I had a call last Friday advising me that the planning session for my radiotherapy at Wellington Hospital would be on Monday 14th at 11am. That was followed up on Saturday with a leaflet advising that the session would be 1-1.5 hours long.
I thought that I could manage this on my own and from what the oncologist had described it didn’t seem like a session where Peter could have provided much support or have been involved in much decision making. And, given that it was the first day back at work after the Christmas holidays, we decided that he would go to work and I would do this one on my own. So yesterday Peter and I drove down to Wellington. First stop was the office in Karori and then I took the car to fill in a couple of hours between then and the 11am appointment. The first stop was my favourite clothing store in town where I bought some more shorts, befitting the weather here in the Wairarapa rather than what it was in Wellington yesterday.
I had been given quite precise instructions for parking my car, by the woman who had telephoned me about the appointment, either the underground car park under the hospital. I hadn’t even known there was one but it incurred a fee, so I decided on the other option which was to park in the Cancer Society car park across the road from the hospital with no charge, having first registered with the main Cancer Society Office alongside the car park. Being a little unfamiliar with the layout in a particularly busy part of town I drove by first and having also discerned, at that point, that all the parking anywhere near the nicest cafes was already taken I settled on going to the McCafe further up the road for a coffee while I waited for the time to pass before my appointment. Later, fortified by the coffee and a Facebook chat with Val, a friend already undergoing radiotherapy treatment for breast cancer in Christchurch, I moved back down the road into the Cancer Society car park, registered and then waited an age, in the rain, for the pedestrian crossing lights to allow me to cross the road. I’m sure it kept me waiting deliberately to make me flustered because the time was ticking away and, of course, I was getting wetter and wetter. I arrived with about 1 minute to spare and, inevitably, on a first visit, had to fill out a couple of forms.
They were so prompt that I hadn’t even filled the first form before I was called away, and given the lowdown on what was to happen during that appointment. Val’s last message to me before I left McCafe was “Kia kaha, wahine toa”. I was familiar with the first three words but not the last one. Sorry Val but I had to Google it to find out what it meant. For those who are not familiar with the Maori language the expression means “stay strong, warrior (or strong) woman”.
Well as young Dana very carefully went through what was going to happen at the planning session, step by step, I became less and less strong. In fact I went into complete meltdown. By now, of course, I am in the public hospital system and removed from the slightly more cloistered existence at the privately run Boulcott Clinic and Hospital. One of Dana’s first questions was did I mind having student radiographers present? Mind? Sorry, this is the woman who hated having to undress and stand in an examination room in front of a strange male doctor with my breasts exposed. Throughout this whole process, that first visit to the specialist, the subsequent biopsies, the surgery, the oncologist appointment, and now this planning visit, the rights of the patient which I had read on many occasions as a patient in Bowen Hospital (another privately run facility in Wellington) kept coming back to me. More particularly is how they are completely violated by this diagnosis, disease and now the treatment. In fact, now that I look back for the right wording I find that these rights are enshrined in a document put out by the Health and Disability Commissioner. The first three (of ten) are:
You should always be treated with respect, including respect for your culture, values, beliefs and personal privacy.
No-one should discriminate against you or push you into doing something or making a decision that you are not comfortable with.
Your care and treatment let you live a dignified, independent life.
For me the key words that kept running though my mind were “personal privacy” and “dignified life”. There are already so many different people who have gawked at my breasts in a professional capacity over the past few weeks and here I was about to expose myself to quite a few more so that they could size me up for the appropriate treatment, that the thought of having student radiographers present as well was just the dizzy limit. I knew it was my right to refuse and I did, but just the question completely undid me. Here it was again, more and more people stripping away every ounce of personal privacy and dignity that I had ever cherished.
Now, any young Mum will know, how precious those two things are, as children constantly burst in on anything and there is nothing you could do about it. As mine grew up I decided that, however silly it might seem now, the last bastion of my privacy was my handbag. My whole life used to be contained in my handbag and having its contents raided or strewn around the house was a sure fire path to extreme ire on my part. Fortunately, over time, they grew to respect that tiny bit of privacy that I clung to.
