PART IV (b)
I
Okay, so technically
it isn’t halfway. The Herceptin (which hasn’t started yet) will go on until
January 2015 and I have to have the decency to stay alive for 5 years to be
considered ‘cured’. Which would make half way another 2.5 years. But I was
halfway through the chemo, and on the basis that that was the nasty part, it was
good enough for me.
Now, back into the
feeling good days, it was time to circulate myself around the family. I called
my mother to arrange a day for her to come over. She said that she had always known she loved
me, but when I had initally called with the news of my lump, she realised just how much she
loved me. ‘Always happy to have a disaster to make you realise how much you
love me’ I jested. We chatted briefly about my younger brother’s similar
efforts (he had broken his neck and back in a car accident, in Australia, a few years
previously). She then told me that she had emailed bro the elder to warn him
not to attempt any similarly attention seeking scenarios. ‘But what if he took
the message too seriously’, she commented ‘and is then too worried to tell me
if anything happens’. ‘Well that wouldn’t really happen’, I replied, ‘because
he would tell all of us, and then if we spoke to you, we would say, 'Oh no, have
you heard about the bro the elder?'. And if you didn’t know we would then say, 'Oh, had he not told you?' So ultimately you would find out’. She laughed.
During my ‘good’ week
I tried to get into London for work. Being on a rush hour tube with a wig was
alarming – firstly, there was the wind rush along the platform when the train
arrived. It would be embarrassing to explain to the lender of the wig that I had
lost it under an underground train. Then there was the crowd concern. I am
short and tend to spend tube rides wedged into some strange man’s armpit. This
was now less of a concern than the threat of being knocked or brushed past in a
way which would result in my hair taking on a suspiciously jaunty angle. When
walking around town over pedestrian crossings, by way of thanking the stopped
drivers, it was tempting to lift my wig and nod to them, in the same way that
one would doff a cap. I didn’t, but the thought – of their reaction – amused me.
One day in the
office coincided with a date when my father was in the country, so we agreed to
meet for lunch. I showed up in my borrowed, expensive wig. Standing about 2
feet in front of him, he didn’t recognise me. When we went back to my office I
took the wig off so that he could see my bald head. Initially he smirked with
the surprise of it. Then, seconds later, it looked as though his eyes were
filling with tears. Nothing brings home the reality of your child having cancer
than the harsh physical truth of baldness.
Walking back to the
station I became aware that my default walking pace of approximately 100 miles
per hour was unchanged. However my default cardiovascular fitness level was not
at the same level as previously. The end result was an uncomfortable, panting
mismatch.
I saw testicle man,
and the rest of the commuter crowd on the train home. He asked how I was doing
and I told him that I intended to be in the office for a further 3 days the
following week. ‘We’ll see’ he replied, shaking his head. He really needed to
be a lot less negative.
That evening we popped
into the pub. It was the first time my borrowed wig had been displayed there, and the
look was popular. Very popular. It’s fair to say that in that wig I could pull
many many times over. Steve was relieved that this look was only temporary and
I would soon revert to my usual appearance which aroused considerably less notable
testosterone surges.
Everyone was saying
that I looked really well. ‘I must get cancer more often – it clearly suits
me’, I responded, to the general mortification of those around me.
As I had explained to
my father, part of looking well is possibly because after so many days of
feeling under par, you stop taking feeling ok for granted. So when the day
comes when finally you feel good, you feel really good. You glow with goodness.
It seeps out of every pore. So yes, I looked well. Because I felt well and
wanted to enjoy every moment of feeling well until the next cycle.
My mother came round
at the weekend. I opened the door, with my bald head exposed. She laughed. A
lot. And then claimed that it wasn’t my bald head that had amused her, but my
ears. Of all the things that may have been amusing visually, this seemed odd.
My ears had always been there and surely, if anything, I would have looked more
peculiar without them. My mother had found the look amusing for a number of
reasons. Partly because I looked so petite and vulnerable but primarily because
the light from the kitchen windows at the end of the hall was shining through
my ears, thereby rendering them translucent and pink, which transformed me into
an other-worldly character. Apparently I looked sweet – and funny.
She had driven all the way to our place in third gear, and had not noticed the engine noise because she was
singing away to Nina Simone, which was emitted loudly from her CD player. I’m
not sure that’s an image that I want in my mind.
She wanted some
pictures of us together, but getting the correct location proved tricky, as the
light kept shining off my head. Note to self: new business idea. Mattifying
cream for the shiny bald headed market. There must be a huge demand, and I would
proudly lead the charge.
She was impressed that
I still had eyebrows, for which I thanked the Vaseline. ‘Why didn’t you
Vaseline your head?’ she asked. ‘Because that would take a lot of Vaseline and
be a lot of mess’ I replied. She didn’t seem to agree. ‘Ok’, I said ‘you go and
Vaseline your head tonight’. ‘But I’ve got all this’ she exclaimed, tugging on
her thick hair. ‘And I would have had hair too, given that using the Vaseline
was for the purpose of preserving it’. She giggled, suddenly realising the
ridiculousness of her suggestion.
II
Herceptin was due to
start, the day before the next cycle. The consultant had told me that while
Herceptin did not damage the heart, as such, it did uncover any issues you might
have. Therefore, I had to have a heart scan prior to receiving the treatment.
It was exciting to be
in cardiology, rather than oncology. ‘Is it still sensitive?’ the specialist
asked, in relation to my scar. ‘No’ I assured her, ‘I have virtually no
sensation there at all’. I lay on the
bed while the she ran the ultrasound over my chest. And there it was, on the
screen, dutifully pumping away. I had a heart. Which was a surprise. Now and
then she would turn the sound on. The noise was wet and squishy. She looked at
it from every angle, measuring it. ‘You need a score of 55 or over’ she
explained. ‘We do scans every 3 months and if it falls below 55, your treatment
will need to stop for a few weeks until the result has risen’.
She told me about her
step-mother who had had breast cancer 5 years ago. She had found a lump but did
nothing about it for several months. Hmmm, I know that feeling.
‘You’re very young’,
she said ‘to have this’. I didn’t say anything. There was no response to give.
I needed to breath in,
breath out, and then hold my breath, at various moments, as instructed. ‘It’s harder to
scan someone slim’ she said. ‘You wouldn’t think so, but your lungs get in the
way. You need to put some meat on for next time’.
