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.

4E03860C-0A1B-461E-9D00-FA6E22F6D980

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!

08F229C4-734A-46DA-8D93-6B6F95B2CE6E

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.

870CF3F9-F144-42DC-A6CE-65BBE0BD10C2

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.

3560C523-2330-475E-8511-60F45429F158

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

Update: No More Chemotherapy

Just as I begin to understand my schedule for treatment, it changes. Always. After two cycles of a chemo trial, my scans showed no change, but significant swelling to the area of the tumour. My consultant decided to continue with the treatment, as two cycles is quite early to be able to judge whether or not the chemotherapy is working, and ‘no change’ is technically a good thing as it means it hasn’t grown. After another two cycles, my leg was re-scanned and it wasn’t good news.

I arrived at Leicester Royal Infirmary on Monday 4th February to begin my fifth cycle of Irinotecan and Vincristine, and I wasn’t feeling well at all. As a three week cycle, I would usually have week one for chemo, week two for chemo, and week three as a ‘good week’ where I would see friends etc, and generally feel much better. But at this point, I was no longer having a ‘good’ week, I was just feeling crap. All the time. When I arrived to my clinic appointment that morning, I said to my consultant (for the first time since starting treatment 18 months ago) that I didn’t want to have my chemo. I needed a break, I was listening to my body, and I just knew that I could not go ahead with anymore of that chemotherapy. I had said to my mum beforehand, that I wasn’t prepared to go through another cycle of this chemo until I knew it was definitely working, because it was making me too poorly. It was nowhere near as brutal as the drugs I had in the beginning of my journey, but that is what was so worrying. I shouldn’t have felt too poorly this time around, but my body is tired, my bone marrow has had enough, and to be honest it was struggling to recover the way it used to, so for once I spoke up about it.

I definitely know and understand my body now more than ever, because I was right. My body wasn’t ready for chemo. My scan results had shown that the tumour in my leg had grown by 0.5cm. This isn’t much bigger, it’s 13x6cm, but it appeared more aggressive on the scan than before. So in the words of my consultant ‘your body has stopped responding to chemotherapy.’ These are the words you dread hearing from the beginning, and here I am being withdrawn from treatment and hope all at once. I have always been told how lucky I have been to have had such a good response to chemotherapy, because that’s something that cannot be controlled. Your body either responds, or it doesn’t. Usually, if it doesn’t respond, then they can try other drugs and look at different protocols. But unfortunately, Sarcoma is rare, Alveolar Rhabdomyosarcoma is even rarer, stage 4 is complicated and a relapsed stage 4 metasasised Alveolar Rhabdomyosarcoma with an unknown primary, is proving almost impossible to stabilise, because believe it or not there is currently no more research which helps my case at all. They have tried the most recent drugs and there is currently no obvious alternative chemotherapy available. I bravely asked my consultant if this makes my cancer terminal. She didn’t give me a straight answer, which is worrying. I know my cancer is incurable, but it’s always been treatable. So where does this leave me? Am I going to spend the rest of my life fighting this thing off? Or is my life almost over?

I was booked in for an urgent full body PET scan, to check up on the rest of my body, because if I haven’t been responding to chemotherapy, we need to check that the rest of my body hasn’t started growing and spreading cancer cells again, because it has a tendency to do this. At this point I was referred over to a Sarcoma specialist in Nottingham. She was keen to give me radiotherapy, but wanted me to have the chemotherapy first to try and shrink the tumour before zapping it with radio. But now that the chemo hasn’t worked, she wanted me to move straight on to radiotherapy. THANK GOODNESS she has given me this option. Because at this point, I had started to consider planning my own funeral.

I went to Glenfield hospital in Leicester for a full body scan on the Thursday of that week, and had an appointment with the Nottingham consultant on the Friday, so things were moving very quickly. I was told that if the cancer was just contained to my leg, I would be able to go ahead with five weeks of radical radiotherapy (the strongest dose). However, if the cancer has appeared anywhere else, it will be more complicated, I will have the same dose but over a shorter period of time (probably two weeks) and then potentially have radiotherapy on any other areas of cancer. My consultant in Leicester had told me that anyone else with my original diagnosis would not have made it this far, and whilst that should empower me, it makes me feel guilty, like I’m on borrowed time which will soon be running out. My leg was in a lot of agony at this stage, I was just about managing in the day time, but wasn’t getting any sleep at all at night. I’d have a hot water bottle on my shin and a bag of frozen waffles on my thigh, tossing and turning all night in pain. I’d been taking morphine every night for weeks already to relax me before going to bed, hopeful of some kind of shut eye!

