Next month!

In one more day, tomorrow – on 1st March, I am going to be able to say “NEXT MONTH”……… I should be finished chemo!

I just cannot wait. I had been geared up for this as I neared chemo 5 in January, and was then blocked by the delay of a week because of those naughty neutrophils. Just one week meant that the date embellished in my mind (28 March) would shift by a minimum of one week into a new month, one which was not NEXT MONTH a few days later. So I have been waiting, rather impatiently, for February to run its course, so that now I really can say NEXT MONTH, all being well I will be finished. Even allowing for more delays, public holidays and other unexpecteds it really should be NEXT MONTH. NEXT MONTH feels as if I can touch it.

I remember sitting in Dr W’s office as he explained the chemo schedule and realising that 8 chemo cycles, every 3 weeks was a long, long haul. 8 x 3 = 24. 24 weeks is nearly 6 months. 6 months is a half a year and a heck of a long time. For anything. Especially for something unpleasant and difficult.

However, I can feel another milestone approaching, which I realise has been buried and overshadowed totally as I have lived in the all exclusive chemo club. And I don’t just mean the radiation treatment which comes next. At some point, there is going to be a huge reality check – and one which has been out of mind mostly while swallowed up by the chemo experience. That is the really big question. So, did the chemo work? I am not sure how strong I am feeling to face up to the litmus test of its success.

That is the topic of another post, but for now I am waiting till tomorrow to be able to say “NEXT MONTH”! 🙂

Advertisements

On the move again

I have a real frustration in the immediate post chemo days.  I have good internet connection, but am unable to take full advantage.  Grrrr.  So now I am off again tomorrow, all being well, and still have a huge internet backlog.

I have an even bigger blog backlog (backblog?)  So many things to say but the old body is just not cooperating.  Taxotere is indeed taxing.  The effects are heavier than last time and I feel terribly weak.  Not good when there is a chemo treat to shop for!  The fingernails are foul, discoloured and very sensitive.  My long lost taste bud friends are nowhere near and my mouth feels again as if it has been to the dentist and is fully anaesthetised.  And the aching bones , muscles and joints  – from ears, neck, shoulders, knees, toes and I think every bone and joint I could imagine.  I succumbed to painkillers last night which I try and avoid as an extra burden on those vital organs.

I know that 2 more  chemo cycles is so nearly there, but it still feels like a long way ahead.  Especially knowing that the side effects are cumulative and it is unlikely to get better.  Though of course I am open to that option!

So it is onwards and onwards.  Packing up our bits and pieces, along with the side effects and heading home for another few days and some recuperation and replenishment I hope.

And incidentally, Dr W saw me and Twang Arm just as the side effects were taking hold, so he did not see the Twang at its best.  He has indeed supplied new tricks and ironically I can hardly move anything at the moment, let alone Twang Arm. 

If I look back though, I can see how far I have come.  Tomorrow, when we travel, will mark an unbelievable 21 weeks from the diagnosis, with the surgery just days later, and 18 weeks since the first chemo.  I can’t pretend it has passed quickly, but it has passed and I am still moving forward towards recovery.  It seems to have passed quickly to everyone else though!!  But the thing to focus on is that the heaviest things (surgery and most chemo) are mostly behind me now, all being well. 

So as we move homewards again tomorrow, I have to remember that each day also takes me forwards and through the treatment.

Chemo treat update

I might have mentioned that I find Chemo pretty horrible. This is my excuse and reasoning for providing myself with a treat after every cycle (after my friend suggested it – thanks J!)

I realise that I have developed a kind of chemo treat system.  Unwritten rules have evolved as well as some kind of criteria. 

The first treat was quite a big one – a replacement camera as my camera had collapsed after 5 years of very heavy use.  I am still not sure if it was a treat as criteria no 1 is that the treat must not be something essential.  I had already bought books, but they are clearly essentials, so the camera was an appropriate treat. 

Treat number 2 was the famous music download disaster which I am repairing.  Treat number 3 was more music to try and replace the massive music library loss.  Another criteria – something which is for keeping and lifting my spirits.

Treat number 4 – the famous swimsuit – which is in serious danger of disintegration through overuse!   This also fits the criteria of being something which will motivate me and make me feel good.

I have to say that I have been finding it quite difficult latterly to shop for the chemo treats.  I have to make my mind up beforehand what I want and then find ut where I can find it, as energy and shopping outings are limited.  For treat Number 5 I decided that I needed some art materials to inspire creativity time at home. 

This is waiting for me at home, and was worth the trek and tiredness to get them.

And today, I have to say I did struggle to get treat number 6.  Another criteria is that I can’t get the treat before the chemo (it would be tempting fate) and I am just finding it a bit tiring when the side effects are piling in.  Treat number 6?  Some lovely modern jazz music and a sketch book.  Perfect.

Now I need to think ahead for treats 7 and 8…………………  suggestions very welcome!

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.

Number 6

I do get myself into a state before each treatment – the dread and feardyness (Scottish for fear, although it could be a new word altogether?)  make the days leading up to each chemo unpleasant and difficult. 

However, the day itself, though punctuated with many feardy moments (particularly the ones associated with NEEDLES) seems like an unstoppable process and the day is long-ish but I am swept along as time ticks forwards.

