Tag Archive | radiotherapy

4 years on

Over these past few years I have attended appointments with radiology for mammograms and bone density scans, with my surgeon, and now his successor, and with the oncologist at their various places of business. I have religiously taken the medication I have been advised to have, despite some side effects I could really do without. And I take the medication that is supposed to reduce those side effects. It does, a little.

I have had all good reports from the medical people thus far despite a bit of worry about my bone density. Next month I have appointments with the bone scanning machine and the surgeon. But I have now reached a state of mind where, after a few hiccups along the way, I am finally reaching a point where life is really good again and I just want to live it and not be defined by being a breast cancer survivor. I must admit that that has been the way I have seen myself through these past 4 years since my radiotherapy ended. The reports next month and next year will be fine. I can get along with life, and almost pretend the cancer didn’t happen.

I was almost right back to square one when a routine colonoscopy in December 2014 showed a reasonably large tumour growing in my bowel. After consulting with another surgeon I was booked to have the tumour removed in March 2015. I turned up at the hospital at the appointed time and date. The next morning I was wheeled in to theatre at 8am. At 8.10am I was dead. But it’s great that I can be here now writing to you that I am still here. I was brought back to the living with the normal TV type drama of CPR by hand and with paddles, and put into an induced coma while they investigated the cause of my death. At first a heart attack was suspected but after a workover by Wellington’s premier heart surgeon my heart was found to be healthy. I had, instead, suffered a huge anaphylactic reaction to the anaesthetic.

When I was brought out of the coma I was amazed to learn that I wasn’t waking up after the expected operation, but many more hours later in the ICU having not been touched by a scalpel. Later the anaesthetist told me I was the first such case he had had in 35 years of practice. I’d made history at Wakefield Hospital apparently, a Medical Journal article in the making.

Recovering from that CPR was the most painful time of my life, apart maybe from childbirth. It hurt to breathe, to laugh, to cough, to wash myself in the shower, hanging clothes on the clothesline – a joke.

Eight weeks later I had allergy tests at Wellington Hospital which revealed which ingredient of the anaesthetic I had reacted to, and one other as well.

I was then cleared to have the surgery again. The tumour was actually growing on my appendix and had pierced my bowel to find more room to grow. The appendix and tumour were removed along with a small section of my bowel. A lucky escape as it happens as the tumour was pre-cancerous.

Since that episode I have had a number of much more minor incidents mainly resulting from falls where I have been taken to hospital for checkovers for more serious injuries but, fortunately, there were none. I have broken one small toe, three times in about four months last year. But that is all behind me now.

Since I moved to the Wairarapa I have have been cultivating a new hobby of card making. My hobby kept me sane during those long weeks of radiotherapy when I spent my time at Margaret Stewart House in Wellington. It still does. I become wonderfully lost in it and at the end have the sense of achievement having made something aesthetically pleasing. My art teacher at school told me I didn’t have an artistic bone in my body. I was a lost cause. I still can’t draw, but I can create a pleasing card or two.

So I am going to end this blog now, and start a new chapter in my life and try to make a bit of pocket money from my hobby. New Chapters in my blog life will be about life only on occasions, but mostly about my card making, Sylvia Stamps Up – Crafting is the best medicine.

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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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.