During my appointment in Nottingham, I went through the planning stage of radiotherapy, to be ready in case I was eligible for the treatment. This involved having a CT scan, and moulds of my legs taken. These have to be used every time I have my radio, to ensure I am laid in exactly the same position every time, and that the beams are targeting the exact right area. This is all planned right to the very millimetre. I was given four little tattoos on my hips, right knee and thigh which are to be lined up with the beams every time I receive the radiotherapy, to ensure further accuracy. For the leg ‘moulds’ I was laid on a solid bed, and little squishy bags were pressed around my feet and my leg, and set in to place, where I can comfortably lay my feet during each session.

I received the PET results the next Monday morning, a week after receiving my awful scan results of a grown tumour. Luckily, the cancer is contained currently to just my right leg!!! My spine is still completely clear (much to everyones surprise) and I am able to receive radiotherapy on my tumour. This is the best news we could have hoped for. Fast forward just two weeks, and I am already in Nottingham at the start of my radiotherapy journey. I have been scheduled five and a half weeks / 28 sessions of radio all at Nottingham City Hospital. So unfortunately we have had to spend lots of money/time planning our last minute stays and hopping from hotels to apartments, back to home (to see Dolly, of course!!). It was just too far to travel up every day. So my radical radiotherapy began on Monday, February 18th and I will have it Monday-Friday for five and a half weeks, scheduled to finish on March 27th. But no doubt something will change, as it usually does. I have started filming the journey of radiotherapy and will create a VLOG for my YouTube channel to show everyone what happens. Each session takes about five minutes and you can’t feel anything at all! You literally lay on a flat board and a big machine moves around above you, presumably zapping the tumour with its radiation, but I’m not all that sure. I’ve left the radiographer with lots of questions which we will hopefully answer in the next vlog over on my YouTube channel (Daisy Ellis).

Thank you so much to everyone who is continuing to support me on this never ending journey! I’m feeling closer to the finish line than ever, and hoping this next course of treatment isn’t too tough to get through. Then I am hoping my life can be a little more ‘normal’ whatever that is…

2019

I genuinely can’t believe I am still going with this journey. As in, how can you be this poorly for this long and it not be done with? HOW am I still having treatment? But then I guess I could also be asking how am I still alive? My blog has been quiet because I have become so lazy these past few months, I don’t have the motivation to get anything done, and when things need doing I usually just ignore them and have a nap instead. Perhaps I can try and work on this since it’s the start of a new year… then again I will probably just say the same next year.

5A453190-FE17-48B1-97C4-531ACF5B13BA

SO another new year seen in with cancer. I spent it in the same way as I saw in 2018, in my pyjamas at home but I stayed awake past 8pm this year! I had originally planned (and fully paid for) a trip to Paris with my friends for NYE but my latest chemo cycle was delayed and by the time New Year came around, I just didn’t feel well enough to go with them. Gutting, but I never could have walked 10,000 steps a day to sight-see or get through the trip without catching an infection thanks to my weakened immune system. I still had a lovely Christmas and new year with my family so I don’t feel like I’ve missed out on much, I did have to log myself out of social media a few times because it’s soooo hard not to compare your life to everyone else’s. The chances are if I’m scrolling Instagram, it’s because I’m tucked up in bed poorly, so of course I’m going to feel fed up seeing everybody else out having fun. I’m currently neutropenic anyway, so I’m housebound for the next week, which usually I’m fine with and very rarely get bored.

A0CA257C-FB7B-4029-9691-A6C838978E55

I’ve had a busy few months. So since my relapse diagnosis I have finished three out of six cycles of my new chemotherapy treatment, had update scans and also got a puppy! My new chemo is on a 3 week cycle. For the first week, I go to Leicester every day for five days of Vincristine and Irinotecan IV chemo. The second week, I go to Leicester on the Monday for vincristine and then have the third week off as recovery. I have to wait for my neutrophils (white blood cells/immune system) to be at a level of 1. My blood levels are taking longer to recover now after chemo, so I can only assume this is because my bone marrow and my body in general is just getting tired from all the treatment. I don’t blame it! I had an MRI scan after my second cycle, and it showed that my spine is still clear of cancer, and the tumour in my leg is contained. It hasn’t grown or spread, but there was swelling on the scan, not really sure what that means but I can feel it in my leg! My last cycle was delayed because of my neutrophils, so I had to have my last day of chemo on Christmas Eve which was a shame – but at least I finished in time for Christmas Day! The side effects haven’t been too gruelling this time around, I’ve been a little bit sick and just felt very exhausted, but so far only been admitted to stay in hospital once! To me, this is great compared to my experience with chemotherapy last year!!! I have had to shave my head (again) as it started falling out after my second lot of chemo. I have filmed this process so if I’m brave enough and clever enough (unlikely I can work it out) I might share it on YouTube.