Here, there is absolutely nothing left that I can cling to. Privacy, dignity just don’t exist in this ghastly process. The further Dana went with her very careful and detailed explanation of what was going to happen yesterday, the further I disintegrated. I was supposed to have my mug shot taken so that they knew they had the right person under the machine once treatment begins. I refused that offer three times because I was such a red-faced, red-eyed, teary mess. When I eventually left they still hadn’t taken it.
Finally the explanations were over and I was allowed to disrobe into one of these hospital gowns that they can undo at the shoulder and completely expose your breast/s and then was positioned under the machine. Finally came the last straw, three tattooed dots on my chest. For me the ultimate indignity – who can tell. I have suffered so much loss of personal dignity I feel my essence has been ripped away from me. I now no longer know which indignity they impose is worse. Every one is just one more humiliation heaped on another.
The young oncologist who seems to have something akin to cerebral palsy, dismissed these three dots as inconsequential. I would hardly notice them, he said. Now that I have them I know that, but I also know that they are there, that I did not want them to be there and that I don’t want them to be there for the rest of my life. It doesn’t help that I can see one as soon as I look down my chest. Its fine for a male to dismiss them as inconsequential. For me they are a further invasion of privacy, one more humiliation. Of course, for him, they are inconsequential. He’s not stuck with them for the rest of his life. I am already stuck with a disfigurement my husband thinks is a mutilation, and all they want to do is stick tattoos on it, well around it. Not my idea of living a dignified life.
Then there was the CT scan to do. Another observation which I have noted whenever one has an Xray and now even more during this process is how all the staff retreat to another room while you are passed through a machine that is passing damaging rays thought your body, and later on for 6 weeks I have to have this intense radiation treatment with my breast exposed at close quarters to a machine that they leave the room to escape!
I can, apparently, have the tattoos removed for free, after the treatment by the Caci Clinic in Thorndon Quay, in Wellington. But, guess what, it takes another three to four treatments and how many more people do I have to expose my breasts to.
After it was all over, Dana had determined that I needed to speak with someone else, strangely enough not a social worker type person but another radiographer, one who will apparently be involved in my treatment. I was introduced to so many young women yesterday (I’ve refused the ministrations of any further males) and apart from Dana I have forgotten every name. Her name may have been Jenny so I will her call that until we meet again and I find out how badly the effects of yesterday’s visit have obliterated the more mundane things in life like peoples names.
Jenny wanted me to explain what was wrong. What a stupid question. What’s wrong is that I have cancer and everything about the supposed treatment which hopefully gives me better odds of surviving longer than 10 more years is stripping away the person I have strived to become over the last 63 years and leaving me with nothing that I recognise any more. What will be left of me to survive that 10 or more years. Certainly not the person who grew up in a difficult childhood in Christchurch, who married a man called Peter and brought up three children to adulthood, who worked and ran a business, who went away to England and Europe a few months ago.
Jenny thinks, and she could be right, that all the things which have gone on in my life since my diagnosis and surgery, such as having family in the house, the MIL’s 100th birthday, Christmas, the wedding, and the eventual departure of the family have all been distractions which have allowed me to put all that has happened to me into a convenient corner in the background of my life and now that it is all over, the family bit and the wedding, I am being faced with the enormity of it all, all over again. So am I back to being that person right at the beginning with the Cancer brain?
My bathroom mirror is quite large, large enough for me to see the mess that was once my right breast and to see those damn dots. As I showered this morning I sobbed and sobbed. It wasn’t just the tears that let rip, it was all the humiliation and anguish. Well maybe not all of it, because I haven’t been able to write this without going through another half box of tissues.
We had another great family Christmas and I was really happy that we could have family at home again this year, albeit slightly fewer than we had had last year, but I don’t know whether I could have coped with that number all at once again this year.
