But you visit every day, sometimes driving to collect Dad and then back to the hospital and back to drop Dad before going home, and you feel like you need to be a superhero to keep going. There are times I’ve driven down the M6 and had no recollection of doing so. You go to work, race home, go for a visit, race home and so it continues. And you do it because you want to, I wanted to see her every day and you keep going because what she is going through is so much bigger than you. The thoughts and worries don’t actually go away, but you do begin to think that she will be ok. Because surely if she wasn’t they’d be doing something by now right?
Eventually the biopsy took place and Mum was finally home after the best part of a month. The waiting continued though and it seemed to have no end. Life slowed down a little though in this time and we could all breathe a little easier. Mum was home, she was comfortable in her home if not in her body. She had a hospital bed and chairs to help her move around.
Dad was playing the superhero with such finesse that it put iron man to shame. He looked after her with such love and compassion, nothing was too much for him. He cooked and cleaned, made soup, did the shopping, he was a thoroughly modern man! I was in awe of the way he dealt with it all and remained his usual chipper self. I’m not sure I’d of coped so well.
In herself mum had her good and bad days, and she never showed any anger towards the waiting, the same can’t be said for me I’m afraid. Sometimes it was an overwhelming rage. I hated the fact that Mum had just become a number, She is not a number, she is my Mum. But the logical part of my brain tells me that this is how it is and we can’t change it and we must just wait.
Our birthdays soon arrived and it certainly didn’t feel like a time to celebrate, but I had arranged for a wedding dress shop to bring some dresses to Mum’s house so she could help me choose between them. I knew how important it was to her that she was part of this process and it meant the world to me that she was able to see this and know that I was engaged.
It was a difficult day, despite the happy moment of saying yes to the dress. It was what no one said that hung in the air. Knowing that this might be the only time my Mum got to see me in a wedding dress was utterly heart-breaking, and I can’t say that this thought ever left my mind, and in fact it’s very much still there now. Sometimes I think about how hard it will be to put that dress on, tainted almost. But then I remind myself just how special it was to have Mum’s approval of something so hugely important to us both.
The other hugely noticeable thing was how much Mum appeared to be struggling now, Her speech was slow and appeared difficult. She was eating even less than previous, less than half a meal a day and she was beginning to need more and more sleep. It was clear that something needed to happen. She couldn’t be left like this.
Over the next few days Mum really took a turn for the worse. I’d seen her on Sunday and by Tuesday the change was obvious. She was now struggling to be awake, her hands were unable to hold on to things like her phone or a drink and she seemed to be becoming a little confused and disorientated.
Macmillan nurses had been helping Mum and Dad for a while now, they’d been in to see them at home and at the hospital and were a huge help in getting Mum the things she needed to be able to come home and be comfortable. So when they came in again after our birthday weekend and on seeing Mum decided that it would be worth admitting her to Myton Hospice we were on-board. They suggested that Mum just needed a week, it would offer some respite to Dad and would allow the hospice to make some changes to Mum’s medication which they hoped would make her more comfortable but also improve some of the symptoms she was experiencing.
It wasn’t until she was taken in on Thursday 26thJuly that I realised what was actually happening. Myton hospice as far as I was aware is where people go to die. How could we be sending her here? Were we admitting defeat, giving up? That is certainly how it felt. But again you give yourself a good talking to and realise that this is the best thing for Mum and they’ve said a week so that’s what it’ll be. Plus she’d fallen again at home this morning so this was safer.
We saw Mum at the hospice the following day, Dad, Finley and I. It was a place where we instantly felt at home, it was cosy and the staff were all friendly. They were very honest and open and were horrified to hear that Mum had yet to even see a consultant about any results or the next steps.
They also seemed to agree that once her medication was sorted, she’d be able to come home. So I certainly began to feel that this was a good move for Mum and for us all.
Those first few days were difficult, Mum was so upset and disorientated. I found it very hard to watch her like this, but I told myself it would pass, it was temporary. This was just short term. But it made it no easier, watching her shout out in her sleep, calling out to people who were not there and gasping for breath.
