I have a wealth of knowledge and experience within the health and social care network, I am passionate about getting the support right for people with dementia.
On a very personal note I was diagnosed with breast cancer in Dec 2016, and I have been encouraged to blog about my experience in an open and honest way ... so here goes 😉 p.s. chemo brain is scientifically proven, so if there are any mistakes, grammar, spelling or otherwise this is my excuse !!
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.
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 ……….
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.
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……
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.
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 ……..
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 ❤
I have tried to write this lots of times over the past few weeks. I’ve started deleted and started again, this time fingers crossed 😀
This rollercoaster keeps on giving. Emelia has had 2 more cycles of chemo since my last blog. The first one seemed to go well, but she needed more blood, which was arranged to be given straight after chemo finished, unfortunately due to staff issues this didn’t happen until a few hours after, which meant an extra night in hospital, this was distressing for Emelia, the chemo makes her emotional as it is, lack of sleep and then just waiting adds to this, its hard to see as I can’t do anything to help – so we did a moonlight flit albeit at 5am 😂.
We managed a few days away in the woods with wildlife although that does seem a life time ago already. We returned home for Emelia’s second covid jab on the Saturday, Sunday morning Emelia has a high temperature and is shivering but hot, we ring the out of hours number to be told bring her in we have a bed for her on the special receiving unit, so an 6am trip to Nottingham it was. We were told they will take bloods but probably a reaction to the jab, so the waiting starts again. They start antibiotics as a precaution, lunchtime comes, then teatime, it becomes clear we will be there for the night, so we request a z-bed for me, or Mark would have to drive over from Lincoln to pick me up, Emelia would rather I go home than sleep on the chair, luckily they do find us one by 10pm. During the night the ward doctor comes in to take more blood as the last ones were spoilt. It took all the next day to cross match her blood, her mood was very low, we discussed going home and coming back early Wednesday before chemo to have the blood, luckily the blood came at teatime so we were able to leave at 8pm, home with oral antibiotics ready for chemo on the Wednesday.
Wednesday arrived and we had to chase the ward to find out when to go in, finally at 2pm the ward rang and said they will have a bed shortly but not a teenage bed. She was in a side room again. After chatting to the teenage cancer nurse she said they are going to jazz up the side rooms and also put a TV in them, this will really help. Once we got settled we were informed that chemo hadn’t been scheduled!! It would now not start till Thursday, the only thing we could do was order a Dominoes – Emelia’s consultant visited and apologised as he hadn’t ordered chemo, he had been waiting for some blood results and then forgot. He looked at the vaccine injection site and he thought it might be cellulitis so he said it would be good to give more antibiotics via the PICC line to get on top of the reaction/infection so not having chemo is a good thing. This time they stopped one of the four chemo drugs as you can only have so much doxorubicin. She does seem much better this time round without it.
On the following Monday we went up to Manchester to start the preparation for Proton Beam Therapy. They booked us an accessible apartment to support Emelia with her vision loss and mobility issues. Its a 2 bed apartment in the city centre. Which we will use when we are there for 6 weeks, for this week they allowed both myself and Mark to be with her, for the 6 weeks only one of us, so we will take it in turns. There is a shuttle bus from the apartment to the children’s hospital and then to the proton beam centre. Emelia’s first appointment was at 9.30am Tuesday, we used the bus to get there, it was heart breaking to see the little ones going for treatment 💔 babies and toddlers seems so unfair.
First appointment was with Emelia’s key worker, and he was fab. We then met the consultant she explained the side effects, discussed what the process is and generally got to know Emelia a little bit, I did ask if this would get rid of it, she said that’s the plan – yay good news at last 😀 we will take that. After seeing her we saw an occupational therapist who talked about how they can help after treatment, she also ordered a wheelchair for Emelia- this brightened her up as its the first time she felt that someone has talked about after treatment. The whole centre is strangely calm, the staff are relaxed no hustle or bustle, they are all so welcoming.
Wednesday- this was a tough day for Emelia, they need to fit a mask which keeps her still when having the treatment as there is no room for error, the mask is warmed and then placed over face and neck, with several people molding it to her face and neck. Another key worker was there to support her, he is a well being worker, and he supported her through the process, she then had to have an MRI and CT scan whilst wearing the mask, thses scans are diagnostic scans so we don’t get any idea of how well the chemo is working, these scans are used to plot where the beam will go, where it needs to hit. I asked about the artieries to the brain as the tumour is around this, what the side effects could be, but at this time they don’t know as they haven’t done all the planning/plotting yet. She was told there is no room for error which means no losing or putting on weight, she was not happy to hear this as she had decided to try a lose some of her weight gain from the steroids.
