Privacy, Scans and Scanxiety

 

I am in the shower with a very nice lady. We first met about ten minutes ago and she did introduce herself but I’ve forgotten her name already. My companion is fully clothed and is wearing white wellie boots. There’s a hint of the abattoir about the wellies. I am naked, of course. She seems very nice and quite relaxed but I am not. This is my first trip to the shower in the hospice. I arrived yesterday. Despite having had weeks of this kind of help at home I am still not accustomed to having company in the shower, nor help drying and dressing.
‘They don’t mind,’ friends and family assure me. ‘It’s their job.’
They’re missing the point. I mind. I know I should be grateful for the help and I am grateful, really, I am. But I am a fifty-three-year-old woman who hates being defined as a ‘fall-risk’ and who prefers to shower alone.
I have had a couple of falls at home. My home is now full of grab-rails, strategically placed around toilets, shower, stairs and steps. At home I have a nurse who helps me to get up, clean, dressed and downstairs and attempts to give me breakfast. The nurse can arrive anytime between 8.30am and 10.30am. It’s not great, lying in bed at 10.15, waiting to be ‘got up’ so I tend to just go for it around 9.30am and I manage, sort of, until my big toe gets stuck in my knickers or I drop my glasses and have to wait for her anyway, my teeth grinding. It exhausts me, getting dressed. My feet seem to have got further away from the rest of me so socks are impossible, I have to sit down for a rest after each item and I get out of breath. Help helps. Definitely.
I’m making it sound like there’s a single person but there are many and I never know who is coming. They let themselves into my home and I tense up as I hear their footsteps on the stairs. They appear at the bedroom door, always kind, always cheerful. I’m relieved to see them, yet just a bit angry about needing them and having to wait. And about having to answer the same questions again and again with different people. My life is no longer my own; everything I do, say, eat, read, drink, write, wear, make, listen to, watch, receive in the post, is subject to observation, scrutiny, comment, recording, and question by professionals and loved ones. When I walk up and down the corridors here with my wheeled walker everyone has to comment on my ‘little walk’. I have no right to a private life now that I need so much help. I can’t remember agreeing to this; it seems to have just happened. I can’t go anywhere either. My driving licence has been returned to the DVLA. I cannot jump into my car and go wherever I like. Take a moment to think about that. How would you feel? Every trip needs a partner-in-crime and proper arranging. Even in the hospice I am supposed to be accompanied when I push my wheeled walker up and down the corridor. I have a chart on the wall that says so. I ignore this and go alone.

