Thanks, but no thanks, cancer.

There are so many different ways of handling a cancer diagnosis.  There are more ways than there are people who have or have had cancer, in my view.  As each one of is individual, each approach is unique.  It might be similar to many others, but it is essentially unique.  Why more ways than people?  Because this varies even within ourselves.  Much depends on where we are in the cancer experience.  In the three years eight months and 22 days since I learned I had cancer, I have veered between the “WTF – Cancer??” to “warrior” to “cancer rebel” to “advocate and activist” to “inspiration” and many more.  Each is valid to the individual and to where they are in the experience.  What is not valid is suggesting that one approach is right and another wrong – each must be respected even if it very different to our own approach.

One approach is to see cancer as a gift. Diagnosis of a critical disease does often bring a sense of gratitude and an accompanying “carpe diem” pair of spectacles.  And that is fine, but the carpe diem is as far as it goes for me personally.  Thanks, but no thanks, cancer.

I was in a sound sleep the other night. I must have stirred a little, as I was pulled abruptly to my senses by a familiar tugging and tightening in my calf. Yet another leg cramp was forming. Much as I try to relax the muscles before it spasms, I can rarely prevent the cramp from taking hold.  I know that if I can get out of bed and straighten my leg with the floor underneath then it will help, but lifting my leg off the bed makes the cramp worse.  Sometimes I can put up with it, but other times the pain is so excruciating that I hear animal like noises coming deep from my gut.  It is agonising for me and distressing for hubby J as he is disturbed from his sleep and tries to help me relax the muscle. The cramp the other night was one of the worse I have ever had.  My calf was in a complete spasm and even my foot was locked like Barbie’s, – my toes splayed in different directions.  I tried to move off the bed but was completely unable.  It seemed like an eternity and took a horribly painful manoeuvre to get onto the floor and start to ease the cramp. I was finally able to hobble and the cramp slowly abated.

The spasm had been so severe though, that the pain stayed for several days.  These cramps are a likely side effect of Femara (Letrozole) which I have been on now for nearly a year, following the switch from Tamoxifen.

Throughout that following day, I walked as if I had just celebrated my 95th birthday and was both immobile and incontinent.  My right leg was tender and painful from the cramping and it struck me just now much the Femara side effects have been getting progressively worse too.  I am increasingly stiff, move awkwardly and have pains in my elbows, fingers and both knees.  I yearn to be able to move freely and resent this debilitating impact on my wellbeing and the constraints on my mobility.  The days following this particular cramp session saw me walking very gingerly and awkwardly indeed.

Thanks, but no thanks, cancer.

There have been a number of unwanted “gains” from cancer – we are too familiar with Twang Arm, Captain Paranoia and of course the gaping void and long scar which is where my left breast used to be.  But there are many more.  Some are side effects of current medication, some are the after effects of the various treatments.  They are all unwelcome, but part of life.

Thanks, but no thanks, cancer.

I have a host of unexpected after effects – brittle and constantly breaking nails, highly sensitive soles of my feet, skin which reacts angrily to as much as a wrong look, or sticking plaster or stray hair, a digestive tract which remains sensitive following the ghastly gastric effects of chemo.  I still have the remnants of peripheral neuropathy in my finger tips (barely noticeable but just there) and my numb toes.  The numb toes which were the likely cause of my recent fall in March.  I often trip just walking around the house.  One of my colleagues recently remarked that I was now walking more clumsily.  I have difficulties with memory too, my personal memory card seems a little stale and has particular difficulty with numbers.  Finally “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.

Thanks, but no thanks, cancer.

One post diagnosis gain is the regime of daily meds I have to take.  Before cancer I used to pop one little blood pressure pill daily, to counter the family trait of high blood pressure which hit me suddenly when I hit the age of 40.  Now I have a whole colourful smorgasbord of meds throughout the day, some of which interact with each other, some which have side effects and which require another med.  Sigh.

