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!

The final instalment of Chemo

Yesterday was really quite a strange day.

Firstly, I did not have my usual pre chemo, mega jitters and nerves.  I am not quite sure why not.  Part can be attributed, I am sure, to the uncertainty about whether or not I would be well enough and therefore there was no point in being too scared.  Logical, no?  But in fact, I think it was more due to the fact that after 7 chemos, a bout of pneumonia and the scary IV antibiotics, another chemo and its familiarity finally did not feel just so intimidating as it used to.  Ironic, no?  Why could this not have kicked in 5 chemos ago?

I turned up at Counter 2 as usual, handed over the slip and when the nurse said “blood test” I made sure that this would be taken by the oncology 5th floor staff.  I waited for a while but no sign of the familiar all white uniform for quite a while.  Then a porter arrived to take me to the 5th floor!  Unexpected, but never mind, I followed to the Oncology Ward and there was shown to my room and waited for the nurse.  She expressed concern about my recent infection and said that there might well be a delay but it would depend on the blood work.  I asked if we should put on the numbing cream or not if it was unsure.

“Oh, yes.  Put it on!”  She was clear – if chemo was to go ahead then much better to be prepared.  AFter all, the cream could easily be wiped off if not.

She struggled a little to find a space to draw blood and my poor little vein was still tender.  Again the blood was reluctant to clot and required a good bit of pressure to stop the bleeding, which was really quite painful.  I have to stress though, that as ever, these nurses are just amazing and ensure that this is as painfree as possible.

So we headed back downstairs to wait for the results to come through and to see Dr W2 and her the verdict.  I had my other BP, temperature and weight checks and all was well.  Although I was a bit surprised to see that I had lost over 3 kilos in the intervening 3 weeks.  Hmmm, did the pneumonia do that or is a sign that I am really struggling to eat properly now?

Finally we were called and took ourselves and the X Ray from Yangon into Dr W2’s room.  He went through the blood tests and said that my white cell and neutrophil counts were normal now, and red blood counts had gone up enough to allow chemo to go ahead without transfusion!  Amazing what determination can do!  He then had a listen at my chest and seemed happy that it sounded clear.  He had a look at the X Ray from Yangon and immediately ordered a follow up X Ray.  He felt that I had had a virus as well as the bacterial infection which is why I had gone down so much and also why the monsterbiotics and IV ones had taken a while to kick in and for the fever to go down.  His verdict?  With satisfactory blood work, no fever and apparent recovery from the infection, pending the review X Ray, he felt 90% sure that chemo 8 could go ahead!  Gosh!

So we were carted of to imaging and I had a super fast X Ray with no comments about biopsy scars.  Within 10 minutes the results were with Dr W2, he had reviewed them and I was pronounced fit for the final zap.

We were escorted back up to the 5th Floor and back to the room where I had been earlier.  On with mind-numbing reality TV – my usual strategy for dealing with port preparation.  I seriously recommend it for the whole chemo process!

For the last time, I was prepared, the numbing cream wiped off, the area swabbed and sterilised, surgical gauze placed surrounding the area and then the ripping of the package which signified the port needle.  OK, the usual, breathe in, breathe in, breathe in…..hold…………… and for the last time the needle was in.  Phew!  No final surprises or problems with my wonderful port.  Did I call it wonderful?  Hmm, a strange time to develop a more positive relationship with my port!!

The series of syringes with anti side effect meds went in first and a vicious army of biting red ants marched again as I squirmed awkwardly.  Each time they seem to bite a bit harder and I find it increasingly uncomfortable.  The nurses find my reaction really amusing!

I had half an hour of saline after this to get the side effects well flushed and then the final taxotere was unceremoniously brought in and hooked up.  Have a look at the label in the pic, and all its detail……………..

As always, it is infused slowly as it has a high risk of allergic response.  For over one and a half hours it worked its way into my system until finally the machine beeped to signify the end of the infusion, and the nurse monitored as the final drops left the bottle and entered my blood stream.

Another series of syringes and the final anti clotting agent and it was time to remove the needle.  I breathed in, in, in- and held and out came the needle.  And then the weirdest thing happened.  I was completely overcome, and cried like a baby at this decisive moment.  It was totally unexpected and I am not quite sure what happened.  I think a mix of relief, disbelief that it is finished, and after months of holding things together during the chemo procedures I was overcome by the enormity of what I have been through.  I have since heard from many other women that they also wept buckets at the same point.  It reminds me a little of when you are in the midst of a family emergency or crisis and you just have to keep everything together, but when you are told everything is all right, that is when you crumble.

After the crumbly moment, I gathered myself, switched off the reality TV and got ready for the outside world again.  I will come back and see my 5th floor angels to thank them properly once I am clearer about the next steps and less wobbly.

After the usual signing of papers and collecting another bag full of medication, we were back out in the warm evening and quickly home.

