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Chapter 16: The worst news…

You probably think that there is nothing worse than being diagnosed with cancer, and if you had asked me a few weeks ago I would have agreed with you, however this past week has taught me otherwise. What’s worse than being told you have cancer you ask? Being told that your cancer hasn’t responded to chemotherapy. Yep. And let me tell you it doesn’t get any easier to hear these kind of things. 

Let me backtrack a bit to explain things. Halfway through my chemo, I had a CT scan to check how things were going (this is common practice) and it showed a great response. Just a small amount of tissue left in my chest, which they had assumed and hoped was scar tissue, and practically no tissue left in my abdomen/pelvis. Second half of chemo went ahead like normal and with my blood levels all within ‘normal’ range and me as healthy as can be expected, after my last chemo on the 25th of October I was sort of discharged from my consultant (not fully of course, but no need for weekly checkups), again this is all standard procedure.

Fast forward to a week ago, and I started having some abdominal pain and discomfort again. Immediately, I knew that it was the lymphoma; call it instinct or intuition, or maybe just common sense. I mean what else was it likely to be? I left it just over a week to see if it went away, I thought perhaps there’s the tiniest outside chance that it’s something I’ve eaten or a pulled muscle, but it didn’t and so Wednesday I went to see my GP and things moved pretty fast from that point. My consultant saw me later that day through A&E, admitted me to hospital that evening to get a CT scan done the following day; he didn’t say implicitly at that point what he was thinking but we all knew.

Thursday I had the CT scan and was told that they were going to do another CT-guided biopsy on Friday (more of a legality than anything, they know exactly what it’s going to be, diffuse large b-cell lymphoma, but they have to by law before any new treatment is started). The biopsy was uncomfortable, but by no means the worst thing I’ve endured so far; the safest mass to biopsy this time was the one in my pelvic region rather than the one in my chest like back in March, and I was told that they would have to go in through my butt cheek. Ouch. An arse cheek full of local anaesthetic is not the one. That went ahead without a hitch, just one sore half-arse. Later on Friday, I was given a new PICC line (my third central line, second PICC line) by one of my lovely cancer nurses from my unit, but having already had 2 lines previously it was a walk in the park. The one that was in my right arm (this new one is in my left) was only taken out a month ago! Bloody Sod’s Law.

Then a few hours later my consultant came to my room to have a proper chat about things. There’s no beating around the bush really, and I’m glad my consultant says it like it is; this is not good. The lymphoma has grown back quickly and aggressively since chemo has finished. This means that it was (or is I guess) resistant to chemotherapy. Now they are going ahead with something that I knew was a possibility from the start, they call it salvage chemo, chemo they try when standard treatment doesn’t work. It’s all very rushed and so it’s been a bit of a whirlwind really, which is good, I don’t need time to worry and think, I like to be busy and be busy having treatment and such. 

As far as I understand so far, this next type of chemo (which is going to start tomorrow; when I say they have moved fast around this, I mean it!) is completely different drugs to what I’ve already had. It is called GDP and consists of high dose prednisone (a steroid) and gemcitabine and cisplatin which are chemo drugs. It’ll be delivered on day 1, and day 8, and then repeated on day 21, as long as I have recovered in time. I’ll have 2 rounds of this, then a repeat scan to check how things are going. If it’s working I will then have BEAM chemotherapy (which again is just another combination of drugs) for 6 days, followed by a stem cell transplant (of my own stem cells hopefully) to re-seed my bone marrow after this extra strong 6 days of chemo virtually kills it off. I’m not really sure on the timescale of these things, my wonderful consultant will be planning these things out as I type, that’s his domain and expertise and I trust him implicitly.

So, the shit side of things. This GDP chemo has about a 50% chance of working. Which is f*cking shit, let me be the first one to say that. If it looks like it isn’t working then I will be eligible for a very new, just-on-the-horizon treatment option called CAR-T therapy. But let’s cross that bridge if/when we get to it. 

I know everyone’s response to this news is going to be to want to message me with “I’m sorry”s and sympathy, but please don’t. It does not make me feel any better about this situation and it certainly doesn’t help it. It is something I have zero control over and you telling me you are sorry does absolutely nothing other than make me feel crappy. I intend to carry on with the same positivity and brightness as I have all year, taking each day as it comes. So please, by all means, message me and talk to me about this, but keep your sympathetic smiles and your “sorry”s to yourself please, and just talk to me like you always have! I’m still the same stubborn, strong-minded Lucy, nothing in the world will change that!

