Spend all your time waiting, For that second chance, For a break that would make it okay

For a reason that I am yet to fathom, I never used to like Autumn.  I know I am a summer girl at heart and maybe it’s as simple as that.  I used to get really annoyed when the clocks went back and it would be dark by tea time. In fact I still can’t say I love that very much.  I would count down the days to the winter solstice when I felt like we were on the up again. This time of year always felt like a descent towards winter, the weather deteriorates, whether it’s looking back or forward I would yearn for the long, blue, light skies of summer. All of those romantic notions are great but I realise now are actually a reflection of a really negative frame of mind.  If these last few years have taught me anything at all, I have learned how important it is to live and love the now.  There doesn’t really seem a great deal of point in wishing I am six months behind or six months ahead.  Because, guess what? The future is not guaranteed.  As much as I like to reminisce and think how great things used to be, the problem with the past is you can’t live in it.  Now, I am a big fan of Autumn.  And really what’s not to love? Halloween, bonfire night, beautiful golden yellows and oranges.  Muddy puddles, wellingtons and warm scarves. I am sure the sunsets are better in November.

The other thing about this time of year of course, is that it is the run in to Christmas, and next to June, Christmas is my very favourite time of year.  I’ve written here before about how much the festive season brings me joy and that for me, it’s not a day, it’s a period of time.  For me, it’s probably a month, and should you be a scorner of such frivolity then I make no apology what so ever.  Frankly, I am excited already.

The last day I wrote a blog, was the day I went for my 9 weekly full body MRI at Mount Vernon Hospital.  That was a Friday and I went to meet The Prof late the following Monday evening.  I had hinted that I was feeling optimistic, as much as anything probably because this chemo is my last chance saloon and the fear of it not working was something I didn’t even want to think about.  The Prof had good news, and for the first time since early this year, he was able to give me some news with a smile on his face.  The liver is responding to the EC/IV chemo.  Which means that the multiple tumours are stabilising and there are no new tumours.  I actually haven’t heard those words for a year.  I shuddered slightly as he told me and I distinctly remember a very long exhale. For the avoidance of doubt and I know I have caused confusion in the past; this does not mean I am cured.  With stage 4 cancer it is a question of delaying the inevitable by stabilising the tumours and stopping them from progressing.  In the past, it has only been a question of time before my (annoyingly swift and clever) cancer figures a way around the drugs.  But for now, we don’t think about that, and I focus very much on the fact that the risk was worth taking.  I decided to do the chemo and suffer the consequences, in the hope that it would work and by doing so, buy me time.  The Prof promised me at the beginning of the year that he would get me to Christmas, there were some days this year that I thought that might not happen.  As always, he was right, and here we are.

That’s the good news, and here’s the rest.  Whilst the liver is stabilising, the bone tumours are deteriorating.  As a reminder, I have a lot of bone tumours, also known as metastases (mets) and lesions.  They are widespread from my legs, pelvis, sacrum, through spine (L, T & C), sternum, shoulders and neck.   Up until now, the bone mets had been pretty stable.  I had radiotherapy last year to neck, sternum and hip and I have monthly bone strengthening injections, I also take daily calcium supplements in an attempt to keep the bones strong which would otherwise be weakened by the disease. The bone mets have always been less of a concern for The Prof as his job is to keep the liver going which keeps me alive.  Cancer in the bone can be lived with.  There is pain of course, but it hasn’t stopped me putting one foot in front of the other.

It is strange to me that the liver has responded to this chemo but the bones haven’t.  All tumours have different physiology and it’s up to them to decide which drugs will impact and which won’t.  For now, the pain in my spine is increasing and becoming more problematic.  We discussed what the next steps are and I will begin more radiotherapy next week.

The other concern at the moment is breathlessness.  In recent weeks I keep getting really short of breath.  He sent me off for another chest CT, ECG and cardio echo.  Everything is fine.

 

 

 

Let this not take away from the good news. The fact that my liver is OK for the time being is just brilliant.  At the end of the meeting The Prof instructed me to get some trips planned in my diary and go directly to the nearest pub.  And so I did.  I sent him this picture as evidence that I follow doctor’s orders…

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The upshot of the stability, is that I continue with the current chemotherapy.  I will do another 3 sessions and then it will be back to the MRI for another looksee.  The first of the second 3 and therefore the 4th, fell in the first week in November. My white blood cells are (just) holding up so treatment went ahead as planned.  It has been noticed that my haemoglobin levels are now also on the slide.  In June it was 130, now it’s 80 and if it gets very much lower, I may have to have a blood transfusion.  I shall worry about that if and when it happens.  This is just another side effect of chemo, and not unusual.  It probably also goes some way to explain the breathlessness, as my body is struggling to deliver oxygen where it’s needed.  I am working on some dietary changes to try to help, but asking me to eat red meat when all I can stomach is vegetable soup, has not gone terribly well so far.