Cameron and Jamie were awake at a really reasonable hour considering what I remember of their father and his sisters at a similar age. But Caleb was ready for a good sleep and he had it, leaving the older boys champing at the bit waiting to open their presents. Finally Caleb woke and the ‘opening’ could begin and there was a lot of fun. But Jamie had developed a temperature and Keri and Jamie ended up spending most of the morning in the Emergency Room at Masterton Hospital till they had checked him out for meningitis. He finally came home (cleared of meningitis but suffering from a virus) and joined in with the others but Christmas day 2012, won’t be one that goes down in Jamie’s memory banks for the right reasons.
Christmas dinner followed at a suitably late hour and we didn’t need dinner, so after a busy morning the evening was relatively relaxed.
Following Christmas the rest of the family started to arrive for Maria’s wedding on 4 January. On 27th December the bride and groom, Maria and Greg, arrived and I drove down to Wellington on New Year’s Day to pick up both Frith and her three children, and my Mother of the Bride Dress. From then through to 4 January is pretty much a blur of getting ready for the wedding. a girls lunch out, more mundane things such as picking up all the wine, buying the beer and other beverages to be consumed on the day and finally on the day, having hair and makeup done and getting ourselves and everyone else ready for the occasion. There were a couple of minor hitches such as leaving the wedding jewellery, including the precious wedding rings, in Napier and one of our grandchildren vomiting in the the back of our car the day before the wedding. The same car was due to be the bridal car on the wedding day.
With the exception of the Father of the bride, the Bride and bridesmaids most of us arrived at the venue courtesy of a hired coach, which started at our place and made two more stops in Masterton picking up guests, and the bridegroom and his groomsmen. Despite the early weather predictions the day was absolutely perfect, in every way, and even a couple more glitches such as my forgetting to get some of the beverages that were tucked away in our fridge at home to the wedding venue, weren’t even noticed, except by me when I remembered what I had forgotten.
With the wedding over there was a family lunch the following day – a chance for all Greg’s English relatives to meet we Kiwis on a more informal basis, and the weather proved perfect for the occasion again, although the some of the English may have been feeling the heat (28 degrees C) a bit having come from winter in England.
The next day (6th) Simon and his family left and on the 7th, Maria, Greg, Frith and her children all left and after having 11 extras in the house for the week we were suddenly reduced to just the two of us, and the cats, again. The celebrations had finished, the holiday period was over and it was time to face up to reality again. For me the reality was that I had an appointment with the Oncologist on Wednesday, (9th).
I had been forewarned by the breast nurse at Boulcott that the Oncologist I was due to see was a very brilliant young man in the field and one at the forefront of medical research in New Zealand, but that he has a speech impediment. While we were in the waiting room the young man’s nurse came out after we had been waiting for about 25 minutes and told us the same thing, and to look to her for guidance if there was anything we didn’t understand.
I had thought I was about to meet someone with a marked stutter/stammer but the young doctor seemed to suffer from more than that, something more like cerebral palsy. Obviously his mind was not affected by his affliction but the whole consultation process was a bit more drawn out than it might have otherwise been as the palsy not only affected his speech and my understanding of it, but also the speed with which he could write notes and draw diagrams.
I must admit that I had been a bit sceptical about why I should have to put up with this 6 week divorce from my family, home and the things which make my life a happy place. If the cancer had been removed with clear tissue all around, and the lymph node showed no signs of cancer having travelled elsewhere in my body, why did I need this lengthy treatment. Its all in the name of reducing the likelihood of recurrence apparently. My chances of survival go up to 90% (from 70%) if I have the radiation therapy than if I don’t. He explained that the first 4.5 weeks the whole breast is irradiated and the last 1.5 weeks they concentrate on the area from where the tumours were excised. It still seems like overkill to put up with for 6 weeks but I’ll put up with it I suppose, in the interests of more family Christmases and other celebrations.