The Smorgasbord

The Smorgasbord

As soon as I wake, usually around 5.30 am I have to reach for med No 1.  I have to take a synthetic thyroid because I have zero thyroid function.  I have no thyroid function because chemo zapped it into non-existence.  I have to take two small tablets and then I usually get ready to head out for my swim and cycle. Around an hour and a half later, after breakfast I have the next round of treats.  I now take a combination of 2 meds to keep my blood pressure stable.  One of these interacts with the thyroid med so I need to leave at least an hour between the doses.  Very handy if my morning routine has to change for any reason, like travelling, working away or if I were to have a longer sleep at the weekend.  Fine.  In the evening, I have a supper and bedtime cocktail blend of warfarin and Femara.  The Femara has replaced Tamoxifen which tried to do away with me by clotting my lungs with a sprinkling of clottettes.   The warfarin is the other gift from that little embolic episode. And my nightcap is a massive horse-tablet sized calcium supplement to counteract the effects of Femara which likes to deplete calcium from my bones.

Thanks, but no thanks, cancer.

I did not exactly enjoy being on Tamoxifen.  Would anyone? I felt a general weariness and also had terrible leg cramps as well as the legendary hot flushes.  I was glad to wave good-bye to it though and had hoped that Femara might be a little gentler.  After all, Femara and even Letrozol sound like more pleasant names than Tamoxifen, surely?  Unfortunately not.  As I approach my first anniversary since the Femara – Gecko union, I have had to face up to the fact that I am gradually feeling worse and not better.  I have been putting up with joint pain and stiffness which has been gradually but clearly increasing.

Thanks, but no thanks, cancer.

I was due my regular blood draw for monitoring warfarin effectiveness and clottery levels this week, and finally decided just to ask Dr O about the worsening pain and stiffness.  As soon as I mentioned and gestured about the pain he sighed and said he was pretty sure it was Femara.  He said that he has a few patients on Femara and even the way we describe the pains is pretty much the same. He asked me how long I have been on it, and when I told him that I have had 3 years now on either Tamoxifen or Femara he screwed up his face and said that they were truly horrible meds and that he could not wait for me to get to the five year point and have “freedom”!  Which was incredibly encouraging to hear.  Partly the validation that he recognised how draining and debilitating these side effects are, but even more so, that perhaps even after a couple of years, that I might actually start to feel better.  I had not realised that I have been taking this misery for granted and had pretty much accepted subconsciously that it would continue and just get worse.  For ever.  He ran a few extra blood tests – just to make sure that he was not missing anything, so calcium levels, potassium and liver function were all checked.  And very happily, all came back nicely within the regular ranges.

However, he has recommended a Fish Oil supplement to help ease the joint pains.  Another colourful addition to the smorgasbord.  And that brings with it another consideration.  So many of the meds interact with each other they have to be carefully timed and it starts to get really complicated. The meds do not just interact with each other, but also with certain foods.  Warfarin is less effective when you take wonderful cancer-busting greens and other Vitamin K rich foods.  And other healthy foods like cranberry can cause haemorrhaging – all of which curtails nutrition options and takes so much control away from me in ensuring I have as healthy diet as possible.  So contradictory and counter-intuitive.

fish oil

I also ranted on my Feisty Blue Gecko Facebook page that evening, just to see if I was alone and how others dealt with this.  I was again reassured that I am far from alone, and my weariness with the side effects was valid.

So I have to confess to being grumpy and crabbit at the moment.  I am so over this cancer crap, and the fact that I cannot sweep it to the side as if it had never happened.  And that is not beginning to take into the account the whole “No Evidence of Disease is not the same as Evidence of No Disease and this beast will continue to haunt and taunt me”,  but purely dealing with the realities of the here and now of life following diagnosis.

Don’t get me wrong.  I know I have a great deal to be thankful for and I AM truly thankful.  I know I make more effort to value time and carpe the diem.  I still make a “five sticky plan” for weekends, aim to maintain a work life balance as far as possible in this incredibly demanding context of change and more change, and play (subtly I hope 😉 ) the cancer card if that is too threatened.  I have a beautiful morning routine which is largely “thanks” to cancer in that I know that exercise is known to be a factor which can play a part in reducing recurrence.  I have my Wish Bucket full of starfish,  kangaroos and funky nail art, and an update on that is coming very soon too.

I am also planning an escapade.  The year has been one of my toughest, so a little escape for creative and healing time is planned next month.

