In a scary space – the details of the past days

Pre-script/spoiler alert

As promised, here is the detail of this latest twist in the tale.  I particularly wanted to provide the previous short post, to share the news promptly that the investigative tests had been clear.  This is absolutely not intended to bring concern or suspense, but rather to document and probably moreover, process and offload, download and upload the events of this week.  Hence the “spoiler alert”.  There is no bad news in this post.

While I was waiting for the bone scan, I had two hours to wait after the radioactive dye was injected.  I sat down with my laptop and hammered away at the keys, just banging down what was going on in my head.  Looking back, it was just like being in an exam, that sense of purpose and pressure as the words flowed.  The following is what I wrote during that time.  I have tidied rather than edited, so it does come across as rather messy and lurches from big serious thoughts to the utterly trivial.  I did not want to re-work this apart from correcting errors and clarifying aspects which in hindsight might be inaccurate or unclear, because it is a snapshot of where my mind was right at that time, when I did not know.  I have added this pre-script and a post script to situate what I wrote while in that scared space.

I am sitting writing this while the radioactive dye does its preparatory work.  Ironic as I am “dying” to know what the bone scan is going to reveal.  Dying to know that I am not stage 4 and not in a inevitable process which will ultimately lead to my body dying.  And my mind, although not for as long as I can keep my hands on it.

When I am worried, I tend to retreat into myself.  Contradictorily I crave support and reassurance, but something inside me retreats and works through whatever needs to be worked through until there is at best reassurance and relief and at worst clarity on where I’m heading and what options there are.

And that is the space where I find myself right now.  Usually I don’t write about this, either on the blog to the wide (wide blogging anyway) world, but also not really to family, friends or colleagues either.  Since my original diagnosis in 2009 when I told hardly a soul, I have developed a slightly more “let’s not tempt fate” approach to follow up tests and usually share a concern or worry if I have one.

I approached the tests this time with a slight sense of complacency.  And that was thanks to the CT scan I had had in July at the time of the Pulmonary Embolism.  Dr W2 had reviewed that CT scan not just from the perspective of the clot, but also (and particularly I suspect) through his oncologist glasses.  He told me that the CT scan gave no indication that cancer was a factor in the pulmonary embolism and lung/ chest trouble.  What a huge relief that was.

And so this has been not so much in the back, but very much in the forefront of my mind.  If there was no sign of anything worrisome back in July, then surely things have a better chance of being ok through these results.  Surely.

Having the Big Annual Checks so soon after the PE episode added to this complacency for sure, although I would not be me if I was not anxious and worried about the checks.  That is the way I rock and roll.  I am the Worry Queen after all.

The checks had to span two days as the number of specialists (aka superheroes) I see increases with each extra bonus “thanks to freaking cancer” condition I collect as time wears on. So on Monday 8 October I presented myself at my second home, Counter No 2 so that the process could begin.  I had to ensure that the staff knew to take all the blood they needed for all the docs – I have a range of checks including the usual full blood counts, thyroid monitoring, glucose, kidney function, liver function, INR and clottery levels, hormone levels and of course the scary old tumour markers.  To name but a few.  A few phone calls confirmed the final count and several vials (felt like litres) of blood were syphoned off.  (And they seem to be surprised that I am mildly anaemic when I am constantly being bled?)

I then had a couple of hours before seeing Dr M, the latest addition to my A team – my cardiologist, who was enlisted at PE time.  That permitted time to run out and undertake a rapid procurement of a couple of new swimsuits.  All this daily swimming is resulting in perishing swimsuits so replacement was getting urgent.  Before very long I was back at the hospital and waiting for Dr M.

He was happy with my results, and paid particular attention to the  INR result (my blood needs to be in a specific range, knows as the therapeutic range) while I am on warfarin for PE.  The result sat comfortably in the range and he was happy with that and the reasonable stability of results since returning to Yangon.  He was very happy with liver, kidney, thyroid and the other results that he was interested.  He will review how long I will be on warfarin, but we are still talking at least 6 months.

