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 !!
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
What a few weeks we have had, Emelia has been put through the mill, my journey was a rocky road this is like a very fast twisty rollercoaster mainly going upside down.
3 weeks ago she woke with a swollen hand and arm, we rang the hospital just to check this was nothing serious, they said A&E to check for a blood clot. Wasn’t expecting that. So another long day sat in A&E, she was very self conscious, was hot in her hat, but didn’t want to sit there bald, also her bad eye doesn’t look in the same direction as her seeing eye, so felt people were thinking she was looking at them. Unlucky due to her being Autistic i was allowed to be with her, we were there at least 5 hours. After tests that were inconclusive she was allowed home with antibiotics and blood thinning injections, as a precaution, with an appointment for Monday for an ultrasound. Mondays ultrasound showed a clot in the vein her PICC line is in (the PICC line is inserted into her vein in her arm, they use this to give her, her chemotherapy and to take blood from) the doctors in A&E said the PICC line was also not working. Nottingham insisted they did not want the PICC line removing, so now we start worrying that she can not have her chemotherapy the next day. She was told she needs her injections daily and after chemotherapy finished tablets for the rest of her life. The blood clot could be the result of the PICC line or the cancer, we did double check not because she had covid vaccination on Saturday- reassured not.
She had her 2nd cycle of Chemotherapy the next day, there wasn’t an issue with PICC line, the A&E doctor wasn’t doing it right with flushes etc – who knows 🙄. She tolerated this round better, she was not sick and didn’t hallucinate but was totally wiped out, and slept lots. Think she will be hearing the bleeps from machine in her sleep (attached to machine for over 48hrs) she was allowed home on the Friday, her consultant has reduced her pain relief and steroids- all good signs.
First top up went well, home same day just very tired after this one but she didn’t seem to pick up. We should have took this as a sign …..
The next Tuesday top up day was a hard day. I had my mammogram the week she was an inpatient and they called me back as they had seen a 14mm image that they wanted to look at more closely, my appointment clashed with her chemotherapy top up, so not only was she having chemo she was worrying about me. Lucky after an ultrasound and a different mammogram the doctor couldn’t see anything so gave me the all clear- yay. I returned to her, her consultant, sarcoma nurse and Mark were with her, she is anaemic and needs a blood transfusion as well as chemotherapy. So a quick visit turned into an 8 hour visit, they let both myself and Mark stay with her, we watched Harry Potter in the retreat room and played pool, this helped the time pass. Another young person was having chemotherapy in the retreat room as well, only her 2nd visit, she was being very sick, and looked scared- its just heartbreaking to see.
We were told if Emelia’s temperature stays ok she will be home after her blood transfusion. Lucky it was fine, so home we went. The next morning her temperature was high, so rang the hospital, bring her into to assessment ward, we will have a look at her. So at 8.30am we are taking her back again. We let her sarcoma nurse know and she rang ahead and explained I would need to stay with her. After tests (and a giggle pushing her to x-ray) it was decided she needed to stay in, so moved to another ward whilst waiting a bed on the teenage cancer ward. IV antibiotics and fluids given, they kept an eye on her over night, after being told she could be here 4 nights and then maybe 2 days, we were given the good news she can come home after 1 night, with antibiotics.
She isn’t great, very tired, fed up or should I say pissed off with it all, made harder possibly because, Tom has had to move out, so he can attend college and see mates as restrictions are lifted, he struggled with shielding, so moving out is safer for her. But must be hard for her to see him moving out having a life, starting something new and exciting. For me, its upsetting he went so quick, no build up to get used to it, I know its the right thing, they all need to fly the nest but …….
I just wish the rollercoaster would slowdown – I know it will not stop anytime soon, but a slowdown would be good, then we could raise our hands and enjoy our time together ❤
She has been home for 2 days now, its odd as at times it all seems so normal, a normal weekend in lockdown. But its not normal. She is scared, she is asking why her, she says she doesn’t feel brave, yet to me she is more than brave. I have told her its okay to be scared and not to feel brave, because we are here to be brave for her, that she’s not alone, she said but she is alone with her pain 😪 (no words!)
She has been home a week now, we went to City Hospital last Tuesday for her top up chemo, we were there 6 hours, mainly because they only make the chemo drugs up once you are there and also because her medication needed sorting, they were meant to be reviewed and we were running out of some, it took ages to sort. Luckily we were in the quiet room on the Teenage cancer ward. Unlike the chemo ward which was very busy and noisy when I went, so much better.
This week has had its ups and downs, some days almost normal. But her hair started to fall out, so she needed to take control, and shave her hair off, I am grateful that last year she decided to cut her long hair off and have shoulder length hair (she did donate it to the little princess Trust- who she could get a wig through now if she wanted) it was emotional as now she looks like she has cancer, coupled with the emptying of her uni accommodation makes it all seem real, we did cry together as its just so unfair, she should be going back to uni and enjoying all that involves, being with her friends, her uni accommodation was a safe, chilled place for her, she loved it there so its heart breaking that today we had to empty it…….
