Hair news

I am in a quandary about my hair.  First of all it is great to have a quandary to be in about my hair, because that recognises the fact that I do have some hair!  

I have now moved slightly beyond the Annie Lennox with the wrong face stage, into a stage which resembles more a puppy caught outside in the rain.  A puppy with funny white hair on the surface and dark hair underneath.  The rain effect is due to the appearance of distinct kinks in my hair. 

The quandary is based on the fact that my hair is now looking really quite untidy, but I am terribly reluctant to cut it.  My reluctance is partly due to the fact that I was without hair for far too long and hated every minute.  And it is partly because I am very curious to see how these kinks develop and if they might go so far as to become an auto perm.  That would be amazing, as I have always had the straightest of hair, so I am intrigued as to what the hair will do next.

So in the meantime, while I bask in my dilemma my hair continues to take on a life of its own and I continue to watch its progress with baited breath.

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Moving on from the 3 month check

Sometimes it is hard to remember that it is only 3 months since all the heavy treatment finished.  Apparently a body subjected to cancer treatments usually needs at least as long to recover as the treatment took.  So that means I should allow around 8 months (at least) from the end of May to re-build slowly. 

However, I realise that despite my good intentions, I expect myself to be feeling “the same as before” and I find it hard not to push myself.  I often find it quite tricky to get a balance which allows me to recuperate and I am striving to function as I was before diagnosis.  I am reminded when I get very tired, or as happened today (written on Sunday), when I was out at the market and realised that I wanted to sit and rest (and have a big cold glass of water).  I had been wandering around for a couple of hours in the heat and humidity so it is not really surprising.  So I listened to my body’s reminder and stopped for a refreshment and a break.  I was delighted to find that I quickly bounced back and was ready for a new round of shopping in no time.

It made me think of a friend’s facebook post which asked fellow cancer survivors what changes they have made since diagnosis.  I posted a quick reply, sharing rather smugly that I am now doing a Pilates class twice weekly, swimming as often as I can, (and as often as the monsoon allows), being very attentive to my eating habits, taking time to do creative things I enjoy and being pretty disciplined about working sensible hours.  After keying it in, I realised that this actually represents quite a lot of changes.  I really have to focus on these changes and the role I have in my recovery when the worry worm tries to eat away at my mind in the night. And I really have to try to give myself time to heal.

Bye bye Bangkok – back home, sweet home

We’re back!  As planned, we returned to Yangon on Wednesday on the lunchtime flight.  We left Bangkok in hot sunshine and had a smooth (short) cruise towards Myanmar and soon started our descent.  After 10 minutes or so into the descent, the Pilot’s voice came through on the intercom.  This always scares the whatsits out of me – I like to know what altitude we are at, the outside temperature (why, I like to know that I have no idea, but I like to know), our speed, our anticipated arrival time and the temperature at our destination.   But we had already had that announcement so when he started a new announcement, I was prepared for the worst!  I knew Tropical Storm Mindulle was crashing ashore in Vietnam and that the weather systems in the region were feeling the impact.  It is also right in the middle of rainy season and that also makes flying unpleasant, scary and on occasion dangerous.  I was also edged further towards paranoia by news of a plane crash in Nepal the previous day and in China that morning.  I was not reassured by the Captain’s message.  Apparently, despite the blue sky and pretty fluffy clouds we were flying through, the weather system in Yangon had brought heavy rain and visibility was below the minimum.  Lovely.  So we were going to hang around a while, on hold, as they nicely put it, until the weather cleared.  Now I am glad the pilot was not going to attempt any scary landing during the storm, but I was not so happy at the fact that we were in suspended animation while we waited for the weather to clear.  I know that these squalls can hang around for a while so as the hold music played, my mind readily let the worry worm in.  Suffice to say, the weather cleared pretty quickly and we were safely in Yangon only a few minutes behind schedule.  But it made me realise that my mind is terribly overactive when it comes to worry and anxiety, and it was very comforting to be back on terra firma, hopefully until after the end of rainy season.

