A sensitive soul

I am not sure how many times I have heard the saying that cancer just keeps on giving.  Oh it is so true.  Little and not so little unexpected bonuses.  Like the disappearing thyroid function, unpredictable digestive patterns, permanently impaired fingernails, Twang Arm and a lingering tingling of neuropathy to mention a few.  And one of the most irritating quite literally – sensitive skin.  The combo of surgery, chemo and radiation have made the skin on my upper torso particularly sensitive .  With that and my port, I have been unable to wear necklaces because they rankle my skin so.  And after port flushing, I cannot tolerate a sticking plaster as before very long I can feel a rumbling as the skin starts to erupt as if I was hosting some kind of alien, waiting to break free through my skin.

This latter is causing me some grief following my de-portation.  My wound seems to be healing well and I only needed pain relief for the first day and a half after surgery.  I am carrying my port around in my handbag, taking it out every so often for another look, such is the intrigue it still holds for me.  After all I had kept it close to my chest for so long.  Embedded in my chest to be accurate and you can’t get much closer than that.  So that side of things appear to be fine.  However, the thing I have been struggling with is the seemingly innocuous  adhesive dressing.  Within a few hours of the surgery, I could feel my skin start grumbling and complaining.  Before much longer it was becoming  really crotchety.

I knew that there was a fresh wound under the dressing though, and that trying to remove the adhesive strip was not a sensible idea.  A ridge of irritated skin started to form around the edges of the dressing and over the following couple of days I started gradually to peel away the offending plastic.  The grumbling got louder though and was showing signs of developing into a full scale rant so around day 3 I reluctantly headed to the pharmacy to see what goodies I could acquire which would help this situation.  And I do have to confess, I had an increasing curiosity to see the colour scheme which was developing around the surgical site, as well as how the incision looked.  I picked up a selection of interesting items, including  sterile dressings pads, anti-septic/surgical spirit and surgical tape with a mix of trepidation and anticipation.  And irritation.

Back in the studio, I peeled the rest of the dressing,  let the bruises out and the skin breathe.  I carefully prepped the area making sure it was sterile and meticulously clean and covered the wound (which was looking very healthy and healing well) with a new dressing.

Unfortunately, this surgical tape did not last long before it too started to make my skin crawl.  Before long I was back in the pharmacy, scouring the shelves for the gentlest tape possible.  I managed to find a hyper/hyperallergenic-oh-so-gentle tape and carefully re-dressed the site again.

My supersensitive skin, though, is continuing to flare and protest and I guess there is not a great deal more I can do about it.  Tomorrow I will see Dr P, the surgeon, again and I very much hope he has a magic solution!  At the very least, I hope I am able to leave the wound uncovered and let my poor sensitive skin calm down so that will let me concentrate on puzzling over the port itself.

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Fast track to de-portation

Yesterday marked two years ago to the day that I had my 8th and I very much hope, my last chemo.  I remember the day clearly.  I had been anticipating it for so long expecting a sense of elation and celebration when the 8th cycle was done. Instead I remember being overwhelmed and crumbling in a soggy heap when the needle came out.  So it was by a strange coincidence that I was again in the oncology suite on 4 April, and again being prepped for needle insertion.  But this was very different.  There was no chemo ordered, and I was in the midst of 2 days of appointments for my regular check ups.  In a gap between appointments, I slathered my Emla cream on the port area and headed to Floor 5 to have my port flushed.  It was before my appointment with Dr W2, but I was not expecting any huge surprises as I had already seen the results of the bloodwork and seen Dr W (my breast surgeon), my radiotherapy consultant and endocrinologist.  They had written the magic “no recurrence” words (on my file and Dr W felt there was nothing worrying in the pain I had had in December.  However, I know Dr W2 looks at things through his oncology eyes, and I was still nervous about my appointment with him.

The port flushing went smoothly and happily there was a good blood return.  Before long I was “flushed” and heading out of the suite towards my appointment with Dr W2.  I had to wait a bit as he was held up in arriving at the hospital.  As always, I heard him before I saw him, and to my surprise I was ushered in a few minutes after he arrived.