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Chapter 15: Things cancer has taught me…

I can’t sleep (chugging a litre of coke at the cinema pretty late tends to have that effect), so I thought I’d write a little on a topic that I’ve been thinking of a lot lately.

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I guess it’s odd to think of cancer as being beneficial in any way; it’s pretty detrimental by nature, but it does cause us to take stock and examine our lives with scrutiny, and let me tell you, a brush with death does wonders for reevaluating things. So here are some things cancer has taught me.

I am strong. Tell a girl she’s got cancer and you expect her to just crumble and dissolve. This didn’t really happen to me. I mean the initial conversation was pretty horrific; the kind of wording that makes your heart jump into your mouth, all sound in the room disappear and time stop, but after a few minutes of hyperventilating and feeling like someone had whipped the chair out from under me, I just sort of got on with it. Somehow I even fell asleep in a hospital ward and woke up the next morning to a completely different life. I’ve always been the type of person who is good in a crisis; I’m very good at viewing a situation objectively and seeing what needs to be done and with my own situation things were no different. I endured 7 months of horrendous high-dose chemotherapy, feeling iller than I thought was ever possible, multiple procedures that I wouldn’t have wished upon my worst enemy, giving the complete autonomy of my body over to other people, but I’m here, at the end of it, having been told time and time again just how positive I stayed. And I’m so bloody proud of myself for that.

I am confident. This is another strange one for me really. I wouldn’t have said that I was lacking in confidence before my diagnosis, I was comfortable with the person I was and I paid no attention to what others thought of me, but there is confident and then there is going out in public with no makeup and no hair confident. I can still remember the first time I went out without a headscarf on, it was to a B&Q (how glamorous) to buy a parasol (cheers chemo drugs for making me extra sensitive to the sun on the sunniest summer in years) and it felt so invigorating. I felt so powerful; a force to be reckoned with. After a few more trips out I even became so bold as to pull faces at the people who brazenly stared without trying to hide it (come on, we all know how to look at someone without making it look like you’re looking) and now I’m so used to seeing myself with little to no hair, that I’m going to keep it this short out of choice now that it’s growing again. I love this confident version of myself who feels feminine and sexy with what the world would deem a ‘masculine’ haircut.

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I am fearless. As for the fears part, I suppose it’s a bit like CBT; being forced to face your fears is a bloody good way to get over them. I wasn’t a particularly fearful person before, I did, however, have a few irrational fears instilled by an anxious mind and confirmed by panic attacks. If you’ve never developed an irrational, illogical fear, for any reason, then it’s a little bit difficult to explain. Without going into too much detail I developed an irrational fear of having an allergic reaction to something, caused by my first panic attack about 7 years ago. In particular, for me, it was the thought of having an allergic reaction and not being able to breathe (lol cancer for growing a 10cm tumour in my chest and making me understand what it really means to not be able to breathe), and at its worst, it would occupy my thoughts most of the day to the point where I would be constantly avoiding touching/eating/smelling things in case I had an allergic reaction to them (sounds silly now; at the time it was terrifying). I received counselling and CBT and after a brief stint on antidepressants alongside both, I managed to quell this illogical fear enough that it would only very occasionally and rarely rear its ugly head. I really struggled with new things that I hadn’t come into contact with before; new medicines were a particular difficulty for me. It took me about an hour to take my first antidepressant pill because I couldn’t stop the intrusive ‘what if?’ thoughts that I might be allergic to it, and yet for the past 7 months I gave consent to be pumped full of toxic substances that are known and actually expected to cause allergic reactions, and I didn’t even flinch. No worrying, no panic attacks. I even had a handful of real allergic reactions to said drugs. I didn’t die, I didn’t even come close, and I guess that’s all it takes for the brain to be reprogrammed.

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I am grateful. If I’m entirely honest, I was a bit of a whinger before my diagnosis, a real Debbie Downer. I had the whole ‘woe is me’ thing down to a tee. I focused on the negative in my life; what I didn’t have and was blind to the positive. If I could go back in time and tell my former self something I would slap her silly and tell her to appreciate the good things. When I was diagnosed there was one day, about a week after D-day, where I had a full-on ‘it’s not fair, why me’ meltdown, but I soon came to the realisation that nothing I could have done would have prevented this from happening and it is purely luck of the draw.

