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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30 thoughts on “Thanks, but no thanks, cancer.

  1. i so appreciated coming across this morning. i was having a cranky cancer morning, feeling like i am too far out to really gripe about it.

    your refrain strikes the perfect chord: thanks but no thanks cancer.

    • Thank you so much for your words. It is so hard to express how hard this is sometimes, and hard to walk that tightrope between being true to ourselves, yet not upsetting those around us. Bleurgh.

      Big hugs to you my cancer twin and peer, and I hope that this week brings better things (((hugs)))

    • Definitely having a cranky cancer day (love that phrase)! I re-read this amazing post that puts into words all that I am feeling. I feel guilty for being cranky for these after effects when I feel like I should be grateful that at the moment I am cancer free. I just want to wipe the slate clean, start life over, and forget this ever happened.

      • Thanks for your comment. That’s exactly it – cranky, but feeling bad for feeling cranky! I am sorry you are in this space too. I am waving a stick at cancer, hoping it could be a magic wand …… 😉

  2. Oh my gosh, Philippa, this sounds like me! I have been experiencing many of the same things as a result of my Arimidex. The side effects of these drugs are incredibly difficult to deal with sometimes and yet, we sort of feel guilty because, what right do we have to “complain”, right? This is so refreshing to read and to realize others get this too. I’ve been meaning to write a “rant” about this topic too. Thank you for writing this! And I’m sorry about the crappy cancer fallout.

    • Bah – so sorry to hear that you are also in the midst of this. And you rightly put your finger on the very point – we are here, aren’t we? We have an option which might well make that difference between progression and not………….. I am conflicted by the level of resonance and support too – reassured that I am not alone, but gutted that so many of us are struggling! Blauergh!

  3. I don’t suppose that those who haven’t been there will truly understand the “afters” (when the cancer is gone so you’re fine right???). I’ve found it’s important to get support from both those who without cancer who love you and those who can truly understand from experience. We all have our negative days but being positive and having a sense if humor extremely improve the quality of life!

    • Thank you so much for your insight and perspective. It is indeed good to have a range of support and get that balance between being realistic about the “afters” (I love that term 🙂 ) and yet not letting it take over. And yes, those tools of humour and outlook are very much at our disposal and help to get through the days when we would prefer a sledgehammer! Thanks 🙂

  4. OMG!! My onco wants to start me on Arimidex. I don’t know if it’s worth it. Being “technically cancer free” makes me think twice about this. Is the benefit worth the side effects?

    • I really hope that this post did not alarm you! I think it is important to know what your options are, and of course we are all different in how our bodies react to these meds. You could be lucky and have minimal side effects……… My own Tamoxifen side effects were less wearing than the Femara ones are now. Except for the embolism of course!

      The fact that I am still on Femara despite the heavy side effects tells you what my own decision was. At the moment I would rather have that control over the situation and sense that I am doing all in my hands to keep progression or recurrence at bay. Of course, that might change, but for the moment that decision is right for me. I wish you luck with your own decision.

  5. Sounds like me too! Except I still have a thyroid – but my neuropathy goes from my toes all the way to my butt!

    The things you wish they told you about from the start….

    But alas, we’re alive, right??

    Thanks for sharing my very own feelings!

    Dianne Duffy

    • Thanks so much for your solidarity and support! I am glad you still have a thyroid, but sheesh that is some neuropathy, way more than peripheral!

      I am also struck by your point about knowing all of this from the start. I struggled a bit in posting this, as I do not want to cast a cloud for people who are either in the midst of or coming through the very heavy treatments and who are looking forward to freedom from these extremely heavy side effects. Especially chemo. I am not sure how much I would want to know from the start.

      But, as you say – hey we are indeed alive and very much kicking!! And not alone in this aftermath.

      Take care and thank you so much for your kind words 🙂

  6. dear phillipa,

    ayyiyi – we all seem to get stuck between a rock and a damned very hard place. the complex cocktails of drugs that need other drugs to counteract side effects is stultifying in itself. I am so glad you were able to honestly and insightfully write it all out. I know it will help legions of others who are suffering much of what you describe and I, for one, feel much less alone about it. and I hope that you get some relief in having chronicled what issues get a loud and clear, big fat retort of NO THANKS, CANCER! and I couldn’t agree more.

    sending you light and love, xoxo

    Karen, TC

    • Ayyiyi – What a great expression!! Much more positive than bleurgh which is one my regular exclamations!

      Yes, between a rock and hard place, that is it in a nutshell. I have been blown away by the fact that so many of us are stuck in that difficult place, and feel simultaneously less alone yet more upset that so many are struggling, often so silently.

