A year ago ……..

This week has hit me hard, I actually hadn’t thought about this week, maybe I had pushed it to the back of my mind. Instead I had been concentrating on the 24th September, planning how I was going to get through the week before and then the day. So up until this week arriving and remembering that Tuesday’s date was the last day she ever had at home, it hadn’t seemed to have entered my head.

Then I realised and remembered it all, all of this week a year ago, and the heartache it brought us. Up until tomorrow a year ago, we had hope, we had the promise of time, we had plans and things to achieve. Emelia had a bucket list, she had a smile and things to laugh about. She had her lego to complete, to learn needle felting and crocheting. The baking we had planned, the trips out, the campervan we were buying and trips we would take. We thought we had time, albeit maybe not a lot of time, but some quality time, even after the terminal diagnosis on the 2nd September we thought for a couple of days we had sometime, she wanted to make it to at least her birthday and then Christmas, although in true Emelia style, she didn’t want to die too close to Christmas and spoil it for everyone else!

Back to this time last year, I had swapped with Mark and come home, thinking they would both be back in a couple of days, still thinking its was swelling due to the proton beam radiotherapy. To be called early the next morning by Mark and told to come back in as the Dr wanted to talk to us all, was one of, if not the worst call I have ever received, I knew then it wasn’t good news. Next week, last year more tears than you can imagine were cried, the heartache of telling your baby girl she is wasn’t well enough to return home, a conversation you hope never to have, the decision we had to make for Emelia again you hope you never have to make for your daughter. Watching her in pain, the type of pain I can’t imagine, yet she didn’t really complain.

I have tried to carry-on working this week, who knows if that was the right thing. But I managed to do some work and had a structure to 3 days this week, maybe not quality work but better than nothing. If I’d thought about this week I may have booked leave and gone away in the motorhome, but I’ve learnt for next year. At least I have been able to sit in the garden and watch the birds, butterflies and dragonflies, this always brings comfort.

The next few weeks are going to be incredibly difficult for all who love Emelia,

She isn’t here…..

As I lay here wondering why I am struggling to get up this morning, wondering why I feel emotional drained and on the edge, I stop myself as having a why isn’t going to change it, isn’t going to fix this. She isn’t here.

She isn’t here to see her friends graduate and go on to their next chapter, she would be so proud of them and pleased they are living live, but she isn’t here to tell them.

She isn’t here to see the lionesses win. The last football match we watched was the men’s euros in Manchester – we aren’t a football family, but Emelia liked sport and supported England at sport, she would have loved the womens euro especially the fact they won. She isn’t here to see the whole impact that win will have on the woman of her generation.

She isn’t here to see this season of Law and Order SUV, or the new fantastic beast film or the up coming return of Criminal Minds.

She isn’t here to see me capsize the kayak and Theo in the sea, to laugh at me and comfort Theo. To tell me off for going too quick with the tide, and then losing her sunglasses to the ocean.

She isn’t here to show off her paddle boarding skills and support me with my lack of skill.

So knowing exactly why I feel like I do today isn’t going to change her not being here. Instead of why, I will let the emotions sit with me today and be kind to me.

I hope she does see it, from wherever she is and that she laughs at me regularly. Keep sending me those signs – I get comfort from them Emelia xx

Friday’s…..

Fridays are hard, she took her last breathe on a Friday and vision I will never forget. Today is a Friday, but today is even harder.

A year ago today, Emelia and I visited A&E as her vision had deteriorated and her headaches hadn’t improved, luckily the doctor ordered a scan. 12 hours later we were made aware that they had found a mass. We overheard the on call neurologist trying to persuade the on call ophthalmologist to see Emelia and advise us on her sight, he wasn’t keen as it was midnight. The neurologist took us to see him (you know its serious when the top people take you to a different department) the ophthalmologist was positive that Emelia’s sight would return once the mass was removed. (I remember not liking him, he seemed arrogant)

Long story, short the neurologist spoke at length with QMC neurology department about Emelia going there, but they didn’t have a bed, so she was admitted to the ward at Lincoln County Hospital. I had to leave her at 1am, that was so hard, we hadn’t been told it was cancer. But we knew it was a mass, and overheard the word tumour. How Emelia started in such high spirits is beyond me but she was joking with the nurse about me being more worried about me leaving her, than she was at being left, this makes me smile writing it 😊

4am call to say she was blue lighted to QMC. Where she was alone with no visitors due to covid. How scared she must have been, but never showed it, we talked and video messaged most of the time.

To say I miss her is an understatement, my heart hurts if I think about her, being anywhere without me, we have always been a team. I loved being her mum, she taught me how to be a mum, she taught me unconditional love. I know I will never be the same, I know apart of me died when she did…..I don’t know if the above quote is true, but it feels like it, I want to believe it, as it gives a little comfort ❤

😥

I realise everyone has a right to be happy and my pain isn’t felt by anyone else. I also want people to be happy and live a full and healthy life, but it has all opened up some old wounds.