The side effects don’t sound like a bottle of laughs either. Lung tissue gets damaged, the whole breast will suffer from a degree of sunburn and there is the fatigue associated with the whole process. Fortunately, being my right breast there is no danger to my heart, and I am glad of that small mercy, at least.
So now I am waiting for a call from Wellington to go and get ‘measured up’ and to get the tattoos, which I had thought wouldn’t be necessary but the titanium I have inside my breast is only a marker for the last 1.5 weeks treatment! I then have to wait another two weeks after that for treatment to begin, so I am not likely to get into it until the last week of the month by the sound of things. More waiting and more anxiety. I discovered yesterday that while I can openly admit, without tears to the fact that have breast cancer, when it came to having to repeat my whole history for this period of my life again to the young doctor, I could not get through that first anxiety ridden 6 weeks through October/November without tears falling again.
So as a result of the long wait I have agreed to officiate at two Athletics Meetings on 25th and 26th January, one in Wellington and one in Masterton. Neither job should be too taxing and it will take my mind off the unpleasantness of the weeks to come for a while. Hopefully I will have my life back to be able to officiate at Nationals in Auckland at the end of March.
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.
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 🙂
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.
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”.
The cloud from when I arrived at the hospital this morning has dissipated into wisps of high cloud. It’s breezy but, for Wellington, quite a glorious day, especially for the Hobbit premiere, and altogether far too good to be in hospital recuperating from an operation
Ive had to many surgeries over the past 10 years. The pre-op procedure is almost becoming routine. With that done I was wheeled off at 9am this morning. They told me they were inserting a needle with a ‘light’ sedative and that was the last thing I remember till I woke up in Recovery. The surgeon is confident he has clean tissue all around the chick pea so that is good news. As for the node biopsy that will have to be put through all the tests and I will find out next Thursday what the results are from that.
i haven’t shed a tear since Peter left this morning.
So here I am in my hospital room writing a blog. There’s a little pain but the policy here seems to be to keep me well dosed up with painkillers to keep me as comfortable as possible. I am a wuss so I am quite grateful for that.
It’s actually altogether far too hot to be in hospital. Must be a good sign that I can sit here and complain about the sunshine rather than pain or the disfigurement that I can’t really see yet. (I am still in one of those horribly fashionable hospital gowns.
After the rigours of the past weeks I decided that last week would be my pampering week. I had a facial, a pedicure, my hair done and my nails done. Just for good measure I also had my eyes tested. Reading things on my screen has become more difficult over recent months. I need new specs!!
On Friday I realised that only had a few days left to compete my Christmas shopping. So after some advice from Frith and Keri I spent the weekend shopping in Masterton, looking for toys I had never heard of before. I really ought to watch more kids TV or play computer games to be an up to date Grandma. I finished off with a trip to the Westfield Mall in Lower Hutt on Monday. So I have the grandchildren mostly sorted but as for the rest…………
My trip to Lower Hutt was punctuated by calls from the Breast cancer Nurse and Boulcott Hospital, the upshot of which was that my arrival time has been out back to 7.45. Even so it still means leaving home at 6.30am.
Yesterday I had appointments with the massage therapist and chiropractor and also to go back to the Cancer Society office to pick up their breast care pack. It was filled with yet more reading matter but also practical things to get me through the next few weeks and a small teddy bear hugging a pink heart with the pink ribbon symbol embroidered on it.
This time I managed the visit to the Cancer society without the demon that had accompanied me the week before, although the tears were ever at the ready.
Back home again my late afternoon was filled with calls and emails from friends and family wishing me well for the operation and treatment to come.
My good friend Cynthia had wisely suggested dinner out that evening. That seemed like a good idea and the last bit of pampering before the operation, to say nothing of the fact that it was also the last meal of any sort before the operation. So we made a trip to The Tin Hut at Tauherenikau for a very nice ‘last supper’.
Even though I refrained from alcohol, when we returned home I Felt I was running on adrenalin again and not at all ready for bed. Fortunately Simon called and whiled away another half hour with me on the phone. Shortly afterwards I went to bed and went to sleep sitting up with my book unread. However I was well awake nearly an hour before the alarm was due to make its early morning summons.