Then she looked at it
from underneath, and on the screen it pulsed towards me. ‘That’s a good heart’
she said, ‘I’d be happy to have that one’. Unfortunately, I wasn’t making it
available for third party use.
My score was 70. I had
passed. With flying colours.
III
There had been an
article in the Daily Telegraph about whether people were shocked by a photo of
Jennifer Saunders smoking, after having had a lumpectomy. It was accompanied by Yes and No arguments from two women. Personally I had no
issue with the photo whatsoever. Drinking is also on the list of things that
may cause breast cancer and I had carried on drinking. If anything, people who
continue to follow ‘bad’ habits after being diagnosed with something nasty do
so as fully informed individuals. Let’s face it, a vast majority of people
regularly abuse their bodies with bad diets and lack of exercise, before you
even throw in drink cigarettes and other drugs, in the ignorant belief that the
nasty things will never happen to them. They all quote tales about a granny who
smoked 80 a day and lived to be 110, without ever having had a cough. People
like me and Jennifer Saunders keep our vices with a much greater awareness of
what they can do. No, that picture didn’t bother me. However, the responses
from the two women – both of whom had previously had breast cancer - did bother
me. And quite a lot.
The first lady was
upset by the picture. Initially I had deep sympathy for her. She started her
response by saying that she was due to go to hospital that day for a mammogram
to see if her breast cancer had returned. I couldn’t imagine a more galling feeling.
It later transpired that she had had the condition 5 years ago and this was the
final test to give her the 5 year all clear. Her entire response was filled
with negative, glass half empty view points. 5 years on she still seemed to see
herself as a cancer sufferer. She also could not relate to Saunders’s view that
cancer was something which you could deal with and leave behind, admitting that
she would find it hard to say she once had cancer – 5 years on from when her
tumour was removed.
I wondered how her
friends and family had coped during her illness and treatment if she was still
this miserable about it after 5 years of being tumour free and after 2 years
(by her account) of good health. She had taken 3 years to get well after her
treatment. Now I fully appreciate that chemo affects everyone differently – the
doctors had made that abundantly clear. The Macmillan nurses had also said that it
would take a good 3 – 6 months after the treatment stopped before you really
felt like yourself again. I admit I have been lucky. I feel well again a matter
of days after each chemo and am bounding with energy. I haven’t missed a day of
work. A large part of this is probably down my mental attitude – cancer will
not define me, nor will I let it significantly impact my life. Our friends all
said that they were impressed with how I had approached the condition. They
respected and admired the way I had fronted up to it and just carried on
with my life. Although they also demonstrated how little the general public
knows. There were a lot of questions, for example, about the extent of hair
loss. Is it just your head. (No it isn’t. I hadn’t entirely lost all body hair,
but there was significant thinning and the hair I did have barely grew – so no
need to shave anywhere for the foreseeable future). They also wondered if I was
allowed to drink – yes I was. During the heartburn days, wine and whisky are
definite no no’s unless you particularly thrive on have a burning sensation
with every sip. Macmillan had warned that you would be more easily affected by
alcohol and drinking on the day of chemo might not be too clever, but other
than that, there was no reason to avoid it.
Even if I had not been
so fortunate, or so positive, the quoted 3 years still seemed an awfully long
time and I hoped it was not due to this particular lady wallowing in self pity.
But the overall tone of her comment did rather lead one to that conclusion. I
also realise that some cancers can be horrible, mutilating, debilitating
conditions from which people may never fully recover, or indeed not recover at
all. So I felt myself very fortunate to have had a tumour in my breast. I don’t
need my breasts therefore, it was very straightforward to simply cut the
offending body part off and throw it away – which you can’t do quite so easily with,
say, a stomach, or liver. A breast cancer that hasn’t spread is absolutely
something which can be dealt with and moved on from. And I didn’t think of
myself as someone with cancer – technically I wasn’t. The mastectomy had
removed it. All that was happening now was treatment to mop up any little
buggers that may have escaped – not that there was any evidence that any had done
so. Precautionary housekeeping – that’s what I was a patient of. Not cancer.
Her response angered
me in a way I hadn’t expected. She did not represent me nor any of the other
women with breast cancer that I had met during this process. There were only
two occasions when I had been hard hit by my diagnosis. The first was when faced with the chuggers at Waterloo, the day after Dudley died, just prior to my
surgery. The second time was when I was at home on my own, watching TV. An advert came
on. It showed ordinary people, going about their lives. Walking down the
street, standing in the office, going to the supermarket. Then, in slow motion,
their hands fell to their sides, dropping whatever they had been holding. And
slowly they fell backwards. At the last moment a Macmillan nurse came rushing
in to catch them, and the advert was trying to say that when you get a cancer
diagnosis, it hits you, it hits your friends, it hits your family – but
Macmillan are there to support and help. For me, it showed the initial shoulder
sagging, un-dramatic moment of diagnosis. The quiet gentleness with which you
receive the news, the slow sinking feeling you get inside as the weeks and
months of treatment are laid out before you. The moment when everything looks
different and you haven’t yet mustered the determination and strength to walk
this road, so much of which you have to do alone, while those you love look
on from the side lines. That moment isn’t sudden. It isn’t loud. It isn’t
screams and shouts and wailing. That advert captured entirely how it felt in those first
few seconds. I saw it just before Christmas, when so much of the process had
already happened, or was underway, and the ability for me and those around to deal
with this was confirmed. But even then, it hit me in the stomach and brought
tears to my eyes.
On the other side of
the Telegraph response fence was a lady who had no issue with the cigarette
smoking Saunders. I set to reading her response, expecting to find more
commonality with her views. Well, not quite. The picture didn’t bother her now,
but she suspected it would have angered her if she had seen it while she was
still undergoing her treatment. And then the killer admission – she had refused
to look at her bald head when going through her chemo. So you had to question
the extent to which she had fully accepted her condition and what it was doing to
her. She did also say that everyone deals with cancer in their own way, and
certainly these two women did show two very different ways of coping (or indeed,
not coping). But her response still saddened me. How can it be that people are
still so frightened of this condition, so un-knowing about something which
affects hundreds of thousands of people a year, so upset by their own
temporarily bald head. Even the fact that there are many types of chemotherapy,
each with its own different side effects, is not common knowledge. Where have
we gone wrong in the education process? No wonder people were afraid given that
generally, you are afraid of the unknown.
