From a distance my choice is simple

Audio version: Here

Somehow or other, the sixth month of the year is here. June. Up there with my favourites. Blue skies, green fields, bright, light evenings, the realisation that the hibernation is over. Peonies, sunflowers. Chilled rosé on a warm afternoon. That of course would be a normal June. It seems 2020 is intent on reminding us that we are not in charge of our own destiny. And whilst the sun has been shining, we can still drink rosé and my flat is full of peonies, it’s just not quite the same, is it?

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It seems incredible to me that time continues to fly, even in these weird circumstances. How is it possible that the longest day and shortest night will be here within a matter of a fortnight?

Last time I wrote I was in Wales enjoying some much needed time, albeit lockdown time, with my parents.  I don’t think I have known a May like it and I spent just about every day for three weeks outside. I also brushed my hair for the first time since September!

In a beautiful small coastal community it sometimes felt like time had stopped. I was suspended in a cancer treatment free bubble and felt protected from the world and it’s ever increasing troubles.  I went for days without listening to the news and whilst I’m not normally one to apply the blinkers and pretend that everything is OK, this felt like the right thing to do to give my brain some space and rest. The suspension of reality had to come to an end eventually and I returned home in time for treatment.  Not before I had lots of lamb hugs and the gorgeous members of the community I inhabited for a few weeks told me how pleased they were to see me and asked me to come back as soon as possible.  Their kindness and generosity of spirit fills my soul.

Despite the escape from treatment, whilst I was away I was continuing to experience increased pain in my lower back and pelvis.  As I am in regular contact with the hospice, my concerns were raised with one of the palliative specialist Doctors there. We agreed that the patches I had been using to manage pain were not helping and she was able to contact my GP and get a prescription for stronger anti-inflammatories. There was also some concern about spinal cord compression.  This is a risk for anybody with tumours in their spine. There is a chance that the tumours will start to put pressure on the spinal cord itself and with that comes significant problems with neurological function.

Treatment day arrived and I set off to the cancer centre for my Fazlodex and Denosumab injections. The treatment and port flush were relatively uneventful, although painful. Whilst there we discussed my pain symptoms and The Prof was consulted.  It was decided that I would be fast tracked for my next MRI.  It was due around this treatment cycle anyway and it was agreed the sooner they checked what was going on, the better.  24 hours later I was back at the hell hole in Mount Vernon hospital.

I had mentioned to the nurses at the cancer centre that I was concerned about being able to get through the MRI at all.  In the past the problem has been anxiety and claustrophobia, I have not enjoyed being strapped down to a metal sheet and sent into a tunnel, unable to move, for an hour and fifteen minutes.  This time, my concern was pain.  I can’t lay on a mattress on my back for ten minutes without the pain being unbearable.  Their suggestion was to double the pain medication, add in a sedative and also take an opiate painkiller right before the scan.  That might sound like some people’s idea of fun, but I was somewhat off my head. The nurses at the MRI unit looked after me wonderfully.  They reassured me that I could take a break and wriggle and wiggle when I was given permission, for the rest of it, as always, it’s a question of not moving a muscle.  Despite all the meds, there was still some pain, so I did take a break after the 30 minute spinal scan.  Eventually I made it to the end, and was so relieved.  As soon as I stood up to leave I thought I was going to pass out and be sick.  The passing out never happened but the vomiting started once I made it home and went on for some time.  Pain relief and sedation does not come without it’s down sides.

Despite taking Oramorph (morphine based opioid) previously, the dose on scan day and subsequently have proved that it really doesn’t agree with me.  I started taking anti-nausea tablets as well and they really have not helped. So it’s back to the drawing board for pain relief.  Meanwhile, it’s increasingly hideous and difficult to sleep.  I have been relatively lucky so far to not suffer too much from pain.  It turns out I am not very good at handling it.  I have never experienced anything that can’t be helped by knocking back some pain killers and spending an hour on the sofa with a good book.  The relentlessness of the nagging, continuous, chronic pain is an insight that I never wanted to have.  I have huge respect for anybody that deals with pain on an ongoing basis.

The scan was late Friday and as night follows day, Monday evening I was summoned in to see The Prof.  I got my new hospital outfit on (gloves, mask etc), I arrived and he called me sausage and I knew straight away I was in trouble. The disease is progressing and the Fazlodex has been next to useless. There is tumour development in liver and bones which is as bad as it gets.  The pain in the pelvis is coming from disease spreading across pelvis, sacrum, hips and lower spine. Worse, the liver has deteriorated and, as I’ve pointed out before, but I will repeat, I can’t live without a functioning liver.

It’s devastating.  Each time a treatment fails or doesn’t do what you hope it would do, another door closes.  Another step is taken towards the inevitable outcome. It has happened many times over the last three years but each time is another step up the ladder from which there is no way down. It gets harder every time and each time a little bit of hope is extinguished it gets more and more difficult to accept. I have never pretended that there is a way out of this disease for me but stability is the only thing keeping me here. We haven’t seen that stability since the IV chemo failed and the reality slaps are really starting to sting.

