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.

Not when, but if? …… Surely not!

As I near the finish flag in the Triathlon of heavy duty treatments I yearn more and more to get back to something like the way I used to be.  I know that it will take time to feel better, to get my own legs back and be able to do many of the things I used to be able to do.

The side effects of chemo have been a real mixed bag of delights.  It is no secret that I struggled particularly with the loss of my hair as I have ranted about it on various occasions.  I am sure it is no surprise then that one of the biggest things I look forward to is not seeing Dr Evil in the mirror any more!!

I remember so clearly, that day in November just after chemo 2 when I became bald.  I remember sitting in the chair at the hairdresser as the last of my hair fell to the floor under the clippers and being unable to stop the tears.  The shiny white scalp was such statement that I really, really was a cancer patient.

I have never been able to get used to being bald and I have really focused on the fact that hair loss from chemo is a temporary thing. In fact, the one thing I really need to hang onto at the moment is the belief that my hair is coming back, and coming soon.  After all it is over a month since my last infusion of Taxotere.  The fine covering of duck down must evolve soon into proper hair, mustn’t it?

So when I read this recent article suggesting that permanent hair loss after Taxotere is more common than we often expect, it was not a welcome piece of information.    According to the research, the numbers are people who experience permanent alopecia are not huge, but large enough to be significant – estimated at around 1 in 16.

One interesting discussion is that some people feel that they would have chosen not to have had Taxotere if they had been aware of this increased probability of permanent hair loss.

That really made me stop and think.  I cannot imagine that I would have even considered not having Taxotere, no matter how difficult I found the side effects, even if I had been aware that the hair loss could be long term.  Survival and recovery and the topmost priorities for me, given my diagnosis and pathology.

Oddly, the thing on my mind is more about how I felt that day in November particularly, and how I feel every time I look in the mirror at Dr Evil.  It was hard enough knowing my hair and I were parting company (no pun intended).  I do not know how I would have felt, and how I would have coped, if it had even occurred to me that this loss could be permanent.

I will be looking even more closely at the duck down from now on and let’s hope it does decide to thicken, grow and darken.

Progress re port

Yes, that’s right – this is not a progress report, but an update about progress related to my weird and perhaps wonderful port, which has been neglected recently.  It has been absent  from discussion here recently, as well as being unused since chemo 8.  I have certainly not forgotten about it though.

Since it was “installed I have always been aware of it and it can be quite uncomfortable.  The button on my neck remains a mystery and gives me the wobbles when I touch it by accident.  But, and it’s a big but, it made the chemo infusions far less trouble, pain and discomfort than having a cannula inserted each time.  The experience of IV antibiotics when I had my little encounter with pneumonia confirmed that emphatically.

Now that radiation has started, I have found that the port is more uncomfortable than before.  It pinches a bit when I sleep and when I raise my arm above my head for the radiation zapping sessions it also nips.

But here is the problem.  Firstly, the thought of its removal gives me more heebie jeebies. I know it is a small and easy procedure usually carried out under a local anaesthetic.  That means needles and cutting and being awake and freaked out when it is getting done.  That is Scary Thing Number 1.  And ironically, I am just as scared of general anaesthetics so that would be Scary Thing No 2 (or perhaps 1b since it would be one or the other).  Secondly, and I know this sounds inconsistent and a bit strange, but if it is removed, what happens if I need further treatment?  The problem with cancer is that you live with the fear and uncertainty of a recurrence.  That is the Most Scary Thing. The thought of recurrence is accompanied by the dread of more treatment, especially more chemo.  Scary Thing No 3.  And if that happened when the port has been removed then there would be the additional matter of another small surgery, with its cutting and needles and horribles to contend with to insert another port.  Scary Thing No 4.

There seems to be a mixed approach on removal of the port straight after chemo.  I have heard of many women who have said goodbye to their port pretty quickly after their last chemo and many more who are still nursing theirs.

So when I had an appointment with Dr W2 on Sunday, I was not surprised when he mentioned the port.  My stomach flipped as I knew that whichever option he suggested, it would give me the heebie jeebies.  My own preference would be to wake up one morning, and find that it had been miraculously removed in my sleep.  Not by surgery, you understand, by magic.

Dr W2 told me that he didn’t want to remove the port yet.  Of course there is a relief that no imminent surgery is facing me.  But of course, that brought in anxiety and fear that he secretly believed that I would need more chemo!  Irrational I know, but that’s what this does to you, believe me.  I asked him why, and he explained that it is such a simple process to remove it (yeech….) and much more difficult to put one in (probably even more so for a second one) that it was better to leave it in for the time being.

