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And Beyond…

Today is just a few days past the anniversary of the day I first found the lump (frozen pea) in my right boob.

Readers of the blog will know I have been pretty quiet since the end of my radiotherapy. I went to my first three month checks and was surprised that no-one said to me that I was Cancer free or whatever. So I waited for today – the day when I was due for a ‘new’ baseline mammogram and another consultation with the surgeon to follow.

Peter is away at a conference in Dunedin and I was home alone last night, and until Sunday evening. Despite being desperately tired, sleep was hard to come by. Maybe the build up of tension of the forthcoming day was affecting me more than I thought. I had imagined that I was pretty cool about it all. I have to admit that that thought of the surgically altered boob being squashed flat in the mammogram machine had about as much appeal as a plate of rotten eggs.

I had set the alarm early so that I didn’t have to rush but was wide awake before it went off. I eventually left home to do the hour’s drive with a bit of time up my sleeve as the weather was atrocious and I wanted a bit of leeway for unforeseen circumstances on the trip over the hill to Lower Hutt. There wasn’t much traffic and only a few minor rock falls on the road, so I made good time.

I crossed the threshold of the Radiology clinic with a bit of trepidation, sat down and buried my nose in my Codecracker puzzle book to take my mind off it. Then I was called in for the familiar mammogram routine again. The technician took all the familiar poses and then said that given my history she would do a couple more. “Nothing to worry about”, she said, “I can’t read these things the way the doctors do.” She went out to consult the Radiology Dr, and several minutes later she was back for more. “Nothing to worry about”, she assured me again. So more were done. She disappeared again, came back and told me that seeing I was here and lived so far away did I have time to stay for an MRI. “Nothing to worry about.” So I was led off to another room for the MRI. She pointed out the area of concern on the screen as she worked but I was in a brain fog. It all looked the same to me. Following that, I was finally allowed to don my clothing again, so that I could walk around the hall to see the surgeon, nearly half an hour late for my originally appointed time.

So, in to see Mr Dowle. X-ray images of my boobs were all over the screen when I walked in. With Mr Dowle there is no pussyfooting around. He got straight to the point. The good news is that my right boob is Cancer Free ūüôā Of some slight concern now is my left boob. There is a growth that was present in my 2011 mammogram that has grown bigger. He is pretty sure that is a fibroadenoma.

According to the Breast Clinic’s blurb, fibroadenomas are not considered a risk factor for breast cancer, and they don’t turn into cancer. In extraordinarily rare cases a cancer can arise next to a fibroadenoma and even rarer are cancers which develop in the cells of the fibroadenoma. BUT, they have to first make sure that, that is all it is. And how do they make that diagnosis. More biopsies!

I was so not prepared for that when I left home this morning. Mr Dowle’s Nurse went over to the Radiology clinic and organised an appointment to have the biopsy done at 3.30pm, so I had about three hours to have lunch and shop at the Westfield Mall. Shopping at the Mall is something pretty rare for the country girl these days and was the only bright factor of the day.

And even though the message from this session is so different from that first visit last year I feel, needlessly probably, almost as if if I am on that slippery slope again. I am definitely back to that ghastly week of waiting, waiting, waiting.

Next Thursday morning (5th), they will telephone me with the results, and on Saturday 7th I should be on the redeye to Brisbane followed by the bus to Toowoomba to visit Frith, Jason and the children.

Aftermath

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Today is the two calendar month or 8.5 week anniversary of the end of my radiation treatments. And after that time the overwhelming feeling throughout has been one of ……well, abandonment, almost. For 6 weeks I was down at Margaret Stewart House undergoing daily treatments at the hospital, rushing home for the weekends and back to Wellington on the Mondays. The people I lived with there were either cancer patients themselves, going through what I was, or worse, in many cases, or their support people, generally their partners. Because we were all facing the same unpleasantness in one way or another, there was empathy with everyone you came across. The Radiology staff were sympathetic but not having undergone the treatment they were dishing out, it was more, business as usual mixed with a modicum of sympathy compared to those of us at the House.