Friday we saw the chemo consultant he explained that Emelia can have her chemo, but as a day case, no over night stay, she is normally in over night because of the flushes to protect her liver and kidneys, which is 2 x 12 hour bags. They can give her it over night in a bag which she can take back to the apartment, they will also not give her Actinomycin chemo drug as it reacts/adds more radiotherapy or something like that. He also mentioned that if we were under his care they would have done a genetic test, he feels there is a reason why she has a Alveolar Rhabdomyosarcoma and that I had cancer young too, it has been mentioned to me before, just wasn’t in the right frame of mind to think about it then, something to discuss with Nottingham team i think. Then she saw a physio who gave her some exercises and a crutch to help with balance.
The Christie experience was a positive, calm and relaxed one on the whole 😊 she starts treatment on the 21st June, we hope and pray they can blast the bugger for now 🙏
Emelia’s courage shines daily, she doesn’t see it, but its there, in her humour, her empathy and her patience.
The Beads of Courage are a charity, each beans represents something, for example a chemotherapy session, having blood taken or a biopsy the list is long, Emelia was only diagnosed 2 months ago and yet her string of beads is already long. This is a great way to visualise what she has been through so far, especially when she is feeling low.
Last week was a tough one, the ward rang us Monday to check when she goes in for bloods, ready for chemo on the Tuesday, I explained we would be with them at 10am and they do bloods then, we wait for results and chemo starts tea time. On the way to the hospital on the Tuesday the oncology department rang asking when we would be there, for bloods, they explained ward was busy but expecting her. We arrived at 10am, bloods were not taken until after lunchtime. At 2pm we were informed that the results of the bloods were too late coming back so chemo will not be starting that day. There was no bed on the teenage side of the ward, but the side room on adult side would be coming available just waiting transfer. Shift change at 7pm, still sat in retreat (day room – fab room with kitchen, large TV but not working and pool tablet, sofa was okay but …) the night staff said there was a bed in one if the bays Emelia could use and they would put a z-bed next to it for me. This happened at 10pm, this is where the sofa is good but not for 12 hours. At 10.30 they took more blood, which we thought was strange. Later we found out they hadn’t taken some blood for liver functioning which is a standard test before chemo 🤷♀️. Emelia finally got her side room at midnight 14 hours after arriving. We were both exhausted, chemo finally started at tea time on the Wednesday, because of the long day and lack of sleep, Emelia wasn’t as physically ready for this round as she would have been. And its having a knock on now I think a week later. I haven’t caught up, so feel very emotional and tearful. Easter cheer has been hard to see and I am not feeling very positive or cheerful.
There was a small light, she had her MRI early as the consultant was concerned it was growing and the results show a slight reduction. This is good, we need time to process that its good news, its difficult when you are in the middle of it all and they suddenly decide to scan early to process it all.
Its hard watching her struggle this time, because of the anaemia, chemo and infection from the week before she is very weak and can’t walk far, this is frustrating her and she is finding it all too hard. She is questioning whether its worth it, if she going to die anyway. Its such a rare type and place to have cancer that they are trying their best to get rid of it, my understanding is that this type normally starts in the bones and then amputation is an option – but hers is inoperable due to the fact its wrapped round the artieries to the brain. We hear parents in the retreat talking about their children’s cancer being fully treatable – so I totally understand why she feels this way, but its the hardest thing to hear. Due to her research at uni, when she goggled her type and place, she got research papers up, and they were not get results/survival rates, this didn’t help. However this is where the courage beads came, I took them out the bag and said this is why you feel so crap, look at all you’ve have been through in such a short time, don’t be so hard on yourself, she is being injected every day with blood thinners, it hurts. She is in and out of hospital no sleep. Biopsy and scans not nice – this beads represent all of this, such a great visual aid.
I want to say things are picking up, but can’t her mouth is sore, her finger tips hurt and she is weak, stumbles about. She hates how she looks, her eye, the weight gain from steroids and lack of exercise – she did have a friend in the snow in the garden yesterday and I heard laughing so maybe things are improving a little – but so far the rollercoaster hasn’t slowed down, maybe next blog will be more positive. I find it hard to write when I am not feeling positive and difficult to publish too, but its the raw truth x