People keep asking me how I am, from friends to professionals and I don’t know i can’t answer that, I am going from day to day. I am busy, she has meds 4 times a day , so I am medicine lady and feeding her at least 3 meals and snacks a day. My specialty are milkshakes (Eskimo style – she was told NOT to eat McDonald’s milkshake as not good with low immune system- so of course crazed one, homemade best). It is getting harder to feed her as her mouth is so very sore, but we are succeeding and working with it, as its the only real pleasure she can have. For me its good I can help a little, I am also asked does it help that I have had cancer and chemo, it does a little, as can relate to losing hair and that life goes on for others, but her chemo is so much more intense, and she is only 21. Nothing prepares you for watching a 21yr old having to fight a very rare cancer.
I am sorry that I have avoided talking to people, answering messages mainly because I really don’t know how I am, or how we are, I do appreciate every message, offer of support, but some days I do just want to curl up and shut the world out, but can’t as I need to be strong for her, she worries about us as it is ….. I will answer your messages eventually ❤❤
Having cancer is bad, but watching your beautiful 21 year old baby girl start her own battle is horrendous!! She is such an amazing person and has always inspired me, she being her has given me permission to write my blog, about my experience of her fight, she has asked I be honest, I said be easier if I know she will not read it 🤔 she is worrying about us all, particularly her friends and immediate family. So me being honest about how I am may be hard as trying to be strong for her, although she knows me well, so probably already knows how I am feeling. What I write is how I remember it, how I view it all and from my point of view not hers.
This all started around Christmas- she started experiencing headaches that wouldn’t go away – we explained it away the stress, uni coursework, TCAs still don’t know what that stands for but online exams to you and me or change in diet (veggie due to Sir David Attenborough) but they continued and got worse, a few telephone calls with GP and finally New Years Eve she saw a GP – migraine meds given, this took the edge off them but never got rid. She then became concerned that she was taking too many (this can then make headaches worse – go figure) again spoke to GP a few times over the phone and another face to face, this time urgent 2 week referral to neurologist (don’t worry sure not cancer but 2 week as unable to do other referrals at the moment). So on the 3rd February we had a telephone consultation with a neurologist. By now she had double vision and a numb cheek and top right lip. He wasn’t concerned felt it could be due to over use of migraine meds and wanted to try different medications but felt a CT scan of the brain would be useful (if we had waited for this she still wouldn’t have had it as booked it for 26th Feb!!)
4th February her eye sight was worse, she was worried so rang GP, they said A&E get opthalmology to look at eye. Lucky I was able to stay with her ( we had thought about going to A&E sooner but hesitated, i had rung them and they said i was unlikely to be allowed to stay with her) 12 hours later, CT scan and MRI done, the ENT team talk tumour/mass there is lots of people rushing around, shining lights in her eyes, arguing with the ophthalmologist to come look at her, discussions with QMC Nottingham all a bit of a blur now, but was admitted there and then, I was told I couldn’t visit the ward and she maybe transferred to QMC via blue lights. Leaving her there was at this point the hardest thing ever, yet she was more worried about me! I got the call at 4am to say she was being transferred over to Nottingham neurology ward- no visiting ! Bloody covid !! Then someone on this ward tested positive to covid, so now she was deemed a covid risk – this meant tests paused and other consultants were reluctant to see her. She was moved to EENT (eye, ear, nose and throat) we were then allowed to visit- I would say that once we were told yes okay to visit i knew this was not good, no one had said cancer but we knew. She had a biopsy from up nose, more MRI scans and then last Thursday she was moved to City Hospital Nottingham to Hogarth ward to side room, oncology ward. We were told that it was cancer, and they were waiting for a bed down the corridor on the teenage cancer Trust ward. On Saturday she moved in there, so after 3 hospitals and 4 wards she is finally settled where she needs to be and we have a bed in a cupboard (harry potter style) so one of us is with her all the time, apparently guidelines are different for teenage cancer (which is up to 24 years old)
Her diagnosis is Rhabdomyosarcoma in the sinus (we joke she trumped me on this one, had to go and get herself a rare cancer, but not only a rare one, she has to have it in a rare place too!!) Normally this type of cancer starts in the bones – but no not her, she has it where they can’t operate. The plan is Chemo and Proton radiotherapy.
Her humour is still in tack, its awful seeing her in pain but she doesn’t want to be a nuisance!!! We as parents are taking it in turns to be there, the ward has said we can both visit so have spent a little time together with her, but also need a break to be fit enough to support her. It was the hardest thing ever leaving her last night, as she had just started chemo, but it was Mark’s turn. I want this for her, it should be me not her – life is fucked up and cruel, oddly when I had chemo etc I was pleased the world was still going on around me, now I hate it, I can’t bare Facebook or the news I want it all to stop 😪