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!!!

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.

From the recovery zone

The Dubai bruises are fading and so is the memory of radiation and chemo. 

We arrived safely on the tiny, remote Scottish island of Lismore where we are based for the next week.  It is quiet, restful, peaceful, healing and a tad cold!  We have had mostly good weather though, with sunny, fresh days and not too much wind and rain.

I am managing to walk a few gentle miles most days though twang arm is playing up still.  I am anxious to get back into the pool in a couple of weeks time.  My radiation-burnt skin is recovering and peeling in a rather disgusting fashion.  For some reasons the nails on both big toes have bruised and are very tender which I cannot understand.  Tamoxifen seems to be making me a bit maudlin which I also do not understand.  My hair is growing irregularly and in the wrong colour.

We have virtually no access to internet or mobile phone on the island so it is truly remote and peaceful.  We have ventured onto the mainland today for essential supplies and communication!  I also finally took the step of walking over the threshold into a hairdresser to do something with my mad professor hair.  It has now been evened up nicely – with the clippers!

We have another week on the island before heading off to other parts of the UK to connect with family and friends around the country. The following week we will return to Bangkok and radiation review with Dr C, and then hopefully return to Yangon.  So this haven of peace and healing is very welcome just now.

Can it be true?

It is a bright and sunny day in Bangkok, and it hasn’t sunk in yet …………………………….

……. but it is there in black and white – and blue and red – my final radiation zap!  I even get 2 neat lines underneath the final session just to make sure I don’t get confused and come back for more! Finally, 25 out of 25 sessions done! One Feisty Blue Gecko well cooked and done!

So it is goodbye to the Bunker with its lead lined door and red flashing light ………………

Goodbye to the blue mould that has held me in the same position ………….

and the beeps, whirrs and rays of the machine.

I will see the staff again at follow up appointments, so I have words of immense thanks and gratitude to them, rather than a goodbye.

And hello the new phase of RECOVERY!

I realise it is exactly 7 months ago today that I had my first chemo session, and – how weird is this? It is 8 months TO THE DAY that I first discovered the lump.  The past 8 months have been the most challenging, frightening and difficult of my life, yet I have so much to be thankful for.

It is far from over though.  The heavy duty treatment which was set out when I was diagnosed is now completed. I have appointments this week with Drs W and W2 for a review of how the treatment has gone, and to plan the next phase of care.  We will also find out if I am fit to travel long haul and get back to Scotland for long overdue leave.  I will have review and follow up appointments after my leave.  Depending on how Dr W2 feels the treatment has gone, I may have another surgery – my de-portation 😉 or removal of my port.  I have started taking Tamoxifen (another story for another post) as a measure to prevent recurrence.

I also have a lot of physical recovery to focus on.  Twang arm has been attempting to stage a comeback during radiation and is really stiff and painful.  Slowly but surely revenge is coming for Twang arm.  The skin changes and burn from radiation need a bit of time to heal.  The nerve damage from surgery also needs work to repair slowly. I still have a number of reminders of chemo, especially Taxotere – numb fingers, tender feet, aching and tired legs, sensitive skin – and BALDNESS!  These take time to get out of the system, and some reminders may be permanent.

It feels as if Bangkok and I are both nursing our wounds and scars and looking towards the healing stage.  We have been through something life-changing, unforgettable and traumatic.  Although things will never be the same again, for the moment at least it feels as if it is time for healing and recovery.

Today, Bangkok also feels as if it is moving away from the past dark days.  There is a huge clean up going on, the sky train and other public transportation is getting back to normal.  There was a violent thunderstorm last night which seems to have cleansed the atmosphere and the day is fresh and bright today.

Life changed for sure when I discovered that lump, and although it will be different, I feel at last as if I am on a different path now that I am on the other side of all the heavy stuff.   I am under no illusions – I know that recurrence or metastasis is a risk, and once diagnosed the fear of recurrence is ever present.  I know that the old port might be needed again one day and I could have to face heavy treatment at some point again in the future.

But for now I need to bask in the sunshine of this phase and enjoy the fact that I have got through all of this.

Reasons to be cheerful – part 2

I have been a real misery guts the past few posts!  It is time for a change in attitude I think!

Well, last night I went out.  As in, an evening out to meet friends.  In the evening!  I realise that this is the first time I have been out at night for a good couple of months.  I have just not had the energy or felt in the slightest like anything more than a coffee or snack in the daytime. Of course, my encounter with pneumonia, on top of nasty Taxotere really put the finishing touches on any desire to have any social life.

