To put it simply, my mother is my heroine. You might be asking why and what relevance does this have to do with me suffering chronic pain?
I guess the answer to that is firstly and most rudamentally one’s mother moulds us to who we are now, that is my belief anyway and in turn that affects how we deal with things.
But at the forefront of my mind is the fact that my mother suffered with chronic pain, unnecessarily due to being let down by our local family doctor.
Now that I am in my situation with pain, how it dominates my life at time, dictates what I can do and when I can see what was happening to her.
To suffer from pain for so long, not knowing what it is, yet something so obviously wrong and the frustrations for myself in not getting anywhere in getting her local doctor do anything other than fill her full of yet more pills and do the odd basic test. Had she had an MRI, they would have noticed a tumour the size of a grapefruit resting yet pressing on her pelvis. This is why she couldn’t eat and became emaciated; this is why she eventually lost any control over her bowels. This is also why for years she had constant pain, I cannot even begin to imagine how bad it was for her. She went from having back pain to her walking ability getting worse and worse, to the point she was using a frame, then bedridden finally at the Hospice.
However, for years, getting progressively worse she had to stop going out, stop seeing friends. She lived in an isolated bungalow far away from everyone else, it was somewhere though she loved, her then husband had chosen perhaps not too wisely.
Friends would get frustrated with her, sometimes angry at her. Possibly thinking she was making it up, or just nervous or not bothering and hiding away after the death of her husband. I sometimes was guilty of that though deep down I knew that something was wrong, perhaps I didn’t want to admit it.
I remember moments when I went to visit her with my eldest child, young then as a toddler, he would leave his plastic bricks over the floor. I remember how tetchy to angry she would get at the mess. I used to just think she was being unnecessarily fussy, I mean, “what was the problem with a few scattered bricks?” Of course from her point of view, they present a huge challenge that would mean pain if she had to pick them up, or if walking upright in pain, perhaps missing one and treading on it, it was a mammoth uphill battle, every little thing and I didn’t see it. Of course I have huge moments of guilt and shame over this. It is pure ignorance of not understanding “how it is for someone else”.
She had suffered skin cancer twice, breast cancer once, the latter being a year or so before she died.
I had wanted her to live with us, searched around for properties where we could join up, still keep her independence but be close enough to keep an eye on. She was fiercely independent, plus now looking back, I think she knew she couldn’t have coped with the activity, the noise, because when you hurt these things become so much worse.
In the end she decided she would like to move in to a small bungalow right next to her best friend. I made arrangements it was all happening, things weren’t great, but we thought she would get better, whatever it was would be fixed.
We got her a carer to help out, for my mother I suppose the invasion of a stranger must have been a huge adjustment, but she took it well.
I went on holiday, upon my return urgent calls from her friends to come back to see her right now. You see I live in London, my mother Hampshire, so it wasn’t a 10 minute drive. Everything was dropped and I arrived, on my own. My mother was emaciated; it was one of those moments you want to cry, mixed with shock, almost horror, to see your once beautiful, healthy mother with grey pallor, bones sticking out from her cheekbones, a skeleton. She tried to smile, but could barely speak.
I phoned up her surgery again, in tears. Luckily for me the Partner answered, he came straight over. He said to me “your mother should have been in hospital weeks ago, I don’t know why this wasn’t sorted”. The ambulance was called, it arrived.
My mother was frightened but hid it well, she always did. In pain she was put on the stretcher, in pain put in the ambulance. It broke down in situ; the door broke and wouldn’t close. The ambulance crew said this was a known problem, yet they were still sent out. We had to wait for another one.
She was taken to the emergency unit, scanned; we got the result, a cancerous tumour the size of a grapefruit over her pelvis.
They started treating her in the hospital, her colour came back, she put on weight.
I remember the phone call telling me the news, where I was stood, which window I was looking out of, they told me she would have a year approximately. I cried, but I didn’t tell her, she didn’t ask.
We went ahead with the arrangements; I was away from my family in total for 5 weeks. I moved house for her, to the bungalow by her friends. My family visited sometimes, but it was hard. I was consumed by what was going on I didn’t really notice or think how it must be back in London for my children and husband. I don’t know why it was just how my brain worked at that time, some kind of auto mode.
