Tag Archive | Margaret Stewart House

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.