When I had the chance to meet friends last night, the fact that I felt like meeting up in the evening was a very clear sign that I must be feeling better.  OK, I was heading home around 9 pm after a lovely meal and lots of catch up chat, but that is real progress.

And do you know the best thing?  The first thing my friend told me was how much better I was looking!  She was emphatic in saying this was because she saw such an improvement and stressed this several times.  The last time she saw me was in Yangon not long after I had had pneumonia, when I was at a bit of a low.  It did me the world of good to be told that and today I have felt a teensy bit stronger and better.  So I celebrated by meeting another friend this afternoon and I definitely felt brighter and stronger.

That is a very clear reason to be cheerful!

One day at a time? But how??

So many thoughts are crowding my mind about the future – it really feels as if a kind of crunch time is approaching and it is really. I am three quarters of my way through the long chemo path – HURRAY – and of course I am so glad to be nearing the end of these tough and horrible months. Even the prospect of weeks of radiation feels much more doable.  So why am I getting myself in a knot instead of preparing celebrations?

It’s that big question which is easy to forget when buried in the exclusive chemo club while the focus is just on getting through it. The all important question – Did the treatment work???? I am so scared that despite the heavy and thorough treatment, I will not be in the statistics which will see me cancer free. I don’t think I actually believe that will happen, but it is for sure my biggest fear, and I am sure I am far from alone in this. It is what we all dread. Right now, everything I am focusing on is based around recovery, and anything or everything else is too scary. Not just for the medical side (and that is a very scary prospect) but the implications on our whole life and future. There would be more treatment and the physical, emotional and mental toll of renewed rounds of treatment. Delay in recovery. Jeopardising return to work. The yearn for a life which is not based totally around treatment. Managing a long, difficult and chronic decline in health. All very, very frightening.

I am not trying to be negative and gloomy, but a cancer diagnosis brings with it possibilities which are not nice, and while not wanting to dwell on this side and on the probabilities of not recovering, I have to think of what we might have to do if I am in the small percentage for whom the treatment has not totally eradicated the disease or for whom there is recurrence or spread.

In fact I remember just after my surgery, talking with close family and saying how much I have done and lived through especially in the past few years in Asia. I was trying to say that even if the worst case scenario transpires, that I don’t have huge regrets. (Though of course I still want to see the kangaroo, iceberg and northern lights/Aurora Borealis). But do not mistake that for acceptance or expectation that the worst scenario will transpire. I fully intend and plan to get better – and remember my 2010 mantra is Recovery, Discovery and Laughter. But, let’s be honest, cancer is cancer and it is also going to put up a fight.

It does make me think back to my first appointment with my Dr in Yangon, back at the end of September and prior to diagnosis. I was asking all sorts of impossible “what if” questions. If it is cancer, what is the treatment likely to be, for example. My Dr explained that (from where we were at that point) there were many scenarios – including a benign diagnosis. For each there are international protocols guiding treatment paths. As hard as it would be, her advice to me was to try and take each step as it came. Then we would know what we were dealing with and be able to work with specifics. We needed facts – otherwise all is speculation.

And I think that is why my head is where it is at just now – because the next lot of facts sure have a lot riding on them. And isn’t the mind a funny and often independent thing? Here I am, 75% of the way through chemo, and there it goes, actively seeking new worries?

So I am making a real effort to take my Dr’s original advice and focus on the “NOW”, on this step and the next two chemos. Let’s see if I can boost those red cells through diet, build my strength through my beloved and obsessive swimming, and try and get Twang Arm in line with some new activities.

However, it does mean I do have big questions for Dr W2 in Bangkok next time. I do want and need to know how and when we are going to know if everything we are throwing at the cancer beast has indeed has indeed sent it running!

A footnote before the note?

Now I am having fun – playing with the dimension of time and putting a blog post before a post!

The next post is one which has been in preparation for a few days, and touches on some heavy stuff.  The reason for this footnote is put it into perspective a bit before it is read.

Right at the outset of this blog, I stated that there are different reasons for me recording and sharing this experience.  And to be very honest, the biggest part is the selfish one.  It helps me.  It helps me to process this heavy stuff.  It gives an outlet for the heavy physical as well as the emotional path which I am travelling.  It helps me to deal with it because it is less overwhelming once it has been chewed over in my mind over and again and then set out in black and white text.  This whole process means that by the time the heavy words appear on the blog I already feel lighter and see things more in perspective!