As Jen (Jen’s Cancer Chronicles) one of my friends from our ‘Badass Babes’ support group so eloquently put it;

“…I am not angry or sad that I got cancer, I am only grateful that it was found, and that it happened in a time in my life when I had the beauty of the NHS behind me and my lovely friends and family. Yes, I feel lucky. I see those flowers, butterflies and sunshine every day. Even if nothing seems like it’s going right, all it takes is a stranger to smile or hold a door open for you and there is something to be grateful for.”

I couldn’t have put it better myself.

And finally…

I am great at drawing my eyebrows on. If precision eyebrowing ever becomes a competitive sport, I could definitely bring home the gold for old Blighty.

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Chapter 14: Aren’t you happy you’re finished?…

Well, that’s it! It’s all finished.

70 nights in hospital.
41 clinic appointments.
14 blood transfusions.
12 platelet transfusions.
8 neutropenic sepsis’.
8 lumbar punctures.
5 high-dose chemo cycles.
5 x-rays.
4 trips to A&E.
3 allergic reactions.
3 CT scans.
2 central lines.

Definitely, way more time than any 20-something-year-old wants to spend in hospital.

I’ve had a lot of ‘Are you pleased that it’s finished?’, ‘I bet you’re really relieved now aren’t you?’ and ‘Isn’t it a weight off your shoulders?’ and to be honest I still don’t really know how I feel.

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I feel physically better than I have for the past 7 months and I’m supremely happy that I don’t have to have any more chemotherapy (for the time being at least), but do I feel relieved/happy/like a weight has been lifted? No. No, I don’t.

I felt pretty good mentally (surprisingly) throughout my treatment. I never succumbed to the thought that this might not work; I felt positive and hopeful. It’s not that I don’t feel positive and hopeful now, it’s more that I feel sort of lost and abandoned. I have had at least 2 appointments a week for the past 7 months and now I am well enough that I have been set free until my PET scan at the end of January. Which is a good thing I know, but when you’ve had that constant care and monitoring for so long, to now have nothing feels very unnerving. I feel like I don’t really belong anywhere at the moment. I’m not ill so I don’t belong in hospital but I’m not well enough to go back to work, so I’m just sort of floating in limbo until January.

I remember my consultant telling me that often it is after treatment that people begin to struggle with their mental health, and I remember thinking “How silly! I’ll be so much better after chemo finishes, not worse…” but she was right (of course she was, she’s the one in charge). I think it’s the unknown that is daunting. I have to spend the next 3 months not knowing how treatment has gone. I think it’s also losing that crutch of care from the hospital. Every little pang of pain or discomfort in my body immediately sends me into a headspin of worry. What if that’s the cancer?!?

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I have requested a referral to a therapist from my Nurse Specialist. Having spoken with my little group of cancer friends (we have dubbed ourselves the Badass Babes and they have changed my life for the better) they have all suggested this. I think it’s something that should be talked about more; counselling/therapy for or after cancer treatment. Anything to lessen the taboo of cancer in any way.

I think what I want anyone who is nearing the end or has just finished their treatment to take away from this is that you’re going to have a lot of people expecting you to be feeling better now, but it’s okay to not feel okay 🖤

Chapter 13: Chemo Brain 2: The Return of Forgetfulness

I forget everything these days. I mean EVERYTHING. In fact, I started this blog post 2 days ago AND THEN BLOODY FORGOT IT.

When I was going through chemotherapy the symptoms presented themselves as general mental confusion and fogginess and a lack of interest in just about anything that I used to enjoy. I found it difficult to follow conversations; especially if music or the TV was on in the background. It was like suddenly I didn’t speak English. I could see the mouth of the person who was talking to me moving, and sounds were coming out, but it just went straight in one ear and out of the other. Language error 404, not found. I explained to my friends and family that I was sorry if I seemed distant or moody, but it was scary feeling so overwhelmed by the smallest things like holding a conversation. I would find myself just nodding and saying ‘yeah’ and hoping that they didn’t realise that I had no clue what they were talking about.

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If that was ‘Chemo Brain’ the movie, this is the the sequel ‘Chemo Brain: The Return of Forgetfulness’.