9263D5E1-964B-44A3-9442-5C691A39BE5A

Since my relapse, I have been seeing various different specialists in the UK to be monitored and also discuss further treatment options. I went to Birmingham to see a Sarcoma surgeon, and he was the loveliest man I’ve met so far! He was very honest, detailed and answered all my ridiculous questions. When I arrived he sent me straight for an X-Ray to check the progress of the bone in my thigh (where the tumour is). Originally, he wanted to see me to discuss surgery which involved completely removing my femur and replacing it with metal. This would involve a major surgery and a very intense recovery, he was even adamant I wouldn’t ever walk again without the aid of crutches. He explained that this is because the new ‘bone’ wouldn’t be attached to the surrounding muscles and tissue, up to my hip, so really the leg just wouldn’t work properly at all. Luckily for me, at this stage, he has decided that as the chemo has controlled the pain, and there is not a huge amount of damage to the bone, that he won’t be needing to go forward with this surgery! It would only need to be done if I was in pain or struggling to walk. He has however banned me from going outside when it’s icy, or doing anything which could involve breaking my leg… as the cancer has put me at massive risk of easy fractures and breakages due to the weakened bone. Luckily I spend most of my life sat down anyway.

F0A4107A-96CC-4B77-A9BC-B60B7F1B469F

So surgery is over and done with for now. I travelled to Nottingham a few days later to meet with a new Sarcoma specialist (I don’t have one at Leicester anymore) so this was exciting. She was also really lovely and knew a lot about my situation so clearly had my best interests at heart with her decisions. She has decided that at the end of my six cycles of chemotherapy, she will do a PET scan (full body) to ensure that the cancer has not spread or started anywhere else in the body, and will then start me on six weeks of radical radiotherapy. I’m not entirely sure what the difference between radio and radical radio is, although I know it involves giving the maximum dose she can. As far as I know, radiotherapy involves a big machine, and laser beams which zap the one targeted area in the hope to fully remove the tumour. She told me it would be a ‘walk in the park’ compared to the experience I have had with chemotherapy, so that’s good enough for me.  It will be every day for six weeks, and the process takes about five minutes per day, so shouldn’t be too invasive, although I will be receiving this treatment in Nottingham (1hr30 from home) so we will probably have to rent somewhere or stay in hotels for this time. Once I’ve started my radiotherapy in a couple of months, I will do a separate post all about it!

Everything has been made more bareable recently since our new addition to the family… little Dolly the maltipoo puppy. Dolly was part of my ‘wish’ that was granted by a charity called Edgar’s Gift who give cancer patients a wish of their choice. So I found Dolly in Doncaster and they helped by putting some money towards her! I hope everyone has had a lovely Christmas and new year, my family and I are so grateful still for all of the support we receive from friends and even people we don’t know! Let’s hope this year brings us much more health.

 

X x Daisy

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.

IMG_6455

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

Day 365

12 whole months, 11+ different drugs, 10 scans, 9 cycles of chemo, 8 infections, 7 blood transfusions, 6 doctors, 5 hospitals, 4 cases of sepsis, 3 NG tubes, 2 PICC lines, 1 less ovary. (Oh and roughly 100s of blood tests, 97 nights in hospital, 52 PICC dressings, 15 nurses… the list goes on). If you think that’s a mouthful, you want to try reciting my drugs chart to a new doctor, which only becomes easy once you learn how to pronounce the 20 different drugs. I don’t know why the names were ever agreed, there isn’t a single medicine with a short, simple name. Except for calpol, and that’s not even on the list. This was meant to be a year update, but true to self I am late posting it by nearly two months, and have just finished my sixteenth chemo cycle.

What a year though. Some people ask me if it has been the longest year of my life, and honestly it hasn’t. I don’t know if that’s because I spent the majority of six months asleep or if time really does just fly! I wouldn’t change the past year for anything, obviously I don’t recommend cancer but it’s become a new normal for my family and I, and I can’t imagine having my old life back. EVERYTHING changes when life throws a spanner like this at you, but you either embrace it or let it ruin you. Thankfully, all the support and ongoing treatment I have received has allowed me to stay positive and really embrace this and it has even given me a story to tell, all be it a crappy one, it’s more than I had to tell before.

