I had a horrible nightmare overnight into Thursday.
I had a very vivid dream that I discovered a lump on my right side. In my dream I knew that the date was exactly a year from finding the lump and so it does not take genius nor wildly lateral thinking to see what my mind was doing. I started the process of getting myself back to Bangkok to deal with the lump, and this involved telling people quite openly that there was a new lump and that I was very worried. The next stage of the dream focused on the fact that the lump was a rather odd shape, and it felt very hard, and even seemed to have a “point” at one end. I kept prodding and poking at the lump and eventually it worked its way through the skin (revolting I know but that is what happened) and turned out to be a cocktail stick. Heaven knows how it got there but perhaps it found its way there at the time of my mastectomy surgery. Even more worrying is how on earth such a bizarre notion played out in my mind while I should have been peacefully slumbering.
I was then faced with the embarrassment of going back to the people I had told about the lump and trying to explain it was a rogue cocktail stick!
That was my very weird start to Landmark Day 1 and I woke to the relief that I hadn’t found a lump combined with the memory of the day last year.
Yesterday (Saturday) was Landmark Day 2 – a year since I was referred by my Doctor to Bangkok for investigation. Happily my dreams have not been so disturbing, but then the events of that day were less alarming too. It is all cranking forward towards 2 October and the Cancerversary. I have something in mind, and underway to mark it so watch this space…….
There are numerous examples of “pinkness” taking over the shops in many places, as pink merchandise floods stores and marketing connected to Breast Cancer Awareness Month takes hold. I am hearing comparisons of the pinkifying of shops with the pre Christmas scenario. It’s happening earlier and earlier each year and becoming more prominent and widespread. Interestingly, I have yet to see any signs of the pinkification here – hence my hunt for Pink October.
It is a strange time for me. As we approach the start of the Awareness Month, I also crash into my big Landmark Days . Therefore, I have decided that MY own Breast Cancer Awareness Month starts on 23 September the anniversary of When it all Started.
So on the eve of this Anniversary and Awareness Month, I introduce you to my contribution to world pinkification.
When I installed the magical map tool, which tells me which country blog visitors are in, I did not know it would keep me so happy for so long!
Incredibly, my blog has been to far more countries than I have –it has been visited by people in 62 countries, with Portugal and Poland just joining the FBG Footprint Club. So it is a good time to appreciate the amazing diversity of countries and people visiting FBG.
I do know that some visits are accidental (for example, the quite literally misguided soul who Googled “feisty aliens” and was directed to a description of the foul taste of chemo mouth!) must have been disappointed and confused, as was the intriguing search for forehead shaving which landed a visitor here. I have no recollection of shaving my forehead, however!
The number of visits from countries I have lived in (Nepal, India, Mongolia, Sri Lanka and of course Thailand and Myanmar) is very exciting. It is also lovely to see the footprint which shows friends from the countries I have worked in, as they have moved to different parts of the world. It gives me a real buzz to see that FBG has been read in Armenia, Malawi, Afghanistan, Nigeria, Yemen, Cote D’Ivoire, Pakistan, Bhutan, Algeria and many more countries. However I shared my friend S’s disappointment when she went to a great deal of effort to log on in Samoa and Fiji and neither country appeared on the map! , I am fascinated by some of the countries – such as Kazakhstan, Greece, Peru and Argentina and wonder how on earth FBG reached there too.
This continues to make me ridiculously happy and I keep a firm eye on new countries which appear on the list. So if you visit a different country, it would provoke a massively disproportionate level of glee from me if you took a few moments to log on to the blog. Of course, visits to very unusual countries would be particularly well appreciated!
Now is that not a great excuse to book a trip somewhere unusual!
An interesting realisation dawned the other day.
I know my hair is growing, and I can feel kinks, especially at the back. There is not much to see in the mirror though, and it is still horribly short and shouts “cancer” (at least to me) from the front. I have been frustrated that I am the only one who doesn’t actually know what the new wavy hair looks like. And then I realised – I could take a photo of the back of my head and actually see what is happening.
I stood with the camera poised slightly above and behind my head (obviously my right arm as Twang Arm was having none of that) and clicked away merrily. Unfortunately the result was not too enlightening (and I missed my head altogether a couple of times). My creative skills were working fully though, and I had the presence of mind to ask hubby J to take a picture of the back of my head. What a brainwave! And indeed, there are wavy, curly locks.
