Everywhere you’ve been with me all along. Why me? How’d I get this hallelujah?u

It’s already starting to feel like Christmas was quite some time ago. New Year went by in the blink of an eye, and here we are and it’s nearly the end of January. There have been a few days this week when there has been a distinct whiff of Spring in the air. As quick as I am to get excited about the coming of a new season, I also have to caution myself not to fast forward the months away.

February will be my 3rd canciversary. 3 years since I was diagnosed with primary breast cancer and 2 years since I was told the cancer had spread and was stage four. This is my fourth year of living with the disease. I have written nearly 30,000 words in these blogs about what my life is like with cancer. I’m still not sure I do a very good job of explaining how it feels. How I feel. I am often asked “how are you, in yourself?” It’s almost impossible to put in to words. Some of those words would be sad, scared, but resilient and hopeful but on a bad day more like lost, angry and crushed.

The problem with anniversaries is that it makes the clock tick a little louder. It focuses the mind and brings you back to the reality. It reminds me of the day I walked out of the breast unit for the first time and I promised myself I would be OK. And I should know better than to make promises. It reminds me of the days that it took everything I had to pick up the phone and share bad news. It reminds me of the number of times people have turned away from me so I can’t see them cry because I am making them so unbearably sad. It reminds me that I have had a really bad start to the year for 3 years. It makes me fretful for January and February. This is the time of terrible diagnoses and treatments failing, meaning tumours marching on.

Anniversaries are about length of time, and that’s the worst part about it. The longer I’m here, the more I am eating in to the average survival time. Survival rates for people with primary breast cancer have improved so brilliantly over the last few decades. The progress is simply astounding and we should remember those brave women who put themselves through trials so that the generations ahead of them would stand a better chance.

I can’t help but be aware of the survival rates for those with my type of cancer and it doesn’t make for happy reading. This would be a good time to stop the clock.

There is of course an argument that statistics are only that. In many ways, and particularly in this situation, for me, they are not helpful. There are exceptions to every rule and I for one have always enjoyed a slightly Machiavellian approach to life and will, with every fibre I have, do my best to laugh in the face of a number that I do not like the look of.

In my last blog I wrote about the false start to chemo treatment number six. As a result of pretty terrible blood counts on New Year’s Eve I was sent home to have another week off chemo and hope that they picked up. I enjoyed a peaceful week, mostly trying to stay away from everybody who seemed to have the remains of festive lurgies. I went for an aromatherapy massage to get my year of looking after myself off to a positive start. It was delightful. Very soon the week had passed and I went back to the cancer centre for the first blood test of the year. Fortunately, everything had improved, my haemoglobin and white cells had lifted considerably so finally, the following day, chemo six was go. The chemo cycle is meant to be every 3 weeks. It took nearly 6 weeks to get from chemo 5 to 6. Partly this was due to some creative festive planning on my part, but was largely because it involved 3 sets of antibiotics, a blood transfusion, and a trip to A and E. I think the longer gap significantly helped my tolerance of the sixth dose. I felt pretty rubbish for two days, but since then I have recovered along a reasonably linear curve. This is unheard of usually for me. Whatever the reason, it has been an unremarkable cycle (so far) and for that, I am very, very glad.

Last week, a friend and I set off early one morning in the dark, and heavy rain, for Mount Vernon hospital. It was MRI time again and the stormy weather was not giving me much cause for optimism and joy. I always say that I assume the treatment is working until The Prof tells me otherwise, but it’s really hard to maintain that around MRI time and particularly at this difficult time of year. I didn’t hate the MRI too much this time. I was so tired I think I nearly fell asleep. The anxiety came afterwards as I started to think about the results. I found this MRI/results cycle really stressful. There is so much depending on this chemo working. In fact, everything is depending on this chemo working. I have learnt the hard way that just because it worked once, does not mean it will continue to work. The one thing we know for sure, is this chemo will stop working at some point, so it’s something of an understatement to say that I dread the wait and I dread the results.

Early this week, The Prof’s secretary called me to let me know that the planned clinic wasn’t going ahead and I would have to wait until the end of the week to get the results. I begged and pleaded not to wait. I suggested I see somebody else, that they email me the report, and other non-protocol options, because, as I explained, I would have completely lost the plot if I had to wait. A few moments later, The Prof sent me a WhatsApp letting me know the results. And I quote “Your recent scan is all lovely and stable…” there were some other words but I couldn’t see them through the tears. It’s worth noting that The Prof did not need to go out of his way to send that message, but he did because he cares enough to not put me through the torture of not knowing for four more days. A bit later on I saw the full MRI report and it’s better than any I have read in a long time. The radiotherapy in November and the chemo have both done their job. Stable is the best thing we can hope for at this stage, so this is really just the best news. For those who are fans of detail and like to google medical terminology (and who doesn’t) this is the final statement on the report “The bony metastatic disease is regarded stable overall. Regenerative nodular hyperplasia within the liver, showing slight improved appearances. Against the extensive background, the true extent of active disease is difficult to ascertain. On the whole, the appearances have not worsened. No new sites of metastases.”

I sent the full report to my sister who pointed out that it also stated “The contralateral left breast is unremarkable” – we both agreed that was kinda rude.

So I continue onwards to chemo number seven, and we hope hope hope that it continues to fight the fight and that the rest of me can continue to tolerate the treatment to an acceptable level. Fingers crossed.

Not too long ago, I wrote that I would stop talking about hair. I would however like to update on a very strange thing that is happening. About a month ago I noticed some tiny lumps on my head. I thought maybe it was a rash. Then I thought maybe it was raised hair follicles. Sure enough, within a week I had the tiniest tufts of fluff appearing on my head. I also noticed really fluffy white hairs appearing over my recently micro bladed eyebrows. I now have a pretty extensive head of stubble. It’s strange, but not unheard of, that my hair is fighting back whilst still on treatment. It may be that it will fall again, either this chemo cycle or the next. But for now, it’s a welcome break from the routine and is very strokeable!

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I have been trying to keep busy with walking and self care. There have been a few trips to the cinema and last week I had a session of reiki at the hospice. I hope to be able to have a few more. I can’t profess to understand it, but I know that I felt super relaxed and calm afterwards. In an MRI week, that was quite the achievement. The wonderful volunteer that provided it told me I have “awesome energy” so I will take that any day. I am starting a new course of yoga this week at the hospice too, so I’m really looking forward to that.

I am planning to make the most of the short window between fantastic news and getting back on the chemo treadmill. You will find me somewhere between a piece of cake and a chilled rosé.

Have you checked yourself lately, or asked somebody else if they have?

Get friendly and have a Friday feel…

tlc

Big Love, AG xx


This is a great tune, and if you haven’t heard it, I urge you to give it a listen:

Haim : Hallelujah

I met two angels but they were in disguise
Took one look to realize
Tell ’em anything and they will sympathize
These arms hold me tight
Old fears, helped to ease them in my mind
New tears say that they will dry in time
Why me? How’d I get this hallelujah?
Hallelujah
Laughing together like our thoughts are harmonized
Been that way since ’95
Give me direction when it is hard to fight
Three roads, one light
Now and then I can lean my back to yours
Travelin’ like our feet don’t touch the floor
Why me? How’d I get this hallelujah?
Hallelujah, hallelujah
Why me? How’d I get this hallelujah?
I had a best friend but she has come to pass
One I wish I could see now
You always remind me…

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