Here in the hospice they are switched on about privacy, dignity and respect. Our rooms are as nice as they can be given the need for multiple plugs and weird beds. We are encouraged to bring in personal items such as photos. Windows in our doors can be obscured although only from the outside. It’s a long way from the six -day hospital stay I endured at the end of August (admitted through A and E with high temperature). Unlike the cancer ward, the hospice is quiet, and the comfort of patients is paramount. It’s a surprisingly cheerful place and each room has its own patio garden.  I spend hours resting, just watching the trees swaying in the wind.  The doctors here discuss my treatment with me at length and listen, properly listen, to what is coming between me and the ultimate goal which is quality of life for my remaining time on this earth. For me, this is eliminating the overwhelming nausea. They also show concern for my state of mind, for what is bothering me not just physically but also psychologically and spiritually. On arrival my confidence was at an all-time low and constant nausea, diarrhoea and fatigue had made me wary of leaving home at all. I was encouraged to come here for a treatment review by a local MacMillan nurse in Rugby and I was sceptical, even pessimistic. But I’m glad I came. The staff here at Myton Hospice in Coventry give me time. Precious time. The nurses, volunteers and all staff treat me with respect and respond to my needs very quickly. I can’t fault them. One night I talked to a nurse about dying and she answered my questions fully, understanding that this was important to me. When I apologised to her for keeping her from her work she answered ‘This is my work.’
So, what is the result of this hospice stay? Two weeks ago I was barely able to speak, taking up to twenty pills a day, including the horrible steroids, to try to address the problems in my digestive tract. Fixing them was not a simple matter of withdrawing certain drugs since the source of the problem is one of the brain tumours. This little bugger was also affecting my sense of smell making me ridiculously sensitive to odours, sending coffee drinkers to other rooms and retching rudely at the smell of perfume, deodorant or food. I was shaking like a leaf and needed the wheelchair. Two weeks later I no longer shake, I can walk up and down the corridors with the aid of a wheeled walker, I can talk, I can smile, I can type this blog, I can crochet as the shakes have gone. I am down to four drugs; the main drug is pumped straight under the skin in my belly over twenty-four hours through a syringe driver. This subcutaneous delivery has sorted out the nausea. Just like that! It took a few days to get the dose right but now I rarely experience that disgusting wave of sickness that made me so miserable. The syringe driver is in a mahoosive plastic box that I have to lug around with me and hug in bed. The plastic tube goes from the driver into a cut in my belly. Because I am special my skin reacts to the sites and goes blue and purple so they have to keep re-siting the incision. I don’t care. I’m so ridiculously happy to be free of nausea I will put up with all kinds of medical fiddling and needles (I’ve lost count of the needles).
I want you, my lovely reader, to take a deep breath and thank God, or your lucky stars or whatever for your nausea-free state. Don’t take it for granted; being nauseous is hideous. A happy digestive system is a prerequisite for true contentment. Mine is healing from all those horrible pills and I am COMFORTABLE! ‘Comfortable’ is one of those medical terms that can be annoying (like ‘sharp scratch’ as a needle is plunged into you, or ‘discomfort’ meaning pain) but I know what I mean as I curl up in my mum’s lovely dressing gown and relish my nausea-free status and pain-free gut. I am comfortable.
Numbers
Since being diagnosed with secondary breast cancer in March I have had the following:
5 GP consultations
8 consultations with oncologist
21 consultations with other doctors in hospital or hospice
1 surgery
1 bronchoscopy
8 immunotherapy sessions with Herceptin and Perjeta
1 chemotherapy session with nab-paclitaxel (discontinued after 1 session).
5 radiotherapy sessions
5 days as in-patient in UHCW in March, 6 days in August
18 days to date in the hospice but hoping for home by the end of next week
10 x-rays and scans of lungs, heart, torso and brain
1 ultrasound
About one million blood tests
Pollyanna Moment
Every scan gives rise to anxiety. We in the cancer business refer to this as ‘scanxiety’. My latest scans give reason for hope; my lung tumours are responding well to the immunotherapy except for one toe-rag which has mutated and is growing. This naughty tumour was the reason for us having a go with the chemotherapy drug nab-paclitaxel. One weekly session was enough for me and we’re not going to do that anymore. The whole brain radiotherapy which I was dreading has had a response described as ‘stunning’ by Prof. Pollyanna is very, very glad about this. It’s fabulous news and even better, the remaining tumours are small enough to be considered for the more precise ‘cyber-knife’ radiotherapy. Next week I am visiting Queen Elizabeth hospital in Birmingham to discuss this. Wouldn’t it be wonderful if the cyber-knife treatment could knock this nausea tumour on the head for a while? I keep catching myself smiling and feeling hopeful. Wouldn’t that be great? I wouldn’t have to lug the syringe driver around in a bag. I might not have to have twice daily injections either. Then I could really have some quality time with friends and family, being me, not the moaning, miserable suffering creature they’ve had to put up with. All I want is to be able to go to a café with confidence, or to visit the arboretum at Coombe Abbey, or to misbehave in my wheelchair in Debenhams. My needs are very modest. It’s not crucial to my happiness that I travel across Russia on a luxury train, or swim with dolphins, or visit New Zealand. I’m a very cheap date.

5 thoughts on “Privacy, Scans and Scanxiety

  1. James Clarke

    In pray for you Eddi and hope that your hopes are realised.
    Your bravery and frankness are inspiring.

    James Clarke (Anglesey & Almeria).

    Reply
  2. Mary Foster

    Oh, Ed, my dear, I am incredibly happy you felt well enough to write this blog so all the people who care about you are updated. It’s wonderful that the amount of meds have been decreased, and that you are feeling so much better than a couple weeks ago. It is my fervent hope and wish that you continue to be COMFORTABLE! Know that you’re in my thoughts! Love to you! 💫💐💕

    Reply
  3. Sheena

    Edwina. I am in totally in awe of you. Your bravery, is unbelievable. I have to say reading your thoughts fills me with joy and sadness. We met once and I took to you instantly and you’ve proved yourself in so many ways. I’m sending love, strength and hugs . My thoughts and very best wishes. Sheena x

    Reply
  4. Sheena

    Me again. When we spent the day with our children we had a wonderful time. The play was really funny and we laughed throughout. We had a lovely lunch before. I was a wee bit nervous to meet the Mum of
    my son’s girlfriend but we got on very well and we.could see how happy they were with each other. I love Olivia. She is very special. I wish we had all had more.times.together. Olivia tells me Will has been a great support as I knew he would. I really don’t know what else to say other than I wish the best for.you in this horrendous battle. Big hugs. Sheena a

    Reply
  5. npigott12

    Dear Eddie,

    This is a blast from your past, Neil Pigott from those days mucking about in O Level Chemistry. I found your blog from a link in Facebook and I am so sorry to see that you are on the wars on the health front.

    You have my love and prayers. You were a diamond in those schooldays and made us all laugh so hard. Your spirit was the strongest and your Blog shows that you have lost none of that wonderful energy or power with words.

    Keep doing what you like and keeping the world on its toes. You rock. You always did and do.

    Neil x

    Reply

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