So please remember that when you need the next post that I felt a lot better after writing it than I did before!

The alter egos – or identity theft?

I think it is time I updated you about the alter egos who have been trying to take over the Feisty Blue Gecko!  In particular Dr Evil and Twang arm have been trying hard to take over my identity!!

Dr Evil is the look which I struggle with when I look in the mirror.  After all these weeks I still can’t get used to being bald.  Grizelda the wig is useful but I find I tend to wear scarves more and feel more comfortable that way.  Grizelda is good for travelling from Bangkok to Myanmar and I find I occasionally reach for it if heading out shopping. 

As for the Dr Evil look – even though I am still in the midst of the chemo treatments, I am finding a strange fuzz is starting to grow.  It is not like hair, but more like a down and strangely seems to be a mousey fair colour.  It could even be blonde?  I feel as if I am being transformed into a day old chick.

My other identity thief is good old Twang Arm.  For a long time after surgery, Twang Arm successfully caused more disruption, pain and anguish that the mastectomy itself.  Removal of the 15 lymph nodes caused constant pain, significant nerve damage and restricted movement and really got me down.  I started doing physiotherapy exercises but progress has been slow.  If you add to this, the days after chemo also made Twang Arm extra stiff and immobile. 

I think the turning point, or maybe the first turning point, came when I was finally able to get into a swimming pool on 25th November – quite a few weeks after surgery.  Just bobbing gently in the pool and managing a kind of breast stroke (no pun intended) across the pool a couple of times, really seemed to make a difference.  It was around that time that I was also able to straighten Twang Arm for the first time.

On return to Yangon I made a secret mark on the bathroom wall so I could monitor how far I could stretch Twang Arm.  Slowly, slowly I was able to keep my fingers reaching just a little bit further.

I think the next important turning point, was being able to get in and out of the pool in our apartment in Bangkok.  That meant that I could swim daily and this was something which I have also been able to continue with in Yangon.  It is probably bordering on obsessive now but I am well and truly hooked if so!  I swim a minimum of 5 times a week and get really grumpy if something interferes with this.  Now let’s be clear.  When I say swim and mention that I swim usually 600 – 800 metres (and have even managed a kilometre – yes I am rather proud of that!) I must be honest.  We ‘re talking about very gentle, slow lengths totally devoid of any style, and with my mouth perched as high as possible out of the water.  This prevents swallowing any water and prevents my glasses getting too splashed.  Besides I have never really be able to swim fish like and with my head under the water!

The results?  The mark on the bathroom wall shows that I can now reach considerably higher (more than 6 inches higher).  The tightly strung sensation is considerably less now and I can do the original excercise suggested to more than 3 times (the one where you run your fingers up the wall like a spider) and now I can do this easily and with no pulling sensation.  I used to get a weird shivering sensation across my shoulder which was actually painful.  Now I hardly feel this, and it is no longer painful, just a shuddery sensation which lasts only a second or so.  My left ear no longer tingles when I touch it – more signs that the nerve damage is healing.

Now, Twang Arm is still making its presence felt and I am not convinced it will ever be totally better.  It still sleeps on a pillow as if it is a precious jewel on a velvet cushion and it does feel uncomfortable most of the time.  But when I compare it with even a month after surgery, it is playing a much reduced role in my life and far more manageable.

I find this really encouraging, and I am sure that if I keep on with the gentle physiotherapy excercises, and particularly the swimming, I will ensure that it is not able to take over my life in the way I feared earlier.

Now, I have an appointment with my surgeon Dr W tomorrow, so maybe I had better see what he says too.  His expectations are always a bit higher than mine and he produces a new trick for Twang Arm whenever I show off my progress!

So between the day old chick down chasing away Dr Evil and Twang Arm being banished by persistent if gentle excercise, I can focus on the main identity thief.  That has to be the beast at the root of all this – breast cancer.  And my focus here is clear.  I am look ing towards the day when I am no longer a cancer patient – but a cancer survivor.

On the move again

We are on the go again – and hopefully will reach home this afternoon.

I am pretty whacked still after chemo 5, but keen to get back to the garden, home, friends, gentle engagement with work, fresh food and lots of swimming.  All with a view to getting my strength up again for another zap in a couple of week’s time.

It may be that connectivity is limited – but I shall update however I can.