They are still the wrong colour, but that can be addressed. I am still very reluctant to even trim my hair as I am intrigued as to how the waves will turn out, and how long they will last.
I am also happy to report some progress on the nail front. I still have the fascinating lines and the two tone nails from the Taxotere days. I have 4 lines – one for each Taxotere treatment, and the darker colour for those times. As the lines are moving up towards my finger tips though, they crack and split along the lines. Not pretty.
Similarly to the hair, I feel reluctant to do much about them until they have grown more and the funny lines and splitting are no longer there. If that coincides with the right timing for repair of the hair colour, then I reckon it will be time for a long awaited trip to the spa for a real pampering!
In Thailand something you hear and see often is the expression “same same” to describe anything resembling something else. I have often heard it used to persuade someone that something is just as good as the original (Rolex, fake Rolex for example – same same). There are t-shirts with variations of how it is heard and even a guest house called the Same Same Lodge. It always makes me smile when folks comment on hubby J’s resemblance to a Thai almost always with “you, me – same, same ah?” Used just as frequently is the potentially puzzling “same same – but different”. It is not too obscure though and is used often to describe something fairly similar to something else. But a little different, obviously!
How fitting that life changed so much in the land of “same, same”.
At the beginning of 2010 I remember thinking through how much life had changed, how much would never be the same again , and some things which I hoped would perhaps be similar to those pre-cancer beast days. It is interesting to look back at those lists and see if I am indeed settling into what is often termed “the new normal”.
Things that really have changed for good
• Bra shopping!! As anticipated, this is a whole new experience. Choices are greatly restricted and rely on proper fitting – no buying off the shelf! Happily from a Scottish perspective the cost implication has not been quite as much as I thought it might be, but I do wish there were front fastening options in the shops!
• My left arm. Oh dear. This is not good. Horrible Twang Arm is still causing me grief. It hurts, movement is still severely restrained and despite the fact that I swim regularly and exercise it, I don’t honestly feel it is really improving much. Perhaps when rainy season is over and my swimming is not so disrupted, that might make a difference. The numbness is definitely reduced though. One thing is for sure – this battle of nerves and determination is set to last a long time.
• Health and travel insurance. This is something which continues to really worry me and I need to stop putting off the need to research the implications.
• Using a computer. This has not been as bad as I had feared and Twang Arm has coped well with a return to office life. However, too much time on the computer does aggravate it a bit which is something I need to balance carefully in this technology based, online world.
• My wardrobe. Well, the wardrobe has not changed much and I can wear more than I could a few months ago. But Twang Arm does not like the contortions involved in getting dressed so I tend to rely on clothing which has buttons and is easy to put on. I am able to dress myself now which is progress though!!!
• Being spontaneous. And planning. Although it sounds as if the two are mutually exclusive, it is really difficult to do either for similar reasons. Planning is particularly tricky as I need to work around the 3 monthly checks. Moreover, in the back of my mind (or quite near the front of my mind actually) is the constant fear of another encounter with the cancer beast and a reluctance to plan anything in the further distance.
And the things which felt as they would never be the same, but which I hoped might well be one day………..
• Being able to plan a visit to see family, a night out, weekend away, holiday ……. Taking into account the difficulties in planning generally, I have to say that I now feel that I have much more control here. i have been able to get back to the UK, I have been able to rebuild a gentle social life. Next on the agenda has to be a proper break, whether it is a weekend or longer….
• Having a choice of things to order from a menu. Great progress here!! When chemo finished I asked Dr W2 about foods which I should avoid (or have more of) in order to regain my health and to keep the cancer beast out of sight. He said that research and data often gave contradictory messages, such as the tofu and soy debate. His advice to me? “Live your life, eat healthily and sensibly and don’t stress about food”! So while I eat very carefully and healthily (mostly 😉 ), I have far greater freedom in what I eat, and far greater choice then when I was on chemo. Coffee is again allowed, although I have never been a great coffee drinker. It is nice to enjoy the occasional cuppa or iced coffee. It was be wonderful to have a clear directive on what is good and what is not, but I know that is not realistic, and I have to balance clear nutrition messages with “living my life” as Dr W2 said.
• Scratching my ankle without getting shooting pains under my arm! I have just tested this one! Scratching anything these days is tricky because of the after effects of Taxotere (neuropathy and crumbling fingernails) but it seems that the shooting pains have at least subsided, if not disappeared. I still have supersensitive skin, and my shingles area is particularly prone to itchiness and irritation. But I do think that the Twang Armpit (how gross!) is less squealy and sensitive that it was before. It is still swollen and I find that my latest (well for months if I am honest) worry is that lymphodema sneaks in. It is a risk following lymph node surgery and can start long after you think there is no longer a risk. And it is another horrible thing to have to deal with.
