Finally – the Radio Therapy weekend.

I have a little “Radio Therapy Passport” which the hospital has given me.  It is a cute little booklet containing helpful radiotherapy information and my treatment schedule.

Most importantly, it sets out when I have treatment sessions and which are my days off.  Essential for those of us with chemo brain!

My schedule is 5 treatments a week from Tuesday to Saturday over 5 weeks (from April 21 – May 25 – as long as there are no delays or unexpecteds).

A glance at my schedule above, shows 2 pieces of good news for the day.  Firstly, Treatment No 19 was ticked off today – that means only 6 are left.  Surely I can get through that?  Secondly, this is Saturday evening and now I have my 2 days off – so it’s my RT weekend!

And since I have started out on this new Jelly version of Radiation, I reckon there is only one fitting way to mark the weekend………………

…….. at last – the ice cream I was dreaming of, to complement the jelly!

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!

Not when, but if? …… Surely not!

As I near the finish flag in the Triathlon of heavy duty treatments I yearn more and more to get back to something like the way I used to be.  I know that it will take time to feel better, to get my own legs back and be able to do many of the things I used to be able to do.

The side effects of chemo have been a real mixed bag of delights.  It is no secret that I struggled particularly with the loss of my hair as I have ranted about it on various occasions.  I am sure it is no surprise then that one of the biggest things I look forward to is not seeing Dr Evil in the mirror any more!!

I remember so clearly, that day in November just after chemo 2 when I became bald.  I remember sitting in the chair at the hairdresser as the last of my hair fell to the floor under the clippers and being unable to stop the tears.  The shiny white scalp was such statement that I really, really was a cancer patient.

I have never been able to get used to being bald and I have really focused on the fact that hair loss from chemo is a temporary thing. In fact, the one thing I really need to hang onto at the moment is the belief that my hair is coming back, and coming soon.  After all it is over a month since my last infusion of Taxotere.  The fine covering of duck down must evolve soon into proper hair, mustn’t it?

So when I read this recent article suggesting that permanent hair loss after Taxotere is more common than we often expect, it was not a welcome piece of information.    According to the research, the numbers are people who experience permanent alopecia are not huge, but large enough to be significant – estimated at around 1 in 16.

One interesting discussion is that some people feel that they would have chosen not to have had Taxotere if they had been aware of this increased probability of permanent hair loss.

That really made me stop and think.  I cannot imagine that I would have even considered not having Taxotere, no matter how difficult I found the side effects, even if I had been aware that the hair loss could be long term.  Survival and recovery and the topmost priorities for me, given my diagnosis and pathology.

Oddly, the thing on my mind is more about how I felt that day in November particularly, and how I feel every time I look in the mirror at Dr Evil.  It was hard enough knowing my hair and I were parting company (no pun intended).  I do not know how I would have felt, and how I would have coped, if it had even occurred to me that this loss could be permanent.

I will be looking even more closely at the duck down from now on and let’s hope it does decide to thicken, grow and darken.

Race for Life

Today sees a number of women taking part in Cancer Research UK’s Race for Life.

The Race for Life is the largest women-only fundraising event in the UK.  The Race for Life website tells us that “Since 1994, women of all ages and fitness levels across the UK have come together at these inspiring events to walk, jog or run 5k to help beat cancer.

Some take part in celebration of surviving a cancer experience. Others take part in memory of a loved one or to give hope to a cancer-free future. But all of them share a common goal: to raise money Cancer Research UK’s groundbreaking work to beat cancer”.

I had vaguely heard of Race for Life in my Pre Breast Cancer life, but who would have imagined it would have the meaning it does now?   The  Races take place throughout May, June and July across the UK, but today’s one is particularly poignant for me.

Today H and E are running as part of a team in the event in Queensferry near Edinburgh and my friend, M is running with her niece in Inverness.  Many friends and family members are running in other Race for Life events across the country in the coming weeks, as well as in the Loch Ness marathon in October.