We saw some friends at
the pub who we hadn’t seen for a while ,who talked about a character on
Emmerdale with cancer, and how they didn’t like how this person was being
portrayed. It seemed that they had turned to petty crime, with the implication
being that the chemotherapy treatment had somehow initiated this and that, as a
cancer patient, she would get away with it. I looked at our friend with a
shocked expression. ‘Uh oh’, I said. ‘I’ve been merrily going around committing
criminal acts thinking I could blame chemo fog, and that no jury would send a
little bald headed person to prison. Maybe I’d better stop’. She laughed, but I
took her point. A major soap had had an opportunity – and wasted it.
I quite happily and
confidently go out with a bald head, and take my wig off in the office and pub
without any concern at all. If the general public sees a person on cancer
treatment, out and about, laughing, healthy and enjoying life, surely this can
only ever be a good and positive message which is clearly greatly needed. I’m
looking forward to getting back to the gym, standing unclothed in a communal
changing room, obviously mastecomised. If one woman, just one, asks a question
or speaks to me about breast cancer or its treatment, to allay her own fears or
curiosity, as a result of seeing that scar, it will be positive moment.
IV
I had been in the
office for 4 days in the course of a week. This was excellent. Except that I
seem to carry the curse of the royally fucked up train service. Back in January,
my plans to go to work were scuppered by landslides and floods. Over the last
week, the service on my usual train line was cancelled as early morning January
ice (which seems to have come as surprise to the train operator) had caused a
power failure. So I had to travel in on the cross country, circuitous route to
Victoria (at least it was no longer flooded). Then we had significant delays
on another day, due to a suicide at Liss (to all those with suicidal
tendencies, other ways to kill yourself are available). Not only did this cause
inevitable cancellations and chaos, but in their leap in front of the train,
the individual had managed to damage the signalling equipment. Or, as our regular
commuter group discussed amongst ourselves, perhaps all the lights looked red (blood and gore being liberally spread),
and needed cleaning. Poor taste, I know.
On yet another day the
train quite literally died in the station. It would not move. All power ceased.
The subsequent train pulled in on the opposite platform and did provide a
service, but managed to get slower and slower and slower in its progress to
London.
V
To help reduce the
symptoms and reaction from the next round of chemo I had to take a significant
amount of steroids. For 3 days. So that meant any prospect for my athletic
career was in tatters.
Cycle 4 involved numerous hospital visits. There was the usual early Monday visit for a blood test,
followed by the Monday lunchtime consultant appointment, in which I was told about
the different range of side effects that I may experience from the next type of
chemo drug. This included loss of sensation in the fingers, and consequent risk of
burning your fingers, as well as dropping things. Also my immune system would
start to die sooner, so the unpleasant jabs would start at day 3, rather than
day 5. And now would go on for 7 seven days, which wasn’t entirely welcome news. In
the car on the way back Steve passed me the car parking ticket. I almost
immediately dropped it under the seat and struggled to locate it – and yet I hadn’t
even got the fingers sensation loss yet. He looked at me. ‘I gave that to you 3
seconds ago and you’ve lost it already’, he laughed. ‘And I trust you with the
passports when we go on holiday’. I found it, but he carried on laughing at me
nonetheless.
On Tuesday I was due
to spend the day at hospital for the first Herceptin. The infusion
would take an hour and half and then I had to stay on the ward for 6 hours in
total, in case I had an allergic reaction.
Steve took a photo of
my feet, which didn’t reach the floor when I sat in the chair. This was usual.
I was too small to have cancer really. However, the chair did have a flip up
bottom to make the picture a bit less like a little girl on a grown-ups chair, as
well as being a darned site more comfortable for spending a day in situ. Unlike Steve’s
visitors chair, which was less comfortable.
My main memory of the
day is the uneven tune of bleeping drips around the ward. I had a lot of
reading with me, and once I had read some material related to work I moved on to the
magazines. One of them included a quote which hit home to me ‘you live once and
life is wonderful – so eat the damned red velvet cupcake’.
There was a fun group
on the ward that day. An older lady sitting next to me had a head scarf on and
I would still see hair at her temples. I sat there with my bald head on show.
She asked me whether I still used shampoo or just shower gel. To be honest, it
varied. However, I didn’t bother with conditioner, but did moisturise my scalp if it
was dry. She said that she was still conditioning her head like a demon, to keep
her remaining hair. She asked if I had a wig. ‘Yes’, I told her 'but after a
couple of hours it becomes quite uncomfortable to wear, so I tend to just take
it off, and if I’m out in public people can just deal with it’. She completely
agreed with the discomfort. She had looked forward to wearing it for a night
out but had been slightly disappointed with the itching and tightness. We both
talked about the difficulties of the tightness – too tight, and it becomes too
painful to wear very quickly, as well as leaving a red mark round your head.
But too loose, and you get worried about coming off. She told me about an
evening when a group of friends had gone out, one of whom was wearing a wig
while having chemo treatment. ‘While walking down the street the wind whipped
it off and blew it into the middle of the road’ she said. ‘But my friend calmly
walked out, stopped the traffic, picked it up, dusted it off and put it back on
again. We were all laughing’. As did I. It was a fantastic story.
She seemed to be
suffering even less than me with the chemo. She hadn’t yet experienced the
‘downstairs’ stinging nettle tingle, nor had she needed to take any of her anti
sickness medicines.
Opposite me was
another bald lady who didn’t have any head covering on. She was having her 6th
chemo cycle. I am reticent to say last – her breast cancer was aggressive and
not a lump. It had spread rapidly into her armpit and neck. The chemo was being
done to shrink the cancer to a point where it could be operated on and her CT
scan to establish if the cancer had shrunk to an operable size was due shortly. Despite this, she was still incredibly
upbeat and positive. I felt huge admiration for her and guilt about my cancer
having been so easily sorted, and blessed by having the cancerous part of the
tumour neatly enclosed inside, as yet, harmless pre-cancer cells. Akin to a scotch
egg.
