘excision’ seems to be exclusively applied to cutting out a carcinoma, Latin derivations, the Oxford dictionary tells me. I suppose the demon cancer had not only been excised from my boob but exorcised from my mind as well.

I returned home from the hospital the next day with a little package of painkillers to help me through the succeeding few days and several pages full of exercises from the physio to be working on so that my shoulder would regain normal function, after the Sentinel Node Biospy.

The relief was something I didn’t expect to feel, given the disfigurement I know is sure to follow. I came home with the hospital dressings on the wounds. They look absolutely ghastly, having been applied immediately after the surgery. Fortunately they are showerproof so I can shower normally but each time I undress, that mess under the dressings is all to evident, as is the different shape of the post surgery Sylvia.

Whether it was the effect of the anaesthetic wearing off, the painkillers or the massive sleep deprivation during the past few weeks, I have actually managed to sleep again without my brain running off on journeys I would rather not travel, despite the fact that there is an element of uncertainty this week as I await the result of the Node Biopsy. Despite Carl Dowle’s reassuring words after surgery that he thought everything had gone very well, there is still an element of doubt which haunts me.

My days at home have passed quietly but punctuated with calls and messages from friends and family – and the arrival of two bouquets of flowers, always a guaranteed pick-me-up. I have followed orders and taken the painkillers as required, not done anything too strenuous apart from the prescribed exercises.

On Sunday, I finally felt able, emotionally, to reveal the mess of dressings and the new shape that was beginning to become evident underneath, to Peter. Because the whole nipple area has had to be removed I know there will have been no nice place to hide a scar, although the dressings still hide whatever the extent of that might be. I have been more than slightly aware of it ever since I came home and have to come to terms with the inevitable, either a prosthesis or reconstruction at some point – both probably. So as I dressed on Sunday morning I showed Peter the post surgery Sylvia. I expected the man I married, who has an almost pathological dislike of hospitals, to have been more drawn by the bloody mess under the dressings, but being a man, the first (and only) thing that came out of his mouth was, “God, they’ve mutilated you”.