This article is about my journey when my Mum was diagnosed with cancer and to a certain extent – my Mum’s as well in the best way I can tell it as she can’t herself.
To respect the privacy and emotions of my family, they have had little mention in this because I believe that whilst we all played an essential part in helping and supporting Mum as a family, we all have our own story to tell.
We have all travelled our own path and this one is mine but it is by no means taking away the hard work and dedication that my sisters, nieces, and nephews and friends offered to my Mum – because trust me, that was when I realised the importance of family and just how close we are. But as I said, this is my story as I saw it.
The Waiting Room
Most people I know would assume a waiting room is something that is found in a hospital, doctors, dentist, physiotherapist and they would be right but this article is not about that kind of waiting room. It is about a waiting room that not everyone gets to visit and only some get to notice or observe.
When my Mum was diagnosed with terminal lung cancer in November 2005, our (myself and my siblings) world ended as we knew it and little did we know, that we would be entering a dark tunnel of grief and pain. I distinctly remember ‘bargaining with God’ to make her better, to make it a medical mistake, to make it a nightmare and most of all, to make us all wake up from that nightmare saying ‘Thank god that wasn’t real’.
Except it was real, it was also brutally harsh, cruel, emotional and exceptionally very painful and the emotional roller-coaster that took place after that fateful diagnosis will be one that every member of my family will remember – each for their own reasons.
When a loved one is diagnosed with cancer, the whole family dynamics change; quite simply they have to. Each person will take on a role – nurse/carer, driver/organizer, worker/provider, support person etc and it normally is the best person takes on each job so to speak.
After the shock of a diagnosis when you realize that all the screaming and shouting and bargaining in the world won’t change the outcome, and that crying until your arms go numb and your eyes swell up from over crying – everything is still the same. And when the shock of saying the word ‘cancer’ in the same sentence as your loved one has subsided (but not worn off because for some of us it doesn’t), only then do you start to get practical and make plans.
Because to be honest, you may not be able to change the outcome of the ‘hostile lodger’ that is cancer in your family, but you can change how you deal with it and what is said and done along the way. So much is within your control if you choose it to be.
At the time of Mum’s diagnosis I was at university studying nursing (something that I never completed) and I remember when Mum was diagnosed, it was the loneliest period of my life. It was like my foundations had been rocked and they had because Mum was the key part of those foundations and the fabric of my life.
Mum and me in hospital
Even when the heater was on, I was cold – the coldest I had ever been, the loneliest, the saddest and the most frightened. Who wrote the rulebook on cancer because I needed a section on how to cope? There didn’t seem to be a chapter on that part.
‘Where do you get strength from?’ I asked a friend one day when I told him about my Mum, sobbing down the phone as he listened to me, not knowing what to say – who does in those situations? Where did I find the strength to cope? Well I shall tell you, I found it from my friends, I found it from the cancer support team, and I found it from my family knowing that the only people that truly know what you are going through are the ones that are going through or have been through the same thing. But most of all I discovered a strength within me that I never knew existed, almost as though it lays dormant until required and then like a trooper, steps right up to the table.
The best advice came from a friend who wrote me a message which read simply ‘Spend every second you can with her, say everything you want to, leave nothing unsaid and make the most of each day with her’ (or words to that effect). And it was that advice that served me well and something I would advise anyone else to do as well.
Due to Mum’s rapid deterioration, I gave up university; after all why should I study about caring for others when my Mum needed me to care for her? Also the university couldn’t grant me any further compassionate leave but did offer me ‘some time off in the third year’ (I was in the first year) and as Mum was on borrowed time and had a poor prognosis, I bit the bullet and walked out of University that very day that they said that I couldn’t have further time off.
I remember walking through Ealing (London) feeling as though a weight had left my shoulders because now I could commit to what was important – my Mum.