• Walking to work carrying my lunch box and umbrella. We are still in the throes of rainy season here, and rainy season means RAIN! I actually find the rains really refreshing, revitalising and mostly enjoy the energy of the rain pounding on the surfaces, and lush vegetation it brings.
However, it can be pretty disruptive as roads flood, the power goes off, the thunderstorms are dramatic and even with an umbrella you can become drenched in minutes if caught outside when the heavens open.
So walking to work is limited at the moment. It is also something which very annoyingly seems to aggravate Twang Arm. However, I AM able to walk with lunch box, swimming gear and my own bag as well as holding my umbrella to keep either the rain or sun off me. Adding in the laptop bag makes it a bit more difficult but let’s see how the coming months progress and if Twang Arm is further banished. And of course, if rainy season will ever end!
• Dancing. Been there! Done it!!!! Ok, style was pretty “unique and Twang Arm tried to spoil the fun, but “yessir, I can boogie!”
• Sleeping in a position other than flat on my back with a pillow under Twang Arm. I still sleep mostly on my back and Twang arm still sleeps mostly on a pillow. I have tried to sleep on the surgery side which I have stopped for a while as it seems to aggravate Twang Armpit and the numb sensitive area behind my underarm. It is slightly easier to sleep on the port side (or is it starboard??) but it still nips a bit and still pinches the port area. Yeech.
• Going to the hairdresser. Well, I have of course had one visit to the hairdresser, although I know we can’t call it a haircut. More like a bit of a buzz! I am not sure whether to take the frosty locks for a tidy up yet as I am torn between losing precious hair and getting a style which makes me look like a person, and preferable a woman person. I had a very funny moment a week ago, when J asked if where the hair drier was. My reaction was one of irritation that I had left it unused for months – what a waste! Then I remembered why it has been unused!
• Travelling on my own. My trip back to the UK in June really brought it home to me much I had lost my independence. Even more difficult was the loss of confidence in doing things independently. I was unable to carry anything much on either side, found pushing a trolley very difficult and it was impossible to try and get my luggage off the carousel at the airport. I had to ask strangers to lift off my tiny neat little travel bag, to my embarrassment. However, that was 3 months ago and just after radiation. Now I feel much stronger. The fact that I can carry bags to work and push a trolley in the supermarket (and in Bangkok airport last month) is a sign that I can probably manage easy gentle trips.
• The taste of water. Oh it is so good to be able to drink water without it tasting like stagnant drains. Since my last check I have also almost stopped drinking fruit juice because of its high (natural as well as artificial) sugar content and love the taste of fresh, cold water. I still tend to squeeze a bit of fresh lemon but that is not to disguise it anymore, but rather to enhance the taste as well as adding in some fresh vitamin C. My taste buds seem to have recovered well, and I cannot think of any foods which I cannot eat or which taste different. And after a long time I am finally able to eat spicy food again, though I still cannot tolerate very spicy.
• Having a pedicure and massage. This is a funny one. I have had a few foot massages since finishing the treatment, but am still reluctant to have a massage or pedicure. I have so many sensitive spots that a massage does not really appeal to be honest. And my toes are numb and still feel too big for my feet so I do not feel inclined to have a pedicure either. • Looking forward to a trip to Bangkok. I think this will take a while. Perhaps a lifetime. A trip to Bangkok is a trip to the Hospital, tests, needles, scary appointments and fear. There may be the occasional trip to Bangkok which will be for other reasons, but given the regularity of the checks, most travel there will not be something I look forward to.
• Measuring time in units other than 3 weeks. This is an interesting one. While I no longer live in units of 3 weeks, I still find that time and planning is based on the hospital visits. They are the top priority when it comes to planning and other things must fit in round that. Happily the unit is no longer 3 weeks, but a more manageable 3 months which allows a sense f being able to settle and relax more without counting days.
• Being able to dress myself in clothes which go over my head. Work in progress. As I mentioned earlier, there are more garments which I can wear now when I compare with several months ago. I can also dress myself which is great progress. But the clothes which go on over my head? Hmm – must try harder I think!
