More about this strange phase

A quick follow on from yesterday’s post………….

I am definitely not alone and have been pointed towards this article on this strange post treatment phase.  Cure Today has also picked up the discussion again so it is very well timed for me. 

Some of the language in the articles I have even felt myself using – so it is highly reassuring.  I hope it also helps near and dear to understand why I am in such a strange place when I should be celebrating all the heavy treatment being over.  Oh, if only life, and cancer were so simple!

Not alone!

So it’s not just me then!  This evening I have read Chemobabe’s latest blog entry and we may be in different continents, and on different sides of the planet in fact, but we are in almost the same place in the post treatment phase.  I was also pointed to an article from Cure Today which documents in some detail, the psychological process experienced by many once the heavy treatment phase has been completed.

It is in many ways reassuring to know that I am not alone in feeling strange during this time.  This is why I can’t revert magically back to the pre-cancer days.  However, it is one thing knowing that I am not alone and that this is a process I am going through, but it is another totally different thing bridging that rational understanding to the way I feel!

And it probably also explains why I have been so mega grumpy over these nasty shingles and unfairness of them catching me as I am trying to nagivate my own re-entry.

Cancer free? The all clear?

Now that the heavy treatment has ended the most frequent thing I hear is the question about whether I have had the “all clear” and if I am now “cancer free”. 

This is a really tough one to understand, let alone explain, but essentially and unfortunately, there is no such thing.  Once you hear those words – in my case “highly suspicious of cancer”, there is no turning back.   You can’t put the lid back on the box, life changes forever.  The tumour has been cut out, along with any surrounding tissue which might be affected, including lymph nodes by the dozen.  My whole system has been blasted with 8 cycles of super chemotherapy which has destroyed any fast growing cells (including cancer cells which might have been lurking after the surgery) and also laid waste to my immune system, red blood cells and still affects the nerve endings in my fingers and toes.  Massive doses of radiation in the area local to the original tumours have swept up any final vestiges of any cells attempting to break away and try and re-group into a sinister manner.  And now the Tamoxifen is blocking hormone production which can spark new naughty cell activity.  So all in all, a massive arsenal of heavy duty medical might has been used to destroy the cancer and any remnants there could be.

And that’s marvellous, trust me.  It is highly reassuring to know so many powerful agents have been used to obliterate any cancerous attempt on my body.  However, there are no guarantees with this beast, and recurrence or even spread and secondary tumours are entirely possible.  The best to hope for is that the regular checks find “No Evidence of Disease (NED)” The longer you hear the magical NED following diagnosis, the better the statistics are and the prognosis in the longer term.  Hence the regular monitoring and follow up, and the reason why it is every 3 months for the first 2 years. 

So, I am no longer a “cancer patient” in that I am no longer undergoing treatment.  I am still here, so I am sure I can now call myself a “cancer survivor”.  However, I cannot call myself cancer free as I have no idea if there is or will be any re-grouping of those dangerous cells.  After 5 years without recurrence the checks reduce to an annual basis because the statistics indicate that recurrence is less likely after 5 years.  Even then I cannot be cancer free. 

That is on the medical and physical side.  On the psychological side, I hear a reprise of “things will never be the same again” picking up. I can do many things now that I could not even a month ago and am getting stronger every day.  However, my mind is always alert to my vulnerability.  I am hanging on to the next appointments and checks with the Drs W and W2 in the hope that they will tell me that everything worked and I have no need to worry now.  But we all know that it won’t happen.  The best I can hope for is NED.  I know I should not try to read little clues into everything Dr W2 says as it does not reassure me, but I find myself unable to do otherwise.  His reluctance to remove the port or de-port me convinced me that he thought I was a certainty for recurrence.  Equally difficult is the fact that I can no longer take my professional path for granted.  Would I be too great a risk to employ after my current contract finishes?  I know I need to just put many of these things to the back of my mind, but that is way easier said than done.  The appearance of that small lump on my neck last week and the sinking feeling it brought indicate the precarious nature of my relationship with the cancer beast.