“Mum, I have dropped out of Uni” I told her cheerfully but secretly terrified as I would have to pay back the NHS Bursary payment that I owed them. How I was going to pay my way was anyone’s guess and I was more than aware of the strain that it would put on my husband who would be the sole earner. Still, I did not regret that decision and I still don’t to this very day.
“You didn’t do that because of me did you?” Mum asked – sounding weak and tired on the phone.
“No of course not” I replied – which was partly true really as I didn’t want to stay in a place and an industry that claimed to care yet wouldn’t allow me to do the same with my own family.
“Liar” Mum replied – she knew me so well!
God bless the telephone….
I don’t know about you but to those of you that have been in a similar position, I found myself calling my Mum a million times a day, I would start off pretending that I needed to ask her something, then by the end of the day I would be doing it purely to hear her voice so I knew she was safe and ‘still alive’. I will also admit to still having Mum’s mobile number on my phone because I cannot bring myself to delete it.
“Will you stop calling me, I have spoken to you lots of times already” Mum would tell me off.
“Love you Mum” I would say at the end of each call.
“Love you Smanff” (My childhood nickname) She would reply, I would tell her that I would speak to her tomorrow, she would agree but we both knew that I would call before bed. Suddenly all the ‘I love you’s’ in the world were not enough and I had realized that up until now, I hadn’t appreciated her like I should have done. I had always assumed that when I went back home, she would be there in her reclining chair with her handbag by the side of her, her glasses case on the arm and her coffee cup by the table.
I had assumed that she would be in her chair, grinning like a Cheshire cat when I walked in the door, as she would say “Hi Smanff”.
I had also assumed that I would always be able to call her and say “It’s me” and Mum would reply “Hello me” as she always did. But we all know the old saying about assumption – just never do it because it will come back to bite you.
When Mum came out of hospital after the initial diagnosis, the family met up at Mum’s and we had a traditional Sunday roast and Mum sat at the end of the table like the Queen she was and also the most significant person at the table. I had brought my video camera but sadly Mum was so tired she would fall in and out of sleep and the only footage I got of her that day was when she was asleep – why didn’t I video her before this diagnosis so that I would have had better and more memorable footage – now there’s a question I ask myself every day.
I recall looking at her, when did my larger than life character of a Mum get so tiny and frail – how on earth did that little body manage to hold such a big personality? I wanted to stare at her face forever and take in every aspect so that I would remember everything; I stared at her until my eyes burned. I stared at her chest to make sure she was breathing and I stared with all my heart and soul because I knew, well we all knew, that she was going to a place that we were not allowed to go to.
“I will fight it” Mum would say firmly looking more determined than I had ever seen her, but shortly afterwards she would be fast asleep in her chair looking as pale as pale can be.
Mum – the ‘fighter’
She had been prescribed morphine quite early on but she hated it, she said it sent her ‘mad’ and much to the disapproval of the cancer nurse specialist, Mum stopped the morphine to regain her mental clarity on thoughts and judgment and you know something – that was her right to do so.
Mum seemed ‘normal’ for a while, well I say a while it might have been a few days, it might have been longer. She was tired and she was uncomfortable but she was ‘with it’ as to quote her.
But very slowly, so slowly that you could barely notice it, she became quite distant, as though her mind had the ability to leave her body (and us) for a bit and go off somewhere else.
“What are you thinking Mum?” I would ask her at various times her when it appeared her mind had wondered.
“Nothing” Mum would reply.
This would be a daily question with the same response but one day when I saw her ‘escaping’ from her own thoughts, I asked her the question again.
“What are you thinking about Mum?” I said – expecting the same response.
Mum ‘came back’ from her ‘mind escape’ and stared at me hard. Her piercing blue eyes bore into mine; she paused momentarily as if choosing her words carefully and replied firmly “I am thinking about how you kids will cope when I am gone”
That was when it dawned on me that how we (me and my family) coped with this, would determine how Mum would cope with her cancer and her own journey.