I arrived home, dumped my case, picked up my work stuff and headed back to work.  Then somehow, it was suddenly the weekend!

Carpe diem

It has been a strange few days since the checks on Thursday and port flush on Friday.  To say I have been up and down, lurching between ridiculously irrational to calm and rational (well, not so often for the latter) would perhaps begin to capture what it has been like.  Remember that I am in a strange, unexpected place.  This goes far to shed light on what it is like.

In the space of the past few days, I have been angry with the tumour marker – for being raised.  Pure and simple, if it had not been raised I would have had a really good check so I am cross with the marker.  I am pleased at how my body has been recovering, despite what it has had thrown at it (major surgery, minor surgery, chemo x 8, 5 weeks radiation, pneumonia and shingles in case I had forgotten).  I have been taking control and had a lovely one to one Pilates session (long overdue from a block booked during chemo and which I was subsequently too sick to take up) and a lovely long swim in our apartment pool.  I have been scooting round Bangkok doing errands, chores and hardly been inside a taxi for a change.  I can manage the stairs on the Skytrain without thinking twice – and to remember back to the awful taxotere days when I could hardly stand, and thought I was going to collapse when I did try and go up the Skytrain stairs.  I have had a scare that the horrible shingles had returned, when my skin erupted under the elastoplast following the port flush.  I was horrified when spots re-appeared in the exact same place and formation as one of the shingles set.  I was relieved when these dreaded spots died down quickly and think that my poor skin which had been battered by chemo sensitivity, radiation burn and then shingles reacted quickly and angrily when the port was flushed and an innocent plaster pasted over the needle area.  If you add the stress of the check up and the marker result then it is probably not surprising that my skin flared up.  I was delighted and then rapidly disappointed when the prosthesis I had ordered for swimming turned was not exactly right.  I really liked it, it was comfortable and far less visibly assymetrical than Prosthesis 1, 2  and 3.  I have ordered the better size and childishly cannot wait until it arrives from Europe. Until then it will be jacuzzi swimming and misaligned headlights  😉 .

Most of all though, I have been fighting the anxiety of the wretched raised tumour marker and have been overwhelmed by messages of support, suggestion and encouragement.  I have been trying hard to rationalise it and find that as much as I do, the irrational, anxious side of me cannot absorb sensible logic. I can get the marker angst under control easily in daylight hours, but at night when Tamoxifen (is it a conspiracy??) is keeping me awake, it is hard to shake off the worries.

Then a simple sentence cut through all of that angst and shrivelled the worry.  The magic trick was when I was reminded how quickly and thoroughly the medical team had acted since I was diagnosed. (Mastectomy 3 days after diagnosis, first chemo 18 days after surgery, radiation 2 weeks after last chemo)  All in all it is probably a world speed record!  So if the Doctors had been seriously concerned, then they would at least have ordered further tests and would not be sending me away for 3 months.  In fact I remember that Dr W was concerned that 10 days had passed since my discovery of the lump in September 2009, which in itself is an impressive timescale between GP consultation and specialist appointment (one week) and his readiness to operate the following morning after diagnosis  bears that out for sure.  So let’s be honest, if these guys are happy to see me in 3 months, and they really know their stuff, then this marker must indeed be a very minor concern.

So why waste a good day today, worrying about a possible bad day in the future (to steal a quote from my pal Chemobabe’s blog) for what is, in balance, not a good enough reason.  We will head back to Yangon tomorrow, and make the most of recovery and healing time. 

Thanks so much for keeping me moving forwards, onwards and upwards – and let’s focus on carpe diem!

The first 3 month check

The strange post treatment phase has been a time when life has not been lived around hospital appointments.  However, not terribly far on the horizon has been the prospect of the regular 3 monthly checks.  I am glad that I have such regular monitoring, but at the same time am so scared of recurrence that I dread the checks as much as I value them.