As he turned the page for the final results (which he was also happy with), my seasoned eye sought out the tumour marker results, as I know where they are on the page, and I know the reference ranges by heart. (no pun intended, siting in a cardiologist’s office!)

The CEA was comfortably in range at 3.62, but my eye was caught by the CA marker which has a reference range from 0 – 22.  This one tends to vary a bit, although it did reach 26 once which totally freaked me out, but it tends to be late teens early twenties.  Yesterday the figure of 30.2 screamed out at me. Now of course I am no expert, and much as Captain Paranoia is instantly leaping around me, jabbing his finger at the number and generally “high-fiving” around the room, I knew that his mischief was premature.  I asked Dr M and he said that this was not his area of specialism and that Dr W2 and I should talk about this.

So that was the start of the worry kernel planted in my head.  Dr Google’s advertising campaign sprang into action and for once I ignored it. I don’t want to hear his unreliable scaremongering.  No point in adding to my sleepless night with more scary thoughts.  I know his tricks.  Unfortunately this is one of his super-busy bonus seasons with all the “awareness campaigns” so the fact that has given up on me for the time being is more likely to be an indication of how busy he is rather than a shift in my own mind!

Of course, the tumour marker nagged away at my mind all night and I did not have a good night’s sleep.  I also had my range of tests due in the morning, so was generally cranky and nervous.  I was scheduled for mammo, ultrasound of breast and upper abdomen as well as X-ray.  No CT scan thankfully, as I hate them, really hate them.  Unfortunately the instruction to fast for the ultrasound had not reached me, and I had provided my bloods the day before after fasting so was surprised to learn that I should not have had breakfast.  This prolonged the scanning timetable as I had to return later for the abdominal ultrasound.

Finally, the scans were all done, I was well and truly squished and scanned and waiting nervously outside Dr W2’s room.

Dr W2 is a hero. He was happy with the mammo, X-ray and ultrasound results and said I was looking good.  We talked about the warfarin briefly, and then I asked about the elevated tumour marker.  His words of response were:

“That is a concern I have”.

GULP!

Those are NOT the words I wanted to hear.  I wanted to hear his usual “pah”, with his reassurance that there was nothing to worry about. That is the deal – I worry, and he reassures.

Next was the physical.  This was a bit different.  More checks, different prods, including the lymph node areas.  And different questions.  Have I noticed any unusual pain?  When was I planning to return to Yangon?

I really didn’t like this change to the routine.  Alarm bells were clanging loud and clear.

After the physical I sat back down and he started to go through a plan.  He talked about the Femara switch and if that was working out ok. Then he said he wanted to re-run a CT scan.  Mainly for follow up of the embolism.  Oh the dreaded CT scans, how I hate them.  I had thought with all the scanning and monitoring of the morning that those bits were done. 

Then he hit me with “and I will send you for a bone scan”. 

A bone scan??  What The What is that about? 

I should know better, that if you ask a direct question, especially to Dr W2, you need to be able to handle the direct answer.  I don’t think I was.

Is that to do with the Femara?”  I asked, knowing that Femara is more aggressive in depleting calcium in the bones.

“No” he said.

“No, we need to see if there is any cancer in the bones.  With your type of cancer, metastasis to the bones is more common than in other cancers”.

GULP!

“ Once you have had the scans, then come right back and see me.”

I was utterly stunned.

Appointments were rapidly scheduled, and the CT planned and carried out a couple of hours later.

The bone scan cannot be done in my hospital so I have returned to Wattanoosooth Cancer Centre of Bangkok Hospital where they have the radiology facilities for the city. 

And that is where I am siting right now, after turning up this morning and being seen almost immediately.  The radioactive dye was injected gently into the back of my hand and I have been asked to return in 2 hours for the scan.  This is a living nightmare.