And having left the House, all that support, was suddenly gone. I remember feeling, “Well, what now?” Am I cured? Nobody has taken tests; nobody has set me on the track for life as a cancer survivor, or life without cancer, It’s almost like bringing home a new baby, not quite feelings of helplessness, but certainly being overwhelmed. It was strange to have faced the cancer demon, kicked it’s butt, I hope, but look as if nothing out of the ordinary had gone on in my life for the past six months, and set about daily life again.

So the burns are all healed and that’s good. The fatigue that I was assured would be gone in three weeks has not quite departed. It’s a bit of a shock when ,as I did, this morning, having a 10.00am appointment and look at the clock on awakening and find that it’s 9.03am already. The up side is that I don’t need so many nana naps now. Unless I have been really busy I only crash every 6 or 7 days. I am so glad I have made the decision to cut my ties with the world of MaunderSurveying and am no longer responsible for writing up the resource consent applications for clients. I decided that it was one stress I just didn’t need any more. My Wellington desk has been cleared out and now I am free of those shackles I have a weight lifted from my shoulders.

All my free time was great as my family swung into birthday mode in the latter part of April/early May. I may not have posted everything off on time but at least everyone eventually received their personal handmade little finishing touch from Mum/Wife/Grandma.

Another reason I was grateful I never went back to work was the effects of the hormone therapy tablets on my system. I was forewarned that the drug, whichever genus I chose to go on would give me menopausal symptoms all over again. For anyone who has been there and done that, you certainly don’t want to go back and do it again. And you never want it to be ten times worse than it ever was originally either. When the oncologist was explaining the differences between Tamoxifen (normally given to pre-menopausal women) and an aromatase inhibitor drug (normally given to post-menopausal women) I actually chose to go 2 years on Tamoxifen and then 3 on the aromatase inhibitor, of which there are three on the New Zealand market. The Aromatase inhibitors have the additional side effect of increasing one’s propensity to develop osteoporosis, which is also a possible side effect of my coeliac disease. However, fearing that the worst might happen, while on the Tamoxifen I also took his email address and was I ever glad I had done that.

After a month on the Tamoxifen and having hot flushes that lasted a good 10-15 minutes each and made me so hot I was dripping with perspiration down my face, back and front – just as I had been while undergoing the radiation treatment. At night I would wake up several times so hot that I had had also done the job of an electric blanket at its highest setting on my bed. If I just got out of bed and cooled down a little, the bed was still so hot when I got back in that I couldn’t get back to sleep as the bed was too hot, and that was with the most minimal bedclothing ever. I had to stand in the open door and cool off in the evening breeze, if there was one for a good 10 minutes so that I didn’t get reheated all over again, well too soon, anyway. That happened 2 or 3 times some nights I thought that this was sure to calm down in a short time but it just kept on week after week. After 5 weeks I had had enough and emailed the oncologist, who emailed back that I should stop the Tamoxifen immediately and we would discuss the alternatives when he next saw me in Masterton on 8 May.

At that check up I reluctantly decided that I should try one of the aromatase inhibitors and to date there has only been one hot flush, one night sweat, and that has been it for the past week. Long may that situation continue, and I just hope my bones are strong enough already to withstand this onslaught for the next five years.

During the time I was off the Tamoxifen, when I was beginning to feel a bit better about myself, I finally decided to bare all to my husband again. I had had such a shock at his first reaction when he thought I had been mutilated, that I had never bared myself to him again since the surgery. But my mind was beginning to run along whether I should or should not undergo reconstruction surgery and I thought I should discuss that with him before making my final decision. He looked at me and said he didn’t think it was necessary as he would be the only man married to a woman with a smiley face on her boob.

So when I go to the surgeon for a check up with him tomorrow, that’s one subject I can cross off the list.

The picture above is my faithful companion Buffo hard at work in front of the fire during a recent cold snap and below are the lovely flowers I received from my daughter, Frith, for Mother’s Day

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Healing

Dear Blog

I haven’t been here in a while. I have been healing.

