The dreaded word: Terminal

When it comes to my cancer, ‘unpredictable’ clearly doesn’t even cover it. In my last blog post, I was eager to start radiotherapy and I thought I was nearly at the end of my treatment, and going back to normal life. HA HA HA. Yeah. Ok. As if that was ever going to happen. Any time things are looking positive, cancer literally turns around to me saying ‘Ha, not just yet! Let’s take it to another level just to test your boundaries!’ This last month, I feel like I have honestly revisited Hell. Back in one of my earliest blog posts, when I had just started chemotherapy, I explained how awful it was and how I had spent almost four months consecutively in hospital. I didn’t think that 20 months on from my diagnosis, I’d be back in a position where I needed blood transfusions and be spending time in hospital as an inpatient, with sepsis. I ESPECIALLY didn’t expect to be in this position two months ago when I started radiotherapy.

The hope, of course, was that I would have six weeks of radiotherapy and my tumour would be dead. And as the rest of my body was clear, there was also hope that I wouldn’t need to have anymore treatment as I would technically be cancer free! But unfortunately, this wasn’t the case. I don’t know why I ever assumed it would be that simple. Radiotherapy went really well (and super quick!), I can’t believe there is a way to treat cancer that has so little side effects. The only effects I experienced were feeling very fatigued (I slept A LOT and basically just woke up for my appointments), and I have been left with a huuuuuge burn on the back of my right leg where I was treated, but it’s getting better already. I still don’t know if the radiotherapy has been effective, as I won’t be scanned for another few weeks to ensure the radiation has finished working on the tumour. My leg was pain free pretty much from the second session of radiotherapy, so that is hopefully a sign that the tumour has responded well.

Anyway, into week two of radiotherapy I had chest pains. I didn’t think much of it as they sometimes come and go, but as I went to hold the area of my chest that felt sore, I immediately found a lump in my left breast. I haven’t ever had ‘lumps’ as a symptom of my cancer, instead, the area is usually painful or swollen if something is wrong. As soon as I felt the lump, I got my mum to feel it and tell me what was going on. She was just as confused and very concerned. This lump was really big! The next day my consultant reviewed me and had a look at the lumps. She made an appointment for me at the Nottingham Breast Institute, where I had an ultrasound of the lumps. At this point in the process, the doctor taking the ultrasound usually recognises the nature of the lumps, and can have a slight indication as to whether these are cysts, tissue growth or potentially cancerous tumours. She was sure they definitely weren’t cysts or tissue, but she didn’t think it was going to be ‘breast cancer’ as there were so many lumps in both breasts, and she hadn’t ever seen this before. She took a biopsy sample, which was AWFUL. This isn’t my first ever biopsy, however it is my first one whilst being awake! The one they took from my spine I was under anaesthetic for, as it’s a very delicate area. So this was quite traumatic for me! I’ve lost a lot of weight and don’t really have breasts as it is, so it really was uncomfortable. They use needles to numb the area, and then they go in with an even bigger needle. This didn’t hurt at all, but they used quite a lot of force to penetrate the actual lump which was uncomfortable! It then clicks and retrieves the sample back into a tube, and then she went in again to get a second sample. I then passed out but that’s a whole other story! I think I just got myself into such a state about it that it was more traumatic than it needed to be. After I came back around, I had some chocolate and felt much better, but I have been left with a nasty bruise to remind me.

These results did of course come back positive. It was the rhabdomyosarcoma and it had spread to both my breasts. Obviously this is devastating, we thought it was under control and my oncologist has never known for my type of cancer to spread to the breasts before. Luckily she had planned me five sessions of double dose radiotherapy to my breasts, so I finished this at the same time I was due to finish my leg radiotherapy anyway. I then started Carboplatin and Etoposide chemotherapy, which I am due to have two cycles of and then a scan to see if it is working. A full body scan also confirmed that it had slightly spread to my liver. I always said to people, I’m not completely screwed until it goes to my liver! And here it is in my liver. But apparently I’m not quite screwed yet, because it’s only very slightly in my liver, so we need to get it under control ASAP. If this chemo doesn’t work, I don’t know what else there will be to try.