It is a strange and emotional experience, and particularly humbling.  This time last year I was completely unaware about cancer.  It was not something that had touched us closely.  Furthermore, no one in our near family (blood relatives) had been diagnosed with cancer, as far as I am aware.  I think I overestimated the importance of hereditary factors in cancer, I had a belief that cancer was not something that would affect us.  This made the shock of my diagnosis in October all the more acute.

That situation has turned right round now.  I have made friends with other women with breast cancer and who are also undergoing treatment here. I have had incredible support and innumerable valuable hints and insights from family, friends and colleagues who have also been affected by breast cancer.  I have also connected with other women around the world through the Breast Cancer sites and other blogs.

And recently, women close to me and my family have been diagnosed.  Life at the moment seems to revolve around breast cancer.

So the Race for Life events which are underway around the UK have a powerful significance.  I am humbled by the efforts of so many to support the raising of funds and awareness towards cancer research, screening and treatments.  I am indebted to those of you doing many different things to raise this awareness and funding.

Breast cancer has changed my life irrevocably but thanks to the advances in treatment my prognosis is much more optimistic.

But there is still a very long way to go.

THANK YOU!

Medium rare?

I know there is an election happening in the UK and there is great attention on that, but I have news……………

I have just come back from my 13th radiation session – out of 25.  That means that I passed the half way point somewhere around the 76th to 78th beep today.  Now I count the beeps daily but with the machine changing position and my wandering mind I often lose count and the total varies between 73 and 76.  The winner is 75 with the most counts but that doesn’t mean that it is the right number!  Even if the precise beep when I passed that stage was not completely sure, when today’s session finished, it was clear that I had passed the half way point, .

I wonder if that makes me half cooked – or medium rare?

Progress re port

Yes, that’s right – this is not a progress report, but an update about progress related to my weird and perhaps wonderful port, which has been neglected recently.  It has been absent  from discussion here recently, as well as being unused since chemo 8.  I have certainly not forgotten about it though.

Since it was “installed I have always been aware of it and it can be quite uncomfortable.  The button on my neck remains a mystery and gives me the wobbles when I touch it by accident.  But, and it’s a big but, it made the chemo infusions far less trouble, pain and discomfort than having a cannula inserted each time.  The experience of IV antibiotics when I had my little encounter with pneumonia confirmed that emphatically.

Now that radiation has started, I have found that the port is more uncomfortable than before.  It pinches a bit when I sleep and when I raise my arm above my head for the radiation zapping sessions it also nips.

But here is the problem.  Firstly, the thought of its removal gives me more heebie jeebies. I know it is a small and easy procedure usually carried out under a local anaesthetic.  That means needles and cutting and being awake and freaked out when it is getting done.  That is Scary Thing Number 1.  And ironically, I am just as scared of general anaesthetics so that would be Scary Thing No 2 (or perhaps 1b since it would be one or the other).  Secondly, and I know this sounds inconsistent and a bit strange, but if it is removed, what happens if I need further treatment?  The problem with cancer is that you live with the fear and uncertainty of a recurrence.  That is the Most Scary Thing. The thought of recurrence is accompanied by the dread of more treatment, especially more chemo.  Scary Thing No 3.  And if that happened when the port has been removed then there would be the additional matter of another small surgery, with its cutting and needles and horribles to contend with to insert another port.  Scary Thing No 4.

There seems to be a mixed approach on removal of the port straight after chemo.  I have heard of many women who have said goodbye to their port pretty quickly after their last chemo and many more who are still nursing theirs.

So when I had an appointment with Dr W2 on Sunday, I was not surprised when he mentioned the port.  My stomach flipped as I knew that whichever option he suggested, it would give me the heebie jeebies.  My own preference would be to wake up one morning, and find that it had been miraculously removed in my sleep.  Not by surgery, you understand, by magic.

Dr W2 told me that he didn’t want to remove the port yet.  Of course there is a relief that no imminent surgery is facing me.  But of course, that brought in anxiety and fear that he secretly believed that I would need more chemo!  Irrational I know, but that’s what this does to you, believe me.  I asked him why, and he explained that it is such a simple process to remove it (yeech….) and much more difficult to put one in (probably even more so for a second one) that it was better to leave it in for the time being.