I have to say that if there was ever to be a bright side to radiation therapy, for me it was having our elder daughter, Frith, come over from Australia to support, help out, and keep me company over the last week of treatment. I so enjoyed having that week with her, if not the treatment itself.

The last day at Margaret Stewart House was a bit frenetic. Basically we had to clean out and pack up our temporary home for the past six weeks and leave it, bright, shiny and new for the next lot of people who were coming into it the following Monday. I started the day by stripping beds and gathering all the towels etc and did 5 loads of washing and hung it out, and at that stage of the treatment, that in itself was pretty exhausting. Frith made up the beds with clean linen and cleaned out the bathroom.

By then it was time for the last treatment. The last walk to the hospital, the last time I would have to subject myself to the indignity of being pushed into place, arms outstretched, half naked, so that that machine could burn my boob to a frazzle. After that came the last session with the hospital doctor , more dressings in hand and off I went. By the time I left I had dressing in two places, one preventative and the other healing up the one place where the skin had burst. I went away with a plastic bag full of dressings and supplies of the four different ointments/gels I had to apply to various bits of my boob. The craziest thing of all was how the treatment for this disease has been way worse than I ever felt before I had to start out on this journey . I was, and am, more run down by the surgery and treatment for the disease than I was by the disease itself. The relief of all those “lasts” was immense. That done, it was back to the house for a bite of lunch, vacuuming out the room and then we ere essentially done with what had to be done before we left, but in the afternoon, Frith cooked up more meals for me to take home to make the following week a bit easier.

That night we went out and celebrated Frith’s last day with us and my last day of treatment with a dinner at Logan Brown, one of Wellington’s foremost award winning restaurants. Absolutely divine meal, and then, for us, the last drive home, not that we won’t have to undertake the same journey over the hill many times more but going home that night was more special than most other trips we have made.

Waking up on Saturday morning in our own bed, together with our two cats to a brilliantly clear sky and sunny day was just the best feeling. So for the past three weeks I have one by one been able to stop using the great supply of dressings and unguents, and while my boob won’t ever be the same again its finally no longer a hot pink boob sending me into drip mode with almost any move I made. It’s a brown one now – but with out the internal combustion engine it contained before. Some time soon I guess the brown will fade and I’ll be left with just the scars. But now I am into hormone therapy treatment, just one pill a day but the side effects are to give one menopausal symptoms all over again. Oh joy!

The most lasting effect and the one I am finding harder to come to terms with is the fatigue. I was already quite fatigued when I left the House, having almost daily nana naps. My need for those nana naps has not yet diminished and most days I am even sleeping on to 8am or sometimes even 9am before rising for the day, but by afternoons I am just wiped out. All I need do is sit in an armchair and I’m out to the count for 2 hours or more. It’s actually quite debilitating in the way that it wipes out half of my day.

Wisely, I think, I pulled out of officiating at National Track and Field Championships in Auckland which was due to start 6 days after my last treatment. Looking back there was no way I could have given my best at those championships. However, I had agreed to be Meeting Manager for North Island Secondary Secondary Schools, a Track and Field Meeting held in Masterton (only 20 minutes from home) this last weekend. Most of the literature I have been reading has been assuring me that I would be back to normal within three weeks of treatment ending, and I thought I should be able to manage it OK. It was a 1.5 day meeting compared to Nationals being a 3 day meet. The first day of the meet was a bit like the first day of my treatment, one where the most major thing that could go wrong did go wrong and the track programme was eventually running 2 hours behind. The final races for the day were run in the dark. We, Peter and I, our house guest for the weekend, and two other friends who were up from Wellington for the meet, eventually sat down to dinner at 9.30pm that evening. I had actually managed to hold myself together without my nana nap that day but I was not too far off total exhaustion by the end of the evening. The end of Daylight saving gave me a bit extra time to sleep, but I still overslept and didn’t get to the park at quite the hour I had planned. Sunday was the half day part of the meet with the last race due to start about 12.30pm. The major part of Saturday’s problem had been fixed so the track ran much more to schedule but all of the field events were in dire need of officials. Many of the Officials I had had the day before didn’t return, so my attention was diverted more by those events rather than the track, but when they were successfully concluded and there were just 3 track events to run I could feel that I was in danger of losing everything and just had to retreat to a chair and some warmth of the upstairs bolthole for officials. One friend made the comment that she had been afraid for me as I had looked as white as a sheet when I walked in. But for some reason or other lunch seemed to cure my colour, if not the feeling of sheer exhaustion.