When I was poorly my dad got in touch and we exchanged emails, trying to build bridges, but then I got well again and he stopped contact, refused to meet up, even started to bad mouth my mum again. I settled to the fact that he wasn’t going to be in my life yet again. I don’t talk about it much maybe because for many years I thought I had perhaps done something wrong, for him not to want to know me since I was 16, but no it just confirmed it was something to do with him. I told him in one email that I didn’t just lose him I lost the whole side of his family, in some ways that was harder to deal with. Luckily I am in touch with a few aunts, uncles and cousins and i don’t want that to change or upset them (but I need to say this) in turn so did my children, Emelia missed out too. She wasn’t treated as her cousin is. I will say Emelia was adamant she didn’t want to know him, couldn’t forgive him (she was loyally stubborn). I also want to say he used to bad mouth my mum, saying she wasn’t honest, plus lots of nasty words, yet mum never did the same. I don’t understand why he never wanted to meet my beautiful, amazing daughter- his loss.

So why am I writing about this briefly now? I have always remained quiet not said anything against a man, who calls himself my dad yet denies me. Its because as a parent I could never understand how you could go through life denying that you have a daughter, and her children? Yet happily spend time with your son and his daughtet. I would give anything to have my baby here to hold and love her. Oh and the fact he is having a splendid time skiing and enjoying life, like nothing has changed, which makes me sad and angry all over again (and yes a little bitter) But I can’t express this in case I upset people, however I am not bottling it up anymore, people who know me well, will know the hurt he has/still causes me.

There i have written it, but am I brave enough to post it? I feel better for writing it, and that’s the main thing – no more hate i am moving on, its more painful to live without my daughter.

Feeling Empty….

I feel empty. I feel exhausted. I am broken. Simple. I have wrapped presents for 1 child and they are sat under a small token tree, sat there shouting she isn’t here, and will not be here again. How am I going to make it through the next week?

Even strictly final made me sad, I don’t want to upset anyone, and it must be disappointing to be injured and need to bow out of the final, but broken heart? Really? Life or death situation? The rest of strictly did have me in tears as it was beautiful and Emelia wasn’t here to tell me to get a grip.

I had never noticed before, how Christmas is thrust on us, every advert, every game show, film they are all Christmas based and you must be happy and joyful. I fell into this trap every year, I worked hard to make Christmas special, if only I had known last year was her last one. She said she wanted to make one last birthday and Christmas. Sadly not to be……. I am not wanting to “do” Christmas this year. I have bought Tom gifts as seems unfair to take this away from him as well, but no big meal, can’t face sitting round the table with an empty chair. Going into town to buy gifts, as all I see are the things I would have bought for her. Christmas cards well, luckily only received 1 that didn’t mention Emelia and as it happened wished that 2022 would be better than 2021! Well what can I say, in 2021 Emelia was alive simple, I would give anything to have to isolate to protect her this Christmas/New Year, no new year will ever be better than 2021 (I know what they were trying to say, rather insensitively but they meant well).

I am not doing so good this weekend but tomorrow is Monday and a new week. Positive steps over the last few weeks….. I have seen a few friends, briefly in person and via video chat, I have put some plans in place to return to work in March. I know that’s what Emelia wanted, she wasn’t afraid to die, she was worried how we would go on without her. Such an empathic soul (misconseption as Autistic people can be empathic) . I have baked (Tom enjoyed) and started crocheting again.

I have had trouble sleeping, if you know me well, you will know I could have won gold in the Olympics for sleeping, so not sleeping is a new and scary thing for me to experience, but I gave in and spoke to my GP and now have something to help, actually having sleep has made a difference.

Still need to get through this week, hoping no one at the supermarket asks if we are ready etc, and just waiting for the holiday adverts to start ……….

Grief is more than ……

Today is a bad day, I feel lonely, its 8 weeks since she passed away, 8 weeks without hearing her, seeing her smile, without holding her. I ache to hold her one more time. I can’t understand why she had to go. Think Theo is starting to miss her too now, this is the longest he has gone without seeing her, he seems to be waiting for her.

I find sleeping hard, as soon as I try, my mind thinks of her and I can’t switch it off, my body physically aches as my head hits the pillow. As parents you have children and want to protect them, so it’s hard as parents to not be able to protect them when they need it the most.