It was that first day where I had the most clear ‘vision’. I’ve not talked about this too much but as I was standing over Mum about to say goodbye for the day, someone walked in the room and stood next to me. Now there was no one there, but it was as clear as day. I could not see the person but their presence was overwhelming. I didn’t feel scared, in fact I really didn’t feel anything. I decided it was my imagination and that was that. Until Mum suddenly took notice and began talking to this ‘person’ next to me. What she said made no sense at all but the recognition on her face told me all I needed to know to confirm that I was not imagining this in anyway. She might have been away with the fairies temporarily but she certainly knew who she was talking to and seemed to take some comfort from this.
Just a few days later and Mum was back, she was brighter, had the full use of her hands back and was eating slightly more. The hospice had been fantastic with Mum but with us as well. She had a stream of visitors and F and I visited daily and it fast became a home away from home. F had won over all the staff and volunteers and often earnt himself a cheeky little biscuit or 2! The staff had chased up Mum’s results and arranged for us to meet with a consultant on her behalf. We hoped we’d finally get some answers. Once again though we hit a brick wall. As Mum could not attend he really couldn’t tell us very much. Another appointment was scheduled a few days later with the oncologist. Myton agreed that Mum was not well enough to attend but wrote to the consultant giving permission from them and Mum for us to attend.
On the day, we spoke to Mum to see what she’d like us to ask, and as determined as ever, Mum wrote her own lists of questions to ask. The consultant was helpful and at least gave us some answers to some of our questions. It is just a shame they were not the ones we were hoping for.
He started by showing us the scan that Mum had, the tumor was obvious, even to my untrained eye. He explained that at this point there was no treatment that could be done, although he said if Mum was strong enough he could do a course of radiotherapy but this would be for pain management only. He met with Mum at Myton and spent a lot of time with her going over the results. He was extremely patient with Mum and between him and Myton they promised that they would manage her pain levels better.
It was on this day that a nurse from Myton took me to one side and told me that if Rob and I were serious about having a wedding style blessing with Mum there we needed to do it that week as they were no longer sure she’d be with us within the week. Now you feel like this news should floor you, but you nod and say ‘yep ok’ and get on with your day. Now I don’t know if this is because you think it must be utter nonsense, or if maybe acknowledging it means it is more likely to be true or if it is just a case that you have to carry on regardless of what they tell you because you are fighting every single day already to just get through. Who knows what it is but I just had to keep on, make a plan, get busy. And that’s what I did. By the following day the wedding blessing was all organised for the Thursday.
I’d made no mention of this to Mum until the plan was in place. Part of me worried about her reaction. Would she feel like we’d given up, that there was no hope for her? I was so relieved when Mum seemed to be genuinely excited, but i am under no illusion that this was mainly thanks to a surprise visit from her Sister from New zealand!
Mum had arranged with the team at Myton to have a bath, not just any bath but a fancy Jacuzzi style bath and to have her nails done in preparation! We’d had orders for which top she wanted to wear and she needed her Dior perfume.
She was so chatty and bright all day, it will be a day I remember fondly. I was in Liverpool for the day with F and Rob and spent most of the day chatting via text to Mum. Her messages made sense and it had been a while since I could say that. She was happy and breezy and just like my Mum, I was so happy.
The following day we celebrated our wedding blessing with my parents, Robs, the children and 2 of my Aunties. Mum looked glowing, I even thought she was wearing a little make up and anyone who knew my Mum would tell you that she never wore make up! But it was just in fact a natural glow, it made the day even more special.
I had vowed that I would not cry, mainly because I’d paid good money for the make up I was wearing that day but also because I’d done enough of that. I didn’t want to remember any part of that day for sadness at all. So even when I felt overwhelmed with love for Rob, I couldn’t falter, this was A NO CRY DAY!
It was a beautiful day, I am so glad we did it. I am so pleased that My parents were able to meet Robs, I am so glad that Mum was alert and able to enjoy herself and it could not have been more perfect.