The frozen pea feels more like a chick pea now.
As young mothers, when the constant company of babies and toddlers and the endless chores associated with bringing up a young family, and when things start to go slightly awry, it’s often attributed to ‘Baby Brain’.
At my age when I start forgetting people’s names or where I put things, Baby Brain becomes a “Senior Moment’. Now that I have that dreaded diagnosis of Cancer, I think my senior moments are metamorphosing in to periods of Cancer Brain. I know I’m doing things that are just not me, but I feel almost powerless to change the particular chain of events I’m caught up in at a given time. And I know I would have behaved completely differently had I been faced with similar situations prior to diagnosis.
One of the comments made during my early morning Facebook chat with my friend in USA about her sister bursting into tears at her inability to do up a bra strap made me think twice. I know that at present, and before my diagnosis I can be irritable about not being able to find the right hook behind my back even without the extra bother of an incision and stitches in a wound under my arm to contend with. Forewarned is forearmed, I thought, so I set off to Masterton to purchase a front closing bra without underwiring, to tide me over the recovery period after surgery.
I thought I could be strong, walk into the Lingerie shop, and tell the shop assistant I had been recently diagnosed with Breast Cancer and did they have a bra suitable for recovery after surgery. I might add that this particular store is on the Cancer Society list of recommended stockists of specialist lingerie for women with breast cancer. Well I walked into the lingerie shop, but then the strength I thought I had mustered together completely deserted me and I was in tears before I had even uttered my first sentence. Cheryl, the shop assistant was absolutely lovely. I’m sure she probably has a few idiots like me walking through her door on a moderately regular basis, and tissues were quickly produced along with hugs. Then she told me she completely understood as she has been in my shoes just last year. She had had breast cancer, radiotherapy and even chemotherapy as she had another medical condition which complicated the choice of drugs for her treatment. And there she was looking lovely and able to relate her tale with complete equanimity a year or so later. We chatted some more and she persuaded me that I should make contact with the people at the local Cancer Society, particularly the nurse. So with my purchase made I went back to my car and tried to follow her directions to the Cancer Society.
I eventually found the Cancer Society premises at the end of a short lane of purpose built office units occupied by various businesses. The Cancer Society Offices occupied an L shaped formation right at the far end from the street entrance. I parked the car and walked towards an office labelled ‘Information and Support’ or something similar. The other one was labelled ‘Office’, and with the two separate labels I thought perhaps one shouldn’t be bothering the office people and that the Information and support one was definitely where I should be going. But the door was closed, as in locked with no one visible behind the glass façade. If my normal presence of mind had been with me I would have just gone and knocked on the door of the Office. But I didn’t. The tears welled up and flowed again. I couldn’t even move myself to go back to the car. I just stood in front of the door reading and re-reading an out of date poster with all of their programmes for 2012 listed on it. The slightly logical part of my mind thought that at mid November perhaps a 2013 list of events should have been promulgated by now. But all I could do was walk up and down past that closed door. I don’t know now, whether it was fear, shame, shyness, all of the above or more factors that I can’t even recall now, just a few days later, but I was rooted to the spot, well almost, and felt powerless to go anywhere else, even back to my car and down the driveway again. What was I thinking? I don’t know. Was I even thinking? Cancer brain, I can’t remember anything but being unable to move away from that door. Eventually someone from the office saw me and opened the ‘Office” door and invited me in. Even then I was still rooted to the spot.
I don’t know what eventually made me move but I did. The lady gave me a glass of water while I explained why I was there. She was savvy enough to realise that I already had information overload and just gave a bare minimum one slip of paper an the card of the nurse I had supposed would have been behind that closed door. And after I had, again, regained a modicum of equilibrium again I drove home.
I look back now, only days later, and can’t imagine myself being so stupid and acting so illogically and I can only put it down to the inner turmoil that I attribute to Cancer Brain.