It is the day after the checks.
I have been a bit silent in the run up to these checks, and there is a reason for that. I have a confession to make.
I have been doing my usual waltz with the Captain (Paranoia) and had fleeting concerns about the usual aches, twinges lumpy bits and itchy spots. But 2 weeks ago I woke in the night with a very strange pain near my scar area. It felt like some kind of severe sting, and rather reminiscent of shingles-like pain. Yes, it really was painful – enough to wake me up. I hunted around to see what was causing this, and found a slightly raised area, which was extremely tender and painful. It felt a bit like a very nasty sting, but there were no other marks or indication that it might be a bite or sting. Just one isolated little spot of bother.
Of course, that made me worry but not unduly. After all, living in a tropical climate, there were likely to be all manner of weird little beasties which could cause a bite. But it lasted for a few days, and I could feel a tiny lumpy area. Given its proximity to my mastectomy site and scar, and the fact that it persistently stung, the worry grew and I found myself consulting Dr Google about skin mets. Dr Google kindly provided me with a variety of images, most of which did not resemble my little “wirple” but a couple did look frighteningly similar. So then I started searching the Breast Cancer sites for more information. There is not a great deal of information about skin mets, but there is a little. And the thing that freaked me out, was that there was a consistent description of one type of met as feeling like “a grain of rice”. And guess what? My little wirple felt just like a small grain of rice. Uncooked of course!
I obsessively checked the wirple and willed it to go away. Although it did start to ease a bit in a few days, it was still very painful so I dragged it off to see Dr H. I knew my checks were imminent, but needed to have it looked at by a real Dr and not Dr Google.
Dr H had a good old look at it. When I mention that she had a magnifying viewer on her forehead and a searchlight that could illuminate a large village, you will get a sense of the scale of this wirple. She had a very thorough look and examination, and found nothing conclusive. While it didn’t scream skin mets, nor could she totally discount it being something worrying. She of course stressed that as a General Practitioner she would not be equipped with a great deal of oncology experience. She then brought out a reference book on skin conditions and we went through this together, looking at the various example of skin mets from breast cancer. Most of the images did not correspond to my wirple, but as Dr H said, she was not able to discount it. She was glad that my checks were within 10 days and the Drs W and W2 could run their weathered eyes over the wirple.
So I left the surgery, feeling mildly better (because it was not a clear “OH MY GOODNESS THIS IS VERY WORRYING” finding) but still anxious. And anticipating a biopsy in all likelihood to check it out further.
I settled into the routine of willing the days to pass so that I could get it looked at by the specialists, and willing the days not to pass in case it was nasty. Sleep was highly evasive and I spent many hours trying to seek out puzzles and distractions, but without great success. It was horribly reminiscent of the time between discovering the original cancer, and being diagnosed.
The thing that was most revealing though, was my reaction in terms of sharing this. Similarly to the situation when I first discovered the limp, I found that I did not want to worry close ones. It is bad enough lying awake worrying about your own stuff, without imposing it on others. So I kept quiet about it with the exception of a few people back in Yangon. And the rationale for sharing it with these people was based on the fact that I had hardly mentioned the original lump to others, and the result was bad. So if I did mention it – then perhaps the result would be ok. I was meant to be planning home leave, but found it impossible to book anything other than my return ticket to the UK, just in case I was tempting fate.
Not mentioning it to family did mean that I was not able to blog about my worries. And that was quite a revelation to me. I have been used to the blog’s function as an outlet, and as a way of processing what goes on in my head. It was very hard to keep quiet about this. The fact the the laptop decided to choose that very time to crumble probably helped as it meant that blogging time was even more limited. It made me realise that there is a hierarchy of priorities in communicating my worries.
So that is my confession. I have been keeping a secret about the level of worry and fear caused by this wretched wirple. Until Today that is. And the reason I can finally talk about it is because I am in Bangkok and had my checks yesterday.
As always it was a long day, helped enormously by the fact that my friend and I had planned and schemed to have our checks together and support each other (read cancer rebels!) We stayed in a suitably swanky place with spectacular city view. Well, from the 41st floor you would expect good views, along with the vertigo. And the inability to go out on the balcony that high up!