Still in my lovely love bubble the following day I couldn’t wait to see Mum. We spent the morning chatting as if there was not a thing wrong with her. We were together for a good few hours before she began to struggle. I watched the colour drain from her face and her eyes get heavier and heavier. By the time Dad and Catherine arrived Mum could barely stay awake to say hello. They almost didn’t believe that she’d been so bright that morning, but I know she was and right now that was the best feeling in the world. It was enough to make me forget all the shit and just enjoy my Mum again. To feel like for a moment I didn’t have to worry anymore, she was still very much with us and that is where she would stay. And there was not a single part of me that didn’t believe that 100% in that moment.
Another Monday rolled round and another nurse is telling me to prepare for the worst this week. I wondered how many more times I’d have to listen to those words. How many more times I’d have to tell the family this before it became a reality. Or do I just ignore it because they’ve said it before and we are still here, Mum is still holding on. But in reality she was fading. She wasn’t awake much now and when she was she was finding it difficult to talk. Her food intake was down to nothing at all and even drinking was becoming more and more difficult for her. We questioned the Doctors as to why they weren’t putting her on a drip, why they weren’t feeding her. They explained that it would not help and could in fact make her feel worse. If they gave her fluids that fluid could build up where it shouldn’t because her poor body currently doesn’t know what to do with it and the same with food. Her body would hold on to it rather than absorbing it. The body is kind to us in these late stages the Doctor tells us, it stops feeling thirst or hunger because it doesn’t need either of those things. I almost want to laugh at this, what part of this is kind? No part of this whole process has been kind.
We discussed with the Doctor our concerns about how this could have taken so long to diagnose. The consultant said the bone cancer Mum has is secondary to Kidney cancer Mum had removed and needed no further treatment on in 2012. So that meant that for 6 years this cancer had been growing and causing difficulties for Mum. I can’t remember a time now where she didn’t struggle to walk and move around. She has been using a walking stick for many years and it was a contributing factor in her taking early retirement. The difficulty she had walking put pressure on her heart and caused this to be an ongoing issue.
Over the last 5 or 6 years she’d had various appointments, scans, x-rays, MRI’s and even a few diagnoses and some treatment. There was talk of a hip replacement when she was a little older as well. So in all this time and all these specialists and appointments how can this possibly be missed? I feel like I need to know why. I felt as though we’ve been robbed of time with Mum, time for her to have treatment and fight this. I told myself a lot at the time that actually we have had 5 or 6 years that maybe we wouldn’t have done, that her body has been fighting this for a long time, she has fought to walk, and fought to keep going every single day with no idea what was really going on.
It was clear to us all that this week was not going to be kind to Mum. You could no longer communicate for long periods with her and sometimes she was not aware that you were there, who had been or who was coming to visit. The Wednesday night was one that will stay with me forever. I think it was the first time I’d let Mum see how broken I was. I had spent so long pretending this wasn’t really happening, so long trying to remain positive and strong for her. I felt like she didn’t need to know how I felt as it wasn’t about me. This was about her and how she felt. And while she was struggling to stay upbeat, I felt I had to do that for her. I had to keep my emotions in, at least until I was in the car, or at home because she didn’t need to see it. But that day I couldn’t anymore. Maybe it was because I had friends with me rather than family and I didn’t feel the need to stay strong for them like I did for everyone else. And I lay my head on Mum and cried. I told her how much I loved her and that I knew she had to go. I even told her it was time, I told her to go to sleep. She told me she loved me, it was clear as day. But those were the last words she spoke to me. Which is of comfort to me but also absolutely breaks me. Even writing this now I am in absolute pieces. I am so glad that I had that moment with her. I do feel now that it was important for her to see and hear just how special she is to me and that more than anything in the world I loved her with everything I had.