So cancer-free I am not, and never will be.  However, I will have those regular checks and very careful monitoring and I have to be confident that if the cancer beast makes any attempt to show its face again it will be spotted very promptly.  It will also be met with another arsenal of treatment and as unpleasant as that is, I know that I can cope with it.  As long as the sun keeps rising in the East, or rises anywhere really, I have to remember how much I have to be thankful for.

Onwards and upwards it is then…………

Shingles news

A short shingles update.  The spots are fading – yippee!  They are pretty dry now and I reckon I can go swimming again.  More yippee!  I do find their little trick of becoming more painful as they fade quite intriguing (if unwelcome).  How can something you can hardly see be painful? 

I do feel more irritation appearing in other areas, but it disappears again.  I think it must be a combination of heebie jeebie chemo skin, radiation dry skin and shingles interference with nerve endings to confuse me.  It is uncomfortable wearing clothes near the area with the rash but there’s not a lot I can do about that!

I am still exceedingly cross with the shingles though, for stealing what should have been important healing time.  Perhaps in weeks and months to come I can be amused instead of angry that a diagnosis of shingles provoked a far more violent reaction than that of cancer!

A rash promise………

……….without the promise? 

That’s a bit how life feels at the moment.  All rash and nothing much else.  I am still really cross and upset about this latest twist in the gecko’s tail (tale) and that is not helping.  The timing is rotten in that it is the last thing I wanted or needed at this stage in my path towards recovery and healing.  However, it could have been worse – the thought of shingles while on chemo does not bear thinking about…………….

We are now over a week into the shingles experience and it is bearable, if unpleasant, uncomfortable, irritating and painful.  I got a bit worried on Monday when new formations seemed to be springing up in a different area as that made me concerned about the virus becoming generalised rather than the affected nerve area.  Then it stopped and those areas have not developed so I HOPE that it was just my skin being really sensitive and irritated rather than a wider outbreak.  The affected area is on my upper arm, upper chest and underarm on let’s call it the “good” side – though we all know what that is a euphemism for!  The underarm area is the most painful partly because that is apparently where the affected nerve is, and also because my skin and those tender sensitive spots rub against either other skin or clothes – or both!  So now Twang Arm has an accomplice!  (Must be laughing up its sleeve – hmmmm)  I am not allowed to swim until the rash dries (lovely) so both arms are giving me a hard time.

The whole experience was not helped by the discovery of a small lump on my neck at the weekend.  Any little bump or lump now brings a renewed stress as it can be a sign of spread or recurrence.  My stomach turned over, and I knew I would have to get it looked at, probably need to get to Bangkok sharpish and the dark thoughts of prognosis and spread take a hold in the mind.  When I checked it the next morning it was considerably smaller!!  PHEW!  It has now disappeared altogether.  It was obviously a mosquito or insect bite, or heat rash and not a new tumour!!! It just shows how alert we must be to any change or sign which could be worrying, and how much we still walk on a knife-edge even in this post treatment phase.  The whole matter of being a cancer survivor but not “cancer free” as such is a strange one (watch this space for more on this) and one which I am trying to get my head round.

For now though, my focus is on banishing this wretched unwelcome visitor – GET LOST, SHINGLES and let me get on with my recovery!!!

How did that happen?

As I was putting together my thoughts on Tamoxifen and its great variety of side effects over the past few days, I developed a bit of a rash.  Great, I thought.  Tamoxifen must be to blame.  Sure enough, a bit of Google revealed that an allergic type rash can be a side effect.

The rash started to spread a bit, and was very itchy so I headed to the Doctor to see if I coud get something magic for it.  The last thing I expected was to learn that I have shingles!

So my weekend is starting out as a very grumpy gecko indeed.  I am pretty uncomfortable and in a foul mood about getting shingles.  Add that to the Tamoxifen tantrums and it is probably best to avoid me for a while.  Grrrrrrrr……..

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!

A new chapter – picking up the pieces

It really is the start of a new phase and I am indeed back!  It is wonderful to be able to unpack right to the bottom of the suitcase, particularly knowing that I will not be re-packing in a few days.  (All being well and being ultra careful not to tempt fate, of course!)  I am slowly trying to pick up the pieces from last October when life changed. 