I knew I would need a bit of help with this.  I joke that blogging is my Xanax, but when push comes to shove and I am at my wit’s end with worry and fear, then Xanax is the only thing I can think of that will do the trick.  I had already left the consulting room yesterday, but knew I needed something to lean on so asked Dr W2’s lovely assistant if I could ask Dr W2 for some Xanax.  A strange interaction ensued as she popped her head into his room.  Yes he would give me one Xanax for the scans.  ONE XANAX???????  I need a wheelbarrow full to get me through the next few days I screamed silently.  I’ll give you a strip of ten, he said, seeing my face.  Success.  Plenty to tide me over.

But blogging or writing is still my Xanax and that is why I am sitting here right now, battering away at the keys while the radioactive dye does its work and I wait for the two hours before the scan itself starts.  I think the Xanax is probably doing its work too as I think it has taken the edge of the extreme nervousness about the procedure itself.  It hasn’t taken away the fear, though nor has it prevented my mind rattling all over the place and heading in so many directions.  I know that this scan is specifically to investigate whether or not there is any sign of bone mets.  My mind leaps from the optimism that this will be fine, that there is only one raised marker, no other signs or symptoms.  To the scenario that the cancer has metastised to my bones.  And onwards to the bonus scenario that whether or not I have bone mets, that might perhaps mean that other organs could be affected, which is even more frightening.  Perhaps there is an entirely innocent explanation to the marker.  But deep down, or not so deep down I know that markers are less reliable when report low levels rather than high levels.  A raised marker is less likely to have a benign cause than the reverse.

This takes me right back to the space I was in just over three years ago.  After Dr H had told me that I should have the “asymmetry” investigated in Bangkok.  I remember veering from “I’ll be fine, there’s no history of cancer in our family and it just can’t be” to “if this is cancer, I will not let it take me, I will fight it and win” (oh the naivety) to “this is cancer, there are too many “let’s get worried” boxes that are ticked by my presenting symptoms.  I am afraid, how long do I have?  I could be gone by Christmas”.  Oh this is all so startlingly familiar.

My head is in such a similar space just now.  Part of me is optimistic based purely n the fact that the “only” alert has come in the form of the raised tumour marker.  And hey, it is not THAT raised.  30 is not so high, it is not in the hundreds.  And it has been 26 before and gone back down.  And that was also in October.  Must be something to be with stupid Awarenss Month my friend and I “rationalised”.  Based on no rationale whatsoever.  A bigger part of me is facing the fact that there cannot be many benign reasons for the marker to be raised.  And that is where my mind keeps returning.

The thing that terrifies me, apart from facing acute treatment again, management rather than cure, no end of the treatment this time, is about my future.  I cannot see it being possible to continue working with stage 4 cancer, overseas and in humanitarian and development work.  So what on earth do I do?  We would, in all likelihood have to relocate to the UK, and after 12 years in Asia that would be a massive change, even without the prospect of investigating how to get treatment and care in place.  I would have to set up home again in the UK, and what about all the paperwork and documentation to ensure hubby J could also relocate.

It is all utterly overwhelming. What the on earth are my options, what am I going to do in every sense.

As my mind continues to hurtle in all directions, I try to stay in charge of it.  Undoubtedly this will continue, and intensify until I see Dr W2 again.  At that point I know there are likely to be a few possible scenarios

  • Bone scan is clear.  High fives. Tears.
  • Bone scan shows clear metastasis and we will be looking at diagnostic investigations to identify treatment plan. Get hubby here pronto and speak with family.
  • Bone scan clear but signs of other worrying stuff going on elsewhere in my body.  Needs more investigation.  Biopsy etc. Tensed jaw, questions, trying to remember the answers to the questions which I must not forget to ask.  Get hubby here pronto and speak with family.

