The Relapse

The sixth cycle of my maintenance chemo was always planned to be a scan point. My consultant had said at the start, that we will do a minimum of six rounds, but more than likely carry on for twelve. As I started my sixth round, plans were being put in place for my scan updates, and this time I have pushed and pushed for a full body PET scan. The only ever time I have had one of these was at the beginning of treatment last year, and I have only had my spine scanned since. They have always reassured me that if the chemo is working in the spine and getting rid of that cancer, then it will be working elsewhere too. Well, I’ve always thought that this is a pretty ridiculous presumption to make, for something as serious as cancer, but of course you nod and trust your consultant, they are the experts.

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PET Scanner

I don’t mind having scans, I haven’t had any terrible experiences with them, I tend to just sleep through it usually. This is only a good idea until you’re falling asleep and do that twitch because you think you’re falling off a cliff – but you’re not allowed to move an inch during these things. If you move and it distorts the image, they have to redo it all to get a more accurate attempt, which is sooooo much pressure when suddenly your whole body is itchy and you have a sneeze coming! The techniques I’ve adopted to ignore all these needs are questionable. During one of my spine MRI scans, the man genuinely said mine needed doing again because during the scan I swallowed… Errm, I honestly thought he was having a laugh, but as soon as you’re told you aren’t allowed to swallow, obviously you need to 200x more than you had before! For this reason, I usually just go to sleep. In one of them last year, I taught myself how to do the alphabet backwards, because how else do you spend your time wisely?

November 2017 was when I was at my poorliest, and I had finished 3 chemo cycles which meant an MRI update on my spine. I couldn’t lay flat because I was in too much pain, I was having hot flushes and feeling violently sick. I also had an NG tube in my nose (that traumatic one I mentioned before). The specialists could see how poorly I was, so they let me stay in my pyjamas and dressing gown, and wrapped me up in a blanket, dimmed the lights down and I had a nice snooze. It’s the little things. It was just like being in bed, but very noisy. The noise isn’t such a bad thing anymore, it just sounds like roadworks and drilling, and once you get used to the different noises it makes, it feels less like the machine is trying to kill you. Sometimes they give you headphones, but they are so pointless, because the minute the machine starts you can’t hear the music anyway! And last time I had them, it was ‘Absolute’ radio station, so I was glad I couldn’t hear it and was relieved to hear the noise of the machine.

IMG_0063I’m halfway through my maintenance chemo, on cycle six. Every time I go up to Leicester for my IV chemo, I end up with horrific pains in my leg. The nurses said it might be joint and bone pain, which is a common side effect of my particular chemotherapy, and my parents suggested that maybe it was all spine-related, and that it had damaged a nerve or something, hence all the pain. I agreed with everybody, because of course you begin to think you’re just being paranoid in case it is the worst case scenario – more cancer! But I just knew something was wrong. Last year when it all began, I knew what that pain felt like in my spine. I knew the difference between pain and cancer pain. My pain threshold is quite high, I will rarely take paracetamol or painkillers when I do feel unwell or in pain, but at this point I was having enough morphine to knock me out. I  pushed for my leg to be scanned, but my consultant was in no hurry as she was adamant I was responding to the chemo and making good recovery. Well now I was halfway, it was time for an update scan anyway to check on the progress in my spine. So it’s lucky I did push for that full body PET scan.

The scan results from the PET scan and the MRI scan were merged together for the radiologist to produce a report on what was happening throughout my whole body. The results were REALLY good news and also REALLY bad news, so I still don’t know how to feel about it all. The good news, is that all the cancer in my spine has supposedly gone… a result they never thought we would be able to reach – my aggressive, stage 4 metastasised cancer has g o n e. I think they have used the word ‘miracle’ in their meetings about me at this point – and they are probably also sick of hearing about me 15 months later! But unfortunately, they are about to be hearing about me a whole lot more. Whilst receiving the all-clear, I have also been told that the scans have shown a relapse.

noun
noun: relapse; plural noun: relapses
1.
a deterioration in someone’s state of health after a temporary improvement.

Although I was never even expecting the all-clear, I did think at this point, I might at least be coming to the end of this horror, and be out of the woods soon. But I couldn’t be further from it. So basically, I’ve got cancer, again! So we are quite literally back to day one. I always knew it would come back at some point, as the primary (wherever it started) was never removed, as they don’t know where that is. This time it has come back in my right leg, and in the bones rather than the tissue. So it’s still Rhabdomyosarcoma, but with different complications. They aren’t 100% sure, but they think it may only be in my leg at this point, as nothing else was shown on the PET scan. But as they can’t be sure, they want to start with my new chemotherapy drugs ASAP so it sweeps up anything else along the way. So starting tomorrow (Nov 5th) I will be back on to brutal chemo, lose all my hair again and no doubt become very poorly. My consultant has spoken to specialists in Birmingham, who have confirmed the two drugs: Vincristine and Irinotecan. The cycle will be three weeks long:
Week 1: day patient every day mon-fri for IV chemo of both drugs
Week 2: day patient mon for vincristine
Week 3: recovery
and then repeated, six times minimum.

Because it’s in the bone, there are other options this time around. Radiotherapy after chemo is very likely, to target the one specific area and hopefully get rid of it completely. And luckily (well) for me, the surgeon in Birmingham has confirmed that he is happy to remove the cancerous bone at some point – but advises we start chemo first. This will be major surgery and will involve removing the bone and replacing it with metal stints, meaning lots of rehabilitation and recovery! But so important to ensure it has completely been removed, and hopefully means it will not come back again. So the fact it has gone everywhere else is amazing, and something I should be celebrating. However, second time around is less favourable and more complicated, lots of people say ‘you’ve beat it once you’ll do it again’ and mentally, this is true. But physically, your body is tired, your bone marrow is weaker and you can’t fight brutal chemotherapy forever. There are less options of drugs as the first time round they can give you almost anything. So here I am now celebrating the fact I beat a cancer I never thought I could, yet I’m grieving over a new diagnosis and completely terrified of the new unknown ahead. But still. It’s currently daisy 1-0 cancer, and I need to keep reminding myself that.

X x daisy

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8 Comments

  1. Martin Allen
    November 4, 2018 / 8:29 pm

    Daisy, thanks for letting us know what you’re up to. Your college friend Katie is my niece. She fwd’d your blog. We love what you’ve written and wish you all the best, await your next, even though we’ve never met.
    Love Clare and Martin Allen

  2. Alyson Merrall
    November 4, 2018 / 10:27 pm

    Daisy I am so sorry to read that you are having to go through this all over again. But yes you must celebrate the good news and fight the bad ! Sending you lots of love ❤

  3. Nicola Pannell
    November 4, 2018 / 10:36 pm

    Sending love and hugs for your next stage of treatment Daisy. xxx

  4. Tom Goddard
    November 5, 2018 / 9:32 am

    You got this Daisy. Sending my love❤️

  5. Beverley Adams
    November 5, 2018 / 1:02 pm

    Although we don’t talk often you are constantly in my thoughts – we read your reports that are a detailed account of your treatment and you are an amazing author of your experiences. We celebrate with you your good news and are with you fighting the next stage of treatment. Send your mum and dad our love and to you and Jacob xx. Special love hugs to you x.

  6. Julie Durrant
    November 6, 2018 / 9:26 pm

    Keep fighting hard and keep positive lots of love and hugs .x

  7. Philip Simpson
    November 7, 2018 / 1:26 am

    So brave Dais keep fighting.

  8. jeanette
    December 5, 2018 / 3:26 pm

    Lots of love and hugs. Nicoles mom jen xxx

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