So looking back over the past months, I can see that many of the things I had hoped would gradually ease have indeed done so, and I am able to feel a sense of “normality”. I know that this normality and life before I was diagnosed are not the same thing at all. Hence a popular term being the “new normal”. But I think I prefer my Thai version of the new normal – “same same – but different”.
I have just found this defninition of a “Cancer Survivor”. There are some other defninitions which are a bit more detailed but this is the one I choose for its simplicity:
A cancer survivor is an individual with cancer of any type, current or past, who is still living.
It without doubt applies to ME – so I can shout from the rooftops
“I am a cancer survivor”
That’s what I call a good start to the weekend 🙂
On the horizon, looming ever larger and seemingly gathering pace are a clump of landmark days just ahead of me. In the midst of these is the big landmark day, the strange CANCERVERSARY. This is the term I keep hearing which denotes the anniversary of discovering you have cancer. In some ways I find I approach the day with a sense of eager anticipation as it serves as a reassurance that I have survived so far, as well as highlighting how far I have come since diagnosis. In other ways it is dreaded as it is an unwelcome reminder of the horrible cancer beast coming into my life, changing everything like an earthquake, causing the very ground under my feet to lose its solidity and familiarity.
In the approach to the landmark days, I remember this time last year that I was blissfully unaware of how much my life was going to change. I find it hard to imagine what it was really like then, as it feels impossible to rewind back to what it was like not to have been diagnosed.
The first of the landmark days will be on 23 September which marks one year from discovering the lump, and is rapidly followed by another important date which was when I consulted my Doctor here on 25 September. That saw the start of serious worry and loss of sleep as the possibility of the lump being sinister became firmer. There followed a strange week and a half during which I lurched between naive hope that there was an innocent explanation to the lump, and an aching pit of fear of the unknown if cancer was the cause of the lump.
There seem to be no Internationally Agreed Guidelines 😉 for designating the day of a Cancerversary. Some people choose the day of biopsy, some the day of diagnosis, some the day they discovered the sign or symptom which turns out to be cancer. I have chosen the next Landmark day, 2 October, as the day itself because for me it represents the day that everything changed.
October 2 is the day I travelled from Yangon with feeling sick with fear, and desperate for a sign of hope. It is the day I had the diagnostic mammogram and ultrasound. It is the day I met Dr W and he pointed out the spaceship like mass on the screen, growing irregularly in different directions. It is the day my life changed, when I heard those words “highly suspicious of cancer”. I have no idea how I will mark the Cancerversary and I have no idea how I will feel on that day.
The Cancerversary is followed rapidly by a number of other Landmark days. On 4 October I will remember a year earlier having to break the news to close family and friends and my work about the impending surgery and almost certainty that it was cancer. I think that was one of the most difficult things I have ever had to do.
The 5 October is the day of the surgery and an important Landmark day as that is when cancer was confirmed and the radical surgery was carried out. Any tiny flicker of hope that the spaceship might be innocent was gone that day. Twang Arm came into existence that day. Every time I look in the mirror I am reminded of that day.
Although I knew that the lump was indeed a tumour and that there was lymph node involvement, I discovered the extent of the pathology on the next Landmark day – 8 October when I learned that 6 of the 15 nodes removed had a presence of cancer. A few days later, on 13 October I further learned that there had been no spread and that my tumour was Grade 2, and hormone receptive. I had entered a whole new world of terminology.
On 15 October I met Dr W2. Naively, I had no idea at that time how big a part of my life his larger than life character would become.
The next Landmark day is 23 October when I had the first dreaded chemo. I was terrified of the thought of chemo, the chemo itself and its toxicity, of the side effects and of the procedure. I had been re-admitted into hospital for minor surgery and I remember spending most of that day dreading the time when the porter would come to take me for the chemo. Every time the door opened my heart jumped and my stomach turned over. I didn’t know whether to be relieved or disappointed each time a nurse or auxiliary came in. The porter did come, later in the afternoon, and I duly had the first dreaded chemo.
One of the most difficult days will be marked on 17 November, although it was not a day of pain or obvious trauma like the other days. It is the day I lost my hair and met Dr Evil, who was to live in my mirror for months. My hair is still shorter than I would have it by choice, so the realisation that I have had nearly 10 months disliking my reflection in the mirror hits quite hard.
This means that October will see a number of days which will very strongly remind me of what happened a year ago. It will be a strange time and the fact that the Big Check is following soon after means that I know I will approach these days with some trepidation.
It will indeed be Breast Cancer Awareness month!