So a reprieve from needles and knives for the time being, but for my worry worry head, a bit of a cloud.

Then came the finishing touch.  As I am not having chemo any more, there is a need to flush out the port and make sure it is clean and there are no blockages.  Charming!!!  Seeing my face, he quickly assured me he was not going to do it right then and there but it would need to be done next time.  Something else to look forward to.

So that is the update on the port.  We are still inseparable and will be for a bit longer.

It also delays the moment when I find out more about what it looks like and how precisely it works.  It still freaks me out too much to find out detailed information when it is still there.  So in the meantime, here is an insight for you.  Quite literally.  When I had my chest X-ray in Yangon, there was a lovely clear X-ray image of the port.  The image below gives a sense of what it is like.

There are still many mysteries of the port, but the biggest one is about the funny button on my neck.  You can clearly see the port and the round shape where the special needle is inserted.  You can also just see the catheter leading from there which snakes around and eventually leads into the jugular vein (heebie jeebie jeebie).  There is no sign at all, however, of the button on my neck.  That is a mystery which will have to wait for another day.

Internet cancer – flagging it up!

There is no doubt that my experience of cancer is very different to the one I might have had a number of years ago.  For several reasons, including medical advances and being treated in Thailand.  But the biggest factor has to be – the Internet.

I have discussed Google and the fact that we have access to so much (possibly too much) information from the first suspicion of something perhaps being awry.

We also have specialist sites such as the Breast Cancer Care site which is more UK based, and Breast Cancer.org which appears to be more US focused but of course both are global by virtue of being internetty.  In addition to having a heap of information readily accessible, each has a Community and Discussion Forum.  This is where those who are affected by breast cancer can discuss any topic you could think of as well as connecting with others who are going through similar treatments, have the same or similar diagnosis or other points in common.  There is a lot of sharing, caring, humour, creativity, venting and “very lively discussion” and on these and many friendships forged.

There are also many blogs by other women with breast cancer, as well as family members who have someone close who has breast cancer.  Each has its own perspective and character.  A glance to the right of my page will reveal a list of my “Breast Cancer and related Blogs” which is a selection of some of those I follow regularly.

I feel as if I have made friends and got to know many other people, mainly other women who are also living through this breast cancer life through the Forums and the blogs.

I have also been very clear that my own blog is a coping strategy for me.  When I record what is happening it helps me to process it and deal with it.  I am aware that I am forgetting much of the detail of what happened earlier on and do not want to lose this into the aging grey matter which hosts my own memory stick.

Now, however, I have discovered a new gadget which is providing great enjoyment and silly levels of amusement.  You may have spotted the Visitor Map on the right of the page.  This is the best thing since the invention of Jaffa Cakes.  It notes down the country of each new visitor to the blog – along with a mini map.  It is so exciting!  Apparently there have been visits to the site from a total of 21 different countries since I installed my fabby toy.  I have had such an interesting range of callers, many of whom are from the UK and US. There is also a wonderful footprint from visitors from countries I have lived and worked, as well as from friends and colleagues who I have met there.  These have brought flags from Canada, Australia, Switzerland, Denmark, Thailand, India, Nepal, Sri Lanka, Bangladesh, Myanmar, Mongolia, Uganda as well as Algeria, Armenia and even Bhutan!!  I have also had visitors from Russia, Brazil, Japan and my very latest one is from – Kazakhstan!!  How cool is that?  I even had a visit from Samoa but for some reason the map didn’t appear.  So unfair.

So if you want to make a sick woman and a rapidly cooking gecko very happy (there’s nothing wrong with a bit of emotional blackmail), do visit the blog whenever you are in a new country.  At least once 😉 !  And do feel free to spread the word to the rest of the world ;)!!

Reasons to be cheerful – part 2

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

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

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

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

That is a very clear reason to be cheerful!