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.