So a reprieve from needles and knives for the time being, but for my worry worry head, a bit of a cloud.

Then came the finishing touch.  As I am not having chemo any more, there is a need to flush out the port and make sure it is clean and there are no blockages.  Charming!!!  Seeing my face, he quickly assured me he was not going to do it right then and there but it would need to be done next time.  Something else to look forward to.

So that is the update on the port.  We are still inseparable and will be for a bit longer.

It also delays the moment when I find out more about what it looks like and how precisely it works.  It still freaks me out too much to find out detailed information when it is still there.  So in the meantime, here is an insight for you.  Quite literally.  When I had my chest X-ray in Yangon, there was a lovely clear X-ray image of the port.  The image below gives a sense of what it is like.

There are still many mysteries of the port, but the biggest one is about the funny button on my neck.  You can clearly see the port and the round shape where the special needle is inserted.  You can also just see the catheter leading from there which snakes around and eventually leads into the jugular vein (heebie jeebie jeebie).  There is no sign at all, however, of the button on my neck.  That is a mystery which will have to wait for another day.

Chasing the storm

I know this probably sounds a bit corny, but this picture really reflects how I am feeling.  The huge chemo storm clouds are there, but the greatest anger and strength of the storm are passing and the sun is starting to shine through.

The past three days have definitely seen a shift and the slight improvement I felt on Friday is still there.  I am far from running around (still hardly hobbling around!) but my legs are still less leaden and just feel that teensy bit “better”.

I know this is a long haul, and the taxotere effects particularly are going to be with me for some time.  As I write this, my nails are continuing to deteriorate and the neuropathy  (numbness) in my fingers and now in my toes is getting worse rather than better.  I also know that this can take weeks if not months to get better and I could be left with a slight loss of sensation permanently.

But, I feel better so that makes a difference!

There is another reason why these pictures are significant for me.  I took the photographs while traveling last September, only 11 days before I discovered the lump and my view and my world changed.  I know I was oblivious to the presence of the lump when I was focusing on the what was happening around me and I can’t quite remember what it was like.  It feels like a lifetime away.

Is something stirring in the depths of the chemo cave…….?

I really feel as I have been stuck in a dark place the past weeks.

Physically, I have been at an all time low (thanks, Rocky and pneumonia – you make a good double act!)  I am so fatigued and weak I struggle to get around and this seriously limits how much I can get out and about.  I know my immune system is non existent so I know it is also wise to avoid people.  I have been very aware and nervous about getting caught by another infection so all in all I prefer and feel safer staying in my cave.  The other side effects are heavy too.  My fingers are numb and painful so writing is difficult, opening a water bottle or doing up buttons is difficult.  Doing most things for myself seem to be difficult.  Fluid retention means I am uncomfortable all over, and the port area feels really tight.  My skin is very dry and super-sensitive and is peeling and blistering on my feet. My digestive system feels (and acts) as if it has been wrecked after dealing with the bouts of toxicity.  I feel as if I have been lying in a dark cave, every new day the same as the previous day and not a sign of feeling any better at all.

Mentally, I have been unprepared for the dark space.  I knew I would not be celebrating and partying to mark the end of chemo, but I did hope to at least have a mental boost and feel a bit hyperbombastic!  However, I have been full of dark thoughts, about recurrence, having to deal with chemo again at some time in the future, about never feeling fully recovered and feeling helpless against the enormity of the strength of cancer.  I know it is not like me, but that does not make it feel any better.  I think part of this is also the strange and almost illogical feeling that with chemo finishing I am no longer throwing everything I can at the cancer beast.  If I hate chemo so much, why do I feel this way?  Of course, it is not chemo itself I hate, it is the fact that it has made me so sick.  I know that I am really grateful to the chemo and that it is giving me the best chance of recovery.  I think that feeling so low physically is feeding the emotional darkness.

I have been lying in this dark, chemo cave too long, but I have been unable to find a signal that I can drag myself out of it.  Until this morning. When I awoke this morning, I headed as usual to the bathroom.  Incredibly, my legs felt different.  They felt just a little lighter, not so leaden and I was able to walk across the room more easily than the past days and weeks.  I also felt just a little lighter in myself.  I know that sounds odd, but it is not something specific I can describe.  I just felt a touch less – sick and miserable.  I have capitalised on this throughout the day, making sure I am more active.  We made the effort to head out, even if briefly, and do a few tasks.