The Prof and I discussed how we get the pain under control as a priority.  He set me up with an appointment to see my other oncologist, he who specialises in radiotherapy.  I will also seek help from the palliative care team at the Hospice and the pain specialists at the cancer centre to try to get the pain management under control.

I feel The Prof gets nearly all of my attention in my writing.  I need to make clear that my “other oncologist” is also a super human and special person. I have been to see him this week and as always he looked me in the eye and asked me how I was feeling. He is always so kind, and positive and, now that we have had many, many discussions knows I need detail.  He makes a point of talking to me before looking at the images so he is listening to what I am telling him rather than interpreting the scan without hearing my voice. This is particularly important, in my case my MRI report details deterioration on the left, but in fact my pain is almost entirely on the right.

We agreed that he will treat the right side of my pelvis and also lower spine.  We hope that this will put a stop to the pain.  Historically my bone mets have responded well to radiotherapy, so far I have had multiple sessions on neck, sternum, hip, T and L spine and of course originally the boob.  This time around it will be five sessions covering two sites, so ten treatments over five consecutive days.  This will be tiring, the skin may get aggravated, but otherwise the benefits should far outweigh the short term side effects. I will have a CT scan to enable the planning and then hopefully begin the treatment late next week.

Whilst with The Prof we agreed that there was no point continuing with Fazlodex. I will continue with the Denosumab bone therapy injections and daily calcium tablets but until the radiotherapy is finished, I will not have any tumour targeted treatment.  We had quite a difficult and philosophical conversation about what will happen after that.  Now that the original IV chemotherapy has failed, and I have exhausted all other options, there is really very little choice available.  He pushed me to think about whether I want to suffer any more treatment at all.  As I said before, my liver won’t survive very long without finding some stability.  I virtually begged him to come up with an alternative, in fact I asked him to find some magic.  There isn’t any, of course.  There is an option to try another IV chemotherapy, which may or may not be effective and may or may not give me all the horrendous side effects that I suffered over the last six months.  I don’t yet have the answer as to which of these terrible options will be my choice.  The good news though is that it is my choice.  The other good news is that my spinal cord is fine, no sign of cord compression.

In some blogs I get to brush over the treatment as not much is happening and spend more time writing about all the fun stuff I have been doing.  This is not one of those blogs.  Between, travelling, treatment, pain and being floored by bad news, it doesn’t feel like very much else has happened.

However, I have been able to take advantage of the change in lockdown conditions and have had a few outdoor distanced meets ups.  One of these was one of my best girls birthdays.  Is it my imagination or have there been an awful lot of lockdown birthdays recently?! I have been trying to organise my summer planting on the balcony, although this is harder than you might imagine when you don’t want to go to shops. I continue to take advantage of the Hospice zoom meetings doing yoga and physiotherapy.  All of this has provided the perfect balance to what has been one of the very worst of weeks.

I have been really lucky to receive lots of flowers again recently.  There has been a plethora of peonies and I am so grateful for these.  They raise a smile every single time I look at them.

 

Huge thanks to everybody who reached out to me this week and has helped pick up the pieces.  You know who you are. I am already feeling better and more positive than I was at the beginning of the week. I will put on my big girl pants, turn my face to the sun and get the hell on with the radiotherapy.  Let’s see what happens by the end of the month.  I have to celebrate getting another year older after all!

Big Love, AG xx


Emeli Sandé : Clown

I guess it’s funnier from where you’re standing
‘Cause from over here I miss the joke
Clear the way for my crash landing
I’ve done it again
Another number for your notes
I’d be smiling if I wasn’t so desperate
I’d be patient if I had the time
I could stop and answer all of your questions
As soon as I find out
How I can move from the back of the line
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circle
I’m selling out tonight
I’d be less angry if it was my decision
And the money was just rolling in
If I had more than my ambition
I’ll have time for please
I’ll have time for thank you
As soon as I win
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circus
I’m selling out tonight
From a distance my choice is simple
From a distance I can entertain
So you can see me
I put makeup on my face
But there’s no way you can feel it
From so far away
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circles
I’m selling out tonight

 

2 thoughts on “From a distance my choice is simple

  1. Hi Abigail, I’m so sorry to hear your news. Thankfully it sounds like you have a really good and caring team around you, who really want to get it as right as they can for you. The radiotherapy does sound like it could help with the pain, definitely well worth going for. I have never experienced chronic pain like you describe, it must be horrendous, so anything that can help must be worth it. I must say that I really admire your positivity and resilience, your ability to bounce back, and your strength. It’s a wonderful thing to be able to appreciate and draw peace and strength from nature, from families and from friends, you really seem to have that ability.
    I went down to Surrey recently, where I used to live and work nearly forty years ago. It’s a good halfway point to meet up with Steph. I knew that particular area was really beautiful, but I’d forgotten how beautiful. It really does make you feel good. So keep hold of that very precious ability you have.
    By the way Steph sends her love.
    All good wishes. Stay positive.
    Love
    Marion xx

    Like

    1. Thank you Marion. Your words are really kind and have definitely lifted me today.

      I am definitely doing my best to keep my head up and stay sane! Surrey is indeed beautiful, I am glad you got to meet up there and enjoy some space.
      Love to all xx A

      Like

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