And of course, cancer gives me HEAPS of material and thought which makes its way into blog posts!

So there are a number of things from the cancer experience which I acknowledge have had a positive influence. And apart from cancer, I have a great deal to be thankful for – living and working in this part of the world being just a starter.

thank you starfish

But cancer?  No, I do not think the day will ever come when I could ever say “thank you” to cancer.

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And the Big Man said………..

This is a little late in posting, because I found myself, as always after the checks, totally spent, emotionally and physically.  I have been really nervous about this latest round of checks.  Probably a deal more nervous than I would care to confess, particularly to myself.   On top of the anxiety, the inability to plan beyond a few weeks has brought a strain that has been constant. That anxiety has been fed both by my own health, as well as the ongoing family situation.  All in all, exhausting and wearing.

As usual, and based on the experience of recent months, I have refused to book any travel or make any plans for immediately after the checks.  I have had to rearrange or cancel travel too often and it feels as if I am tempting fate if I do book travel.

As usual, I had to fast from midnight before heading into the hospital for the blood draws and the start of the whole check process, on Thursday.  Before I left, I had a few minutes online to make sure there was no untoward news from home.  I start and end every day in that way.  There was nothing from Scotland, but I was terribly saddened to learn that yet another woman, Donna Peach, whose blog I follow, has been taken by breast cancer. As her husband told us using her own words, she had danced into the light.  The fact that she is the third person I know personally within less than three weeks to be stolen by cancer, is a stark and unneeded reminder that this disease is aggressive and unpredictable.  Seeing the sad news of Donna’s death hit me additionally hard on the morning of my own checks, as I selfishly felt myself interpreting this as a “sign”, which did not bode well for the day.

So I am very happy to report that as far as my own checks are concerned, it is good news.  And for once no little provisos it seems.  I have been dancing around NED these past months and he has been almost there but not quite.  I did not quite get the clear “we see No Evidence of Disease”.  Rather, I have had these little snippets of “hmm, it is probably not anything sinister but…” There is a huge difference between NED and not quite NED and it is very hard to communicate how different they are.  In the same way there is a huge difference between No Evidence of Disease, and Evidence of NO Disease.  And that is what would make life look very different.  That is a discussion for another day.

These checks involved the usual bloods, prods and an unseasonal bonus ultrasound which pegged out a number of little shapes.  I almost prefer not being able to see a screen as I am always compelled to look and analyse.  I even seemed to get a discount, perhaps for good behaviour, or more likely for being a frequent flyer and clocking out so many hospital miles!

My surgeon examined me thoroughly, reviewing the ultrasound and saw nothing to be concerned about, noting a number of small cysts, and sent me packing.  Not before he admired my toenail colours though.  I told him that this was my auspicious colour and therefore I had a clear expectation that the checks would go well!

auspicious toes

Then I saw the Big Man, Dr W2.  Again a lot of prodding, and questions about my fall.  I blamed Tamoxifen for my clumsy toes, to which he countered, “You’re not on Tamoxifen any more”.  I explained that I meant Taxotere and the neuropathy which has never entirely disappeared and left me with clumsy feet. As well as clear memory and confusion issues which I had just demonstrated unintentionally!

The upshot of the bloodwork is that, although my tumour markers are still a bit high, they are not rising.  One of the reasons I was especially anxious about these checks is because it would provide three tumour marker readings.  And three results will show the start of any trend rather than one result out of context, or an A to B result.  If you want details we are talking readings of 30.2 then 27.8 and now 30.  So this shows relative stability and not a rapid increase.  The fact that is above the reference range (or “normal”) is quite probably related to taking warfarin.

He also commented on the toenails!  Note to self – get the same colour next time, it seems to work!  The biggest indicator of the day came from the words of the Big Man (my oncologist) himself.  He told me that he wants to see me again in SIX months.  Not three months which I had been expecting to hear.  Which I had not even dared to hope that he might say. No he clearly said SIX months and calculated the meds I would need for that length of time. Six delicious long months.  This means that I can start to think about planning my life again.  This is a biggie, as I had already progressed onto six monthly checks nearly two years ago, and then the embolism followed by the raised tumour markers meant that I was called more often.  It felt like a huge step backwards at that time.  So this progression to six months is a Big Deal and hearing those magic words made me realise just how huge it has been in my head.