Planning her funeral was the hardest thing, she didn’t like to talk about it, she hated fire any fire from candles to fireworks, but she also said she didn’t like the thought of being buried, nor buried under a tree (green burial) So we went for a cremation more because we kind of knew where she’d like to be scattered. Who knew choosing music could be so hard, it turned out that Emelia didn’t share her choice in music with friends, as she didn’t want to be judged. No parent should have to organise their child’s funeral – its the wrong order of things. But we did and i think we did her proud and wow the love for her is overwhelming she had such an affect on people which she never saw. She inspired so many people in her short time, she inspired me on a daily basis and I miss that about her, her continued support.

Its like a light has gone out in our lives, it feels like we will never find happiness in anything again. We know she wouldn’t want us to live like this, but at this time its so hard to just put one foot in front of the other.

I have so much love inside to give her, yet she isn’t here to give it to her, so I physically ache to share it with her again, so it’s painful. I constantly talk to her as I know she’d laugh at us and call me cringo, we scattered her in a beautiful place near water with lots of wildlife and a steam train, such a peaceful place, it’s comforting to know she would be happy there and that she loved being there, yet it was hard to leave her yet again, although not as hard as it was to leave her alone at the hospital after she had passed, I will never forget walking out of the ward without her.

If only …….

Borrowed from our angel bears via Facebook

This blog has taken a long time to write and I am unsure if I will publish it, but writing my feelings as well as facts, has always helped me process things better.

My heart has broken, Emelia grow her angel wings at the end of September from ARMS Alveolar Rhabdomyosarcoma a cruel disease. She fought it to the end, in such a dignified and stubborn way, finally giving in on the 24th September, just over 3 weeks after being told she was terminal. I know at this point she would want me to talk technical as its important in understanding the disease a little and to what happened. As she isn’t here to help me with this bit, I will try to explain my understanding (sure she will be cursing me right now as I either spell something wrong or not get something quite right – we used to drive each other crazy, she being a perfectionist and me most definitely not, but I will give it a go).

So the primary cancer was ARMS, it was situated in the sinus cavity and had grown round important areas as we know. This was and had responded really well to treatment, the proton beam radiotherapy had done a great job (we will never know if it had got rid totally) the consultant believes that the dodgy cells had already moved to Emelia’s membrane around the brain and spinal cord perhaps even before treatment, I think these new clusters/tumours are meningioma, a type of brain tumour. I believe that the chemo she had was delivered through her blood supply, which these new cells were not attached too, so her chemo wasn’t able to target them.(as I say this is only my understanding i could be wrong) however when they found these new clusters/tumours they talked about chemo not hitting them and trying some other type of chemo which they use on brain tumours as it breaks through the blood vessels. She had 1 round of this, as she wanted to throw everything at it. We believed this would hopefully give her more time.

The truth is hard, she was in a lot of pain around her neck and back. They started her on a high dose of steroids and medication which helped her headaches. And she was on anti seizure drugs as well all eventually delivered via a syringe driver. It felt like we managed her pain well for 24 hours and then, it got worse so we never really seemed on top of it, for a week or so. The palliative team were involved and worked hard, visited every day, near the end we found the right pain relief for Emelia so I know when she slipped away she wasn’t in pain. Although we hadn’t had a conversation with Emelia for a week before she left us, we played her playlist and Harry Potter. She had Theo her dog and both me and Mark with her, Harry Potter playing when she took her last breathe, watching her go was heartbreaking and so unfair, we were with her when she was born as well as when she died 😔 Its the wrong order of things, we should have gone before her. If only……

Nearly finished……..but thats scary

You would think coming to the end of treatment you would start to feel relief, is it relief? Or hope maybe, unsure whether I mean positive – not sure really, all I know is I don’t feel this, I feel scared, apprehensive and anxious about the future. I don’t like not being positive and I do have fleeting moments of it, and can see life back to how it should be. Unfortunately there are so many unknowns its hard to stay positive. We have been in a bubble of hospitals, treatments and health professionals for 6 months, after her last chemotherapy it will be the unknown.

I know Emelia is feeling it too, she is planning a return to her Uni accommodation in September (Uni paused till January) to try to regain her life. But she is finding it tough to think about living with not knowing. We are unsure when we will know if its worked. I understand that its hard moving forward after cancer, but I was lucky that mine has a lower risk of returning, however for Emelia we have already been told that if it has buggered off there is an extremely high possibility that it will return, she doesn’t know how she will carry on with her normal stuff knowing this, I know she will.

So proton beam radiotherapy finishes next week, not saying what day as not jinxing it again, unfortunately the beams have had a few wobbles this last couple of weeks and this means she has missed some treatments, so they are doing 2 a day for a few days, they can do this as long as they are 6 hours apart. She has coped well with this treatment although she has headaches and her nose is sore and congested. She has an eye infection in her right eye (the one she can’t see out of now). Her hair is coming out again, this was a shock this time, as it had started to grow again, but she coping with it with a smile and humour.