I look back at all that has happened, and sometimes I don’t even feel like it all happened to me. I know that sounds crazy, but I look back to see such a different person, (not in the way that cancer has made me ‘re-evaluate my life’ and I’ve come out a ‘new person’) but in the respect that everything I experienced was such a temporary version of myself. The bald head, the major weight loss, the immobility, ok maybe not the amount of sleep, but definitely the amount of sickness. And because time went so quickly, it was almost like I don’t remember it being as bad as it was. A year ago I was having my head shaved in a hospital chair, and today I’m sat trying to flatten down the bush that has currently grown out of control! But what a problem to have. So much can happen in a year. I never feel sorry for myself or think I’ve had it unfair (when I know full well I’ve had it tough) and I think the chemo brain has a major impact on what I do and don’t remember during it all. I’m aware I’m talking about cancer like it’s all in the past, but it really isn’t. The illness is still very much happening, but again it feels like another new ‘temporary’ now that I’m so much better and having a different kind of chemo. To me, the fact I can now even stand with my back straight is such a milestone, I can walk up the stairs without having to crawl, I can stand in the shower for 15 minutes instead of being bathed in my hospital bed, I can bend down to put my socks on AND get back up again, I can go shopping with my mum without the need of a wheelchair, and I can definitely watch TV without the fear I will never be able to stand up for as long as the presenter on telly can.

Our bodies are honestly incredible, what they are capable of in a time of need is just amazing. The way my blood levels always sprang back up in time for the next battering of chemo, how my legs have gained their strength back with gradual walking and weight bearing, without the need for physio. I had one physio session in hospital, and it was just awful. This works really well for some people, especially with specific injuries it can be so important. But it just wasn’t for me, I think my body just needed time to get back to being itself, it didn’t need to be pushed before it was ready. I hated the session, I was so poorly and low on energy, that I couldn’t think of anything worse than doing some walking and stretching. The guy (who was lovely and really knew his stuff) doesn’t have the best job, visiting patients in hospital who are less than willing to move out of bed. So I was conscious of making him feel like he had accomplished something with me, by trying to do every exercise and stretch all with a smile on my face. But as soon as he left I swore to the nurses they wouldn’t catch me doing that ever again. He then came back the next day whilst I was having a nap, and woke me up to ask if I’d been practising what he showed me. Obviously I hadn’t, so I just pretended to still be asleep. It was very cringe, him gently shaking my leg, me trying not to seem awake. When he left after I hadn’t woken up, I thought sod it, that’s the solution every time he returns. I think he got the message when I didn’t see him again.

I’m such a people pleaser it annoys the life out of me. I will sit and listen to tonnes of professionals and accept their attempts at helping me with whatever it may be. Even though half the time I’d rather be asleep. This characteristic has stopped me from asking so many questions, in fear of making them feel awkward if they don’t know the answer. Recently, a support worker came and assessed me, it’s something they do every few months to make sure there are no concerns regarding mental health, money, social life etc. I usually sit for about an hour for this discussion and modestly mark myself a 4 or 5 out of 5 for every category, especially if she’s caught me on a good day. Because I just can’t be arsed to go over any problems with someone, and most of the time I don’t need to. After she had finished, a nurse said to me “don’t you hate doing all that all the time?” And reminded me that I can just tell people no if I don’t feel like doing it. AS IF I would ever dismiss someone or risk offending them by telling them no, I’d rather put myself through the hour of misery for the other persons benefit and get their jobs done than reject someone!

The only recent drama to report, is my PICC line letting me down. To be fair, it’s done well so far, my first one I had in for 4 months until it got severely infected and almost killed me off. They said this was probably because it was in use 24/7 with the amount of chemo, antibiotics and fluids I was having through it constantly for those four months. I had it taken out and my life was narrowly saved, just in time for Christmas. After being PICC free for a week, I had a new one inserted in the same arm. I’ve already mentioned before how traumatic it was the second time around, but it’s lasted up until now without any problems. Two weeks before I was due to go on holiday (finally) it stopped working. It wasn’t flushing any solution through, nor was it drawing back any blood. After leaving a strong drug in the line to try and clear it of any possible clots or infections, it still refused to work. I was ready to have it taken out there and then, thinking of the freedom with outfits not being spoilt by an arm bandage, and being able to freely go into the pool without keeping it dry. The nurses were also trying to persuade me to, but it would mean submitting myself to a life of cannulas. That’s fine, because I don’t mind the pain of a needle, but the thought of a plastic cannula then being left in my hand whilst I received chemo was a nauseous thought. We left it a week, and tried leaving a stronger drug in the line WHICH WORKED. Thank goodness I hadn’t just had it out, as I still have a long way to go, and cannulas can become more difficult as your veins get worse during chemo. So it’s now working beautifully and they think there must have been a blood clot in the line.

New beginnings are so important, for everyone. I have so much planned for the next few months, scans, a new puppy, a holiday with my girlfriends, and it all gives me not only a reason, but also an excitement to carry on living. Thank you, always. For reading this waffle, sending me messages and praying for me. Your efforts and gestures are never wasted and give me more reasons to carry on. I have four scans coming up, so I’ll be back with my results, here’s to hoping they’ve improved so I can go on holiday without paying £1,000 for insurance.

X x daisy