I am still having a bit of difficulty letting it sink in that Sunday 4 April really was the 8th and final chemo.  Rocky (1 and 2) and I have finished our 8 round Boxing Match and the score seems to be Rocky -8, FBG – 8!!  But I have this naughty compulsion to run up behind him when he is not looking, and tweak those sensitive little hairs behind his ears and bring him to his knees like he has done to me!!  Maybe I will keep that one up my sleeve!

Chemo might be done and dusted, but there is no chance of dust gathering under my feet.  Final chemo was yesterday, and Radiation Therapy Consultation will be tomorrow!  Things are moving rapidly forward.

The most important thing is that I know that once this set of side effects pass, then I will start to feel better and slowly recover.  I hope that I will get my strength, energy and immune system back gradually – and I hope that means I will start to feel well again. I can’t wait!

The last drops

More details later as I am too wiped out just now, but here is a picture if the final drops of taxotere being infused into my chemo weary veins.  Name, date and time are all there on the bottle to record this historic moment formally.

It’s been a long and emotional day.  I feel drained and overwhelmed, and too frightened to be overly glad I am through with it all – in case I ever have to come down this path again.

Details coming shortly.

The lost days – Friday, the lost weekend and beyond……..

Sleep was even more elusive on Thursday night.  My arm and the IV line were really quite tender and when I did sleep I was woken by discomfort in the IV site.  That triggered more scary thoughts.  I got myself in a particular tizzy about the vein swelling or clotting and imagined that my arm was really swollen.  Then I had those really irrational “I can’t phone the Dr in the middle of the night” thoughts and that led to me wondering if I should try and remove the IV line myself if I got really worried about and what stage would it need to be to warrant me removing it.  And of course total reluctance because that would mean finding another vein in the morning.  All totally irrational stuff, typical for the middle of the night.  Switching on the light and looking at the arm provided a bit of relief.  It was not visibly swollen and once my thoughts became more lucid I realised that it was not as painful as I thought it was, although it must have been bugging me to wake me up.

Finally dawn came, and before long it was time to return to the clinic.  I was again slotted in before the start of the regular day, adding further to the workloads and hours of the Dr and her PA.

The Dr told me that she had had a good discussion with  Dr W2 the previous evening and again between them, they had identified the treatment path.  My temperature was lower, though it had raised again the previous evening so I was along way from 48 hours of being afebrile.

Then it was scary time again.  Time to see if the vein would accommodate the antibiotic.  It was by now terribly tender so I half hoped it would not work, although the thought of another needle seeking out another vein in the leg still grossed me out, as well as scaring me.  My arm was again unwrapped and the Dr started to have a look at the site.  She was concerned that it was really bruising but there is no surprise in that.  With gentle coaxing she was able to flush and clear the entry point and with my eyes tightly shut, willing more than anything, I waited to see if the infusion would go in.  Can you believe – it did!!  That amazing, exhausted vein was coaxed and persuaded to allow another dose into my blood stream.  This time was without doubt the most painful.  The bruising around the site made it incredibly tender, and the fact that the fluid has to go in “in a slow push” meant that every second was really tough.  Finally, finally it was in and the infusion over.  The needle could be withdrawn, with great relief.

The final irony of this vein was that when the needle was taken out, after clotting so quickly each time before the infusion, it refused to clot and close up!!  This meant it required quite a bit of pressure to get it to stop bleeding.   Not easy to be cooperative when any pressure results in the arm retreating in the opposite direction!

The relief was enormous.  Now I could move onto oral antibiotics exclusively.  This meant a change from the antibiotics I was taking and starting monsterbiotics.  This was in the form of 2 types of very strong antibiotics particularly for people with suppressed or compromised immune systems.

It was nearly 9 am when all was finished and we left the clinic, exhausted.  My grand finale had been to walk back into the waiting room, so relieved at the removal of the needle and prospect of no more vein hunting – that I totally forgot that my hat was in my hand and not on my head!  Luckily, there was only one other person there and, bless him, he didn’t even react to the sight of a bald woman tottering towards him!  Clutching my monster pills and with instructions in my head of what to do I could finally head home.

And so to bed.  I am not sure what else happened on Friday, the third lost day, except for spending most of it sleeping!

The lost weekend and beyond – Saturday/Sunday……….. to today

To be honest, the last days have probably been the most difficult so far of this breast cancer road.  I feel weakened, nauseous (monsterbiotics?), constantly exhausted and the cough of the pneumonia has started to take hold.  I can’t stand for long, nor walk for any distance and of course my beloved swimming is out of the question for now.  I am sleeping for hours, and most of the rest of the time I spend lying down.  While my fever is much lower and within acceptable limits, my temperature is more raised than normal, adding to anxiety.  I just want to feel better and heave energy again.

I am not even thinking ahead to Sunday.  We will travel as originally planned tomorrow to Bangkok and see Dr W2 on Sunday.  It is unusual and strange, but chemo 8 is just not on my mind.  I have to get over this hurdle first and Rocky might be ready but I am not sure if will get the all clear for the next battering.