“Wake up, wake up, mums tubes blocked”. A 7 am morning wake up call, on what was suppoded to be a lie in Sunday. This wake up call is a regular theme. I sometimes think its too good to be true to have a lie in after a toughs week work.
My mum has end stage, not operable and unresponsive to chemotherapy gastrointestinal stromal tumour(Gist to be short). This is a nasty, horrible canc….. The ‘C’ word still sends shivers down my spine. I can’t say it.
The big c has caused a hole in her stomach and her stomach to fuse with her tummy so everything she eats comes out in the hole in her tummy. We were worried one day when her breakfast started to come out of her tummy; she has a feeding tube through her nose which bypasses the hole and gives her a foul smelling paste food through the tube.
My Mum is 49. She is an ordinary woman. She lived the life of a middle age women whose kids have grown up. Shopping, gossiping, tea parties, dinners and late evenings out. If a new fashion was out, she’d know about it. If anyone had fallen out on the block, she’d be the first to hear it. We use to tease mum that she is never home; she blushed when we teased her and wondered what she is really up to. Now she never goes out. Its not that she doesn’t want to, its just she can’t. She’s trapped; trapped by an incurable disease.
My mums woes all started 6 years ago, were she had surgery for a mass on her stomach. She told us all that it was nothing, just a little hernia. We forgot about it. Over the next 5 years she would get occasional migraines, sore feet, sore lips, unbearable pain in her tummy, her skin would go bronze coloured. We questioned her about this’ she told us it was down to the menopause, a woman’s bodies changing she told us. I was away at university, and if I came back for the weekend I’d never be at home
Last December she was getting a lot worse. She was still doing her usual things but her symptoms were more regular. Repetitive vomiting, unbearable headaches. Unable to move. Then on one Christmas Eve, something happened which changed everything. I found some chemotherapy tablets. I was shocked, heartbroken, distraught. All these years she had can….(I still can’t say it). It explained everything. All her symptoms; the vomiting, the headaches…
She had spent the past 7 years hiding it form us. Suffering alone. Just to protect us. We were going through GCSE’s, A-Levels, university exams- she did not want anything to distract us from reaching our goals, from goals which would make her proud and give her a sense of achievement.
Over the next few months she ws getting a lot worse. She still had not officially told us that she had ‘c’, but we all knew. It was probably better that we did not. I got all my information from her old medical letters. She had GIST diagnosed the first time she had surgery. She had most of it removed, apart from a small bit which they were not able to get to. She was on chemotherapy over the 6 years which stopped the small bit from growing. This gave her all her nasty side effects. However after a while, the chemo stopped working. She had regular 2-3 monthly scans at thr Royal Marsden hospital in London to make sure it was not growming. She had been going up to London for 6 years and none of us had realised. We thought mum had gone out for the day…
At February, she was told that without surgery she had 2 months to live- the cancer had spread and she had to have a few of her organs removed ( I got this from a letter, I still had not spoken to her about it).
She had emergency surgery in a expert hospital to remove the tumour, by one of the best surgeons in Europe. The surgery was meant to last 12 hours- she was out after two. They did not go ahead with the operation as the cancer had spread too far and operating would not change anything.
The excitement of seeing her come out the operating theatre was drowned with the realisation that this was it There was no other cure. This horrible GIST was going to kill her. My whole life had changed.
I was in the final year at university, which was near her hospital. So I would make the train journey there ever day to see her. We did not speak about her diagnosis, why she never told us, how long she had got left. You did not need to say it to express what we both were feeling. I could see it in her eyes, ands he could see it in the tears that creeped down my face.
It almost became an occupation, the morning journey to the hospital, make sure she got her food. Be there fro her. Hold her hand, stroke her hair while she slept. Walk her to the toilet. I wasn’t there for the last 6 years were she had suffered alone. I was to busy with my own life, relationships, revising day and night to complete a difficult degree in Medicine.