So this morning, as usual, we left for the hospital with the necessary appointment slip, numbing cream (for the port area) and the blood test results from Yangon.  I checked in at Counter No 2 and was greeted like an old friend by the nurses.  I handed them the test results as well as the other papers, in a clear attempt to avoid another needle this morning!  I was summoned for the usual Blood Pressure (yep too high again – surprise) and weight checks and sent back to the waiting area without being sent to the lab for a blood test.  Slowly I allowed a little glint of optimism to break through – perhaps they won’t run the tests if they already have one set of results from only a couple of days ago?  I watched Dr W2’s door for clues and activity and sure enough after a short interval I could see the nurse being ejected from his room – she gestured over to me that I would be seen soon.  After a blood test – GRRRR!  But then she pointed upwards – now that can only mean one thing – that one of the lovely and gentle oncology nurses from Floor 5 had been summoned for the test.  I also saw her collecting some vials which must be waiting for me – chitter chitter!

Before long, I saw the white tunic and familiar face of oncology nurse A with her picnic basket.  I reacted with a mix of relief and increased feardyness.  I know she is really gentle, but again there is only way she is going to get that blood, and it will involve a needle.

Sure enough, I was called over and we greeted each other like friends. She did have trouble locating a vein (my arm has a line of bruises down the vein, of varying shades and sizes, which represent the timing and impact damage of the needlework).  She did find one and with her usual professionalism she gently removed what was needed.  She then prodded the port area a bit and put the numbing cream on.  That is another tactic – as well as numbing the area it also reduces the pressure which Dr W2 uses when he presses on the area to check it out!!

Back to the waiting area, a good book and after a while I heard my name called – there was Dr W2 at his door, beckoning me over.

He doesn’t beat around the bush – we had hardly sat down and he told me he was worried about my haemoglobin levels and worsening anaemia.  White counts are ok and clearly were helped by the post chemo shot.  He was pleased that I am making a serious effort to eat the most healthy diet I can, but said that even the best of food (even crocodile and octopus soup he said!!) can’t fight the effects of the chemo on my anaemia and he wants to do something about it.  Each intervention has its risks though so we agreed that he would do chemo no 6 and then see “how low it can go”.  Hmmm.  He said that the chemo is extremely hard-hitting.  Too right!!

So a bit of uncertainty now about Numbers 7 and 8.  Ach well that will mean increased levels of feardyness in 3 weeks time.

Eventually I was returned to the waiting area, a and a little while later a young man arrived in hospital uniform, walkie talkie clipped to his pocket and my file in his hands, and escorted me upstairs to the oncology ward and chemo number 6.

A few hours later, one needle in and several syringes and infusions later it was all over without incident and I was sent to the cashier and pharmacy.

So now I am back at the apartment, kept going by the anti side effect meds which are infused before the chemo, though a bit fuzzy headed as usual (yes, I know, nothing to do with chemo!!)  I have to go back for another needle tomorrow and then just to ride the side effect storm.

In the meantime, I am a bit like a child let loose in a sweetie shop because of the internet access.  I don’t know which site to access first and lurch from site to site, tempted as if they were my favourite sweets!  And I am taking full advantage while I am feeling ok-ish and while I can!

It’s that time again………..

Stomach churning, fear, dread, hope, insomnia – and arrival in Bangkok ……………….  it must be the night before chemo!

In fact it is the night before my next appointment with Dr W2 – and if all is fine, then chemo 6 should go ahead.  So it probably will be the night before chemo, but I can not be sure.  I hope it does go ahead and we can move forwards towards the end of chemo, but I have to be honest and say that a part of me also illogically hopes for a reprieve. 

I have one distraction which is helping – a huge internet, Facebook, blog and email backlog caused by the disruption to internet back at home. 

So as the sun sets on a sultry Saturday evening in Bangkok I will try and catch up a bit with the outside world, and avoid thinking about tomorrow.  Denial is a wonderful thing!

Faulty thermostat and microwave menopause

I was woken this morning by the phone ringing.  To be honest, I had woken before then a couple of times, and been too tired to get up so fallen asleep again.  When the phone rang I was shocked to realise that I had slept for nearly 12 hours!

I had slept pretty well, apart from some very busy dreams (including a wander across the Mongolian steppe!).  For once I even had hardly any lying awake time, worrying about big, scary cancer things and composing wonderful witty lines for my blog (which have always disappeared by morning).  In fact the only thing which really troubled me last night was a faulty thermostat, which seemed to be more erratic than usual. 

One of the side effects of chemo which I have not really mentioned is the “sweaty head” one.  Charming!  Chemo forces a kind of “microwave menopause” – in other words, menopause with all its symptoms in a matter of days/weeks instead of over a gentle timescale.  If you read any of the breast cancer websites and forums, you will see much reference under the discussions on chemo treatment about this.  (http://www.breastcancer.org/community/ and http://www.breastcancercare.org.uk/forum/ ).  It amuses me that in the US women discuss their “hot flashes” and in the UK their “hot flushes” along with all of our other chemo delights. Perhaps one day I will study the etymology of the flush versus the flash but that is not for now. The particularly gross thing about this is that manifests itself in the form of very sweaty scalps in us bald women.  Yuck!  So this means that I usually wake several times in the night, throw off the sheet covering me and pat my scalp with a small hand towel beside the pillow, especially for the purpose and try and get back to sleep.

There is another factor to add in.  Now that I have 5 chemo sessions under my belt, my system is pretty weakened and I am becoming progressively more anaemic.  This has the effect of making me more sensitive to cold.  So you can imagine the fun I have, lurching between a hot head sweat flush, throwing off the bed sheet and then drifting off to sleep.  Only to wake up shivering with cold and retrieving the sheet, and pulling it over my head to try and keep me warm!! 

My thermostat is well and truly faulty and struggling to cope with the temperature variances of chemo and microwave menopause – yet somehow I still managed to sleep for 12 hours!  Now I think it must be time for my morning nap!