If these are life’s lessons, she’ll take this test. She needs wide open spaces…

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Friday night quiz: Midsummer

I find myself breaking with tradition again and not writing in accordance with my three weekly schedule.  I started writing a blog this morning and then realised that it wasn’t due, and then figured, if I felt the need to write, then so be it. It has been only two weeks since my last blog, but it seems quite a lot has happened, so here I am.

I wrote last time about the results of the previous MRI and how devastating it was that the disease was progressing.  It really seemed to touch a nerve and I received a great deal of messages from people showing me their support and asking me not to give up.  I can assure everybody that I don’t plan to give up.  But that is getting a little bit harder every day. I wonder whether my determination to live well with cancer, and focusing on that in these posts, has given people a little more optimism than I intended.

Thank you so much to everybody that reached out to me in the last two weeks to check up on me, and also my family.  Please know that I am enormously grateful. It’s been quite overwhelming the number of questions and contacts from friends old and new, so apologies for those days when I don’t have the energy to respond to everybody.

We are approaching the summer solstice this weekend and these events always make me feel the ticking of the clock.  Time continues to march ahead. We are half way through the year and it feels like much is changing.

Last time I wrote, I was in the midst of attempting to control the pain through various means of pain relief.  I have actually slightly lost track of how many different painkillers I have tried.  Doses and regimes have been adjusted to find a balance between not making me suffer the side effects too badly and actually having some impact.  I have been ridiculously naive to how difficult this is.   There have been quite a few sleepless nights and a lot of vomiting. I can’t recommend it. I am now on paracetamol, naproxen and oxypro with occasional sips of oxycodone.  The balance is not quite there yet, but it’s better.  I have also treated myself to a TENS machine so when all else fails, I plug myself in and get zapped.  I’m not fully understanding the technology, it has something to do with jangling the pain pathways so they don’t reach your brain. It seems to give me some relief, so I don’t really care how it does it.

I started the radiotherapy to pelvis and lumbar spine last week. I had 10 sessions over 5 days, finishing middle of this week.  I was somewhat blasé about this, as I had done so much before, but it took me a bit by surprise. An hour after the first session I started violently vomitting and there has only been occasional respite from this since.  It seems the radiotherapy has clipped my gastric tract somewhere along the way and it’s causing a great deal of sensitity to food. Well anything I consume, which obviously makes digesting pain killers all the more difficult.  Otherwise, the sessions went well.  The treatment itself is always short and uneventful.  I am looked after so wonderfully by the team at the radiotherapy centre.

The scan picture here shows how the radiotherapy is planned and the area of spine and pelvis these treatments were targeting.

Half way through the radiotherapy I went to discuss my decision about chemotherapy with the chemo nurses.  We talked about the risks, and side effects and what the cycles of the new proposed drug would look like.  I decided, eventually, to go ahead.  If I don’t try it, the outcome is certain, if I do try it, at least I give us a chance of it having some impact. However, I will only continue if I can tolerate it to a point where I am able to maintain some quality of life. If I can’t enjoy anything and barely get out of bed, then I will stop.  We agreed that I would have a two week break to recover from the radiotherapy and then get going with the treatment in early July.

My bloods were checked that day, whilst I was at the cancer centre.  Partly because they are taken fairly routinely but also because we had talked a lot about the fatigue and nausea I was suffering. So we agreed it would be best to get checked.  The next day I was told that The Prof was going to call me.  Immediately the alarm bells started ringing because this is not a man who calls me to talk about the weather.  The blood showed that some of the markers for my liver function are seriously bad and have deteriorated rapidly. In some ways this shouldn’t be surprising, it’s a long time since February and that was when there was last some stability in the tumours.  He was aware that I had planned to take a two week break between ending radio and starting chemo.  He also knew that I planned to use this window to spend some more time in Wales with my family.  He explained to me that if I wait two weeks to start the chemo it might be too late. My liver has to be functioning to a certain point for him to agree to administer the chemo.  Initially we went around in a few circles with him trying to tell me it was important to spend time with my family whilst I tackled the concept that if I took that time, it could jeopardise my treatment altogether.  We agreed it was probably possible to do both. This will mean that there will be no respite between radio and chemo and I will start a new chemo on Monday.  I will be starting Taxol, which is  a lower dose drug that is administered every week.  As the dose is lower, my chances of tolerating it are improved.  However, the list of possible side effects is about the same; hair, nausea, fatigue, neutropenia, low haemoglobin, allergic reaction, neuropathy… and so on.  As always, until I start there is no knowing what effect it will have. So on Monday I will be back at the cancer centre beginning the new treatment, this will mean cold-cap, sedatives lots and lots of peripheral medication which includes the dreaded steroids. I have begged and pleaded to avoid the dexamethasone (sound familiar?) but due to the risk of anaphylactic shock with this particular chemo, I am not allowed.

