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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.

Everything that could go wrong…..

So today was supposed to be the first day of my radiotherapy treatment. Peter and I drove down to Wellington in time to keep the 10am consult with the Registrar and for me to sign the consent form for the treatment. The radiotherapy session was to start at 11.10am. Just as the radiographer, Claire, appeared to call me to the changing room the power went out. So she retreated and we were left in the waiting room again. A few minutes later the power was restored by courtesy of the hospital generators. Claire came back and explained that there would be a delay as the power outage meant that the machines had to warm up again for half an hour, and then they had to finish the treatment for the person who was in the machine at the time of the outage.

Time ticked on and then the power went out again. Claire had explained that when the power changed back from generator to mains there would be another outage, but this could be in 10 minutes or 5 hours. This second outage was about 25 minutes after the first outage so presumably the machine hadn’t even warmed up for the last person to finish treatment. Claire returned, apologised and asked us if we could go away for lunch and they would call me on my mobile with a time later in the afternoon.

Peter had planned that we would go to The Chocolate Fish Cafe in Shelly Bay. He needed to do some measurements for the Wellington Marathon course and the Chocolate Fish was conveniently right on the course. The menu was pleasantly surprising in that most items had a gluten free option. I ordered a Warm Spiced Chickpea Salad, with Grilled Fish. It tasted wonderful. Peter went off to do his measurements and while he was away the hospital called back with a 3.10pm time for my treatment.

There was plenty of time to return, check in to our new abode at Margaret Stewart House, Room 12 (in the grounds of Wellington Hospital). We had decided hat this was dragging too far into the day and that Peter would return to work, so I came upstairs to our room to work on my cards for a while.

My Coeliac Disease, the reason for the need for Gluten Free food, manifests itself, if my food is contaminated in any way, with an urgent, violent visit to the small room. If I do nothing about it from then on, urgent and violent also become extraordinarily frequent, debilitating to the point where I cannot be any further than about 30 seconds away from the small room. Fortunately I had some medication with me that should stave off the worst effects so that I could remain sociable. I took two of the rapid variety and then had to dash off to the hospital for my appointment.

When Claire fetched me, I explained my predicament, but we agreed to carry on with the treatment. Suitably attired in the fashionable gown I was taken to the treatment room. More grumbles. I retreated to the small room. False alarm – just gas. Back I went and was all measured up onto the treatment table. I was to have an X-ray first, then the treatment would begin. As I lay there I could feel the grumbles returning but decided to stick it out. I heard the click of the X-ray and waited for the treatment to start. But instead Claire came back. She and her assistant had decided that “I was too worried” and they couldn’t get a clear enough image on their X-ray for treatment to begin. Their preference was to do away with treatment for today and to add on another day at the end of the 6 week period.

So here I am in Margaret Stewart house ending my blog for today. Try again tomorrow!

Post Meltdown

Well, after my meltdown on 14th, suddenly I seem to be creating a little storm in my medical world. I have been contacted by or have had contact with more medical personnel than ever before in the 10 days that have passed.

The very next day the local Cancer Society Nurse phoned me to see how I was, and at that stage I could hardly string more than a couple of words together without disintegrating into tears. She was concerned enough to want me to phone my doctor straight away, and promised she would phone back the next day to make sure I had done so. I tried to make an appointment with my Doctor that day, but there was no room, so I saw one of the Nurses at the Medical Centre. She was sufficiently concerned to want me to see a Doctor too. But my original GP had left the practice , possibly because of locally, well publicised, heart problems which ended up in his having to be helicoptered off Mt Holdsworth, after a tramping trip to the summit and having a heart attack while there. Now his place has been taken by his wife (who was also on the tramping trip)! The Nurse assured me that the new Dr was very sympathetic and especially experienced in cancer cases such as mine, and the fact that she was a female brightened me up a bit more too. So an appointment was made for me to see her the following day.

Dr Annie, is, indeed, very sympathetic, and quite worried too, that I might be sinking into a black hole of depression. I don’t feel that I am, but I’m sure that’s what everyone else thinks, just from the recent re-ignited interest in my welfare. What my problem is, I think, is probably due to lack of sleep and I’m an over-emotional sort anyway. Dr Annie was tossing up whether to give me a short course of sleeping tablets “to re-establish a sleeping pattern” or to put me on course of anti-depressants. Thankfully she opted for the sleeping pills, which have been helpful in letting me sleep more but tears will still well up as soon as I start thinking about my current medical situation. Though just not as many or a violently as before.