It seems like no time since we were last at the airport, travelling for my 8th chemo, but it was over 4 months ago.  Of course the chemo was followed by the radiation and then home leave in Scotland, so it has been not long over a month since getting back home and picking up the reins of a life again.

It was a strange feeling being at the airport and it reminded me more of my first departure in October, more than the subsequent visits for some reason.  Perhaps the fact that this visit was a check and held the same uncertainty as the first visit did.  The clouds were heavy and black and our short flight pretty turbulent, a bit like my nervous stomach I guess.

We were quickly in Bangkok, and arrived in our studio before sunset.  I was happily distracted by good internet connection and spent a good part of the evening catching up.

All too soon, it was morning though, and that meant one thing.  Although my appointments were not until the late afternoon, I had to have blood taken and some of the tests need me to fast beforehand.  So I headed round to the bloodletting counter and after revising some timings my name was called by the needle lady.  She recognised me, or at least she recognised my battered chemo veins and my pathetic whimper asking for gentle treatment.  A number of vials were filled quickly and the first needle bit was finished – phew!

I was then free until the first appointment later in the afternoon but in my usual wittery self, was unable to really be able to relax and enjoy the time.  I found myself wishing the time forward and before long it worked and I headed along to my first appointment.

This was with Dr A who has taken over from Dr P and a kind of GP.  He looks particularly at my blood pressure and blood sugar as they are a bit troublesome.  The steroids of chemo had caused higher blood sugar levels and with a history of diabetes in the family it is something that needs to be monitored.  Dr A noted that the fasting sugar was fine but the other one a bit high, not enough to be considered diabetic, but he termed it pre-diabetic.  Great, but no surprise.  So we had a chat about carbohydrates and fruit and clarified the need to avoid too much or too many.  Unfortunately mangos are to be strictly limited, which is really hard just as now as they are in season and just delicious!  My BP check, although high before the appointment due to my nervousness of the checks, was fine and well under control.

More importantly though, Dr A went through my other blood results and was really pleased that liver, kidney function are normal, cholesterol good and red and white blood counts getting back to normal.  The body is amazing in the way it heals and recovers after such heavy treatment.  So he was very pleased and asked me to come back in 3 months.  Phew!  One down, two to go.

Next was my appointment with Dr W2, the oncologist.  We had a bit of a wait as he was delayed but before long we heard him whistling before we saw his smile.  He called me in, and firstly examined me, checking the radiation healing, and my surgery area.  I almost forgot to tell him I had had shingles, and he checked that too.

Then it was time for him to look at the bloodwork that he had ordered.  He was similarly pleased with my recovery, but noted one result.  This is the CEA or Carcinogenic Embryonic Agent and it sounds pretty sinister to me.  He said that this one was higher than the last time it was tested, back in May at the end of radiation.  This immediately set of loud clanging alarm bells in my head and I asked him about the CEA.  He said it is sometimes called a tumour marker, which I have heard of, and this can be an indicator of some progression or recurrence, but can also be caused by other factors.  He said that smoking can cause it to be elevated – and I told him that did not reassure me as I have never smoked!  I knew I was going to be Googling as soon as I got back to the studio!!  He told me that it is not anything to worry about at the moment, but that he wants to keep an eye on it and see me again in 3 months.  He had said in May that he would make a decision about whether or not to de-port me this time, but we did not discuss it, and I am pretty sure that is because there is no point in taking the port out when the marker is slightly high. Hmmm.  So then we talked about another favourite activity – flushing the port.  He said it should be flushed then, and again in 6 weeks, at the midway point between checks.  I asked if I could have it done in the morning (today) and he laughed and asked if I had forgotten my magic numbing cream (though of course he called it by its proper name).  I said that I still had to see Dr W and that it would be very late so best to do it in the morning, and he agreed.