Things have of course changed a bit in my 9 months of limbo and treatment.  Friends and colleagues have moved on, new ones arrived, rainy season is here, and there have been lots of changes and developments I need to catch up on at work.  It was strange and emotional walking back towards my desk and I really had to brace myself to cross that physical threshold.   

I am trying to reconnect both professionally and personally, although this is hindered a bit by the fact it is prime holiday season and many folks are away.  I am also trying to ensure that my daily routine prioritises my health and have joined the swimming pool, and make a point of swimming most days.  This has been sabotaged a couple of times by monsoon rains at the wrong time of day, but I keep trying!

I have also finally ditched my headscarf (yes, I’m topless now 😉 ) and although I still feel self-conscious about the skinhead hairdo, I feel better without the scarf so I hope I do not frighten too many people while I wait impatiently for the hair to grow back a bit more.

A surprise has been the revenge of one of my chemo treats – a feast of jazz music for the i-pod, which I just loved when I got it.  Well now it has bitten me while I was unawares – I tried to listen to Jamie Cullum the other night and realise that if I even think of his music it transports me instantly back to those awful groundhog days.  Sorry, Jamie!  I am sure this will fade in time but for the moment, you are off-limits!

I am also trying to do things which I could not while I was in the chemo cave – that’s not difficult really, as in the latter stages of chemo life consisted of sleeping, swimming and trying to eat so I usually only left home to go to the pool.  And, of course, for those awful blood tests which always marked the imminent return to Bangkok for the next punishing dose of chemo.  As my strength returns I am eager to pick up on the things which I could not do and go to places beyond me in those recent months.

Time marches relentlessly forward and I am doing my best to march forward too, with all the changes, fears and uncertainties that have been gifted to me by whole experience.

Image

I seem to be developing a new look! 

Dr Evil is fading and being replaced by Annie Lennox!  I confess there is a mighty dose of wishful thinking there, almost certainly influenced by the fact that I am a huge fan of Annie Lennox.  But if you can imagine Annie Lennox with shorter hair, less platinum blonde, more platinum grey then I am nearly there.  Oh, and a totally different face!  The Jack Nicholson hairline is still a feature of my hairdo, but that seems to be hidden a bit by the mouse coloured stubble.  Before my “trim” in Scotland, I had a dreadful mad professor look – pure cotton wool white tufts sticking out to the sides, bald patches on top, a dreadful receding hairline, and a white-ish Mohawk where the hair was slightly longer.  Not good for the self esteem.

I am now at the stage when I occasionally go “topless”, as it is often jokingly referred to in the Breast Cancer Forums.  Unsurprising this means going out in public without scarf, hat, wig or other baldness disguise, and is nothing to do with clothes!  Oddly, I generally feel less uncomfortable being “topless” in the company of people who did not know me when I had hair or who I don’t know at all.  I am not quite at the stage when I can go out without some sort of emotional prop for the head.

My “sun-bed” look is not so attractive.  My radiation tanned skin is peeling beautifully, very rough and sandpapery and bringing a very interesting patchy look.

My fingernails are really fascinating.  As well as having an intriguing pattern of white lines which could be highly desirable (if somewhat hard to design) in a nail studio, the top half is still a strange orange-red colour from the Taxotere cycles.  The pale lower half clearly shows the growth since the Taxotere stopped. 

 I could patent the design although I would probably not include the element of the nail lifting off the nail bed.  I am not going to talk about toenails as they are just horrible.

So things will never be the same, I am sure, but they do seem to be changing when it comes to appearance.

Re-wind

Mathematics, sums, numbers and things related have never been my strong point.  Trigonometry is for me both a bad memory and a mystery and I have no idea who Calculus was!  Well, now it is apparent that even basic arithmetic is beyond me – or can I blame chemo brain?

The length of time between 2 October and 2 July is in fact 9 months and not the 10 months I have been happily referring to.  While it is not great news that my counting is so poor, it is far better news that I have donated 9 months rather than 10, to being “on hold” during the Triathlon of treatment.