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I became a godparent to my gorgeous Anny

Now for the real dramas, I have completed two cycles of this new chemotherapy. The day after my second dose, I felt pain under my left arm, and on checking, I found a lump. THESE BLOODY LUMPS, I CANNNNN’T EVEN. Straight away I knew it was sarcoma, I knew it was a spread. It was so painful I cried in pain for nearly eleven hours this day. Nothing was making the pain any better, and it was taking my breath away! I was admitted to hospital to try and control the pain, but even the morphine didn’t touch the sides. I was only in hospital for two nights, but it was the biggest rollercoaster of emotions so far… My consultant came round to see me the next afternoon, and she sat beside me on the bed and asked how I was feeling. I hate that question! She had basically come to tell me that she was certain this was a spread, and actually ended up confirming that this really isn’t good if it is. She asked me if I wanted to withdraw from treatment, because she wants to ensure I have a good quality of life, but I told her I’m not ready yet. I’ve always assumed I will just know when I’ve reached the point of withdrawing from treatment. It’s the most impossible situation to be in, too much chemotherapy can kill you, it can cause other cancers to develop, it can leave you with life limiting side effects. It is so toxic and I’ve been having numerous hardcore drugs for nearly two years. But, if I decline chemo, the cancer will spread to my organs and I will die. So I don’t really see withdrawing as an option just yet, not until the risks outweigh the benefits. I’ve had the dose reduced for the next four, as it battered my blood counts too much and they couldn’t recover properly, which means I never would have got onto the next cycle!

My oncologist had planned a CT scan for the next day so we could have a look at the lumps, confirm what they were and also check the liver to see if the chemotherapy is working. I can’t help but ask questions, I laid in my hospital bed, with my mum and my oncologist by my side, and I straight up asked ‘is this bad? Does this make me terminal?’ and my oncologist honestly looked like she was going to cry. She nodded and said ‘I’m afraid so, this is eventually going to kill you. And I really don’t know when.’ I didn’t ask too many questions after that, but she left quite quickly afterwards! My mum and I broke down in the relatives room, we just wanted my dad and my brother there. They came up to Nottingham that evening and we spent time together round my bed, because that’s as good as it gets for us at the moment! I couldn’t believe I am now classed as terminal. I didn’t know who to tell, because emotionally I was worried my friends wouldn’t be able to handle it, and I didn’t want to worry people even more than they already are! And there would be so many questions, of which I don’t know the answers to, so I just kept it between my family and I for the time being. But you know its bad when all the nurses and healthcare assistants come and say goodbye to you at the end of their shift, in case they don’t see you again!

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Inpatient in Nottingham

It was lucky I came into hospital, as I needed two blood transfusions anyway! So I had one of these whilst waiting for my scan, and then I was taken down for a CT. These are so quick, it literally took seconds to scan me, compared to the three hour long MRIs I was having! I don’t know the reason for changing scans, I think it’s just preference of different consultants and it also depends what they are looking at, as different scans show different details and imaging. After my scan, I was taken back to the Specialist Receiving Unit ward and had another blood transfusion. Literally every time the door opened we were terrified it was my oncologist with bad news. The staff were amazing, they all knew what was going on and they were checking in regularly and making sure my family and I were ok. We weren’t, but nobody could do anything to help. About an hour after my scan, amazingly my consultant burst through the door! I mean that’s good service, you usually wait weeks for results but we didn’t have the emotional strength or the time at this point, and my oncologist is a radiographer, so she can interpret scans herself, rather than waiting for a report. Although, she said she had to run it past a few people, because she couldn’t believe what she was seeing! My liver, is STABLE. This is honestly the best news we could have hoped for. After two cycles, it’s unlikely you will see good progress and reduction in the cancer, but for it to have not changed, spread, or grown within my liver, really is a miracle! I think my consultant expected the liver to have been worse, as it has spread to my lymph nodes after all. So it’s what they call a ‘mixed response’ as it has remained stable, but has also spread. My oncologist literally looked me in the eyes, laughed and said ‘you seriously are WEIRD.’ And she is right! So far everything they have predicted for me, my body has somehow done the exact opposite. Which is really the only reason I still have hope.

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They let Dolly on the ward!

Numerous times now I have been told that they can’t believe I’m still alive, that the chemo hasn’t killed me, and that it is still slightly responding to some drugs. I had quite a good response to radiotherapy (we think) so I will now have five sessions to my underarms to blast the lymph node tumours. I will then continue to be monitored on the chemotherapy, and rescanned after another two cycles to see if there is still stability. If I can be held stable, it means I can be considered for trial drugs. But nearly everything available is a form of treatment rather than cure. So we are just chasing it now in order to prolong my life, we will never be able to get rid of it completely. Lots of cancer patients despise the term ‘battle’ but this really is exactly what it is. E v e r y  single day I have put up a FIGHT for my life. Every bite of food is filled with terror that it’s going to encourage the cancer to kill me, should I be doing more, should I be doing less? I cannot explain how hard this really is, I spend nearly every hour of the day researching different ways to give myself the best chance, but it’s all SO contradicting and very overwhelming.