So my heart was a bit heavy when I left his room, even the general message was good, the tumour marker was not something I had wanted to hear.  It made my wait for Dr W (the surgeon) a bit gloomy, as I watched the women whose appointments were ahead of mine.  I also knew that Dr W would have something to say about the Revenge of Twang Arm.  His assistant kept me updated on how many patients were in front of me, bless her, and soon it was my turn.  After a warm hello I was sent straight to the couch for examination.  He examined me very thoroughly, which I found reassuring and he found a very tender spot under one arm which seemed to be linked with the shingles nerve. He said he saw nothing suspicious or worrying. PHEW!!  I do like to hear those words said out loud.  As expected he was not impressed with Twang Arm’s limited range of motion.  Thanks, Radiation.  Thanks, Shingles.  He was particularly interested in my hair and the Annie Lennox look!!  He asked what it was like before and I told him it was a different colour.  He asked if it had been curly before, as there are definite kinks appearing. He was highly amused when I explained that I had paid large amounts of money at the hairdressers to get curls in the past.  Somehow I preferred that to the chemo curling process!

We then sat down and he went through the details from his surgeon perspective.  Apart from Twang Arm’s stubbornness he was pleased with my progress.  He saw that Dr W2 had noted the elevated CEA tumour marker and I took the chance to ask him about it.  He also said it was nothing to worry about, but that we should keep an eye on it.  Apparently if it rises it can also indicate colon cancer, but was not at the levels which would indicate breast cancer, so he seemed very cool about it.  He then asked if I have had a mammogram since diagnosis, and I said that I hadn’t.  As I had expected, he said that he wanted to do the Big Check at the next check up as it would be around the one year mark, the time I have heard called the Cancerversary.  He said that he had found nothing worrying, but of course the scans and mammo will give much more information and detail when I come back in November. 

So it was all reassuring – up to a point.  I really feel much stronger and fitter and the blood work was very encouraging.  Except for that CEA marker of course, which was a real cloud.  Predictably I was on Google as soon as I hit the sofa back at the studio, and looking up causes for elevated CEA.  I did get a bit of insight, but not a lot of reassurance to be honest.  The markers can indicate some progression which is really scary.  However, the markers are apparently not a solid and reliable indicator on their own and in isolation and they should be tracked over a period of time alongside other tests.  I also read that a minor variation (less than 2) was not worrying (ooh good – my rise was 1.1) – but as long as it is within the normal range.  Oh.  Mine was not significantly raised but is above the normal range without a clear cause.  It was at the upper level of normal for a smoker.  The one nugget I got from Google was that dehydration can concentrate the CEA and raise the result.  I am hanging on to that a bit as I had fasted before the blood tests, and therefore was probably slightly dehydrated. 

So the day ended on a mixed note.  Relief that I am doing well and recovering, and of course that there was no obvious sign of any nasties.  Relief that I had got through the first review check and had some really encouraging words.  This was tempered however, by the trepidation of the port flushing in the morning, which I really dread.  Most of all, though, was the niggle of the CEA marker and the knowledge which has lodged in my brain that there is a slight possibility of something unwelcome going on.

I am a worrier by nature.  It is my best skill and I am an expert in the art of tormenting myself.  I managed to rationalise the whole thing before I slept, but when I woke in the night, my mind had turned it into a big scary beast. I usually get rid of these thoughts by focusing on the coming day – but with the prospect of the dreaded port flush I found myself between a rock and a hard place in terms of seeking reassuring thoughts.

Happily, the day arrived in bright and sunny form which helped to dispel negative thought and I focused on getting back to the hospital and getting the port flush over and done with.  I headed to the oncology ward on the 5th floor and had the magic numbing cream slathered over the port area.  After the usual hour to let it take effect I returned and let the wonderful oncology nurse get on with the dreaded task.  The needle was soon in and apparently my blood return was again good and the port was quickly cleaned and the needle could come out again.