The checks were tough for another reason.  For almost as long as I can remember, my friend and I had planned our checks for the same time, so that we could support each other and be naughty cancer rebels in the waiting rooms. We have both been through unexpected extra scans, and scares and know how to be there without either dramatizing or trivialising what it is like.  She was not with me this time.  She has moved out of the region and we are both now going through these in our separate ways, still supporting each other online and equally outrageously.  I missed her far more than I had realised I would.  And when I got back to the comfort of my room later, I found myself weeping unexpectedly.

So the headline, in the words of the Big Man is “come back in six months”.  Not three months, not tomorrow, but six months. Six. Long. Months.

I now have to buy a new suitcase, to replace the one which was damaged in the return journey from Scotland.  I will make sure it is big enough to stowaway NED and keep him locked in captivity for as long as I can keep him there!

DSC_0073

And in the meantime, I can focus on the important things, especially when they are images created by and bathed in the soft light of the late afternoon sun. And particularly when they are captured by my New Camera.  And that is another happy story for another day. 🙂

Barbie toes!

I have to confess, that I am still taken aback a bit by the complexity and sneakiness of the Tamoxifen side effects. The fuzziness creeps up on me and I blame myself rather than the drug. I get frustrated that despite my daily exercise I am not losing weight and forget that it is a well documented Tamoxifen side effect. But the night time cramps? I am in no doubt that the culprit is Tamoxifen.

Last week something must have been going on, some misalignment of planets or imbalance in my diet. Or both. Whichever it was, the result was a series of horrendous night cramps. You know the kind which wake you up with a start? The ones which make you squeal and groan out loud. The ones which sharply snatch your peacefully sleeping spouse from their sleep, thinking there is some dire medical emergency. I have not been too badly affected by the Tamoxifen cramps so far, so when they struck last week I was puzzled about what had triggered them. The first morning they visited, I thought it was a fluke and after hopping about the bedroom trying to loosen the taut muscles in my calf, I soon forgot about them. However, two days later when I was abruptly and very painfully seized from my sleep with a particularly severe onset, I started to wonder what was going on. This time, they were really nasty and clever. As well as the calf spasm, my middle toes joined the contraction party and parted company, deciding to point alarmingly in different directions. I defy anyone to remain silent when under this type of attack. I couldn’t help the cries of pain and no matter how hard I tried to get the cramps to relax, they refused to cooperate. As a last resort, and in desperation I tried to set my foot on the floor to try and lengthen the muscle and ease the cramp. To absolutely no avail. And even worse, I was completely unable to flatten my foot – it remained stubbornly pointed and resisted any movement with a renewed sharp stab of pain. So there I was, with toes like a Barbie doll, prancing around the bedroom wondering why I seemed to have acquired Barbie’s foot and wondering if it would stay like that for the rest of my life.

Happily, the plastic toes finally softened and I was eventually able to put my foot on the floor, gingerly and painfully. Of course it was impossible to get back to sleep – although poor sleeping spouse did manage to nod off again, muttering and clearly re-living the scary Barbie toes experience! I am not sure which is worse – having a wife with only one asset or one with Barbie toes!!

So, Tamoxifen, you certainly know how to make your presence felt. Let’s get one thing clear then – I am prepared to let you into my life, and body, on a very clear understanding. That you work flat out to keep cancer away. If that is understood then I guess I can live with the Barbie toes and your other side effects.

Middle ground

I am in a pretty good place right now.  Apart from kicking myself that I didn’t start this sunrise swimming strategy months ago, that is.

I have now reached the end of the second week of this dawn swimming and cannot believe how good I feel, despite having fewer hours sleep every night.  I am astounded at how much difference there is between an evening swim and a morning one.

I feel as if I have more energy – take that, Tamoxifen!  I hadn’t realised just now tired and fuzzy I was feeling all of the time.  I am still on a bit of a low peep but definitely feeling less tired.  Twang Arm is taking a bashing and it feels as if it is losing its grip (every pun intended 😉 ) – it is less painful and I am able to swim quite a bit faster than before.  More than anything else though, it is a great psychological boost and I find my mood lighter and motivation stronger with this different daily regime.