The rational part of me knows that I probably have the easiest ride of just about any cancer sufferer in that the surgery got rid of the tumours, there was no evidence of spread to other parts of my body and now the further treatment is just a 6 week course of radiotherapy. Easy as!! But overriding all that is this terrible feeling of violation of my body. I haven’t been raped, but I think I can empathise with the sort of grief that a rape victim must feel. Unfortunately I don’t seem to be able to turn off the irrational part of my brain that gives everyone else the impression that I am in the throes of sinking into depression. The other upsetting part that the irrational brain plays on is the sight that greets me when I look in the mirror every morning/night.

Later, the same day I had seen Dr Annie, I had a call from the South Wairarapa Oncology Nurse, a person attached to the DHB, a man!!!!! He wanted to come and see me on Friday (at home). Reluctantly I agreed. Rational brain reasoned that at least he wasn’t going to touch me, but irrational brain shouted “Oh no, not another male”. It was a sort of “getting to know you” session, when he finally arrived more than half an hour late. Rationally I could see that he is quite a nice man but again, rational or not, I just don’t want any more male medics in my life right now. Try as I might I couldn’t bring myself to open up to him at all.

Some of that reluctance, and the fact that I was still tearful throughout the conversation we had, seems to have found its way to a file that, perhaps, the DHB is keeping on me. I only ever came within their aegis on the 9th when I went to the Radiotherapy Oncologist at Masterton Hospital, albeit that he was a visitor from Wellington.

We had a three day holiday weekend with Monday off, and the Cancer Society Nurse called again on Tuesday and made me and appointment to go in there on Monday morning (28th) to see a Counsellor. That, apparently will be ongoing, but transferred to Wellington when I go down there.

I saw that file which seems to be burgeoning rapidly despite what I figure must be relatively few entries in it, when I had a call yesterday from the South Wairarapa District Nurse, coincidentally a friend from Athletics. She, too, came around to see me at home, with the file in her hands, and spent 1.5 hours with me, some of that looking at the garden etc, but she certainly knew how to put me more at ease that the male oncology nurse had. And I could open up to her, tears and all. At this stage what was really starting to bother me was the lack of a start date for the radiology treatment. All inspections of the letterbox this week had revealed only the empty box. No sign of a letter from the Wellington DHB to let me know the start date, appointment times and the duration of the treatment. The 6 weeks figure had been bandied around, but I knew it could vary and no-one had ever confirmed, or otherwise the length of the treatment. Mel rang the Radiology Clinic in Wellington, but the critical person was at lunch! She waited for ages for the return phone call but it never came. But, she said, it had been promised by the end of the day.

That didn’t happen either, but just as I was about to exit the house for a bit of pampering this morning they phoned and said could I come in on 29th. Having already two afternoon appointments, one with the chiropractor and one with my massage therapist for 29th, I had to decline the offer. I really wanted the massage one to get rid of a shoulder niggle before I began treatment where I have to lie still for 5 minutes with my arms outstretched behind my head. While being pampered, a message was left on my voicemail from the Wellington DHB. I returned the call and now I finally have a start date of 31st January, but I have had to get rid of my routine hair appointment so that I can keep it. (Smile). Also our pussy cats are reluctant to use the new cat door we have installed for them, and for my own peace of mind I need for them to be well catered for while I’m gone. We’ve tried shoving Buffo through a couple of times but the message that he could/should do it himself hasn’t penetrated his brain. As for Macy, I can never find her to try shoving her through.

And lastly, just a few minutes ago I spoke with Dr Annie again. She wants me to stay on the sleeping pills and go on a course of anti-depressants, she says just to make me more laid back. “Don’t look at the internet” she said, “I don’t want you to be overthinking things”. So that’s my problem!! She was kind enough to lay that particular problem “in the minds of well reasoned, intelligent, and articulate people like yourself”. If I’m one of those, hopefully I’ll come out the other end OK.

The Planning Session

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:

Right 1
You should always be treated with respect, including respect for your culture, values, beliefs and personal privacy.

Right 2
No-one should discriminate against you or push you into doing something or making a decision that you are not comfortable with.

Right 3
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.

Christmas has been and gone

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.