In his usual manner Peter couldn’t leave until he had helped pack things away at the end of the meet and we didn’t arrive home till approaching 3.30pm. By 4pm I was out to it in the armchair, and Peter went off and did the supermarket shopping, unpacked it, put the remnants of the night before’s dinner on to heat up, all a few feet away from me, while I slept the sleep of the dead, until my phone alarm went off, 12 hours later than I thought I had set it for, at 6.30pm. I seem to have done little else but sleep for the past two days, but at least today I woke up at 7pm, so maybe the weekend has finally worn off. Just as well it was the last track meeting of the season.

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End of Phase 1

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I have now reached the end of Phase One of the radiotherapy treatment. Phase 2, the Boost stage, is two days old and next week will be the last 5 days of treatment. I am so looking forward to just being able to stay at home and not go to Wellington every week.

Phase One didn’t leave my skin very happy and the fatigue associated with radiotherapy has well and truly set in. I have one depleted boob to which three types of different emollients should be applied on a twice daily basis. I have one cream for a mild itchy area on my rib cage, another for the area of the hot pink boob. Under arm and under boob is a whole other story, with both just being beds of pain combined with a fearful itch with the skin having turned quite a dark brown. I have another gel to be applied there and am on regular painkillers to control the pain side of things. Of course the bed of pain under my arm also coincides with the edge of my bra. I have been given medical pads to insert over that area but am not allowed to tape it in place as the most mild of their sticking tapes disagrees with my skin and at all costs the thing to be avoided is having any broken skin.

Whoever thought this would be a breeze. However, I have to keep reminding myself that I am one of the luckier ones who didn’t have to undergo chemotherapy as well.

Boost therapy means that they now add the contraption above to the circular part of the machine in the previous post and the radiation blasts are now considerably shorter and aimed specifically at the site the tumours were removed from. This contraption concentrates the beam to a point where it is only about 1.5cm above my skin. The have to put a moist pad on me, presumably to prevent drastic burns while the machine irradiates me. Nearly all the measurements have changed now, except the first one.

The first session of this Boost treatment probably didn’t go as it should have. I was sited and swiveled according to all their new measurements, still with arms outstretched above my head. Firstly they didn’t have all the pieces of the additional contraption pictured above, One bit arrived, then the second bit, but there was one bit they couldn’t find. Finally it arrived, a thick lense which was inserted into the bottom of the contraption at the point nearest my skin. Secondly, they had to take an X-ray and then the treatment was supposed to start. After I thought the X-Ray had been taken the therapists dashed back into the room and said that the treatment would be delayed a couple of minutes while they amended my ‘plan’ – just a matter of some “data entry, that’s all”. So after some twenty minutes in this artificially contrived position I was in they finally came back, apologised, and said that they would take the X-ray again and then the treatment would commence straight away. Fortunately, with all the right pieces in place, and the right data in the plan, the second run went rather more smoothly than the first. But I was so relieved to get off the hard table and bring my arms back down beside me.

After the Phase 1 treatments I have felt like a heated fry pan from my waist up for several hours after the treatment. To put it indelicately sweat has just poured off me in rivers. Clothing has stuck to me, how many tissues have I gone through soaking up the rivers off my face. I’ve tried all sorts of ways to cool myself but nothing would work and any physical exertion just made it worse.