So I was able to leave the hospital, and seal closure on my first 3 month check.  I am due to come back in November and know that I will be really stressed by the Big Check, the marker contributing significantly to that stress.  In the meantime, however, it’s time to continue with recovery, do all I can to heal – and to continue to see off Twang Arm!

Malignant, maligned and misaligned

When I first saw my Doctor back in September with the newly discovered breast lump, she told me there was some “asymmetry” which needed to be checked out.  Well, you should check out the asymmetry now!

 I have previously recounted the tales of shopping in Bangkok for a prosthesis to fill the blank temporarily and the difficulties of even finding post surgery wear.  That was when I became the proud owner of the earless-rabbit prosthesis. 

I had had an unsuccessful attempt through mail order to get equipped and although I did get another “featherlite” prosthesis made of a kind of foam rubber, the bras did not fit comfortably and are still sitting gather monsoonal mould in the cupboard. 

I was finally directed towards an agent in Bangkok for post surgery attire and swimwear through a friend in the same boat.  However, my unusual size meant that there was nothing in stock which fitted me.  We ordered some goodies but the timing coincided with the troubles in Bangkok so the supplies had not been delivered by the time we headed to the UK in May.

In the UK I had great fun trying to track down some appropriate attire and to a certain extent I was successful.  There are specialist sections in a number of shops and I spent quite a while in changing rooms while the specially trained staff ran around finding me their best options.  Thanks to Twang Arm in the post radiation phase, it was really painful and difficult for me to dress myself.  I was therefore ASTONISHED to find that there was no such thing as a front fastening, post surgery bra available in the shops!!!  There seems to be a fair selection available through mail order but I have found out (the hard way) that it is vital to be fitted.  However, I was happy to get a variety of suitable options and was finally able to wear the fabric earless-rabbit prosthesis (let’s call it P1) I had bought in Bangkok.  This one has seams on it and is not really the most comfortable.  It is also as heavy as a bean bag, but it was better than nothing. 

I also managed to track down a post surgery swimsuit (out of a range of – one!) which has sewn in pouches for a prosthesis.  The pouches are essential – a friend of mine went swimming in a costume which didn’t have the pouch and parted company with her prosthesis – luckily she caught it as it floated off before her eyes!!  I am able to wear the featherlite prosthesis (P2) with this, although it is not as suitable as a silicon or synthetic one would be.  When I swim with this one, the foam absorbs a little water and creates a kind of mini Jacuzzi effect when I get into the pool.  But otherwise, it looks almost symmetrical and I don’t think you can tell that I am wearing a prosthesis.  And if I don’t think you can tell, then I think that is pretty convincing as my scrutiny is pretty thorough!

Back in Bangkok, my orders had arrived and with it another feather light prosthesis made of a synthetic kind of fibre (a bit like cotton wool). So I am now the proud owner of 3 fabric type prostheses but I am still on the hunt for a plastic/silicon type so that I can wear that swimming.

Now, going back to the question of symmetry, I have to say that none of my prostheses are quite perfect.  None of them are quite the right size and shape to match my remaining lonely asset.  Two of them have labels which I find very puzzling!  Why on earth do I need labels for a falsie??  The rabbit one, P1, is very heavy and a bit small.  The one I received from the specialist company by mail order (P2) is a reasonable size but does not sit comfortably in its pouch.  It tends to shift as the day wears on and tries to escape via my neckline.  It has a label at the top end which makes it very awkward to wear, as a label peeking out from under my blouse is not a good look!  By the end of a working day I am having a tussle with it and trying to be extremely subtle to keep it in its place.  However, it has been more successful in the swimming pool.  The superlight one  (P3) which I ordered in Bangkok is the one I wear most often as it is comfortable and feels the best match.  It is also the best behaved.  However, even that is not perfect and I feel like a lorry with misaligned headlights – one on full beam and one dipped!  So the quest for symmetry continues…………………