For reasons I can’t
explain, I kept reading sections in the magazines about hair care and simple
ways to do seemingly involved hair dos – in my experience, the instructions are
never quite as simple as they imply and the end result is usually far removed
from that pictured. I’m not quite sure why I was bothering. It would be a
long time before any of this information was of any use to me.
The lady next to me
mentioned that she had had one chemo on Friday 13 and her last was due on April
fool’s day. The nurse said that on Friday 13 a number of patients had cancelled
their chemo appointment, and also, that a lot of patients refused to sit in chair 13,
viewing it as unlucky. ‘You could take the view that we’ve already had the bad
luck’ I said. ‘Absolutely’, said the lady ‘bring it on, number 13’. I liked her
style.
One of the male nurses
was talking about the danger of cut flowers to chemo patients, because of the
bacteria in the water. I asked him if he realised what he had just done, giving
all men permission not to buy us flowers. ‘Just while you’re on
chemo’ he hastened to add.
During the Herceptin treatment I
started to feel sick. Very sick. It was the first time that I actually thought
I might be sick. It shouldn’t have been caused by the Herceptin – the potential
side effects from that are headaches and skin rashes. The smell of the plastic
tubing in my shoulder port turned my stomach. The slightest whiff and I felt
the nausea rising dangerously. This was a bad sign. I needed to exert a fairly
high level of control over my mind and force it to associate that smell with
getting better, with being mended. It had to be linked to good things. As soon
as I was unhooked I went to the loo, half expecting to throw up and really not
wanting to. I paced the floor a few times until the imminent feeling of danger
passed.
This was also the
first day of my heavy duty steroids. Perhaps they were having an effect. The
steroids were apparently an ‘upper’ and the consultant had suggested not taking
them after 3pm, or I wouldn’t sleep. So I took them at lunch time – and soon afterwards
I fell asleep for 2 hours. Not that much of an upper then!
Ana, the Portuguese
nurse was working in a different section, but we could hear her loud voice
across the divide. My nurse accused her of waking me up. It was strange – I had
woken to the sound of Ana, but the ward was filled with noise, hustle and
bustle, which I had been ever aware of, yet out for the count at the same
time.
The good news was that
plans were afoot for Herceptin to be available as an injection that could be
self administered at home. This would significantly reduce the boring and long
process that lay ahead.
Ana had an upcoming
skiing trip and the patients and nurses in our section were having a bit of a
sweep stake about whether she would have a broken leg before she went, or
whether she would break her leg out there as she had popped over to our section
briefly and nearly fallen off the nurses chair, whose wheels seemed to have run
away at an unexpected pace. ‘I can hear you’ she called over the section
divide. We all giggled.
It’s strange to say
that an oncology ward is a fun place to be. But the utter positivity of the
staff, the gentle ribbing between them, and the friendliness and good spirits of
the patients made it a good environment . In that room no one ever seemed negative or brought
down by what was going on, and why, despite the various outcomes
we all had ahead of us.
The port needle had
been left in, in case they needed access. The numbing cream does a good job,
but that had been applied over 7 hours earlier, and the needle in me was now becoming
uncomfortable. The nurse had offered to leave it in ready for my chemo the next
day – not a chance. It was coming out.
The following day I
was in for poisoning number 4. Now this started to feel like the beginning of
the end, like I had broken the back of this treatment. It was strange how
poison is used as a cure, in just the right dose, it helps rather than hinders.
I put on my mascara before heading out to hospital and noticed that several of my
eyelashes were missing. There was a distinct gap. However, I still had a
reasonable number of eyelashes and was now at cycle 4 so it would be churlish
to complain.
When the tea lady came round she had a biscuits - in one of the clean buckets that are used to put in syringes and other waste from the drips. Her theory was that it was a stressful day and everything was very behind schedule. She found that biscuits with tea helped the staff and wondered if it might also work on the patients. Although she kept the Cadbury's chocolate ones for herself!
A lady I sat next to
said that from here it went quickly. She also said how her nails had suffered
under Docetaxel, and she had lost a toe. Then she laughed, saying she meant a
toe nail! In anticipation of the nails issue I had already cut mine short, to
avoid catching or snagging them.
My take home goody bag
of drugs was less full than usual. My anti sickness pills regime was considerably
less. This version of chemo apparently was less likely to cause nausea.
Admittedly I didn’t feel sick, but took the pills none the less. I wasn’t going
to take any chances. In place of the sickness, however, this chemo was also known
for making you more tired. 2 hours later I was asleep.
VI
I had received a
letter from my GP saying she wanted me to make an appointment following the
latest letter that she had received from my oncology consultant. The letter made clear that there was
nothing to worry about. Given that it didn’t seem urgent, and that I was
already spending quite a lot of time in the presence of the NHS I phoned the
reception and asked if it could be a telephone appointment instead. Now there is
a bit history here. Many months ago I had spoken to this particular GP. She had
asked me to keep a symptom diary and then come in to see her a week later. I
duly did as instructed. I had the first appointment of the day, at 9am. At ten
past I was called through and asked what I was there for. Hmm, I thought to
myself. So you didn’t spend those 10 minutes having a quick look at my notes
and seeing that we’ve already had a discussion and I’m here, following what you
instructed me to do. It was not a good start. This GP had now taken over from my
previous GP – not that the practice had felt it necessary at any point to
inform me that my GP had retired and I was now registered to someone else. So I
awaited her call with a certain sense of foreboding.
A couple of days
later, as scheduled, I received a call. ‘Hello, this is the doctor, how can I
help you?’ Yet again, I realised that she had not taken the opportunity to spend
even a matter of seconds looking at my notes before calling. But I was prepared
for this. ‘I haven’t the faintest idea’ I said, ‘you sent me a letter saying you wanted to see me’.
Ha ha. Now I’d got
her. Stunned silence. Ums and errs, and the istinct sound of fumbling as she quickly
tried to locate my notes (some doctors might have already got this on their
screen before calling). I offered her one bit of help. ‘The appointment request
letter referred to correspondence from my oncologist’.
‘Ah yes’, she said
‘it’s nothing to worry about, it's just that
the hospital has dealt with all of this and we haven’t seen you, and we just
need to let you know that we’re here’.
