Without a song or a dance what are we…?

How is it August though?

I returned from Wales on a day that it actually rained, properly, for the first time in a long time.  I can confirm that it rained all across the southern half of Britain that day.  6 long hours of rain blindness on the M4.  I think I’m still recovering. I had a truly wonderful respite from the heatwave on the coast.  My sea breeze facing bedroom window offered a welcome break from the sweaty and unpleasant nights of my top floor South West facing flat. Although, I must say, the Welsh owls are terribly noisy this year.  Have I mentioned how much fun radiotherapy roasting and hot flushes are in a heatwave?

Whilst I was in Wales I had an insight in to what it’s like being on the “other side”, being the “carer” rather than the “cared for”, the “concerned” instead of the  “concerned about”. I found out first hand what it’s like to have a loved one going through treatment.  I took my Dad to The Singleton hospital in Swansea for his simulation session prior to commencing his radiotherapy in around a months time.  I was impressed with the cancer unit, the staff were really lovely, even after the 4th failed cannulation attempt.  There’s no denying it’s grim though is there? Just insufferably bloody awful.

Back in Hertfordshire, I returned to Elstree Cancer Centre for the first time in 3 weeks.  This is, by far, the longest time I have not been poked, prodded, needled, scanned, jabbed, monitored, blah blah blah since February.  Delightful.  Although I should add, for all my complaining, it’s reassuring to have lots of medical attention and actually quite scary when I have to self-manage all the symptoms and look out for anything going wrong.  The appointment this week went well, the shite blood cells remain shite, but are holding their own at a level that allows the treatment to continue.  So this week I started the 5th cycle of implant, injection, hormonal treatment and targeted therapy all on the same day.  Finally.

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The great thing about this is that at least I know it’s doing what is it meant to.  The side effects are multiple and unpleasant, but as I have my 5th hot flush of the night I can reassure myself that it’s worth it.

Since the letter from the Prof declared the treatment was working I have had lots of messages from lovely people as pleased as I am with the news.  I want to be clear though, because I fear I may have confused people, that this does not mean I am cured.  I am very aware that a lot of people haven’t had much experience of cancer and that terminology can be confusing.  Equally, one person’s story is very different from the next, so there’s a lot to understand. Until I didn’t have a choice, my knowledge was embarrassingly limited. I know that people are desperate for a positive outcome for me, which I really appreciate.  It may be the hopefulness that lets people hear what they want to, because, and believe me I know this: the alternative is not a happy place to be.  I have always been a realist, and that is not changing now.  I am not shying away from the fact that this cancer is terminal.

For a minute I am going back to basics, if it’s not helpful to you, or you know this already, please skip to the next paragraph.  I was diagnosed with breast cancer in 2017.  It was considered at the time to be non-aggressive, had not spread through the lymph nodes.  The tumour was hormone positive, HER2 (protein) negative.  Treatment was straightforward: surgery to remove the tumour and lymph nodes followed by radiotherapy and hormone therapy.  That should be the end of the story and for many women, thankfully, it is.  At the primary stage, my cancer should have been completely curable. Instead, my cancer behaved “strangely” and whilst it hadn’t got through the lymphatic system (which is common) it had spread through my blood. The breast cancer spread to bone and liver.  The most common place that breast cancer spreads to is bone, lung, liver and brain. There are less common other sites too. Breast cancer in the bones is generally considered manageable but organs are much more of a concern for the oncologists.  What this means is I have advanced breast cancer, also known as secondary breast cancer, metastatic breast cancer, Stage 4 cancer.  It is manageable, but it is not curable.  Everything we are doing now is to control the spread, reduce the tumours where possible – but they won’t go away. There is more information here: https://www.breastcancercare.org.uk/information-support/secondary-metastatic-breast-cancer

As always, aside from the treatment I have done plenty of lovely things. Wales involved more swimming in the sea, sitting in a river, drinking prosecco in the garden, BBQs and just spending time with my Ma and Pa.  Since returning I have mostly been avoiding the heat – I had more acupuncture and as a treatment day reward I went to watch the second Mamma Mia. I laughed and I cried and it was fabulous. If you don’t love Abba, you are no friend of mine and you might not get today’s title… 😉

 

Hoping your summer includes a cool breeze.

Big Love, AG xx

#Macmillan

#breastcancercare

#herewegoagain

 

 

15 thoughts on “Without a song or a dance what are we…?

  1. Hi Abigail, as a retired nurse I understand only too well what you have been saying. I only wish I could make it all go away for you and Dad. Such a lovely family to be going through all this . That great saying .When going gets tough The tough get going . Thinking of you always. I loved the film too it’s so therapeutic Xx

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  2. Your blog makes me thankful for the music (see what I did there)…you see the positives as we all should. Stay strong and inspirational. Xx

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    1. Hi Jane.
      I went to see my surgeon 1 year after primary diagnosis for a check- up. I explained I wasn’t feeling brilliant and so he ran some standard blood tests. These showed an issue with my liver function, so I then had a liver scan which showed multiple metastasis. This was followed up by a full body bone scan, CT and MRI which showed the disease was also widespread in my skeleton.
      Hope that answers your question, all the best, Abigail.

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  3. Hi Abigail
    Sorry you are enduring this battle,this is my biggest fear at the moment.
    I too loved the film and laughed and cried!
    May I ask you how did you suspect you may have secondary bc?
    I have just managed 5 yrs hormone therapy and when I asked the doctor what I should look out for he replied lumps and bumps which didn’t fill me with confidence.
    Kind regards
    Angie

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    1. Hi Angie.
      Thanks for the message. To be honest I didn’t suspect the secondaries at all. I went for my 1st year checkup and explained I was feeling tired and achy, which were the only symptoms I had. I wasn’t particularly concerned as these, as you know, are so normal with the hormonal therapy. They ran bloods which highlighted an issue with the liver so the test started then.
      I can only suggest you listen to your body and keep pushing if you are not sure. Otherwise you have to have faith in your recovery and medical team. Hope that answers your question. All the best with your ongoing recovery x

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  4. Hi. Just found your blog, which I’ve been reading through. I was diagnosed with occult breast cancer last October and have done all the usual treatment at Harlow, Epping and North Middlesex Hospitals). It was in lots of lymph nodes but I’m hoping they cut out all the nasty little blighters. I’m now on Letrozole (I’m 53 and post menopausal but frankly the hot sweats now are ten times worse than before!!) Anyway … the reason I’m posting this is to say that my BFF (and breast cancer survivor) told me that there would be lots of ‘silver linings’ along the way. I’m finding tons of them – including all the amazing blogs like yours. Keep writing. Sending virtual hugs 🤗

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    1. Hi and thanks so much for your message, I am always grateful for hugs virtual and otherwise!
      I had tamoxifen last year and am on letrozole this year, as well as zolodex. I was pre-menopausal when diagnosed so not loving the hormonal car crash. I agree, the sweats are truly awful. I am trying acupuncture as an alternative treatment to try to fight the flushes, and whilst I’m not “cured” I do think they are better. If you are not already sick of needles, I would recommend it.
      All the best and good luck with the treatment X🙌🏻

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  5. I am totally with you – surprise left field secondary diagnosis multiple liver mets spine & lung
    It’s not what I’d have chosen for anyone but it’s done and before my Waterloo – I’m taking every chance to be a dancing queen
    Stay well x

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