The blog I never wanted to write: Stage 4 Breast Cancer

keep-calm-and-put-the-kettle-on

Despite having no breasts I have stage 4 metastatic breast cancer. It has spread to my lungs, the lymph nodes in my chest, and my brain. I have multiple tumours.
I last finished active treatment in September 2016 ; the lung tumours were found two and a half years later in March 2019. My work colleagues noticed my breathlessness and prompted me to go to the doctor. I told him that I had asthma and needed an inhaler. I have never had asthma before. I refused to go to A and E. It is possible that I am a difficult patient but my GP knows me well and works with my quirks. I consented to an x-ray of my lungs which he thought sounded ropy (my peak flow was more typical of a 40-fags-a-day addict than a non-smoker). The next morning he phoned and told me that my x-ray was giving him concern and I needed to be admitted to hospital. He had arranged this. No need to go through brutal A and E.
“I can’t go to hospital,” I insisted. “I’m throwing a party for my sister’s 60th birthday on Sunday. I’m doing all the food and making the cake and hosting.”
We had a little argument about that. Since my second mastectomy in January 2017 I had resolutely avoided hospitals and doctors, reluctantly attending my follow up appointments with the oncologist, keeping my head down, trying not to breathe in the hospital smells, trying to be a normal person who is so much more interesting and busy with non-cancer stuff. Trying to move on from cancer. My experience of hospitals is that
– Once they get their hands on me they keep me in
– There’s never any good news
– Worst of all……I become a patient, a problem to be solved
In the end I caved. The party was postponed. Instead of having a party my excellent big sister and the rest of the family spent days travelling to and from hospitals in Coventry and then St Cross in Rugby. I held out for pneumonia of something simple that could be treated. Maybe some weird lung infection from a rogue mosquito lost in Krakow in November where Other Half and I had holidayed.
My brother was with me for the results. A CT scan confirmed the diagnosis of lung mets and my world rocked. An appalling bronchoscopy (waterboarding anyone?) identified the cancer as HER2+ breast cancer. A rogue cell had remained in my body from 2016 and had been up to no good.
A week before hooking up with my oncologist I started getting intense pain in my head when I coughed or moved my head suddenly. When I mentioned this to Prof everything became a bit scary. An urgent CT scan was arranged and there on the screen a couple of hours later were brain tumours. Prof explained that this changed everything. With the lung mets we had been talking about doing some chemo and getting a few years. That seemed bad enough. Readers of previous blogs will understand exactly how much I never want to do chemo again. But things were about to get worse: these brain tumours changed my prognosis drastically. I had a MRI scan the next day and this showed more and bigger tumours. I told you….there’s never any good news for me in hospitals. They are seriously bad for my health.
Brain tumours do not respond to chemo. The clever brain puts up a barrier which chemo cannot cross. Instead brain tumours can be treated in all kinds of sophisticated ways these days, notably through the cyberknife radiotherapy method. However, if you have multiple whopping tumours snaking through your brain then the experts at Queen Elizabeth Hospital in Birmingham won’t accept you for cyberknife. Instead you are offered the radiotherapy equivalent of a sledgehammer to your skull- whole brain radiotherapy. This blasts your whole brain with radiation in the attempt to reduce swelling and pain and give patients a better quality of life for as long as possible. In the short term it causes fatigue, irritability, hair loss, skin burning and a temporary increase in pain as the brain swells. It leaves patients with cognitive issues (e.g.inability to concentrate, forgetfulness) that worsen over time. Since candidates don’t have much time this is felt to be worth the risk. The pain I experienced in my brain is unbearable so I am willing to do it. This starts tomorrow. I have had a mask prepared. This will be used to bolt me to the table during treatment. It is very tight – I cannot open my eyes or mouth and have to concentrate very hard on going to my happy place. I am good at this. No panic here. All is calm.

mask
In the meantime other fun treatments have been available. Massive doses of steroids have swelled my face, neck, upper belly and ankles like a toad, weakened my muscles and given me gut issues. My cheeks are so fat that my glasses rest on my face, not on my nose. I am guzzling gastro-resistant tablets and immodium in bucket loads and longing again for a poo with edges. The steroids have improved my breathing and brain pain massively so they are worth it.
I am also back on chemo ward every three weeks having Herceptin and Perjeta infusions for the lung tumours. These are immunotherapy drugs designed to slow the growth of the HER2+ cancer by blocking off receptors. Main side effects so far….fatigue, more diarrhoea, numb feet and legs , dry mouth. I should be having paclitaxel but I would have to do it for six months to get any benefit and none of us want me to be put through six months of that when I may not have six months.
I have a DS1500 which is a magic certificate indicating that I am not long for this world. This has enabled me to get PIP and a disabled badge. My GP assures me that if I do live longer than six months no one is going to turn up at my door with a gun.
I fully intend to live longer than six months. No one is giving up here. The world is full of people living longer than the docs thought they would.