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Had a lovely birthday with all my friends

I have made a few appointments in London, some private and some second NHS opinions. I need to attack this from EVERY angle possible now and that’s exactly what I will try and do, even if I only get a few more months out of it, I still have good days at the moment and things to look forward to. I have adjusted my diet slightly, and I do take other drugs and supplements daily which are known to help shrink tumours, even those who were told to be terminal. I think the reality is that I’m going to die soon, but then I don’t actually know that for definite, nobody does, so I somehow have to take it with a pinch of salt.

 

x X daisy

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21 Comments

  1. Sam
    May 13, 2019 / 7:08 pm

    Beautifully written, what a fabulous young lady you are x

  2. Jenn Harrington
    May 13, 2019 / 7:35 pm

    Optimism is exactly what you need right now. Somehow you just have to pull through this! You are my hero!

  3. Louise
    May 13, 2019 / 7:40 pm

    No words Daisy love – keep making memories xxx

  4. Louisa Fielding
    May 13, 2019 / 7:42 pm

    Daisy, your writing is so special, it speaks from your heart to ours.

  5. Susie
    May 13, 2019 / 7:47 pm

    Thanks for such an honest, raw update. Where there’s life there’s hope, keep fighting x x

  6. Carol Brown
    May 13, 2019 / 8:13 pm

    Daisy you are truly beautiful and inspiring. xxx Thankyou for posting – optimism and hope are great medicines too. xxx

  7. Helen Gibbs
    May 13, 2019 / 8:19 pm

    💜xxx

  8. Tom Goddard
    May 13, 2019 / 8:50 pm

    Keep fighting girl. ❤️ U X

  9. Jacqueline Akrigg
    May 13, 2019 / 9:01 pm

    You are an inspiration plain and simple. Sending all my love, Jackie x

  10. Jules
    May 13, 2019 / 9:23 pm

    What an incredible person you are, so brave, so inspiring. I have scan results tomorrow and reading this tonight has given me the courage to face it head on. You are a wonderful role model to so many. Sending love, hope and positive vibes to you and your family.

  11. May 13, 2019 / 10:50 pm

    you are such an inspiration, even when your facing such a tragedy you write with so much positivity and strength.

  12. Sally
    May 14, 2019 / 7:23 am

    Keep positive. Meditation and find some calm. I’m wishing you all the luck in the world. Miracles happen daily xx

  13. Nicola Pannell
    May 14, 2019 / 1:49 pm

    All the best people are weird!!
    Heartbreaking to read but you have an amazing way with words and you are really inspiring without knowing it! Sending you love, positive thoughts and well wishes! xxxx

  14. Nicky
    May 14, 2019 / 2:08 pm

    What a beautiful brave girl
    Such an inspiration
    Your parents must be immensely proud of you ❤️

  15. May 14, 2019 / 4:54 pm

    Daisy, we may not know each other, but your courage is truly inspiring. Reading your story has encouraged me to get a lump checked. Whilst I’m sure it’s nothing serious, sharing your story could prevent me and/or a lot of other young women from delaying a check. Sending you a lot of love and support. Sophie.

  16. Mrs Barbara Wilkins
    May 14, 2019 / 5:52 pm

    Keep postive Daisy everyone who reads your blog is there for you, praying that you will come out of this and live your life as a beautiful young girl should.

  17. Tracey
    May 14, 2019 / 7:29 pm

    Sending you so many positive thoughts. You are so brave and I wish you all the luck in the world for some good news. Xx

  18. Sarah
    May 14, 2019 / 9:42 pm

    Hi daisy my son had the same cancer. I’m sure you have met Janet Shipley at The Royal Marsden if not consider contacting her team. She’s lead consultant in ARMS xx

  19. Joy and Derek Freemantle
    May 15, 2019 / 2:13 pm

    You know you are in our thoughts and prayers. Keep thinking positive thoughts – you are an inspiration to us all! Aunty Joy and Uncle Derek

  20. Telma
    May 16, 2019 / 9:09 am

    I personally know someone who has been terminal for 4 years and had been given initially 18 months… Keep the fight and thank you for such an encouraging and inspiring writing even in the midst of all the pain you are going through. Keeping you in my prayers and asking for a big miracle xx

  21. Marlene and Michael
    May 19, 2019 / 4:32 pm

    Daisy, you are amazing and I’m sure people will be taking inspiration from you. Our thoughts are with you, Jacob and your parents. Love Marlene, Michael and family from Leeds xx

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