We were all there every day now. Another Monday arrived and I felt like we’d won. Those nurses had been wrong every time they’d said to prepare for the worst. I felt like sticking to fingers up at them and telling them they were wrong! We spoke with her Doctors who said ‘Anytime now’ but that didn’t really mean much, we’d heard it before. I even said to Rob and some friends that Monday that I think its weeks yet. I’d even dared to say that ‘you wouldn’t put a dog through this, its not fair on her’ on more than one occasion and I swear I’d do anything to take that back now, as if taking it back would suddenly change the outcome.
Tuesday 21st August 6.50am, even when my phone rang at that time in the morning I didn’t really think this could be it. So I arranged for the girls to be collected by their Grandparents and hurried F to get dressed so we could head to the hospice. I packed a bag of anything I could find at that bleary eyed time of the day. Boxes of lego, reading book, Crisps, biscuits and drinks. That’ll do for now. We’d have loads of time to fill today. Rob was away with work but it was fine because I’d find someone who could collect F later. I knew I wouldn’t be leaving the hospice any time soon and that was fine as I was right where I wanted and needed to be. I wasn’t going anywhere, I’d be there to see my Mum take her last breathe if that was what was going to happen. Not that I’d really thought this was about to happen.
So when I see Dad rushing towards me as I go to sign in at the hospice and he says those words ‘She’s gone’ the world stopped. I could feel it stop, I felt everything in that moment change forever. F seemed to have no idea what had just happened so I told him, I could see his little heart break and he cried, it was just for a moment though.
I didn’t know what I was supposed to do with this information, how was I supposed to process it? I just had an overwhelming need to see her, I had to be with her. Now you hear people say it all the time ‘They looked so peaceful’ and I’ll be honest I always thought it was a crock! But she did look peaceful, it’s more than just asleep though and it was clear she was gone no matter how much I wanted this not to be true. I sat beside her and cried and begged for her to come back to us. I told her I was wrong, I wasn’t ready for her to go so she just needed to come back to us.
I spent time with her before ringing my Brother and Rob. And then contacted some of my friends, Mum’s sisters were there and notifying family, I even called the registry office while Dad called some of their friends.
We all spent some time with Mum both alone and together. F was kept busy while we were in there. He had decided that we needed to remain positive as that is what Nanny would want. He and Catherine wrote a list of the things he loved about his Nanny, the things he enjoyed to do with her. He then joined us all in Mum’s room and read through his list. Together we came up with some more things to add to it. It felt like the most natural unnatural thing in the world, all sitting around Mum lying so peacefully. You could almost forget for a moment.
Eventually Myton said they needed to move Mum. Well I didn’t want them to move her, I didn’t want to leave her here. But I knew of course that I had to, I just wasn’t ready to go yet. They allowed us some more time but eventually we took to the family room so they could do the necessary.
Even now the staff treated her with such dignity and respect. She had a blanket and pillow with her that we wanted to keep hold of as they’d been made for her. I went through with the nurse to collect them and she spoke to Mum and told her she was just going to take them from her but that they’d get her another blanket to keep her warm. I was so pleased to have witnessed that, I needed to know that she was going to be well taken care of. They cleaned Mum and eventually moved her, I wanted to see her go, be with her on this journey but I know for the family it was too much. I honestly could have stayed with her, got in to the bed with her and held her forever and I’d never really understood it when people chose to spend time with their loved ones after they’d past. But it felt like the most natural thing in the world being with her and it felt like that was it now. No more time with my beautiful Mum. The nurse bought through the top Mum was wearing for us to take home and wash. I could smell my Mum on that top and could for a week or so after, I slept in it that night and it remains in my pillow case unwashed and will stay there, It bought me some real comfort over the first few days.
We left Myton all together that day and went for lunch. It almost didn’t feel like the right thing to do but in all honesty, we weren’t really sure what we were supposed to do. But at the restaurant it was really busy, the staff were running around like mad things and everyone was chatting away as if nothing had happened this morning. My world had stopped turning at not a single person seemed to care. The birds still sang and the sun still shone, people were doing their shopping or going to work and carrying on as if nothing had happened. How can life carry on around us when the world was stood still? I could not understand that, didn’t want to. But I needed to remind myself every second that she was my Mum, most people didn’t even know her so why would they feel like I do, why shouldn’t they laugh and joke and chat as if nothing happened when in fact it is just another Tuesday to them!