The second of these boost treatments was yesterday. So on the day of the second boost treatment I woke up and from the moment I arose there it was all over again, sweating rivers before I had even made it to the bathroom! And I hadn’t even had the treatment for the day. I had a cool shower and that made no difference, went down and had breakfast, all cold with a cold water to accompany it – no difference. I had an early appointment yesterday so went over to the hospital at 8.10am. It’s only a 5 minute walk but I was dripping buckets by the time I got there. Even the radiation therapists were surprised by the volume of it. So much so, that they hastily organised an appointment with a doctor for straight after the radiation treatment. The treatment at least went smoothly, but the beautiful hospital gown was stuck to my back by the time I rose from the table. The doctor checked me out. My observations were taken and noted down on a paper towel!!! But in the end the doctor could find no explanation for it. But there was nothing sinister behind it, she said.

I went back to Margaret Stewart House and packed my bag for the homeward trip later in the day. Because yesterday was my session at the ‘Look Good Feel Good’ seminar, I then walked back to the hospital and took a taxi to the location in Taranaki Street where the seminar was being held. I was dripping all the way and my clothes and tissues continued to soak up the rivulets while I was in the Taxi. I was thinking that there would be no way anyone could ever apply make-up to my face while it was in such a state of drip. When I arrived I was greeted at the entrance by an old friend I had worked with at Bell Gully many years ago. We chatted, and I dripped. Inside I was shown to a long table where (for me) there was an inedible morning tea being served, but at least I had another cup of water. During the morning tea I chatted with another lady whom I had met at the House and dripped more. I was really getting worried by then. Eventually we were asked to take our places at the named spaces around tables which had been set up with mirrors and were laid out with make up and skin care products, specific to each of our needs and/or choices. And strangely enough, confronted with all that (four hours after it had started) I suddenly began to cool off and the drip dried up. I was so relieved.

The Look Good Feel Good organisation is allied with the Cancer Society and gives Women with any type of Cancer, and at any stage of treatment a few hours tuition on how to make yourself look good mainly with make-up products, while you have cancer and ongoing. There was also a small session at the end for women who were undergoing chemo and different wigs/headwear available for them to look at and try out. After a full, personal makeover with the makeup and the relevant tuition we all (about 30 of us) left with over $700 worth of makeup and skin care products. I was lucky enough to take second prize in a raffle as well, so I had a bit extra booty to bring home.

I was expecting the worst again this morning but, thankfully, I have had no repeat of the dripping rivers. Two loads of washing on the line and the weekend can only get better. Tomorrow Frith (our elder daughter) arrives in Wellington to help me through the last week of the radiation therapy, one unexpected bonus of this whole wretched experience.

Half Way

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I am now half way through my course of radiotherapy.

Each day of the 5 days per week I spend in Wellington at Margaret Stewart House is ruled by a machine very similar to the one above. ¬†At approx 11.15am each day I walk from the House to the hospital for my 11.30am appointment. My arms are outstretched beyond my head, the top of the gown is opened to bare everything ¬†and then everything is measured to the precise millimetre from the height the bed is raised, the incline my upper body is at, to where my butt is positioned, even where my legs are, and of course where the affected boob is. The radiologists consult a computer screen against which they check each measurement off. ¬†I can’t see it from my semi-prone position, and anyway I am in a state of semi-undress which would be made worse if I¬†raised¬†myself, aside from which the machine is usually in the way. ¬†

The radiologists scoot off out the rapidly closing doors as soon as they have checked and rechecked my positioning at all points and leave me to the mercy of the machine which gives me four blasts of radiation, two from what seems to be almost underneath me to my lower right, and one with the round part of the machine positioned on a right facing tilt a little to my left. ¬†I feel nothing, but I hate being left alone in the very large room with nothing but machinery which everyone else has no desire to be near and, indeed, they aren’t allowed near it while it’s in operation, for their own safety. ¬†Yet, I am left there at the mercies of its blasts, because it’s supposed to be doing me some good and may be lengthening my lifespan while it kills off cells in my body!¬†