This must be the turning point.  Although radiation is due to start in a few days, I am not going to be confronted with another session with Rocky so surely this has to be the start of feeling better?

To make sure it is, I have searched for an image of a cave which reflects where I want to go rather than where I am coming from.  It is a meditation cave – a place of spirituality, life, light and inspiration.

I know the path ahead is a long one, but I am sure I have reached the lowest point now and can finally more onwards and upwards.

Time for a nap!

This post is going to be a moaning one I am afraid.   But then, hopefully once I have offloaded, downloaded or overloaded, then I will feel a bit better!

It is nearly a week since the final scheduled chemo, and I cannot believe how tired and frail I feel.  I know that the blood counts get to their lowest a week after the treatment, so it is not surprising that I feel very weak.  It is frustrating though, that even standing for a few minutes is exhausting, walking any distance is difficult, and going up and down stairs pretty impossible.  My knees start to shake and I have to sit myself down at regular intervals.

And sleep!  Goodness, I think I could be sleep champion of the world!  I flake out at night, sleep for a good 9 – 10 hours and still need a morning and afternoon nap!  How skilled am I?

As for the outside world, I am pretty oblivious to what is going on.  This is probably just as well as my chances of getting chemo treat 8 have been significantly reduced because of the colourful activities affecting many parts of central Bangkok. I have made my choice of treat, though, and might have to be patient as I look at alternative ways of getting my hands on what I am after!  That will be the topic of another post, I am sure.

Now it feels like time for another nap – more soon!

Signed up for the Cookery Course

It’s all action.  The side effects from Chemo 8 are descending heavily, as are the side effects from the white cell booster.  My neck and shoulders are aching, mouth is tender and painful and teeth sensitive.  My fingers are numb and sensitive, my legs are buckling underneath me and even soft gentle bananas are giving me horrible heartburn.

So what better to do than get signed up for the next stage!  Dr W2 had set up my consultation for Radiation Therapy for Tuesday (yes, yesterday!)   Radiation will be carried out at the Cancer Hospital as there is only one Radiation Centre in Bangkok.   I had an appointment to meet my Radiation Consultant, Dr K, at 2 pm and had no idea what to expect.  Please, please no needles or awkward Twang Arm manoeuvres………..

After the registration and administration procedures, we headed to the Counter and waited to see what was next.  Soon I had the usual Blood Pressure, weight and temperature checks and some concern expressed over bruising on my hand.  The nurse was surprised that this was from the blood test last week, until I showed her the marks from the IV!

In no time, we heard Dr W2 arrive and drop an envelope on the counter, accompanied by my name.  Very soon afterwards we were ushered into Dr K’s room.

He talked us through the process for Radiation.  It would start around 3 weeks after final chemo.  There will be 25 sessions – 5 a week over 5 weeks. He suggested a start date of 27 April. The first session will be a computer simulation using CT scan and they will work out carefully how and where to target the rays.  Because my cancer and surgery was on the left side, there needs to be particular care to make sure my heart is properly protected!

I had a long list of questions and he patiently took me through the process. We talked a lot about the effects of Radiation and while it is very different to chemo, it is not without effects too.  The skin will usually develop a kind of “sunburn” after 3 – 4 weeks of the treatment and it is difficult to predict how each person’s skin will react.  I have very fair skin and tend to burn easily so I expect this might be quite uncomfortable.  I was advised not to use any creams immediately before treatment as some creams can have ingredients which react with the radiation.   I asked my questions about being in Belarus a few years after Chernobyl and possible radiation exposure.  Apparently any exposure I might have experienced then is nothing compared to the 5000°C which I will get with the Radiation Machine!!  How many?  I am sure I have probably got that wrong!

Through our discussion there was no sign of a needle or a need to wave Twang Arm around.  🙂 But there was one piece of not so good news.  During the 5 weeks of Radiation I will not be able to swim.  I have to avoid any additional irritation or possible infection so swimming is completely out.  I will miss that terribly but I guess I can cope for 5 weeks?

We saw Dr W2 again after the consultation and in the meantime, he had spoken with Dr K and brought the start of the course to the 20th April.  This means a quicker finish which is very welcome.

So here I am,  all signed up for the next event in the Triathlon from Hell – the Cookery Event!