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.
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.
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?
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.