She was eventually moved to a hospice I was told for her to get better before she came home. Her local GP rang me up just before this, he apologised, said he had let our family down, basically admitted negligence. He had looked after my stepfather also who had died of cancer, undiagnosed and just filled with pills.
I set up the bungalow; things were hopeful and visited her daily in the hospice. The staff there were like angels, looking after me and my mother.
They would always make sure that she was well groomed, her favourite moisturiser, Chanel No 5 put on. They commented on what a graceful mother I had. She started to blossom a little.
Arrangements started to be made to adapt the bungalow, I talked about this with the Hospice, but I noticed their faces change and they said to me “stop, don’t alter anything, your mother is not going home”
That is how I learnt the stark reality that my mother was dying and soon, it was not going to be a year, maybe weeks.
I would sit by her bed; read her the newspaper from a time where she was conscious to eventually semi conscious to unconscious.
There are moments I remember, the time I bought a dress; I am not really a dress wearer. I went in to show it to her, she said “I love that dress on you, let me buy it for you”. A daughter/mother moment.
The time we found all her old badges of achievement from school, a smile on her face going through them, recounting.
The time my father came down to see her (they had split up when I was 3 weeks old but kept in contact), I know she always still had a soft spot for him, the smile on her face seeing him, times of past.
Then there was the sudden bombardment of people wanting to see her, acquaintances, friends. She started to get worse, the nurses would tell me to limit who could see her, until the point no one was allowed. People don’t understand, they get angry and upset. My mother chose not to see people before she became unconscious. She didn’t want people being there as she laid in pain, dosed up, her dentures. not fitting anymore because of ulcers and not being able to wear them, she had pride and wanted people to remember her in a better way.
We still hadn’t talked about it. The fact that she was dying. No one gave me a book on this and told me what I was meant to do. One day a nurse came to me, she took me aside and said “your mother loves you so much, she worries about you, she won’t go until you tell her you will be alright, tell her it’s alright for her to go, that you will be safe”.
I sat there for a while, felt sick, panic, didn’t want to do it, but the nurse said I should do it and I suddenly felt like my mother wanted to go but was hanging on in pain for me, so I did go and talk to her.
I sat beside her, held her hand, she turned towards me, I said “Mummy, it is alright, you know I am going to be fine, don’t worry about me anymore, if you are ready to go, it’s alright”
Try to put yourself in my shoes having to say something like that to a parent. Right now as I write I cry, for its hellish.
She said to me “go where darling?” I felt sick, had I put her possibly somewhere in her mind she wasn’t ready to accept, had I nearly broken that spell of her existing not knowing and thinking it would be all alright? Why should anyone take that away from her, why shouldn’t she just be not knowing, I never know whether she realised, accepted and didn’t say, or whether she thought it would get better, but I tried to shield her from it because we never spoke about it.
Time was nearing, she got worse, the nurses said they would give her drugs so she wouldn’t feel the effects of not being able to drink or eat, they assured me she wouldn’t feel pain, that she would be in a happy carefree place. I don’t know whether that is true. I know a time when she lay there and though she could not speak or more, she had tears, it broke my heart, why was she crying? I could never ask for she couldn’t answer.
The last day I rung up as I always did in the morning to ask how she was, the nurse said she had just been washed and was not as comfortable but settled. I told them I was going to be about half an hour. I arrived, the ward was empty, a cleaner just walked out of there as I walked in. I saw my mother, she was obviously dead. I stood there a moment not moving, then I calmly put my bag down and coat off as if putting off the moment. I went over, touched her, there was still a tiny bit of warmth, but she was obviously dead.
I ran out of the room, grabbed the cleaner, just saying over and over “she is dead, is she dead, she is dead, my mother please see her”
She was dead, and I don’t know when realisation struck. I had spent five weeks watching her die of cancer, the medication finally sending her off. Nothing prepares you for the loss of your mother, let alone watching this cruel disease take hold, day after day, taking a piece of someone you love dearly, though she suffered this with grace and dignity.
She is my heroine, my mother
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