I’m glad I hadn’t
wasted my time with a physical appointment. I was perfectly well aware the GP's
practice was there, but I also had an excellent health service provided by the
hospital oncology unit, plus an effective 24 hour helpline if there was anything
I needed.
My opinion of my GP
had not been enhanced.
VII
Once upon a time I had
had critical illness insurance cover, to pay out a nice mortgage-expunging lump
sum in the event I had the misfortune to be diagnosed with a critical illness – such as
cancer. A few years ago our situation had been momentarily financially
interesting, and therefore every single non essential expense was reigned in. This included
cancelling my policy – and I never bothered to start a new one after things
picked up. Now I know that over the years the definitions of critical illnesses
have been made more and more rigid. After all, the policy is designed to help
when you have had a life changing condition which potentially prevents you from
working again, or working in the same role, or which may require modifications
to your house, and so on. It is not designed for a short term nasty illness from
which you fully recover and then go back to your life as before. Given that my
cancer fell into the latter category, I doubted it would have been covered.
But one day I decided
to look up the critical illness definition for cancer by the insurance company
I had previously been covered by. Huge sigh of relief – there is a reasonably
high possibility it would not have been covered. Everything would have come
down to arguing the toss over whether or not it was ‘in situ’. Yes, it had
spread from the ducts and was invasive, but it hadn’t spread farther (such as
into my lymph nodes) and it was beautifully contained within a ‘harmless’ tumour. It
would have been galling to have such a policy, get cancer and then not be able
to claim because the cancer wasn’t serious enough. There aren’t many times you’d
get cancer and then think ‘Oh, if only I was iller’.
VIII
Docetaxel, otherwise
known at Taxotere, or T, is a different animal to FEC. I knew I would have to
learn all over again how it affected me, and when I felt bad or good.
I had no nausea. I
was still prescribed nausea pills – albeit far fewer than when on FEC – but took these
anyway rather than take the risk. It wasn’t that I felt more tired. It’s hard
to explain. Everything was just really difficult. Sitting was hard to do for
long, so was lying down, so was walking about. So I spent two days restlessly
interchanging between doing some work, pottering about, lying down for a few
minutes (without any possibility of sleeping) and then starting again. It was
impossible to get comfortable. Steve had bought me some jigsaws as I had said
that on bad days I needed something to occupy myself that I could dip and out
of but wasn’t too taxing. The jigsaw was enormously taxing. But it added
another minutes absorbing activity into my restless daily cycle. Work, wander,
jigsaw, lie down. Repeat. That filled an hour. And another hour. The day felt
long and boring. And difficult.
When the working day
finally ended I went downstairs to make dinner. This took longer than 15
minutes, which proved to be a problem, as I couldn’t concentrate on it, or even stand, for
much longer than that.
T has other exciting
new side effects. While there was no nausea, it did impact on my appetite. I
had none. I didn’t feel hungry - ever. I ate and drank because I knew I needed
to, but having eaten, I didn’t have any sensation of fullness or satiety.
Nothing. It was odd. The metallic taste was again ever present, but for the
first time it affected the taste of food. Nothing tasted. So there was no
pleasure in eating or drinking therefore these things were reduced to the vital body
fuels that they actually are.
My injections started
on day 3, rather than day 5, as T kills your immune system more rapidly. The
injections gave me heartburn, so that reduced further what I could eat.
Anything slightly spicy or acidic was off the menu, so there was no way to liven
up the dull, tasteless food into something enjoyable, as I wouldn’t be
able to eat it.
T can give you skin
rashes. I have a very mild allergic reaction to plasters and dressings. This
never usually causes a problem, unless a dressing is left on me for some time.
When the Herceptin and chemo had been administered, the line was held in place
with sticky dressings which had never previously been an issue. But now, everywhere that the dressing had been soon
developed into a red, itchy rash, all round my port. After a couple of days the
skin started to blister and suppurate. A week later it had dried out and was
starting to improve, but was still red and itched to the extent that it would
keep me awake at night.
Then there’s the pain.
I didn’t get the pins and needles in my finger tips, or loss of sensation,
but I did get the pain. It felt as though all of my finger tips had been
slammed in a door. The pain was around the nail bed, so anything that required
use of fingers became a challenge. Such as opening tubs of coleslaw, picking
things up, writing, typing, pulling on leggings and dealing with buttons. Oh
my, buttons had now become the invention of the devil.
There was other pain
too. T affects nerves and muscles, so you get aches and pains in your joints.
You need to add into this mix the fact that the injections also cause an all
over flu-like body ache. But now aching ankles and knees also were added into the
mix. I didn’t want to live on painkillers unless I really needed them – there
were more than enough drugs that I was pumping into my body already.
With the combination
of the injections, and the damage caused by the chemo, my heartburn was becoming
bad, so bad that it was making me nauseous. I had been given pills to help with
the heartburn, but having read the side effects, had decided to try and avoid
taking them. Among the most common (1 in 10 people) side effects was nausea,
vomiting, headaches and diarrhoea. The main reason for easing the heartburn was to
help with the nauseous sensation it caused, so these possible side effects
weren’t worth the risk.
And then, the final
insult. FEC had given me downstairs thrush and I had also had a sore bum for a
few days. T was just a little bit more vicious. And I’m sorry, but things get
graphic here. My anus was itching to the point of madness. I had already been
kept awake for two nights by it. On the third night I was up every hour trying,
in vain, everything I could think of to try and ease it. When the longed for
morning arrived, I looked up itchy arse on a cancer forum. And here is what I
found.
This is an extremely
common and never spoken about side effect. I was mortified. Yes, it is the
final indignity, but let’s not make that worse by never mentioning it and
leaving thousands of people to suffer alone, and in silence. The forum chat was
fabulous. One girl had initially posted the query, only for dozens of others to
share their experiences. Someone had found using her facial cucumber wipes
wassoothing. Another mentioned yoghurt. This then descended into discussions about
the potential effectiveness of tzatziki, but one girl was concerned about
putting her boyfriend off the dip if he associated it with its being smeared
between her bum cheeks. In order to really scratch the itch, one girl had
suggested to her boyfriend that if ever he fancied a trip up the marmite
motorway, now was the time. One girl’s partner called it dinosaur bum –
megasaurarse. But the comment which had me laughing out loud was in response to
the general advice to use anusol. The girl posted ‘today I went and got some
anusol and thought to myself, if I don’t like it, I can shove it up my arse.’
