November 2019 I have difficulty swallowing, which rapidly gets worse. My GP puts me on a waiting list for gastro-enterology at St George’s who give me an appointment in February. Tests follow, including three sessions in the endoscopy torture chamber. I am referred on to ENT, who say they will admit me urgently. It is now mid-March, yes, the very moment that everything is shutting down to make way for Covid19 – so no bed for Christine.
By now, I can’t swallow anything except clear liquids, my weight is falling dramatically and after months of malnutrition, I am feeling very weak.
Another month goes by.
In despair I write to my GP and all the clinicians I have seen at St G. This works. I am given an appointment with Mr Odutoye (ENT consultant) the following day 23 April. We discuss the pros and cons of being in hospital at a time like this, but I don’t really have much choice and I am admitted immediately. And here is where my story really starts.
Bed 17: 23 April – 21 May
Time passes in a blur. A nasogastric tube is fitted for feeding…more stuff is pumped in-through more tubes. They do a biopsy, CT scan and any number of Xrays and blood tests.
We will know the result in a few days.
I can barely move. I feel like Gulliver – that picture (you know the one) where the Lilliputians have tied and staked him down.
Wednesday, 29th April. The site of my biopsy is getting very swollen and sore. I think it must be infected. I feel cold…. suddenly I am shivering violently …I call a nurse. ..
Who are all these people standing round my bed?
I am moved into a side room. “We are taking you to the ICU” they say. Have I got Covid19? No. This is sepsis. I don’t remember the next two days.
Later that day Mr Odutoye phones Gwilym to say that he does not think I will last the night…or the next few days. “We can’t allow visitors”, he says “and so you might never see your mother again”
I am still here
After 5 days in the ICU and High Dependency Unit, I am back in bed 17 waiting for yet another biopsy.
Thank you, doctors, nurses .nursing assistants and paramedics for your amazing skills which are keeping me alive and for your kindness and sympathy which get me through the wobbly moments.
Gwilym comes in for the meeting with Mr Odutoye and Myuki, the specialist nurse to discuss the biopsy. It is bad news. The biopsy has revealed oesophageal cancer. This is inoperable. We discuss the options – realistically there aren’t any. I will stay in hospital until I am well enough to come home and be referred to local services in Wandsworth and to Trinity Hospice for palliative care.
I can’t quite take this in. It just doesn’t feel real. I need my knitting.
Slowly, gradually, I start to get better and two weeks later I am allowed home.
After a further three weeks, it is back to bed 17 for the final procedure. It is now mid June. I am greeted like an old friend, and everybody says how well I look. The horrible nasal feeding tube is removed and replaced by a RIG – a device which delivers everything I need directly to my stomach. This is easy to use and just needs the district nurse to check it weekly. Hooray! I can now live a “normal” life.
A good summer
It’s lovely to be home. I am surrounded by so many gorgeous flowers that my house is starting to look like a florist’s shop. The flowers are giving me so much pleasure.
My social diary is getting busier – via phone, zoom and visitors.
We have a lovely family weekend to celebrate all the birthdays that fall in July / August
I am now under the care of Trinity Hospice, where my key worker is Juliette. We get on really well and I can’t wait to meet face to face. Although I am generally well looked-after, I am not seeing an oncologist. “Leave it to me” says Juliette, and I am immediately referred to the Royal Marsden.
August Bank Holiday Sunday – a short ride in a fast machine
8.00 am. I am gasping for breath. Gwil dials 999. The ambulance arrives within minutes, with paramedics, Katie and Tanya. We grab my knitting and few other essential items, and they whisk me into Resus at Chelsea and Westminster Hospital. There is not an ENT department at C&W, so Katie and Tanya take me to Resus at Charing Cross.
Katie asks for my favourite song. Why does she want to know?
My mind goes blank, and I can only think of “Daisy, Daisy, give me your answer do” which Katie immediately finds on her I player. So here we are, hurtling through Fulham, lights flashing and sirens blazing, enjoying a good old-fashioned sing-song – and thanking my lucky stars that I have got enough breath. Bizarre.
The WG’s Top tips:
• If you are planning to stop breathing, 8.00 am on a bank holiday is probably the best time to do it.
• What is your “ambulance song” – you never know when you might be asked.
The ward is on the 10th floor. It is called E Bay. I can see Battersea from my bed. I can’t resist asking a solemn young nurse if they sell the patients to the highest bidder. She looks puzzled and then breaks into a smile “that’s funny” she says.
They pump lots of steroids and antibiotics into me, which solve the breathing problem, but upset the delicate balance of my other medication. It takes a few days for everything to settle down.
A nice junior doctor tells me that my pyjamas are cool.
Grim reality on the steps of the Royal Marsden
Here I am, on that big staircase, feeling very apprehensive. I have come straight from Charing X – wearing my pyjamas and a nice cardi, and those stripy slipper socks on my feet. I’m glad my pyjamas are cool and that Kathy is waiting for me inside. Here we go.