We went home and Catherine and F kept busy cooking while Dad and I let people know what had happened. The phone seemed to constantly ring. Everyone saying such lovely things about Mum and how sorry they are and it genuinely helps. I wanted to know that people were feeling it like I was, that I wasn’t alone. It was comforting to hear these things from people. I knew how amazing she was and I am glad other people knew that as well.
But then a really tough call came in, It was from the Donor organisation. We knew it was coming but it is not an ideal conversation to be having just a few hours after you’ve said goodbye. But I am pleased to say that Mum was able to donate her eyes. I just hope they can be of use to someone soon.
You kind of hit autopilot and just cruise along. Each day becomes about just getting through. You keep busy in the hope this will help. And I suppose to an extent it does but at times it feels like you are just putting off the pain and misery you feel. I stayed positive for Dad, and F bounced around trying to keep us all smiling. And now I come to recall this time, I find it very difficult to remember what happened. The day Mum died is etched in my mind in such scarily clear clarity but everything else is just a block of time. I know we visited the funeral home, registered her death, and collected some of her belongings from Myton hospice and I even went away to centre parcs for a week. But all of that just seemed like more waiting to me. Just as we had been waiting since May.
I struggled so much to process what was going on. Even now, almost 3 months later I can’t possibly accept that she has really gone. I play the last few days out over and over and wonder if I should have said this, or if I should have done that, maybe I should not have gone home, maybe I should have asked Rob to come back from his work trip. There are an awful lot of shoulda woulda coulda’s during that time and maybe they’ll always be there.
Losing a parent is like losing a part of you. My Mum was the core, everything I did was with her blessing, it’s her that I would seek comfort from, advice on the most important and the most sublime of things in life, her approval meant more to me than any other and to think that was gone, just like that was too hard to process.
And you’re aware that you are shutting down a little bit, maybe you’re pushing people away, bottling up those tears or being less patient than you normally would but it feels like it is beyond your control. You wake up in the morning and you already feel tired, you go through the motions, stick to a routine and plod on. And some days it seems a little easier and other days 10 times harder. Sometimes you find a reason to laugh or to smile and then this little part of you says ‘Stop doing that, you’re supposed to be sad’ as if smiling or laughing or having any kind of fun means that you can’t be grieving.
And everyone is great, really great. Friends keep calling and texting even if you don’t pick up, Rob was still there each day no matter how shut off I was and F was still remaining positive. Family still support you through their own grief and words of kindness drop through the door every day. But despite all that you still want to fall apart, tell the world to leave you alone, but you don’t. You get up and get on.
And then you plan the funeral, and you have to be quite mechanical about it all because the minute you let any emotion in, its game over. And you are sick of crying, sick of saying sorry to whoever is with you when the tears start to flow but sick of trying to hold it in. And you choose music, Mum had given us some ideas but then we wanted something significant to us, those left behind, something that came close to telling the world how we felt through music. We wrote the eulogy, and it’s then you realise that you needed more time with Mum so you could ask her more about her childhood, more about growing up and college and how she felt about Dad and getting married and what it was really like to be our Mum. But it’s too late. It’s not until they are no longer here that you realise just how much more you want to know about them.
but somehow it comes together and you finally understand how final this act is. And then the wait continues, a week of waiting for the day to arrive. You wait because people tell you it’ll feel easier after the funeral, so you hold on to that. Hope that they are right because you can’t cope with this feeling anymore.
During this time I began a journal, somewhere I could write to Mum and tell her how I was feeling, talk to her and hopefully eventually share the good as well as the bad. I found it really helpful putting pen to paper. It was our place. I’d beg her to come back to us, tell her how much I loved her and shared the journey we were on without her. Even now I try to write to her once a week at least.