He asked the usual questions and I had my list of questions for him too.  He always expresses interest in what is going on back home in Yangon and with the recent events I was fully expecting his questions on this too.  He did the usual examination and to my surprise announced that perhaps the port should come out!  What?  I have been wishing the port out for 2 years and willing him to say that he felt I would never need it again (yes, yes completely wishful thinking).  My response was to ask if it was no longer needed.  I was completely unprepared for his reply.  “I don’t like the look of your veins on this arm”.  He said.  They are much more pronounced than usual.  I don’t like it”.

My bubble was instantly burst and my worry head swung straight into action.  He was concerned there could be a clot forming and even though the port was working fine, it should come out if there was a risk of clotting.  I asked him what that would entail, knowing that surgery or some sort was inevitable, yet illogically wishing for magical port disappearance.  He told me that the surgeon who had inserted the port would be the one to remove it and he phoned him.  Then and there, right in front of me!  I asked the two key questions I had had and he replied quickly to these, meaning no change in meds or ongoing treatment.  He then set me up with an appointment for Dr P, the (appropriately initialled) port surgeon.  And then I was back in the waiting room somewhat shell-shocked, explaining the unexpected turn of events to my friend.  And still waiting for his questions about Yangon!

Dr P was operating all afternoon and his schedule was full but he could fit me in the following morning!  I was ushered through the paperwork side of things and asked to return at 9.15 in the morning.  I had a growing list of questions which were difficult for the nursing staff to answer.  I called on the help of our liaison manager and she talked through all of my questions with Dr P.  Along with the questions such as “when would the surgery take place?, “would it be safe/wise to travel a day after the surgery.  To India?”, “would the stitches be dissolvable or need to be removed?”, there was a question sneakily hidden in the midst of the other ones – “can I keep the port once it is removed?”  I seriously wanted to see this device, which I had hosted for 2.5 years and never actually seen except as a shadowy form on an x-ray.  I most definitely wanted to keep it!

My questions answered, I headed off finally, knowing I was to fast again (the second time in 3 days), to return for a consultation with Dr P at 9.15 with the likelihood of surgery under local anaesthetic at 11 am.  Now I am the biggest wimp on the planet when it comes to surgery and I begged for a “happy pill” to get me through this.  This was obliging agreed to and I was prescribed ONE Xanax tablet to take that night before sleeping!

I spent the evening updating family and slept fairly early in preparation for the scary stuff in the morning.  Thanks I am sure, to the Xanax I slept fairly well and rose early with increasing anxiety.  I packed most of my belongings away and took out a few essentials to take in with me, unsure exactly what I would do with my purse and credit card while under the knife.

My plan was to buy a book before my appointment with Dr P, but that was thwarted by the bookshop being closed until 9 am and I was at counter 5 long before then!  I was ushered very quickly into Dr P’s consulting room and he agreed that the port should come out.  Gulp.  It was really going to happen.  He looked at his schedule and said that he would see if he could do it right away to save me waiting until 11 am!  I asked for some happy pills and told him I was very nervous.  He asked me if I had anyone with me and when I said that I was on my own, he said that I should try meditation!  It would not be safe to send me off on my own after the procedure if I was unclear what planet I was on!  I then produced my Emla and asked if that would help as preparation.  He laughed and said that it would do no harm!  I then repeated my request to keep the port and again he laughed, amused by my curiosity about it.

I was then taken back to the waiting room, and signed the necessary papers.  the nurse told me that the surgery would be at 11 am and I could go and have a light breakfast if I wanted to.  I decided not to as it would be too much like tempting fate.  No food = no need for general anaesthetic!  I headed straight to the bookshop and somehow one book turned into four and I wandered up to the easy chairs to read while waiting for the clock to reach 10.30 which was my reporting time.  Within 10 minutes my mobile phone rang.  The time had been changed and could I come straight back to Counter 5 and be taken to theatre! GULP!

I did my obedient puppy act and went to counter 5, and was led up to the 2nd floor to the Theatre suite.  After depositing my essentials and the four new books in the safe, I was met at the door by a gowned nurse who exchanged my shoes for a pair of theatre shoes which I could have gone sailing in.  then I was given a gown and theatre cap and had to change ready for the surgery.