Joking aside, I had
the answer and Jon went scurrying off to the chemist. ‘No it isn’t for me’, he
explained to the pharmacist, ‘it’s for my sister-in-law who had breast cancer
and is now on chemo’. A knowing smile crept across the pharmacist’s face
(that’s how commonly known this symptom is). Jon leaned in and whispered ‘and
she’s got one hell of an itchy arse.’
With FEC, I was a bit
under par for 3 days and then started to bounce back, which nicely coincided
with the weekend. While on FEC we hadn’t need to cancel any of the plans we had
made. You don’t bounce back so quickly from T. I had intended to go to a hen
party on Saturday night. That wasn’t going to happen. The next day I had a
McDonalds breakfast - a clear measure of
how not me I was feeling, then we went for
a walk along the sea front – partly because I needed to get out of the house, and
partly because I needed to keep active. That evening we went to the pub for the
scotch egg cooking contest. I was feeling a little better, but people in the
pub said that they could see in my face that this time I was suffering more.
The girls who had been at the hen party were a little fragile. The stag wasn’t
much better – he still wasn’t back on solids yet. My body felt as though it had
had a fairly full-on night out, without having left the house, so I could
relate quite effectively with the quiet, gentle groaning.
On Monday I was starting
to feel a little less drugged and restless and was contemplating going into the
office later that week. Granted I still had an itchy, sore, oozing rash, an itchy
rear, serious heartburn, sore fingers and an aching body. On the plus side ,my toes
nails weren’t sore. And there were other side effects available which I had not
been blessed with. But by Tuesday afternoon it all came crashing down. I felt
hideously sick, tired and in huge amounts of pain. It seemed slightly unfair to
have given me a day and half of thinking that I was turning the corner, only for it to
do this to me.
The heartburn was so
bad that I now took the risk of taking one of the pills.
That night, armed with
anusol I went to bed hoping for a good night’s sleep. At 3.17 am I woke up in
terrible pain. I had a headache that you only really deserve after a skinful of
alcohol and my back felt as though a stream roller had been over it. I gave in.
I needed painkillers and went downstairs to get some. Then the nauseating
heartburn kicked in and having taken the painkiller, for a few minutes I had to
try hard not to throw up. It seemed a cruel and unnecessary trick to play. T
really is the gift that keeps on giving. I wondered if the headache was from
the heartburn pill, and decided not to take any more of those.
And at this point my
default position of having a positive attitude started to waiver. It just
seemed harder this time. I couldn’t see the light at the end and it started to
get me down. Steve would cuddle me and ask how I was, at which I would immediately
start crying. I felt horrible. I didn’t recognise who I was anymore. I walked
around like a 90 year old because of the back pain and discomfort in my leg
joints. And on top of that I had all the other unnecessary, irritating niggles
all specially designed to make the situation that little bit worse. I knew this
wouldn’t be easy but I needed to know when I would start to feel like a person
again. Just getting from morning to evening was a challenge, and I longed for
an undisturbed night’s sleep.
Given how useful the
forum had been in relation to treating symptoms, I went back there for
information about how long it takes to get over the initial effects of T. I had
expected to find information indicating it took longer than FEC but by, say day
11 or 12 you were getting back to normal. But that isn’t what was there.
It was not uncommon
for people to have not recovered by much by the time of the next infusion. 9-12
months recovery were regularly quoted, and occasional, more ridiculous
assertions of 2-3 years. There was talk of teeth falling out, muscle weakness,
fatigue that lingered long beyond the end of treatment. And pain. Lots of pain.
The pain I had was not even in the same league as the pain that some of these
women had experienced.
I still thought of
myself as a fit person – despite the marked drop off in gym attendance. But the
idea that I might need to stop for a rest halfway up the stairs really was the
final straw. And the concept of dentures, obviously.
I felt myself welling
up again, and almost decided that I was done. Finished. No more T for me thank
you very much. I don’t care how effective a breast cancer killing drug it is.
Steve came back to
work from home for the day, knowing I was low and suffering. We had a hug and I
carried on working. I appreciate that might sound a bit mad, but maintain
normality was important, as was the distraction. If I was working, then I
wasn’t lumbering around on the sofa, uncomfortable, itchy, in pain, wallowing
in self pity. Before all the started the Macmillan meeting had warned us about
depression. They said that if you felt down, set aside some time to really get
upset about things, and when that time was finished, then stop – and carry on.
I don’t know if it was
remembering that, or the presence of Steve (an empty house when you feel unwell
is particularly lonely), or whether I just didn’t want to be this person (Steve
reminded me that part of the problem was that I just don’t do ill. I don’t
understand it and am not very good at it). But then and there I said to myself
‘enough’. Yes it’s difficult. But I’m stronger than that. There are two more to
go and I can do this. We’re talking about another 49 days out of the whole of
the rest of my life where I might feel a bit below par. There is no way I will
take a year to get over this.
‘The people on those
forums are those with something to say, something to get off their chest’,
Steve had said. ‘All the people who are feeling good and recovering well aren’t
on there’. He had a point. I couldn’t take a minority viewpoint. The itchy arse
forum was different – they were all light hearted fun filled women sharing in a
common and unpleasant side effect with life changingly useful advice.
There never seemed to
be a day go by when some part of my body was not under repair of one sort or
another. Now it was the turn of my nails. Knowing they were at risk of lifting
or getting infections underneath I started to put tea tree oil on them, from a
recommendation received by the Look Good Feel Better group prior to chemo
starting. I realised too late that it comes out the little bottle faster than
the dropper top would have you believe. The best ploy was to apply it using a
cotton pad, which I was already getting through at industrial rates given my
very particular morning and evening face cleaning process.
To try and save my
depleting eyelashes, and based on how effectively I had kept my eyebrows, I
started to put Vaseline on them. Well that’s a really good way of making you
feel as though you have a hefty dose of conjunctivitis, I can tell you.
Maybe it was my
attitude, maybe it would have happened anyway, but I started to feel better.