She had chemo last week it went okay, again it was given under ambulatory care, which means she didn’t stay in over night, they gave her the flush with mesna, in a backpack attached to her PICC line and she was able to come back to the apartment, unfortunately at 5am the machine decided it would get air in its line, so an early morning trip to the ward to get it sorted, apart from that hiccup it went well. She is due her last 🤞 chemotherapy back in Nottingham on the 9th. We hope we may get some answers when she is there, as we wouldn’t know when leaving here. The waiting does mess with your head.

We can’t wait to get home, the apartment has been good, thankful for the air conditioning, thankful she was able to have this treatment here in the UK. If it had been 18 months earlier we may have had to go abroad which may sound nice, but we have been told about people who have gone aboard, and its no picnic! Emelia now needs her own bed and Theo.

Half way through …..

Today – Thursday she is half way through. It’s gone quick but I am starting to find it harder, I find it tough to see her go through this and I feel it’s so unfair. The realisation that we may not know the outcome for a while is hard, she so wants to get a life back, but she doesn’t know how she will do it without knowing. She will though she is stronger than she realises.

The 3 weeks have had some rollercoaster moments – nothing runs smoothly for her. Although having chemo as a out patient did, we hope it goes as smoothly next week. We had an 8 hour visit last week, due to her needing the zoladex injection (they are hoping this injection will save her ovaries) Manchester don’t give this injection so took time to get one, then the nurses had never given it – once they saw size of needle, didn’t really want to give it. At least they read the instructions and I was able to explain about the safety catch (previously left on and the nurse hadn’t understood why she couldn’t inject Emelia)

Last week they also did extra scans as the density in the sinuses is different due to the tumour responding, and they wanting to alter the beam. Which was good news, the consultant agreed the new plan and they took it to the physics team who didn’t agree, so plan stays the same. The tumour is responding however its becoming holey rather than shrinking – I did ask if it doesn’t go can she have more proton beam radiotherapy, the answer was no, her team would need to look at other treatment, as she is have a “good” dose now. She has had a few delays this week, as they completed the maintenance last weekend and this means it takes longer to set the machine up and aim the beams.

I think I am wobbling this weeks as it all rides on this working, and we are half way through.the end is getting close and we don’t know what is really happening with it. I am so tired. Also home sick, miss the dogs, being in the apartment without windows that open, Manchester is so busy, I don’t like being out there, she is so vulnerable. I think the fact Tom has covid has maybe made it more real now. Some of her old symptoms are coming back, she is having headaches, her nose is irritated again, and the feeling in that side of her face hasn’t returned so still feels odd. We are trying to get out and have picnics and keep busy, but we are getting on each others nerves 😂 poor Emelia shouldn’t be cooped up with her menopausal mum, (and that’s hard enough for everyone around me) and her dad 24/7 but that’s where she finds herself. But we are halfway there ……..

Proton Beam Radiotherapy – 1st week done ✔

This week Emelia has had her 7th cycle of Chemotherapy and 5 Proton Beam sessions. She started the week on Monday early with blood tests and obs. All okay so chemo was started, she had a lovely room brand new, only been open 2 weeks. It had a bed, big chair, ensuite and TV so better than the day case ward. 5 hours of chemo then she was given her backpack with a 20 hour bag of fluid and pump, guidance on what to do if the pump has a wobble and sets its alarms off. Then it was off for Proton therapy – for me a straight forward process and quick (i only had to sit in the waiting room watching the tennis) Emelia said it was horrendous, noisy and her mask was extremely tight (looks like a lizard after – its okay they are her words 😂) they are firing the beam in at 3 angles.

She is doing really well considering all that her body is going through at the moment, thankful for tennis and football – 2 days of chemo we needed it 😊. Luckily the pump behaved its self over both nights, no alarms – phew, could have caused a night dash to hospital if it had gone off, day 2 was 4 hours of chemo, and fitted again with fluids in backpack, and proton therapy- this time we took the wheelchair, so we had a little trip to hospital shop and then went outside to go to the proton beam centre (much better than being in hospital for 2–3 nights) although we do need to isolate whilst having chemo, so no meals out.

She has been angry and grumpy which is to be expected considering all she is going through, we have tried to get out a little since chemo finished, thankfully we have some food shops close by, so able to walk to them to just buy an icecream and then sit and watch the world go by. It is odd seeing the office block opposite empty, but plenty of people visiting Manchester for the weekend via the train.

Her bloods are good, so no need for any blood transfusion or extra injections this time round.

Can’t believe her first week is done only 5 more to go. Only today off this week as they are having 3 days of maintenance next Friday, Saturday and Sunday- so instead of Friday next week she is back in tomorrow, Sunday.

All going as well as it can, miss the garden and dogs, but only 5 weeks to go. Thank you for all your messages and support ❤