It took a huge amount of courage to say “We are going to be just fine” – Mum looked at me and held my hand. She had ‘Mum hands’ – you know what ‘Mum hands’ are, they are special hands that kind Mums have, usually with too tight rings on them giving the impression of chubby fingers. ‘Mum hands’ are used to cover your forehead to see if you have a temperature and are far more reliable than any thermometer.
These very special hands are used to comfort you, hold your hand and generally make you feel that nothing else could match nor compensate for the ‘Mum hands’ of your Mum – except for when she is giving you a clip round the ear for being naughty and then those hands are the biggest in the world and a force to be reckoned with.
Mum stared at me for what seemed ages, as if assessing my ability to cope without her. Could she tell I was crying inside and begging her not to leave me, could she feel the raw pain I was feeling and the emotional and devastating need to go where she is going and hang on to her hands and follow her?
Mum then sighed and nodded, as though she had got all the answers that she needed, whatever she had tested me with, I had passed the initial stage and she could go on to the next stage in her life and that is what I have called ‘The Waiting Room’.
The Waiting Room – (my definition) ‘a place where your loved one starts to go when they want to prepare you for your life without them in it’
Obviously your experience may be different and you might have your own version of how things are when you are faced with losing a terminally ill relative but this is mine.
Mum’s mental escapes would become more and more frequent. She would be sitting in her chair with her eyes open but she ‘wasn’t there’, she would go off into her own world and I couldn’t go with her.
“Where do you go Mum, can I come with you?” I wanted to ask but couldn’t.
One day I had to go to the shop to get her some milk for her coffee, when I got back, Mum was sat in her chair with a broken glass on the floor around her feet – I felt sick with horror of the what might have happened, she could have hurt herself badly and I hadn’t been there to protect her.
“Sorry, I broke a glass” Mum told me in a weak yet matter-of-fact voice and then off she went escaping from her own mind into ‘The Waiting Room’.
I cleaned up the glass and made her a mug of coffee and sat down next to her and decided that if I couldn’t join her in ‘The Waiting Room’ then I would try and watch her go there.
I made small talk with Mum and watched her nod and smile at suitably appropriate moments and then quite suddenly, Mum drifted off, her eyes took on a blank stare, she would stop communicating and off she would go into her new world ‘The Waiting Room’.
I stared at her and tried to imagine what it was like there and I came up with this explanation.
They start off by distancing themselves from you at a tiny bit at a time, but prior to this, they need to know that you are ready for them to take this step. It is an invisible room with an invisible wall that is so strong; it cannot be cracked nor broken in to. They can see you but you cannot see them and they will keep dipping in and out of this room to check on you that you are OK and more to the point, that you are going to be OK and only when they are satisfied that you are strong enough, will they decide the time to make their last trip to The Waiting Room before they pass on to their ‘final resting place’ – wherever that may be depending on your beliefs (or not).
I sat for what seemed ages staring at Mum, with her ‘Mum hands’ all clenched up holding her own fingers, her eyes open, a wistful look on her face – wherever she was, I wanted to be there with her, why couldn’t I go with her, it just wasn’t fair? But I guess there isn’t space for me there, I don’t know but I do know that I saw her go there, I saw it with my own eyes and heart and what is more; I felt it too.
Many a time I watched Mum go through to ‘The Waiting Room’, each time for a little longer and then quite suddenly she would answer a question as sharp as you like as though someone had whispered in her ear it was time to come back to me.
The times Mum was in ‘The Waiting Room’ were lonely times and although she was sat next to me, I was the loneliest and the coldest I had ever been in my life and no heater in the world could have warmed me up.
Mum hadn’t been out of hospital following her diagnosis for very long when she collapsed and was taken by ambulance to hospital. I was back in London at the time with my husband after travelling between St Albans and Northolt, when I received the message and made my way to the hospital.