Otherwise, chemo 4 has been as expected.  Complete wipe out fatigue for the first few days accompanied by permanent nagging nausea.  The chemo fog starts to lift towards the end of the first week and by the second week I really start to feel better.  My third week of feeling almost normal will now be interrupted by 10 sessions of radiotherapy over 5 days.  This sounds terrible, but it has to be done when I’m not gagging from the chemo and I want to get it completed before Christmas.  Whilst there will be some short term side effects, over all there should be significant pain relief in the spine.  Fingers crossed. That will finish just in time for chemo 5.  I have planned this all very precisely to make sure I get a clear run in to Christmas without having the chemo hangover or the risk of being neutropenic during festivus maximus.  There may be some concern that I am prioritising Christmas over treatment.  This is entirely the point.  It is very simple. My goal is to live life well, to have quality over quantity and with that there is absolutely no point in letting the treatment schedule determine my Christmas plans. I have the blessing of His Holiness The Prof.

Otherwise, the last 3 weeks have gone really quickly and seem to have been full of medical appointments, more so than usual.  It may be time to stop talking about hair and I am starting to adjust to the occasional glimpses of my pointy bald head. I saw an old friend this week. I had asked him to drop in to give me a clippers lesson.  He insisted on me removing my turban and I realised that it was really difficult for me to look people in the eye without covering my head.  I don’t have time to psychoanalyse that.  As my head was patted, and we discussed the stubbly patches on my head, I realised that I need not to be ashamed of my head.  Actually shame isn’t the right word, but it has taken quite some adjustment to get comfortable with.   It became a crash course in acceptance of “the new me” as I tried to not be embarrassed.  Later on he reminded me that whether I have hair or not, I am still me.  I think I needed to hear that.

This weekend I am going to try on some wigs.  Initially I completely refused the notion and I’m still very much undecided, but if you don’t try, you don’t know.  Watch this space.

There is something else I am quite excited about.  From next week I will be writing short articles/bloglets for the Jennifer Young / Beauty Despite Cancer website.  This is a great organisation that both supplies a wide range of beauty products for cancer patients and also trains therapists in oncology safe beauty and holistic treatments.  I am already a big fan of their products.  You can find out more about them on their website Jennifer Young; Beauty Despite Cancer.

Fun stuff and trips out and away have been increasingly compromised by a fairly hectic treatment schedule.  However, I am keeping busy and have had lots of local adventures, cuppas and lunches out. A few weekends ago I went to meet my parents in Stratford Upon Avon.  I hadn’t been previously and what a beautiful town it is.  I would like to go back when it’s not a rainy Saturday. We stayed in a really striking hotel just outside, it even had it’s own church in the spectacular grounds.  There may have been prosecco.

Between breathlessness, back ache and terrible weather, I haven’t been out walking as much I would have liked to.  However, I have managed a few strolls in the puddles and beautiful Autumnal shades.

The next few weeks are going to continue to be busy with daily radiotherapy and more blood tests, chemo and treatment.  In between, I shall remember to count my blessings; for a brilliant oncologist, a treatment that is working, learning to live in the now, and friends that remind me that I am still me.  Also… 40 days of Christmas shopping. Yay.

Please remember to stay body vigilant and keep checking your boobs and bits.

Big Love, AG xx

 

This is a wonderful song, please read the lyrics and if you don’t know it, find it and have a listen.

Angel : Sarah McLachlan

Spend all your time waiting
for that second chance
for a break that would make it okay
there's always some reason
to feel not good enough
and it's hard at the end of the day
I need some distraction
oh beautiful release
memories seep from my veins
let me be empty
and weightless and maybe
I'll find some peace tonight

in the arms of the angel
fly away from here
from this dark cold hotel room
and the endlessness that you fear
you are pulled from the wreckage
of your silent reverie
you're in the arms of the angel
may you find some comfort here

so tired of the straight line
and everywhere you turn
there's vultures and thieves at your back
and the storm keeps on twisting
you keep on building the lies
that you make up for all that you lack
it don't make no difference
escaping one last time
it's easier to believe in this sweet madness oh
this glorious sadness that brings me to my knees

in the arms of the angel
fly away from here
from this dark cold hotel room
and the endlessness that you fear
you are pulled from the wreckage
of your silent reverie
you're in the arms of the angel
may you find some comfort here
you're in the arms of the angel
may you find some comfort here