We headed to the hospital together and re-grouped between the various tests and appointments. After the usual bloods etc, I saw Dr W2 in the late morning. Sitting in the waiting area, was even more painful than usual knowing that he would look at the wirple, tell me how my blood work was and generally tell me how my future was looking. The first thing he said was that I was looking well. I told him about the wirple and he examined it. His verdict was a wonderful “Pah – that is nothing”! I said that I had been terribly worried, and he said it is absolutely nothing sinister. He noted that my tumour markers were down a bit further (now well within the normal range) and all other blood work good. He examined me carefully and found nothing at all untoward. I sat back down at his desk as he shared his verdict. “No relapse”. No Relapse is NED in disguise. and JUST what I had wanted to hear, fearing I would not.
So by lunchtime I knew that the wirple was a nuisance and not a major problem. I headed up to the oncology ward to get my port flushed, and after a little obstinacy even the port cooperated and produced a blood return! I asked the nurse not to put the usual plaster over the puncture mark to avoid aanother nasty reaction and she of course obliged. The oncology nurses are indeed angels.
There was just enough time to scoot across to do some urgent retail therapy. I should perhaps add that the day before the tests I had pre-empted my checks by indulging in a replacement laptop. (Which is STUNNINGLY beautiful! Really, it is.) So I had to get a couple of “essentials” to make sure it was feeling valued. Then I hurtled back on the sky train in time for my appointment with Dr W, the Surgeon. He looks at things differently to the way that Dr W2 does. Understandably, one looks through the oncology lens and one through the surgical lens. Dr W2 floored me briefly when I told him I was planning to travel to the UK, by asking if I would be returning for my treatment. My stomach went into free fall, when he clarified. He thought I was returning to the UK permanently and meant care rather than treatment. It’s amazing how the subtle change of a word can take on a completely different nuance.
He examined me carefully too, working at Twang Arm and again saying that my arm movement was still very restricted and the cording quite bad. I think that he is keen to have a go at Twang Arm with his surgical instruments at some point but that it does not warrant its own surgery. Again I dressed, and sat down at his desk. He used slight different vocabulary as he wrote his findings “No recurrence” beside some interesting depictions of my scar and arrows pointing to various bits of Twang Arm and its obstinacy.
He asked when I had had my last mammo and I said that it would be a year come October, so I was expecting the Big Check to be next. He agreed and ordered the necessary scans. This time I will have an extra ultrasound of my liver for a treat. He is not sure about another CT scan considering that I had an additional one at the 6 month point, so we’ll see what Dr W2 judges to be needed.
But that is for another day, for the time being I was released into the heavy, humid air and torrential rain to re-group with my friend who had been going through her processes. It was late in the day when we collapsed, exhausted and emotional, ready to bubble.
Bubbling had been the pre-agreed strategy. If the checks were not good – it would be appropriate to have some bubbles. If they were good, then bubbles would be in order. However, there was another clear bubbling activity. We talked about how draining the whole process is. And the fact that while it is an enormous relief to hear that the checks have this time been kind, there is not a sense of euphoria. There is just a massive exhaustion and overwhelming desire to weep. We had had grand plans to eat somewhere decadent but that plan rapidly evaporated particularly given the exhausting day that my friend had had.
She of course had known about my wirple. We have this instant communication when something crops up that only a cancer exposed mind can understand. We both had different stresses and anxieties, but it was enormously helpful to go through the checks in sync. This is something that we were able to do here, and I know that it is not possible in most places. However, as I have mentioned before, our medical treatment is first class on the world stage of cancer treatment, but the softer side is not really in place. So this support has been absolutely critical.
The day looked different in more ways than one than it had by nightfall, in every sense.
When I was in the lift this morning, the doors opened and a mother and young boy got in. The little boy had a small backpack, with a bottle of water and probably many other essentials for his forthcoming day in Bangkok. I was suddenly taken back to the morning after my diagnosis. I remembered looking at the people there and feeling a terrible sense of sadness. I knew that these people were probably either on holiday, or business. They were probably looking forward to the day ahead. They had no idea that I had just been delivered the most life-changing message a few hours earlier and that I was in a completely different place to where they were. I remember the isolation and feeling of fear, uncertainty and dread over what might be ahead. But this morning, I felt a sense of kinship. I too was looking forward to the day ahead and I could identify with the little boy’s excitement portrayed in his features. I found that I was again in a different place to the one I was in after diagnosis, even though I could physically see the same building where I had been.
This means that tomorrow I am travelling to the UK, and so looking forward to seeing close ones. I will try and avoid departure lounge gymnastics and do not dread going through immigration as I did last year when bald.
I am sorry that I kept you in the dark about the wirple, but I am very happy to be giving the confession and update that I am.