We’ll do it all, Everything, On our own

 

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Audio version available here: I’ll read it to you!

In my last blog I felt sure that a lot might happen in the following three weeks, and that it might feel like the longest three weeks we have ever known. I’m pretty sure we can agree that quite a lot has happened in the world. I’m going to disagree with myself on the second part of that prediction though, it feels like time is flying. I’m sure this isn’t the same for everybody and there are many people really feeling the constraints of the isolation.  Whether you are locked down alone or locked down with others, our world’s have turned upside down in so many ways.  Nothing we ever expected or planned for.

I know that many people are struggling with the lack of social contact, be it through work or any general human interaction.  The extroverts among you are feeling very hard done by.  In most situations, it doesn’t pay to be an introvert, but let me tell you, getting energy from peace and quiet is playing to my strengths right now. I like a hug more than most, and believe me, the first person that is allowed near enough for me to get my arms around, won’t be let go for quite some time.  I am however, quite good at being alone.  I know that rings alarm bells for some people and it seems almost unimaginable.  The view seems to be that there must be something wrong with anyone who is OK with solitude, but please believe me when I repeat, I am quite good at being alone.  I love my time with family, look forward to weekends with friends like my life depends on it. I’ve probably spent more time out for lunch, catching up in the pub, out for dinner than the average girl.  I used to get such reward from working in teams and spending multiple hours a week in offices surrounded by hundreds of people.  The joy of being an introvert is knowing you can go home and close the door.

I don’t need to be with people to feel part of a community.  I know my friends and family are around me, I feel their presence all the time. I have long been a fan of social media and could not care less about which platforms are considered “cool” at any particular point in time.  I don’t subscribe to the belief that we have to have thousands of friends or followers or likes to be validated and neither do I care for the mean, the trite or the fake.  I keep my small group of online friends close and I don’t know what I would do without them right now.

Part of  that community has become this blog. Often it feels like a safety blanket that I can pull up on a chilly evening.  Other times I suspect I am shouting in to a noisy storm and can’t be heard.  Some times I find it embarrassing and remember that I’m not generally comfortable talking about myself and this blog feels like I’m asking everybody to focus their attention on me, me, me.  But it is always, always, something I am so glad to be doing.  I’m always really pleased when I get nice comments and positive feedback but largely I just am so grateful for the space it gives me to reflect and gather my thoughts.  Last week marked the second year anniversary of when I started writing.  It was quite soon after the secondary diagnosis.  I think my blog has become my calm and quiet space that allows me to put in to words everything that it is almost impossible to say.  This is the 39th post that I have written. That’s over 50,000 words (sorry!) and over 18,000 views. This gives me life.  My objective at the start was to help people understand a bit more about cancer and to try to raise awareness and remind people to be body vigilant.  I hope I have achieved that to some extent, but if the value in this is largely the joy and purpose it gives me writing it, then I am more than happy with that.

I don’t underestimate how difficult it is to read sometimes.  I am regularly told that I make people laugh but mostly cry. It is never my intention to focus on the sad but let’s be honest, it’s impossible to avoid.  Thank you for being here.

I never really get bored and I don’t get lonely. There is a difference between alone and lonely. That doesn’t mean to say I don’t miss people, because of course I do.  Easter Sunday was a real struggle for me. I woke up and felt lonely. I really felt the fact that I had never spent an Easter away from my family.  I felt, briefly, like this was a whole heap of unfair.  I felt really sad for the me that wasn’t having the Easter I hoped to have. It felt like a cruel injustice that after everything, I had to spend a high day and holiday, by myself.  Who knows whether Easter 2021 will be a thing for me, and if it isn’t, what a cruel and terrible way for my family and me to spend Easter 2020.

In terms of treatment, last month, my chemotherapy was put on hold and I was sent to Mount Vernon for an MRI.  The original plan was that this would give The Prof the information he needed to make the decision about whether to continue with the chemo break or carry on with treatment.

In the end, as is so often the way, this decision was taken out of our hands by my cancer.  After the MRI I was summoned in to see The Prof to be told by the great man himself, that the chemo had stopped working anyway. There is progression in the liver tumours and there is, therefore, no point continuing with the treatment I was on. If the planet was somewhat differently aligned, The Prof would have recommended switching me to a different chemo, but we don’t want to take the risk of poor immunity in a world full of covid.   Instead I have started a hormonal treatment, that I haven’t tried before.  It will, if it works, stop my tumours from being able to feed on the oestrogen that supplies my cancer. It is delivered by injection, in to the buttocks.  One each side. Nothing if not glamorous.  The drug is Faslodex and you can read more about it here: Faslodex/Fulvestrant

Trips to the hospitals require protection! Covid chic:

Once I get through the ramp up dose, which is every 2 weeks for 3 doses, it is once a month, and will be delivered at the cancer centre.  I will have a few cycles before heading back to the MRI to see what impact it is having. The silver lining, if I look really hard to find it, is that for the time being, I don’t have to have chemo. So I don’t feel sick, I don’t have to eat green soup, I don’t have to go to bed for 3 days, I don’t find it hard to breathe and my blood counts should improve.  If nothing else, a chemo break will allow my bone marrow some respite and time to recover and get back to doing what it should be doing and giving me plenty of healthy blood cells.