But those times in the hospital gave me warmth. I was there when she most needed me. She knew she was not alone. I gave up the most of the last few months at university to spend time with her. I felt guilty on days were I could not go see her. All though she would have other family members see her, me not being there made feel I was letting her down. Sometimes I would purposely not go. I couldn’t bare seeing her in pain, suffering
She stayed in the hospital for 2 months, during which she developed a hole in he stomach. This was probably the hardest thing to take- she could never have a proper meal again. A fantastic cook she once was.
They sent her home with a feeding tube and we learnt how to take care of her at home. My sisters take care of her during the day, in-between there respective school and university times. When they are not here, she has a strong group of friends and relatives who regularly visit her and look after her. Do the things that she can no longer do, wash her clothes, cook meals for her children?
Since she left hospital, she has had a dozen admissions in hospital for blood transfusions, replacement of her feeding tube. This Christmas she went to hospital and the doctor took me to one side and told me that your mum’s life is coming towards the end and we should think about a hospice. My mum was not to keen on this. Despite how extensive the tumour has grown and how incurable it seems, she still believes there is a cure. She believes in God and prays everyday for him to cure her. She is 49, she still has me and my two younger sisters who live with her and have not grown up. She loves life.
10 months after being told she only has two months left, she fights on. We fight on. . My mum has a inner strength that goes beyond words. I’ve only ever seen her cry once in the past year. Most of the time she is consoling us, her braveness goes beyond anything I’ve ever seen.
She’s not left the house since her illness. She’s lost 8 stone of body weight in 1 year. She is mere 6 stone. She finds if difficult to walk to the toilet, but she struggles and gets through. She spends most of her time in bed, she can mange to sit up for half an hour at most per day. She is continuously in pain. Most of the time she is groaning in pain, wincing and trying to get comfortable with it. She isn’t able to talk to you because of the pain. She has 1 good day in 7. A good day is when she can talk to you about your day for about 10 minutes, and have a go at you like most mothers would do. Tell you off for not having breakfast, for not looking smart, or for cutting your hair to short. That’s when I remember my mum, who she is, and when I know all this suffering she gets through is worthwhile. She says she is grateful to god that she can even be in this position, that she can still see her children and talk to them occasionally.
Sometimes I wonder if were being selfish by encouraging her to carry on. Deep down we know what is best for. The district nurse who comes every day says we should think about end of life care. When I see her suffer in pain, I wish occasionally that she could be taken from us, but when the reality of it beckons, like the hospice situation, I cant bear it, the thought of her not being there is to much to take.
In my new career as a doctor, I see my mum in everyone of the patients. I see the lonely faces, the terminal diagnosis, the unbearable pain and fight for life. I sometimes work extra hours, come in on my day off, so I can escape, and not think about the reality of my life. The hospital, with its fast moving pace is perfect for that.. You don’t have time to ponder on a personal sadness, you have patients and people to worry about it.
On the weekends I’m off it’s my duty to care for her. She doesn’t need 24 hr care, but she needs regular attention Someone to get her some water, to give her tablets, take her to the loo. It stifles what I can do; when my old university friends want to go away for the weekends, or meet up I have to decline the offer because I have to look after mum. Sometimes I have to come home in the evening so I can be there for her, sometimes meaning leaving early from socials. I tell them some reason, make up a different excuse, I see them mutter something under there breath, little do they know. Sometimes I wake up in the middle of the night in a panic when for a second it hits me what has happened to her. She was well and fully active a year ago.
It’s not all doom and gloom. As the months have gone on, you find happiness and joy in new things. I feel so proud when I see her walk a bit, or when she sits up for more than 10 minutes, or when she asks about my day, my patients. I like it when she has a go at me and tells me of; that’s when I know my mum is truly around.
There’s no better feeling when her tube gets unblocked after a 10 hr onslaught on the poor tube. And most of all it’s brought divided friends, relatives and even siblings together.
One of my Consultant says’ no matter what speciality you go in, inevitably you will lose your patient’. The end game is finite. I’ve realised that. For some that end is near, for others it’s many years away. But after my experience with my mum and seeing her struggle and suffer, I appreciate that her end is very near. But I know that in my short life I’ve been lucky enough to have loved and been loved by someone whose so special. Not everyone gets that opportunity. And as my mum would say,’ for that I’m grateful’.