Polyanna moment:
I am surrounded by family and friends who are, once again, showing what incredible people they are. I have a veritable army of support. I have people shopping for me, cutting my grass, cleaning my chickens, giving me lifts (I am not permitted to drive anymore due to the brain tumours and bizarre visual disturbances), ironing, picking up prescriptions, just dropping in for a chat, taking me out for lunch, travelling long distances to visit me propped up on my sofa, sending me cards and presents, praying with me and for me. Yesterday wonderful colleagues from Vets4Pets did a Race for Life in my honour. I have amazing, incredible daughters who make me proud daily. My faith remains strong and my spirits are good. I know the future will bring challenges to us all but today is a good day. I feel loved. What more do I need?

Needle count
42
Hollow laugh here. My veins are still elusive and I have had a new port implanted in my chest for chemo infusions. This doesn’t help with contrast scans and I am regularly covered in bruises from being slapped around in an attempt to access a vein. I am not allowed to slap back, apparently.

13 thoughts on “The blog I never wanted to write: Stage 4 Breast Cancer

  1. Lou

    Fucking hell Ed – I’m sitting here reading this and bawling my eyes out. So fucking unfair. You are very much loved. I suspect even more than you realise. Let us come & visit. 😘😘

    Reply
  2. Angela Obrien

    Wow Edwina I am stunned to hear your very sad news. We don’t know each other that well but cancer took us on a journey we both didn’t want to undertake. I live my life now trying to put the memories of what I went through in a box and carry on with my life as if nothing happened that’s my way of coping with the dreaded thought it might come back one day but for you it sounds its been a constant struggle to put this vile disease behind you and for that I’m truly sorry. I know you will fight this with all your might take care and I will be thinking and praying for you xx

    Reply
  3. Imelda

    Dearest Edwina, you are incredible and so much loved by all those who are helping you. I wish I was nearer and could chip in to help. There are going to be some tough days ahead with the treatments you have outlined; but hang in there for the better days and enjoy them to the full. I send you enormous but gentle hugs, Imelda

    Reply
  4. Corinne

    Eddie – this is the post we all hoped we’d not have to read, but now we have and so we can stand with you as you take this next step of the journey. I hope your sense of humour will carry you through, and that treatment proves everyone wrong and we’re still hearing blogs from you for a long time to come.
    Ps if the chicks get too much ice space to rehome them or give respite 😉

    Reply
  5. clairelomax2018

    Thank you for sharing so beautifully. We have some mutual friends who shared your post.

    Life is so cruel, in fact it can be an utter bastard! Especially to the good ones, and I know you’re a good one because of a mutual friends alone.

    I lost my Mum last year to cancer, it’s unfair, cruel and unrelenting.

    Please know you’re in my thoughts, sending love to you 💕

    Reply
  6. Mary Foster

    Oh, dear Ed, I feel like I was punched in the stomach, and my heart hurts so much. I was just thinking of you the other day and saying to myself that I hadn’t seen a post from you for some time. Please know that you have my best thoughts for ongoing and upcoming treatment. I’m reaching out across the states and the pond from Seattle with huge hugs and much love!! 😘💕💫💐

    Reply
  7. Sheena Gordon

    You leave me speechless Edwina. We only met once this year with our children and had a lovely day. Life is so unfair but you are incredibly brave and upbeat I can only admire you. I send you all my strength, best wishes and hope. Love Sheena X

    Reply
  8. Jane Sladdin

    Dearest Ed, words just won’t do anything I want to say justice. Why on earth this has happened to you again is beyond belief. You are incredibly brave, as are the girls, and I know you will face this with your usual sheer-minded bloody determination, humour and bravery. I can’t even begin to imagine how on earth you must be feeling. All you need to know is everyone you know is rooting for you. Sending you humungous bucket-loads of love, prayers and thoughts. All our love Jane, Adrian, Charles and Lizzie xxxx

    Reply
  9. Sherri Bordeaux

    Dear sweet Edwina, I am saddened to read that your cancer has returned. You are in my prayers and on my heart daily. xx

    Reply
  10. Pingback: The blog I never wanted to write: Stage 4 Breast Cancer | Thoughts from a Minimalist Christian

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