It’s always devastating when a treatment stops working, but this is the very essence of stage 4 cancer.  At some point the cancer works it’s way around the treatment and you move on to the next, until the options run out.  Looking back at my treatment path, 6 months is usually about the time that the drugs stop working, so we probably should not have been surprised.  Normally when this happens, everybody rallies around, I get lots of visits and many, many hugs.  So it has felt much like a double whammy to have to deal with the fall out of a failed treatment without a shoulder to cry on.

Nobody would choose to go on this journey at any time, but adding isolation and the threat of a terrible virus on top of cancer, is, I think, about as bad as it gets.

I don’t know whether my ears are particularly alert to the topic, but it seems like cancer treatment during the Covid crisis has had a lot of publicity in the last weeks.  I wrote last time about how this feels very much like a rock and a hard place.  We can’t risk the treatment that puts us at greater risk of the virus, but what is the risk of not having treatment and the cancer progressing?  For many cancer patients this is the absolute nightmare. Layer upon layer of doubt and anxiety. The concerns and worry that we just about acclimatise to in our normal treatment paths, now multiplying ten fold.   It doesn’t help when documents are published giving medical practitioners guidelines that put patients with aggressive secondary cancers at the bottom of the list to be put on a ventilator, should a prioritisation need to be made. More reasons, should they be required, why I must absolutely not get the rona.

On the topic of treatment during the crisis, I nominated myself to write a guest blog for one of the breast cancer websites. You can find it here if you would like to take a look: Guest Blog

It’s been a tricky couple of weeks. One treatment failing and moving on to start another one amongst the social distancing and isolation is really the perfect shit storm.  I am, however, doing everything I can to stay sane and positive.

The sunshine has really helped so much over the last few weeks. I have been able to get out for regular walks.  My balcony pots continue to give me a lot of pleasure.  My hair has realised it’s Spring and is joining in with some regrowth.  I even have a touch of an April tan.  I have been really enjoying the new world of Zoom meetings, Houseparty, video calls and have had some hilarious evenings catching up with friends from all around the world.

 

I have also been truly spoiled with some very generous doorstep deliveries.  My nearest and dearest are regularly sending or bringing me parcels and leaving them outside my door.  This has ranged from flowers to chocolate and grocery shopping but has also included plates of food for which I am enormously grateful.  I have not been able to get used to not being allowed to do my own shopping and still cannot get a supermarket delivery.  I have found it difficult to adjust to having no option but to rely on other people.  It really doesn’t come naturally to me and I feel terrible every time I ask for help.  I will leave the psychologists amongst you to figure that one out.  I hope I am starting to get a bit better at it, but I have been a fiercely independent single girl for as long as I can remember.  There is a relevant phrase about old dogs and new tricks which comes to mind.

All the time I am reminded that this will not last forever.  Things are difficult for everybody right now, but we are in it together and with a following wind, we will be out and about soon and before we know it, this will start to feel like a bad dream.

If it’s OK for The Queen to quote Vera Lynn, then I hope it’s OK for me to quote Her Madge…. “We should take comfort that, while we may have more still to endure, better days will return: we will be with our friends again; we will be with our families again; we will meet again.”

Three weeks then.  We can do this…

Next time you are at a loss for what to do, feel your boobs and bits.

Big Love, AG xx


Chasing Cars: Snow Patrol

We’ll do it all
Everything
On our own
We don’t need
Anything
Or anyone
If I lay here
If I just lay here
Would you lie with me and just forget the world?
I don’t quite know
How to say
How I feel
Those three words
Are said too much
They’re not enough
If I lay here
If I just lay here
Would you lie with me and just forget the world?
Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life
Let’s waste time
Chasing cars
Around our heads
I need your grace
To remind me
To find my own
If I lay here
If I just lay here
Would you lie with me and just forget the world?
Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life
All that I am
All that I ever was
Is here in your perfect eyes, they’re all I can see
I don’t know where
Confused about how as well
Just know that these things will never change for us at all
If I lay here
If I just lay here
Would you lie with me and just forget the world?

 

 

 

 

 

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