This was the first time I had walked into the OT – every other time I was wheeled in, partially sedated and lying flat on my back without my glasses so this was a very different and far too clear view for my liking.  I climbed onto the operating table and the staff started prepping me.  My blood pressure was very high, unsurprisingly as I had absolutely no sedation or synthetic happiness.  Within about ten minutes Dr P arrived and the serious stuff began.  A small frame was placed over my head and a green gauze sheet over it so I was suddenly housed in a green world as the work began.  After the local anaesthetic was injected, the incision was made, but I continued to feel pain until a few more doses had been administered.  This is something I have experienced before – the need to have higher doses of local anaesthetic.  Dr P responded immediately when I said I could feel pain and he administered more anaesthetic.  The procedure took a good bit longer than I expected, because my port had been placed quite deep.  Finally it would out though and I felt (and heard) Dr P cauterising the area to stop bleeding.  Rather alarmingly, I first heard this as “stop breathing”, which scared me until I realised it was his Thai pronunciation!  He then removed scarring and finally I could feel the area being closed and stitched.  The whole procedure had taken around 45 minutes, excluding the prep time.  I was SO glad it was over.

The green gauze sheet was removed, and Dr P’s smiling eyes appeared above his surgical mask.  He was waving the port at me and was highly amused when I greeted it with a cheery “hello!”.  This was bizarrely reminiscent of giving birth and being introduced to your new baby!!

I handed my spectacles, my nose stud, and my amazing port and ushered out of the OT and back to the changing area and recovery area.  It was OUT, I had finally been de-ported and could already feel it easier to move my neck.  The Frankenstein button on my neck has gone and I no longer have this weird foreign body in my chest.  I certainly made life so much easier for me but for now at least it’s work is done and it is not helpful to keep on hosting it.

The anaesthetic is now wearing off and bruising appearing but that is all part of the healing process. Ironically though, this has resulted in a change of plans but not for the reasons feared.  I actually had gone ahead and booked my ticket to India for Friday (6th April) but with a fresh surgical wound, heavy baggage, a complicated journey and hot weather and dust of dry season it would not be wise to travel to India.  but that is a whole other story, for another day!  I will take a few days to regroup and recover a bit from the hectic first months of the year and my de-portation.

The Triathlon Perspective

I have just seen cancer treatment described as a Triathlon (or the Triathlon from Hell, actually was the direct quote) and it really made me smile – and think!!  There are various components to treating breast cancer, but for many of us there are three big ones.  So the Triathlon terminology with its connotation of three main physically demanding and mentally challenging elements sounds quite accurate.

The Breast Cancer Triathlon does not see us competing against each other, however, but rather we focus on completing the course against one common opposition.

For many of us on the Breast Cancer Triathlon, the three main events are – the Surgery Event, the Chemotherapy Event and the Radiotherapy Event.  Of course there are peripheral extras, such as the Port Insertion Procedure and Hormone and other Drug Treatments (such as Tamoxifen, Herceptin) and other activities to keep us from getting bored.  I could add the Twang Arm special event too.  But the biggies are without doubt those three, although we do not always tackle events in the same order.  It depends on diagnosis, pathology and an element of choice.

The surgery event was my first event.  I found it quite terrifying (before), had interesting dreams (during) and relief and discomfort (after).  Although it was the quickest event to complete by a long way, it is a significant hurdle, especially mentally, and the recovery stage requires considerable effort.

Now I am 75% of the way through the Chemo event which I find gets harder the further I go.  At this stage, I would call it the most gruelling and horrible event.  I am glad that I have rewarded myself at each of the hurdles – I am sure that has helped me to focus on the finish line for this part of the Triathlon.  The finish line of this second event is in sight but still I am not quite there.  It is a struggle to muster the staying power but I know I have to.

Beyond that I am starting to feel the need to prepare for the third event – the Radiotherapy course.  I am not exactly looking forward to it and do trust it will be less demanding than the current event.  I will celebrate course completion with the Tamixofen Treat – years of hormone treatment which is highly effective at keeping recurrence at bay. Not an event, but a kind of follow up.

So as I approach the end of the second event, I am trying hard to focus on completing the whole course and beating the opposition with all of your support and help!!!

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.