Plans for going into work had to be postponed but I knew I was coming back
again. Having missed the hen night, I was looking forward to going to the
wedding reception at the weekend. A friend at the pub had said ‘yes, come
along, let your hair down’, and then giggled. Given that she was the same
person who months earlier had cried while plaiting my soon to be shorn hair,
this was a positive improvement on all fronts. We found out later from the groom that when looking through his wedding photos a friend saw a picture of me - wearing the loaned wig - and said 'hasn't that lady got beautiful hair'. A compliment indeed.
All
I needed now was to be able to move more like Man than Monkey in the evolution
picture when I first got up in the morning.
IX
I did manage to do a full week at work. By Friday I
was extremely tired, also the fluid retention in my legs had started. My ankles
swelled and walking gradually became more and more uncomfortable. I had read
stories from women who have previously had cancer becoming more accepting of their bodies, their lumps and bumps and
flaws. I wasn’t getting that vibe at all. I still had very high demands of my
body and how it looked. More so now than ever. From now on, it really was going
to do as it was told. I am very much in charge and intend to remain so. No
flabby bits. No lumps.
Cycle 5 approached
quickly. While
waiting for my pin-ultimate blood test prior to the 5th infusion I
heard a couple talking behind me. Then the conversation started to involve
another person and moved onto the subject of hair re-growth. The man mentioned
that his last chemo had been at Christmas. I turned round. He had a decent head
of hair on him. I explained my interruption – although I was sitting, bald head
exposed as usual, in an oncology department. So the reason for my interest
really ought to have been clear. Apparently not as his wife said ‘Oh, I thought
you’d had your head shaved for charity or something’. Really? She thought that
in an oncology waiting room? I concluded that it could only be because I wore
my baldness so proudly and so openly. I looked around – no other bald heads.
Some head scarves, some wigs. No baldness.
‘This is ridiculous’ I
thought, ‘I’m going to have to be an ambassador for bald women of England’. I
appreciate that all women on chemo started out at different points on the
confident scale, but for those at the upper end, let’s not shy away from the
effect this treatment has. Let’s not hide it. Instead we should be showing
other women that yes, I am undergoing chemo but I’m out and about, I’m living
my life. I am not afraid. I didn’t understand why I was the only one. Steve and
Jon both decided this was because I was special. But also, the current weather
meant it was too windy for wigs. And they were uncomfortable.
The day before the next chemo round I managed to
get myself onto a cancellation on the Look Good Feel Better course.
Look Good Feel Better
was started by an American lady who was known for her looks – and then she got
cancer. The effect on her appearance caused depression to such an extent that
her consultant put her in touch with a make up artist he knew. The result was
so quick and substantial that an idea was born to help other women. So the
charity now runs make
up and general pampering session for women with cancer, to teach you how to
disguise missing eyebrows and eyelashes as well as skin care while undergoing
chemotherapy.
In the UK the charity
approaches various providers of make up and skin care products and asks them to
donate their wares. Consequently while we all had the same ‘things’, we had
slight variation in make. My goody bag had items from Lancome, Estee Lauder,
Rimmel, Maybelline, Max Factor, Clinique, No. 7 and Nivea and was probably
worth the thick end of £200.
The LGFB session did
have some amusing elements. Most of us had sore finger tips and most of the
goodies came in tightly wrapped cellophane or has small plastic security tabs
over the opening. The 3 girls running the course had to mother us by coming
round and opening everything.
We were told that dark
nail varnish helped to protect your nails. It was unclear why – just that it
did. Fair enough, I’ll give anything a go. Note to self to go home and vamp it
up.
As was now my way, I attended bald headed. When we
sat down, 4 other women took their wigs off, the lady next to me saying ‘I’m
going to follow your example’. I was becoming more and more proud of my going
out and about without hair. Someone needs to stand up and be an ambassador for
chemo women the world over. At any moment in time there are quite literally
thousands of bald headed women out there – why do we never see them. I accept
that each of these women started of at a different point on the self confidence
scale before their current treatment began, but those at the upper end of that
scale, surely we should stand united and proud and make this condition less
unknown, less feared.
A lady next to me had a long haired wig on. She
told me that she once got in the car and got it stuck in the door, so pulling
it off her head when she moved behind the wheel. Someone in an adjoining car
looked over, a bit surprised, and the lady then rapidly tried to right her
‘hair’ with as much decorum as possible before driving off.
X
At the next visit to the pub it was decided that we
needed an infirm corner. There was me with my cancer. One of the other patrons
had recently had a heart attack. Another chap was also a former cancer sufferer
and had lost a leg as a result of the condition. Then it started to get a bit
competitive as bionic man talked about his artificial hips and knee.
It would be the final pub visit for a few days as
the next round of chemo was due the following morning. My mother was coming
along in attendance for that session, partly to give Steve a break and partly
so that she could see the process. This was the first time of having herceptin
and chemo in one session so the timings were a bit unknown.
We had Ana again, which was nice. She spoke to a
girl accompanying her grandmother, asking if she wanted to be a nurse. The girl
replied that she didn’t like blood or needles. Ana said that she didn’t like
blood and needles on herself, but didn’t mind stabbing other people. She also
wanted the address for my blog, having heard about her presence in it.
She struggled with my surname, calling me macaroon.
Other than when I accidentally disconnected my
chemo line, it was an uneventful visit. The disconnection did put Ana into a
minor panic, who leapt over to me, saying that chemotherapy could have got
everywhere. From her reaction, it seemed that this was a serious event.
When we got home, I went to sleep. However, I
didn’t suffer quite so much over the next couple of days. This may have been
because I stopped taking the anti sickness medication. I didn’t feel sick and
they made me tired – so it seemed an
obvious step to take.
I was cautious after
this round. Cycle 4 had not been a pleasant experience. But, while I felt a
little tired – well, to be more accurate, I felt drugged and listless – I
didn’t have the restlessness which happened last time. Steve encouraged me to
go for an evening walk when he got home from work. Initially I wasn’t sure my
legs were up to the task, but with each step I felt more revived. The revival
did not extend long beyond when we stopped. But it was a positive step.
Then the itching began.