Hemel Hempstead Hospital
Mum was in hospital for about 10 days before a hospice bed was found for her, I refused to leave the hospital and was allowed to sleep on the floor in the dayroom and my goodness did we have some fun in there!
The following memories are to name but a few that happened in hospital and during that time we were there, we forged friendships with nurses, doctors, patients and relatives and the kindness of complete strangers totally restored my faith in humanity at that time.
Each evening I would help Mum settle and do little bits and pieces for her, then I would change into my pyjamas and shuffle off to the dayroom armed with my blanket and pillow and watch TV with the other patients.
One night I had cleaned Mum’s false teeth and I was standing over the sink with a pot of Steredent false teeth cleaner (the smell reminds me of Mum) and I said in a too loud voice “Mum, I have cleaned your false teeth for you and rinsed them for the morning”
Mum pursed her lips in a disapproving ‘Mum look’ and replied rather curtly “Thank you Samantha, now the whole ward knows I have false teeth!”
Aside from the fact that my darling Mum was sitting up in bed in a blue nightdress looking like a gummy bear with no teeth in her mouth, the whole ward could see that she had no teeth of her own! Still I got told off for making it obvious – something that still makes me smile to this day.
Another time there was a male prisoner on the ward and he was handcuffed to two prison warders. I made friends with him and would often go to Budgens to buy delicious food and share it with him and his wardens and another night the prison wardens treated him and me to pizza and we shared it – it was the best pizza that I had ever eaten and I will always remember that night we all fell asleep in the dayroom, me huddled up with a blanket and the prison wardens chained to the prisoner, occasionally jangling their chains each time they moved to change sleep positions. I don’t know if I felt safe because they were there or unsafe because they had a prisoner. But they were great company and so was the prisoner and I often think about what he is up to and if he or the prison wardens remember the tatty looking blonde woman curled up with a blanket late at night in the dayroom, or the night I treated them to smoked salmon from Budgens.
I told Mum about the prisoner and Mum said in a worried voice “I don’t know that I am happy about you hanging out with criminals”. But she needn’t have worried, the guy was chained to two officers at all times and those poor bastards had to accompany the prisoner even to the toilet!
It was ever so funny one night; we were all in the dayroom having had our food and sharing sweets and stuff when the nurse came in to check on me. Apparently Mum had said to the nurse “My Samantha is hanging out with a criminal, can you check she is OK?” (Imagine that in a Yorkshire accent!)
So myself, the prisoner, the two guards and the prisoners girlfriend (who was visiting at the time), all went down to Mum’s bed to show her that I was OK and the prisoner waved to Mum with his chains rattling and the prison wardens all waved as well and so did his girlfriend – it was like being a member of the Chain Gang! Mum nervously waved back and raised her eyebrows! We laughed about it the next day and Mum said I had surpassed myself ‘hobnobbing with the Underworld’!
Mum rarely went into ‘The Waiting Room’ when she was first in hospital, in fact she seemed to communicate more there than she ever did at home which told me that her need to have myself and my sisters and brother cope after she had gone, was really important to her and when she was in hospital, she didn’t have to pretend to be brave, she didn’t need to be scared of upsetting or scaring people because at the end of the day death and the grieving process is not only scary, but terrifying for all involved and after all, it’s something that ordinarily our parents want to protect us from.
One night I was sleeping beside her bed, curled up in a chair with a blanket and a pillow. I had just fallen asleep and could feel someone poking me, I rubbed my eyes and looked up and it was Mum leaning out of her bed poking me to wake me up.
“Are you OK Mum?” I asked her.
“Just checking that you are still here” Mum replied and then patted me on the shoulder. I curled back up again but stayed awake in case she needed me.
“Mum?” I asked her.
“Yes love?” Mum replied, I could see her beady little eyes glistening in the dim light of the hospital bed lamp.
“I love you” I replied. I would have said it ten times as well, in fact I did under my breath when she was asleep.
“I love you too” Mum said and patted me again.