The timing is good too.  We are in a particularly frenetic period at work and I am finding it hard to keep my promise to myself about maintaining a healthy work life balance and this start to the day helps enormously.

However, I have to remember that I am still in that recovery phase and my body still marked from the ravages of the triathlon hell of cancer treatment.  It is difficult to communicate that though.  In this strange post treatment life, I feel that the rest of the world expects there to be only two states which I can be in – either ill or completely well.  There doesn’t seem to be an in-between.  Yet the reality is that I am physically still very much at an in-between stage.  I am well.  I am pretty strong. But I am not quite fully well.  The punishing months of chemo, surgery and radiation have really taken their toll on me physically.  I still have some neuropathy (numbness) in my fingers although it is improving.  My toes are still uncomfortable, numb and feel stiff and too big for my feet!  I have a horrible kind of deformed toenail where one of my toenails fell off and another is still a gross black colour.  My fingernails keep splitting.  I feel generally sluggish and slightly lethargic, and my thinking also feels a bit slower.  I have the side effects of Tamoxifen to add to that – perhaps that is the main cause of the sloth-like state.  Perhaps I should have a label round my neck which says “handle with care”?

So I feel that I am very much in a kind of middle ground, albeit a good middle ground, which is heading in the right direction.  But a middle ground nonetheless.   I’ll keep you posted on how that ground shifts as I am sure it will continue to do so.

Tamoxifen Tigress

Although I have crossed the finishing line in the Triathlon from hell, I have the delights of Tamoxifen to contend with for the next 5 years. My tumours were hormone receptive which means that I have been prescribed Tamoxifen to prevent recurrence.

In a similarly cavalier way to the one in which I approached radiation, I thought that swallowing a pill every day would be no big deal. Then I learned about the effects of Tamoxifen and the reservations many women have about taking it, especially over a prolonged period of time.

Tamoxifen is seemingly a pretty strong medication with a number of equally strong side effects.  Just what a body recovering from surgery, chemo and radiation needs! That gives a choice between more long term strong drugs and the possibility of the cancer beast returning. Not much choice really, in other words. The more serious side effects include – blood clots, strokes, uterine cancer, and cataracts and the list of less serious side effects is very long!

In my first check after chemo, Dr W2 prescribed my Tamoxifen. And as an indicator of things to come, he also prescribed a calcium supplement as one of the side effects can be to affect bone density. Incidentally, those supplements are enormous – about the size of a brick and just as difficult to swallow.

Already I am experiencing a few of Tamoxifen’s delights. As I still have a number of residual side effects or after effects from chemo, it is not always so easy to know what is caused by Tamoxifen. For example, the nasty bruise on my big toe. It is not getting any smaller, and I read that a number of women on Tamoxifen lose finger and toe nails so I am not sure if I have that treat in store. Similarly, I have a permanent sensation of coldness in my toes and increasing numbness. My toes feel too big for my feet and they are awkward to move. My fingers still have that annoying neuropathy (numbness) and it is still difficult to do up buttons, write, and other fine motor tasks. I discovered yesterday that I am incapable of peeling an orange!!

One horrible side effect is a visibly fuzzy face – how gross! I can see a down developing on my face and am going to have to get rid of it somehow before I am thrown out of the ladies changing room! I keep thinking it might just fall off and putting off the task of finding some appropriate way of getting rid of it.

Another effect is that my personal thermostat is broken. It is common to experience hot flushes and I sure have my fair share of them, especially at night. However, I also have a strange sensation of cold frequently, a real cold spell. I lurch between shivering and wrapping myself in the sheet and then have to throw off all covers and try and cool.

Something I have been trouble with a little, but not greatly so far (touch wood quickly) is leg cramp. Though when I do get them, my goodness they make me squeal. Considering the most common time for them seems to be just before dawn, it is a great way to wake me up!

The other hormonal type side effect is one which is not too problematic for me – one of moodiness and irritability. Not much fun for those around me though!

I have only been on Tamoxifen for a couple of months but already I feel its effects. The thought of taking it for 5 years is daunting – but let’s face it – the alternative is a site worse!