In this week I found myself doing things but having no recollection of doing them. Driving to places and not remembering the journey, talking to people and having no idea what we’d talked about, I’d take F to school and then come home and forget where he was, I’d go to the gym but old ladies were talking about going to see their Mum’s and the selfish part of grief makes you think ‘why do they have their Mum at their age and I don’t?’ And then I’d feel guilty even thinking like that.
I’ve never really experienced guilt in any form, but my god now it was overwhelming. I felt guilty for being sad, guilty for being happy, guilty for crying but guilty for not crying, I’d feel guilty for not doing something round the house or when I couldn’t face normal things, I’d feel guilty about letting people down, about not being able to manage work. I even felt guilty getting a sick note from the doctors for gods sake! I felt like nothing I did would ease this guilt. And there were times where I felt guilty about being alive! Nothing but time seemed to bring an end to those feelings.
We’d decided to go and see Mum on the Friday before the funeral. It was something I vowed I’d never do, but now I was faced with it I had to go, I needed to see her face one more time. Needed to say goodbye to her properly. I’d been told to expect the worst so I think I was surprised to find it easier than I expected. But I knew immediately that Mum wasn’t there anymore, she didn’t look peaceful, she looked uncomfortable. I just needed to go. The funeral home came in and re-positioned Mum and I went back to say my goodbyes. This time she did look peaceful and I left there feeling like I’d done what I came to do and I felt a little more ready to face the funeral.
Now I’ve heard people describe funerals as being a beautiful send off and I just thought people were being nice, but Mums really was beautiful. She had such a huge turn out. Although as we followed Mum in I didn’t notice anyone except for my friends husband weirdly. I could not have told you who was there and who wasn’t. It was only when we sat down that I was even aware of my family sat behind us. I held on to my Dad as if my life depended on it and held F while he sobbed. I have to say I was so pleased to see him finally cry, it worried me how ok he was being.
The service went by so quickly and hearing the eulogy bought to life by the celebrant and hearing people cry and laugh along with us bought it to life. I cried so much that day that it hurt, but the wake bought some happier moments. A time to talk and share stories and meet some of Mums old school friends and work colleagues. Time for family to laugh and love. As funerals go we could not have asked for more. I think Mum would have been happy to.
And then it feels like the healing process has to start. There are calls to make, things to organise and people to notify. And it keeps me occupied and my mind busy which is no bad thing. But inside i still feel like the world is not turning as it was before.
I begin to smile a bit more and ache a little less on the good days, but the bad days are just as hard. But i smile again because I feel like that’s what’s expected of me and I feel like it’s the only way to make it through the darkness.
There are times where all I want to do is call you, I’d even be happy to come to Myton every day again if it meant I could see you again, even just for a minute.
I miss your smile and your laugh, I miss those blue eyes of yours and I realise that I took all those things for granted. I never really took the time to appreciate all the wonderful things that made you you. And it breaks my heart still, each day. Most days I don’t cry but others it’s unstoppable, and if I can hold it in, in bubbles under the surface until I let myself go.
It’s made me realise that it is ok to feel sad, it’s ok to breakdown and not be ok, I just have to take each day as it comes and lean on those around me. I need to allow myself time to grieve and learn how to live without you.
It’s also made me realise how important family is. How I need to take more time for all my family, Rob, F and the girls and my Dad. I need to talk to them more about what they want in the future, how they are feeling and have some of those really difficult conversations about funerals and wishes when the time comes. It’s certainly not an easy thing to discuss but we didn’t have that chance with Mum and I now know how important it is to know these things.
I want to spend more time making memories and documenting family life. And I think Mum would be happy to know that I’ve been able to find some sort of lesson in all of this crappiness!!!
I want to thank all the amazing people I have in my life. I am sure I’d not be getting through any of this without you all.
I am also very aware that I am just at the beginning of the grieving process even now, I’ll never be the person I was before but I hope that once I learn to live this new life, I will find a way of accepting that you’re not here anymore.