How can I tell my family?  What words will I use?  How much should I forewarn them that this bombshell could be coming?  What do I do about the visitors we expect in 3 weeks time? What about all the Big Stuff going on at work, the major project just approved after two years work?  All the changes going on around us?  How can this be happening now? What about my new bike?  Can I ship it to the UK if needed?  How long will I still be able to ride the darn thing? What about my hair?  No point in booking the cut and colour I had planned.  And the birthday thing?  My mother died on her 65th birthday, and my step mother on her 75th.  Am I going to die on my 55th birthday?  How do I tell everyone if the scan results are bad?  When should I start to make a list of those to phone, those to email and start on that dreaded “bad news” blog post…….

If it is in my bones, then I am stage 4, pure and simple.  If I am stage 4 then we are talking treatment and management rather than cure.  Not beatable, but treatable.  And that is the thing.  Treatment of Stage 4 (from the little I know) is about management, finding the option which best delays or slows progression of the disease.  And that treatment just keeps on going as long as it works.  8 cycles of chemo felt like a lifetime back at diagnosis time.  But there would be no more being able to count down towards the end of chemo, this is quite literally chemo or other treatment for life.

Writing this, has helped somewhat to control my mind and organise my thoughts.  I am still overwhelmed and terrified but the two hours has almost passed as I have battered out my thoughts.  Writing and Xanax, working in harmony.

Time’s up. Now it is time, time to enter the scanning bunker and do the tests which will determine my immediate future.

Post script

I found the scan was much easier than a CT.  Perhaps that is in part thanks to the Xanax?  For half an hour I lay, swaddled in a blanket and my arms held in place by my side while the scanner moved around silently and unobtrusively around me.  I probably drifted off.  My mind was nowhere in particular.  I was in a very different zone.  I was a passenger.

After the scan, I was taken back to the changing area, but on the way the technician asked me if I wanted to take the report with me.  If so, could I wait for half an hour.  Of COURSE, I wanted the report.

I replied affirmatively, but emphasised “I will read it if I have it, perhaps my Dr would prefer to go over the results with me?”  However, I knew that I would take the report with me, and read it no matter what it said.  I HAD to know.

I returned to the changing area, which was actually a small bathroom.  I took my clothes from the locker and placed them on the side next to the sink.  As I removed the gown, I heard a brrr, brrr noise, and turned round just in time to see the automomatic soap dispenser beside the sink, happily dispensing soap onto my clothes.  I returned to the waiting area, shaking and with the remnants of liquid soap all over my blouse.

It did not seem like very long at all before the technician returned. I could feel myself struggling to keep it together as she handed me the envelope.

I repeated.  “I am going to read it”.

She said, it’s ok, you can read it and take it to Dr W2”.

Reading the words, seeing the result brought my guard down and I completely crumbled in the waiting area, weeping and clutching my reprieve.

This feels like a huge overreaction, now with the results and the reassurance.  I know that compared with so many I am hugely fortunate.  Not only did I have clear results, although the tumour markers will be monitored more frequently over the coming months, my nightmare was so much shorter than is often the case.  They might have four of the longest days of my life, but it was all done within those four days.  From the initial bloods, seeing four consultants, mammo, ultrasounds, CT scan, and review it took just over four days.  I cannot imagine the anguish that protracted investigations cause and I know I am lucky.

Of course there were no high fives in Dr W2’s office.  I know it doesn’t work like that.  More a sense of numbness, physical exhaustion and utter emotional depletion.

However, one comment on my last blog posting said it all.  “We get it”.  Yes, my results were clear, yes everything was done quickly but look at the emotional and psychological torture we go through to get there.  And there is no point at which we can say that we have absolute relief and reassurance.  Because it is only valid until the next round of tests and checks. Yes, as my blogging  friend said “we get it”.

That is my validation and reassurance of my reaction to this whole experience, and even although it has been over  only four days, it is massive and a Very Big Deal.

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From bed baths to bubble baths

Progress indeed!  Just over a week ago, I was still having bed baths and was accompanied even to the bathroom in case I had a bit of a turn.  Now I am in the Big Outside World and regaining strength, health and confidence. And a mark of that progress is seen in the transition from bed baths to bubble baths!  (Not quite as extravagent as this pic, but wonderfully healing and relaxing).