      Love and light to you too – thank you so much for your insightful thoughts and continued support.
      P xoxox

  7. Dear Phillipa, Thank you for this amazing post! Oh my gosh! First of all, I am so sorry you are dealing with this. Second, thank you for sharing all of this . . . I woke in the middle of the night a few nights ago with the most excruciating pain in my calf and foot – I had never experienced anything like it before and until I read your post, I had no idea that this could be a side effect of Tamoxifen. I have had foot cramps where my toes are splayed – seemingly permanently – no amount of force can put my toes back where they belong until it simply subsides on its own – and it is quite painful. But, I had never had the kind of severe, truly excruciating leg cramp before until this past week (so I guess I have been lucky).

    I attributed this episode to diet changes or maybe not having enough calcium.

    It is so important that you have shared your story – this is the stuff that they don’t tell us and quite frankly, it seems to be the stuff that many doctors don’t know about, or if they do, they play ignorant. I feel as if I can not complain about any side effect because I am supposed to simply be grateful to be here (and don’t get me wrong, I AM very grateful to be here) But, the “here” that many of us enjoy is littered with cancer fall out and many around us (who have not experienced this) simply do not understand. I think that is the hardest part about all of this for me – is that people around me really don’t think there is anything wrong, that I am fine (after all, I don’t have cancer anymore, my hair grew back, I don’t look sick). I don’t feel like I am even aloud to talk about IT (the fallout, the pain, the side effects of Tamoxifen, the neuropathy, the feeling of being displaced in my own body).

    I really can’t think of more than a handful of pain free days since I was diagnosed in 2009 – I have been on Tamoxifen for almost three years (was on Herceptin before Tamoxifen) – so I am about where you are in that five year deal. I am supposed to switch to an aromatase inhibitor (which I am dreading because of the fear of bone loss and of course more side effects).

    Anyway, I really wasn’t intending on writing a novel here. I am just so thankful that I came across your post today. It speaks to me as it does to so many.

    I am so grateful that I am cancer free. I don’t take that for granted ever, not for one second. And, I am grateful for the people I have met (both in person and virtually). But, as for the rest of it – “thanks, but no thanks cancer” . . . thank you for writing this post, what a great refrain.

    XOXOXOXOX
    Lisa

    • Thank you so much, Lisa, for such an interesting and thoughtful comment 🙂 Thank you too, for re-blogging ☺ I have not been online much the past coupe of days, and will comment there shortly and join the very interesting discussion in the comments

      I am sorry that you, too are dealing with these side effects, they do bring an extra challenge to the daily deal. I am very interested in your juicing approach. That is something I will try too, I have been very careful and attentive to my diet right through this whole experience and am convinced that this made the chemo days better than they might otherwise have been.

      I was very lucky with my doctor – he almost immediately attributed this to Femara and said how hard a med it is. Although it does not stop the pain and discomfort, it does so help to feel that this is validated.

      Thank you so much for taking the time and trouble to write such a considered comment ☺
      Take care
      Hugs
      xoxox

  8. Agreed about not thanking cancer for anything. Just the amount of prescription meds I have to take for Stage IV side effects is overwhelming. Beyond overwhelming. Cancer is an interrupter and an interloper. Thanks for writing this post with which I can so identify. xo

    • Thank you so much for your comment, J – I can barely imagine the range of meds for Stage IV, and how heavy they must be. You are right, cancer is an interloper.

      Sending you love and warm wishes, and hoping that those very meds are making a difference in a good sense as well as the overwhelming one. Big warm hugs xoxox

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  10. Phillipa, a wonderful post, and I can so relate. I was literally crippled by the effects of Aromasin, which occurred after my hellacious treatments. Oh, and my psychological state from this horrific experience is anything but good. I’m so sorry you are suffering and have to take so many medications. Thank you for this brave, honest account. And thanks, but no thanks, cancer.

    • Thank you for your comment, B and I am sorry that you too have been ground tackled by this cocktail of horrors. At least we are not alone, but oh my goodness is it a hard place to be. I just reached that “last straw” stage and had to vent. I have been surrounded by kindness and support through this and am so thankful. Thank you so much for your support xox

  11. I can’t believe I missed this post, Phillipa. The pills, the effects, the scares, the implications – it’s all so messed up and so frusterating. I am sorry you need to contend with any of it, I’m sorry any of us do. Vent as much as you need. Now, I’m off to read your latest post. ~Catherine

    • Oh thanks Catherine – venting is so important when it gets to that point and it is such an important release in the midst of the mess that follows us. I am thinking of you as you too with that uber-crap you are going through, love and hugs P x

  12. I missed this post too, Phillipa! I can so relate. In the fall I’ll be making the switch to an AI after being on Tamox for 2.5 years. I have grown used to the SE’s and do not welcome the joint pain that seems to come from the AI drugs. Blech!!

    I also take Synthroid (had Graves and my thyroid zapped) and a BP med. I feel like a walking pharmacy. I feel your pain.

    Hang in there my friend! 🙂

    • Thanks for your validation too R – and I hope for gentle AI side effects for you. I know the walking pharmacy syndrome – but on the light side I guess we would recognise each other in the street due to the rattle of all those meds inside us when we walk 😉 Thanks and it is good to hang in with such great company 🙂

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