“Just so you know” I told her and I could feel her frail hand fumbling from the cot sides of the bed – I took it and held it, feeling her gnarled arthritic fingers grip mine – it was precisely 11.20pm, I remember the time well as I had my phone next to me. That was how we would always fall asleep, holding each others hand and I wondered just how and when something so simple as holding hands could suddenly become so important and I held her hand as though my life and hers depended on it.
That became our bedtime mantra you know, “Mum I love you, just so you know” – I said that every single night up until the very morning that she died.
Mum had eventually started to go back to ‘The Waiting Room’ while she was in hospital. One night we were watching ‘A Night at the Proms’ on TV and Mum was in her own world, probably assisted by the morphine and nothing would rouse her.
I was organizing her bed as I still liked to plump her pillows though and tidy her hair and just feel like I was doing something, in fact I ended up plumping a few pillows there of the elderly patients, to this day I don’t know if their pillows needed plumping or they allowed me to purely to humour me. I assisted with the teas and coffees as well and we would all gather round someone’s bed at night and watch TV over a cuppa.
When a ‘Night out at the Proms’ were on TV, the all male opera group were on ‘IL Divo’ and they were Mum’s favourite, she loved them. I recall Mum opening her eyes and giving a big grin before she went back to sleep, I guess those boys have the power to ‘get anyone out of the Waiting Room’!
Mum was transferred for what was to be her final journey to the hospice; I was in the ambulance with her. We had all gained a level of acceptance, although it was still so painful, we knew what was going to happen and it was almost like an organized and controlled journey and it was out of our hands.
Many people in life are denied the chance to say goodbye to their loved ones, car crashes/plane crashes/murder/heart attack – all kinds of things can snatch a life so proper goodbyes are denied to those left behind.
With cancer and good medical care, you are often given the chance to say goodbye, either at the time or you can say your goodbyes beforehand – it doesn’t really matter, but basically you get the chance to say what needs to be said, you get the chance to say ‘I love you’ or ‘I am sorry’, or to make peace and get the chance to hold the hand of the one you love. I consider myself blessed and incredibly lucky to have had that time with my Mum because not everyone is so lucky.
The Wedding Planner!
When my husband and I got married, we didn’t tell anyone – not our parents, or anyone and yes we hurt them, which is something, I regret doing to this day. A week before Mum died, I had organized with the vicar in the hospice if we could renew our wedding vows and I would surprise Mum on Christmas Day – except that the best laid plans tend to screw up.
Mum had started to become confused and in the end I had to tell her about ‘the wedding’ to keep her focused.
“Mum, what is happening on Christmas Day?” I would ask her.
Mum who had been back in her ‘Waiting Room’ would very quickly come back to me and say “A Wedding” and then she would smile and be off again. Mum was fading fast and I had 4 days to keep her, 4 days to make amends for marrying without her being there – 4 days, would she make it?
A (difficult) Decision
It was a couple of days before we renewed our wedding vows and I was assisting Mum with her tablets.
‘Here you go Mum’ I said and popped her medication in her hands and helped her put it in her mouth.
Her eyes fixed on me, she was out of ‘The Waiting Room’, and she moved her tongue from side to side in her mouth and then removed every single tablet and handed them back to me. It didn’t register what she wanted so I made attempts to give them back to her.
“Come on Mum, you have to take your meds” I smiled at her.
“I said NO” Mum said firmly, her blue eyes burning holes into mine. She was making a stand, making a choice and asking me to respect it.
“That’s OK Mum, you don’t have to do this anymore, I shall let the doctor know” I said softly, trying to hard not to cry that my eyes were burning.
Mum suddenly became more lucid and came out of ‘The Waiting Room’ and held my hand, she was trying not to cry. “But what about you kids, will you be alright?”
I will always remember what I said to her because it took every bit of strength to give her my next response.