And now I need to back track a little. Prior to each chemo I see the consultant
to a) go over any side effects which I need help managing and b) check my blood
results indicate I’m well enough to be poisoned again. She always seemed
surprisingly delighted with how well I appeared to be. I didn’t ever moan about
the side effects – partly because, while unpleasant, they weren’t unbearable. I
knew I wasn’t going to feel well and in the great scheme of things it was all
being managed quite effectively. Also I was being prescribed enough drugs
already, all with additional, unwanted side effects. I didn’t want to take more
pills unless absolutely necessary. This time, however, I mentioned the
blistering rash around my port. She doubted that the chemo had had anything to
do with it, rather it was just a reaction to the plaster. She prescribed me
with some antihistamine tablets and E45. We didn’t talk about the itchy arse
situation. I was already armed with products for that and there are some
discussions that ought to be avoided just before lunch.
The prescription had
said ‘E45 – one big tube’. When I went to collect it from the hospital pharmacy
it was a surprise. Let’s just say that I don’t think I will ever need to buy
E45 cream again in my life. The tube was enormous.
A couple of days after
the chemo the skin around my port itched a little, but never developed into a
rash. The downstairs itching was being kept within tolerable bounds from the
anusol. And then I noticed a rash in the crease where my leg joins onto my
body. ‘Itchy rash’ I thought. ‘I’ve got just the thing for that’. So I used the
antihistamine tablets and E45. The itching was kicked into touch almost before
it began.
On day 3 the nasty
injections started. I didn’t look forward to them as they seemed to worsen my
heartburn. Then I decided to ease the acid problem by sleeping with an extra
pillow, to prop myself up a bit. It had taken 5 cycles for this gem to occur to
me – for which I blame chemo fog. Anyway, it worked. It still hurt to eat and
drink anything that had any more kick to it than plain porridge. But the ever
present acid burn sensation was much diminished.
Finally I had got all
the side effects under control. Just as I as approaching the end. Overall I had
been lucky with side effects. The only ones I had suffered were nausea,
tiredness/exhaustion, sore fingers, itchy skin and rashes, joint ache,
heartburn, hair loss, metallic mouth taste, thrush, minor and short lived lower
limb fluid retention and weeing more frequently. Other side effects available
which I had left on the shelf included constipation, hot flushes, vomiting,
shingles, mouth ulcers, infection, weight gain, cystitis, losing nails, sore
eyes, loss of sensation in hands and feet. Regarding the temporary menopause my
periods had now given up – 2 weeks from the end.
I did also have a very
sore nasal lining. It easily bled and was therefore largely comprised of scabs.
As each cycle neared the end, the scabs were close to healing. But then the
next poisoning took place and it would all worsen again. The body clearly has a
rigid priority order for healing itself, and nasal lining is placed very near
the bottom of that list. You never know when it might be useful to be aware of
that. Other than now, obviously.
On the previous cycle I
had had a wondrous moment of improvement before dipping into a few days of
crumpled joint pain ridden mess. So I was cautious about my improvement.
I waited.
The dip didn’t come.
The joint pain was there, but barely so. I had no difficulty walking or
standing. This was all going jolly well.
The thing with chemo
and cancer is that one is tempted to link any symptoms, any illness, with the
condition or its treatment. So when I woke up with a sore throat I didn’t know
if this was just harmless coincidence, a side effect or indication of a problematic
infection starting. It’s like your inbuilt security alert setting being notched
up a peg or two and you have to be careful to avoid getting neurotic about
these things.
And now the countdown
to the end could begin. This was the last time I would have a recovery week.
Next time I would be recovered for good. For life. One more blood test. One
more consultant appointment. This time in two weeks the last dose of poison
would be given. In three weeks time, it would all be over.
I was already planning a
weekend of food for when my immune system and taste returned for keeps. Runny
fried egg for breakfast, champagne in the hot tub (which had been out of bounds
on account of the bacteria risk), smoked salmon, rare steak, blue cheese.
XI
I was now back in the
office again with the intention of doing 2 weeks attendance before the last
cycle – aware that I would soon be back permanently and needed to build the
strength and energy.
Being at work was
exhausting. Well, work was ok. So was the commute. But the twenty minute walk
between the station and the office was difficult. It hurt, it made me out of
breath, sometimes it became difficult to put one foot in front of the other.
Perhaps this was the fatigue they talked of, which lasted for months after
treatment.
I bumped into testicle
man on the train home and talked to him about by new found experience of
survivor guilt. This had arisen due to discussions on the chemo unit with other
patients. Many were having chemo pre-op to reduce the tumour size. And I
suspected post op chemo would also be needed. I felt bad for having had such a
neat and simple cancer, something easy to deal with and cure. When these women
asked my situation, I didn’t like to tell them. He understood what I meant. On
the ward he had been on, most of the patients were terminal. We had all been
dealt our hand at random and it seemed wrong to feel bad about the result –
which was beyond any of our control. But the feeling prevailed.
In the paper that day
came the news that a 24 year old woman had died from pancreatic cancer. To
raise awareness of this highly fatal condition she had fronted a poster
campaign which read ‘I wish I had breast cancer’ – which has a 98% survival
rate. I agreed with the sentiment. If I had to have cancer, this was the best
option. Again, I had been lucky.
My step daughter texted
to say a friend of her from work had just been diagnosed with breast cancer.
Another of this years’ 50,000. This story will be repeated yet again.
This made me wonder
what advice I would give to someone else starting this process. Everyone’s
approach is different . But despite that, my advice would be this:
·
Believe
in your strength to get through this. Yes there will be highs and lows, but the
process is temporary. There is an end point. You will get there. It also helps
those around you to stay positive as they will follow your lead.
·
Communicate.
About everything. Friends and family may be uncomfortable talking about the
condition with you if you seem reticent to bring it up. Encourage your
significant other to let you know when they’re struggling to deal with things.
Let this bring you closer together rather than drive you apart.
·
Take
it step by step. This is a long process. Don’t look ahead to the full extent of
what you need to go through. Don’t worry about things that are weeks or months
in the future. Focus only on getting through the next part – be it a test or
surgery or consultation or treatment. Or simply dealing with the next day.
·
Accept
and plan for the change in your appearance. You can’t stop it happening, so
embrace it. Talk about the baldness and any body changing surgery with your
significant other beforehand so they know your concerns and fears – and you
know that no matter what, he still loves you. He still thinks you’re beautiful.
This was perhaps easy for me to say now. I was nearly at the end.