As always starting a new treatment comes with a lot of trepidation about how it will make me feel and what it will do. It must though, come with some optimism and that greatest healer of all; hope.

My body will have no time to recover from the radiotherapy before I start.  So far the pain, vomiting and exhaustion have continued.  Right now I can not really imagine how it will feel to put chemo on top of that. We shall see.  The good news though is that immediately after I will be transported by angelic chauffeurs to the homestead where I will recover and be looked after by GozFam. This time the full quota. For that, I cannot wait.

Whilst I have not had the time or energy for much else, there has been plenty to keep me distracted.

My fabulous sister dropped everything in the midst of my radiotherapy, when I was feeling particularly terrible, to come and see me in one my best girl’s gardens.  Because even when you are in this unthinkable situation, Covid guidelines must be maintained.  I haven’t seen my sis since early March and it has been really, really, difficult, like it is for so many to be separated during these last few months.  No hugs of course, but my goodness it was good to see her. Thank you SP.

I also wrote another article about treatment during Covid for a secondary cancer charity, please take a look at their site here

Very excitingly, just after the last blog post the views went over 20,000.  Thank you for continuing to help me spread the word.

I finally managed to finish planting my summer pots.

I mentioned at the beginning that the last blog seemed to trigger a lot of contact.  This has been borne out by almost daily door step deliveries.  I am a lucky girl to have so many generous and supportive people in my life. Thank you all.

Please keep your positive vibes coming over the next few weeks.  My liver and I need all the help we can get.

Stay safe. Feel your boobs and bits.

Big Love, AG xx


Wide Open Spaces  :  Dixie Chicks (Susan Gibson)

Who doesn’t know what I’m talking about
Who’s never left home, who’s never struck out
To find a dream and a life of their own
A place in the clouds, a foundation of stone
Many precede and many will follow
A young girl’s dreams no longer hollow
It takes the shape of a place out west
But what it holds for her, she hasn’t yet guessed
She needs wide open spaces
Room to make her big mistakes
She needs new faces
She knows the high stakes
She traveled this road as a child
Wide eyed and grinning, she never tired
But now she won’t be coming back with the rest
If these are life’s lessons, she’ll take this test
She needs wide open spaces
Room to make her big mistakes
She needs new faces
She knows the high stakes
She knows the high stakes
As her folks drive away, her dad yells, “Check the oil!”
Mom stares out the window and says, “I’m leaving my girl”
She said, “It didn’t seem like that long ago”
When she stood there and let her own folks know
She needed wide open spaces
Room to make her big mistakes
She needs new faces
She knows the high stakes
She knows the high stakes
She knows the highest stakes

 

 

 

 

 

 

6 thoughts on “If these are life’s lessons, she’ll take this test. She needs wide open spaces…

  1. Hi Abigail. Just don’t know how you do it . Can’t begin to know what you are going through just wish you didn’t have to . My love and thoughtS are with you as always .And keeping everything crossed . Much love. Sue.L xxx

    Liked by 1 person

  2. Continue on with the positive thinking – I used my own mantra to relax my mind ‘ love, hope, faith and trust’ then as the chemo went in, i visualized the drug killing the cancer cells. I did this by visualising a shooting gallery at a fair but instead of ducks, it was cancer cells been blasted with my gun. I also visualized ” pacman” computer game – pacman gobbling up the cancer cells. Positive visualization is important and helps outcome.
    Good luck Abigail xx

    Like

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