“Don’t you worry about us, you have taught us well and I promise you that we are all going to be just fine” I replied.
Mum stared at me, nodded, held my hand and went straight back into ‘The Waiting Room’ quicker than I have ever seen her do, in fact I could have sworn that she skipped in there with a spring in her step – she was ready for the next stage in her life. I held her hand and she maintained a weak grip on mine and that was how we remained until my sister arrived.
December 25th 2005
“Can’t stop, I have a wedding to go to!” The vicar said cheerfully after we had done the Christmas morning carol service where my niece had stood up and sang a song for Mum.
I remember wearing this horrible nasty grey jumper and some jeans, I looked awful but I still reserve the right to have the title of ‘blushing bride’ even if it was a while since I had blushed let alone initially made my wedding vows.
My family gathered round the bed and my husband and myself stood near the vicar and we had to read our vows from the bible.
There was one moment that Mum would have loved and that was when the vicars robes knocked over a jug of water and it went everywhere, I wanted to giggle but felt that God would have kicked my arse and told me off but I know my Mum would have laughed – perhaps she did and I never saw it.
Mum was barely awake, sedated from morphine and she could not be roused really.
Let me tell you that it took all my strength not to cry reading those vows and I suspect it would be the same for my family as well. We all held on and remained composed as the vicar read out the vows and we repeated them.
Our ‘wedding day’ by Mum’s bed
At the end of the ceremony, my nephew said, “Aunty Samantha, look! Quick, look at Nana!”
I looked at Mum’s face, she was lying on her back, her eyes open and tears pouring down her cheeks – she had heard it, she had heard everything I was sure of it!
“Mum, squeeze my hand if you heard the wedding” I said to her as I held her hand, which was cold and floppy. To my immense surprise, Mum squeezed my hand as hard as she could.
“Mum, squeeze my hand if I have made it all OK” I whispered to her, wanting to try yet wanting to stay composed – tears would upset Mum, I was sure of that.
Mum squeezed my hand so hard that I wondered where her strength came from. “Mum, I love you” I whispered close to her ears.
“I love you too,” Mum whispered in a husky barely audible voice.
26th December 2005
Mum died peacefully at 2.40pm on 26th December 2005. It was like she had left ‘The Waiting Room’ and had gone to her final journey, she had fought to stay with us for as long as she could now she knew we would all be OK, she felt comfortable enough to leave us.
Where did you go Mum?
The question I ask myself all the time since Mum died is ‘Where did you go?’. I want to know where she has gone, I want to know where she is and whilst it is nice when people tell me “She can see you, she knows you miss her”; I am rather selfish as I want proof of all this.
I saw what I perceived and interpreted as ‘The Waiting Room’, is it so selfish of me to want a glimpse of what is beyond that?
Me doing Race for Life in Mum’s name
Abdel, Mum and me – healthier days and Mum always smiling!
Dedicated to my Mum whose strength in her journey taught me how to be strong myself and how not to be afraid of what life may throw at me.
IF YOU REQUIRE HELP AND SUPPORT
Cancer is not only a disease, it is a lonely and traumatic journey that can turn your life on its head – but there is help out there and please do not be ashamed to admit that you need a helping hand to cope – either for yourself or your family.
The biggest step is deciding that you need to talk to someone and by talking to someone, you take the first step of managing the grieving process, because at the end of the day it is that – a grieving process that has to be dealt with by yourself.
Please be kind to yourself and remember that there is help out there, reach out for it and don’t be scared to ask for it. Something I found helpful was before I went to bed each night, was to write down in a notebook exactly how I was feeling, it was random, it made no sense, it was barely readable but as my psychotherapist told me ‘If it’s on paper then it’s out of your head’ and he was right. Then I would rip it up and throw it away and even I was surprised at how much lighter I felt after doing it.
Here are some links that you may find useful – although some of these are UK links, you may find the equivalent in your own country.
Samantha Rose (C) Copyright 2013