And today also saw my return to the hospital for another blood draw.  The good news is that my blood levels have remained within the therapeutic range for the second test in a row. I m very much hoping that this can see Part 2 of the Great Escape swing into action.

While I am waiting, the Norway post is finally about to be shared, after rather a long time in the brewing!

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!

Jelly in the mould

It’s been a full couple of days.

Yesterday I had 3 hospital appointments, or 2 appointments and 1 treatment session to be precise.

I turned up at Counter 5 for my first appointment, in the morning.  My stomach was churning as I knew this one involved a blood test.  Blood tests involve needles.  Needles hurt supersensitive chemo skin.

Sure enough, I was directed towards the Lab and the row of seats at the blood letting counter.  When it was my turn, I gestured towards my still bruised right arm and asked as usual if they would be gentle with me.  I have to say, that the Lab staff are exceptionally good at these needle sticks.  Even if I said nothing, I am sure that they would still be very gentle.  The needle lady looked at my poor arm and its battered veins and set up a special blood drawing thing.  She even gave my arm a quick spray of numbing agent before she started her task.

After a wait for results, and a welcome cuppa, it was my turn to see Dr P for my overall check.  The blood had done well and showed that my body is slowly recovering from the onslaught of chemo.  Also importantly, it is recovering from the effects of the steroids which had pushed glucose levels up throughout the chemo.  Kidney and liver functions and cholesterol were also in pretty good shape considering everything,  Dr P was very happy with my general progress and noted my positive outlook and lifestyle changes I had made which she said were reflected in the test results.

So I came out of my appointment really smiling for once!

After a couple of hours, I was back at the hospital and waiting for my transfer to the Cancer Hospital for radiation and an appointment with Dr C, the radiation consultant.

The treatment went smoothly and quickly as usual.  Zap another one finished. and I headed upstairs for the final appointment of the day.

I did not have to wait long before I was called to see Dr C.  He seemed happy with the progress of the radiation and had a look at the blood test results I had brought with me.  He said there was no need for further blood tests – my encouragement and mention of the bruised arm perhaps influenced him 😉 .

He also explained to me that there would be a slight change to the procedure starting from today.  A gel would be applied to the area having radiation from now on.  It did not dawn on me to ask why or anything else about it.  I seem to have this “yeah, whatever” approach to what has to be done.  I have thousands of questions about the treatments, effects, prognosis and procedures, but never seem to have a why question.  Just do what needs to be done.

So when I turned up today for my treatment, the staff told me I would be having this Gel thing applied to the radiation area.  I asked what this was for.  Apparently, it draws the radiation skin-wards so that the surface of the skin area is targeted in the last 10 sessions.  This is when the skin really starts to colour and darken.  My skin is already pretty dry and irritated so I am not looking forward to the sunburn which is surely coming my way.

As I am always flat on my back, pressed into my mould and completely immobile I had no idea what this Gel stuff was like or how it was being applied.  I tried to catch a glimpse of it in the reflection of the big machine above me but could not really see anything.  There were a couple of test beeps to check the angle and before long I was back in the daily routine.  Beep, beep, whirr, click………..

Once the zapping was over, the staff came back to prise me from my mould and release me for the day.  Before I sat up, they asked me if I wanted to see the Gel as they removed it.  It was not quite what I expected.  It was a bit like a computer mouse mat (but larger) and made of a clear kind of gel, in a semi solid state.  It was peeled off the radiation area and taken away, probably for cleaning and preparing for the next jelly session.

Now that today’s session is complete, I have moved into single digits with 9 sessions left.  They will all be jelly sessions and I hope that my skin stands up to the concentrated rays.

It’s clear that the cooking course is moving forward nicely, and I am clearly moving towards the dessert stage.  So, when the final jelly comes out of the mould, I think I might treat myself to an ice cream to go with it!

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!