The worst part of my days is, no doubt, well meaning but chirpy radiologists. ¬†Each day I walk in past the reception area, into a changing room and don a hospital gown of the variety that opens at both shoulders. ¬†Sometimes I have to wait for a few, or more minutes while my treatment room becomes clear from the person before. ¬†When they are ready for me, one of the radiologists will inevitably appear, chirpily call out my name and off I go down the corridor to the treatment room accompanied by said chirpy radiologist brightly enquiring how has my day or weekend been and what have I been up to etc. ¬†Sorry ladies, I know I have to be there and you are probably doing your best to put me at ease, but I’m there under¬†sufferance.¬† ¬†I didn’t ask to have cancer. But I do, and the fact that I have it doesn’t mean that I am all that happy to have it. ¬†If there were a choice I wouldn’t be subjecting myself to daily blasts of radiation all the while separated from home and things that make me happy for 5 of 7 days each week for 6 weeks. No amount of chirp is going to erase that. ¬†Please just greet me with a smile and a word of greeting and don’t try to inject false merriment into a situation I don’t find to be a merry place. God save me from chirpy radiologists.

Rant over. ¬†So the effects of the radiation are making themselves felt more than ever now. ¬†In the beginning I was told that my skin would start to go pink from about 2 weeks in and that I would begin to feel fatigued from about 3 weeks in. ¬†Well I have been struggling with a hot pink boob right from day one. Most days you could fry eggs on me. It’s made worse by the fact that most places around the country, Wellington included, are having a warm summer. ¬†I can’t stand to wear an ordinary bra. I am not allowed to wear ordinary deodorants (most of them contain metals). ¬†So I have tried three ‘natural’ ones – one of them just doesn’t work and within an hour of my treatment I need another shower. ¬†The other two have both ended up giving me underarm rashes, and while I have managed to clear one away from under my left arm, the right arm (by the affected breast) refuses to clear up. Nobody has made any comment about it yet. ¬†I almost wonder if its the sort of thing they expect. ¬†

The fatigue has also set in. ¬†I was always quite tired as a result of the Dr’s happy pills and sleeping tablets, but I had been managing to keep on top of it with a nana nap a few days a week. ¬†But yesterday I was in the supermarket (at home) and I had this amazing feeling of the fatigue setting in. ¬†It was almost like a force trying to crush me. ¬†For a short while I thought I was going to have to call Peter and ask him to come and fetch me home. ¬†But eventually I managed to work my way through it, and the checkout, and navigate my way home, albeit minus one crucial item I had gone there for.

At the “House” in the Wellington Hospital Grounds, I have come across all sorts of people from different walks of life who have been afflicted with Cancer in some part of their anatomies (although there are some renal patients there short-term as well). ¬†It’s quite a melting pot but we are all there for the same thing, some to a worse degree than others. While I have managed to get off with a fairly easy journey through cancer, in comparison to most, I still have to have a 6 week course of radiotherapy, where others who have been through worse than me already get off with much shorter courses. ¬†How that works I am not sure, but I am one of the ones in there for a longer haul than most so I am a constant while others come and go. It’s difficult that you find someone you can bond with, talk to, and with, that you could become fast friends with and then days later they are gone and I have to find someone else who’s going to be there a while to befriend. ¬†
Most people there are with a support person. ¬†In my case, it’s Peter, although life carries on as normal for him as he goes off to work just the same each day and I prepare the meals at night, just as if we were at home. ¬†One night this week there were four women cooking in the communal kitchen. ¬†Three of them were there as support persons for their husbands/partners and there was me. ¬†One lady has been through quite a bit with her husband whom I met one Monday morning, and that afternoon he was hoisted out of the House by the fire rescue people and taken by ambulance to hospital, where has has been for the past two weeks. Her husband is, fortunately, mending, and on Wednesday evening she said he felt like a steak for his dinner, and there she was cooking an enormous slab of meat to take over to him in his hospital ward. ¬†The other three of us exclaimed what a marvelous person she was to cook him this extra special steak and walk it over to the hospital, when he had already been given a hospital meal. ¬†She shrugged her shoulders. ¬†I said to her, “S*****, you are absolutely wonderful. ¬†I am the patient here, and where is my support person…….?” ¬†And ¬†I pointed towards the dining room where Peter was sitting, quite oblivious, reading the newspaper, while I was preparing our evening meal. ¬†Everybody in the kitchen just cracked up. However, I have reminded Peter that when the fatigue really sets in he may be called upon to do more than just read the newspaper.