Over the past few weeks, I have realised just how awful my short-term memory is now. I don’t have any problems with the long-term things like what my name is or what year it is (most of the time… I did almost put 2019 on a form a few months ago…) but the really short-term stuff I really struggle with. Every day I have pills to take in the morning and in the evening. Every day I get up and I stare blankly at my pill organiser (that has those compartments for the days of the week) with absolutely no idea what day I have just woken up to. I try to think about what I did yesterday or what day it might have been then and most mornings I come up completely blank. It’s like the previous day’s activities have been erased from my hard drive; just a black void where my memories should have been. I can only tell what day it is by using the previous day’s pills as a guide, and the one day each week where I wake up to a refilled pill organiser good old Google helps me out.

I have a million lists on my phone for things I have to do or to remember, and then I will set a reminder if it’s something that needs doing at a certain time otherwise I will forget. I can think of something important and in my head go ‘oh yes, that’s important, I need to do that’, but if something distracts me before I can write it down WHOOOSH, it’s gone. For maybe a few hours, maybe a day, who knows. It’s so frustrating. I know I’ve forgotten something that was literally just there in my mind but the harder I try to think of it, the more annoyed and anxious it makes me feel, so I try to just move on and hope it zips back into my head at some point.

The other night I was running a bath. The bath-tub is one of those ones that has twisty dial taps and a twisty dial for the plug open/close. I had both taps running. I wanted to stop the cold tap. What did I do? I opened the plughole and left both taps running. Did I sit on the bathroom floor for 5 minutes wondering why the bath was taking so long to fill? Yes. Yes, I did.

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Chapter 12: Chemo finito

I 100% have been avoiding updating this blog, so apologies for that, but it’s one of those sorry, not sorry moments. I just wanted a break. I have just checked and it has been nearly 7 weeks since I posted anything and there is one major difference now; chemo has finished. I could still honestly cry when I think about that phrase and how it makes me feel.

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So what’s happened in the last 7 weeks? Well, I had another middle-of-the-night trip to A&E for some mystery back and chest pain (I low key thought I might have been having a heart attack) but they couldn’t find any cause so after a mere 9 hours I was sent home. My last admission to hospital for chemo (or so I thought) then came earlier than I wanted (the next day). A miscommunication between various parties meant that my chemo was prescribed already and I had a surprise phone call saying that they had a bed for me (a whole three days early, lucky me) and so the final round began.

Day 1 Chemo
2 Chemo
3 Chemo
4 Chemo
5 Chemo
6 No chemo! (But 7th lumbar puncture boo 👎)
7 No chemo!
8 Chemo again…
9 2 units of blood
10 No chemo!
11 Fluids began in preparation for yet more chemo
12 LAST BAG OF CHEMO (and fluids)
13 Temp spike (surprise, surprise) so antibiotics started (and fluids)
14 Unit of platelets (and fluids…)
15 Fluids still going…
16 Yep you guessed it, more fluids
17 FINALLY ALLOWED HOME

So much easier than typing it out, why wasn’t I doing it in table form from the start?!? The last bag of chemo was the one I had serious anxiety about. It’s a drug called methotrexate and it’s given in one high-dose, 24-hour infusion and is proceeded by intense hydration for the following 4(ish) days until the amount in your blood drops below a specific threshold. And when I say intense hydration I mean it. I’m talking about weeing out nearly 7 litres in 24 hours. If you thought it was difficult to sleep in hospital ordinarily try having to get up every 2 hours to piss like a racehorse. But that’s not the reason I was really dreading it, it was because it nearly always causes mucositis which, in case you can’t remember from the last time I had it, is “painful inflammation and ulceration of the mucous membranes lining the digestive tract”. Just think about those words for a second. Think about where the digestive tract starts. And where it ends. And now imagine ulcers in all those places. Yep. V̶e̶r̶y̶ ̶p̶a̶i̶n̶f̶u̶l. Complete and utter agony. It was actually worse this time, which I wouldn’t have thought was possible and lasted 2 whole weeks. Two fucking weeks (pardon my French). All I ate was ice-cream and soup for 2 weeks. Swallowing felt like shards of glass and for 3 days I couldn’t talk. Oh, and my nose bled all the time because there were ulcers up there too, so that meant two more units of blood and another unit of platelets. I also had to have my 8th and final lumbar while feeling totally pants, but I was ecstatic that they were all finished and that I wouldn’t have to have any more. I hope you never have to endure one lumbar puncture let alone eight.

If you’ve not experienced chronic pain that lasts for a substantial period of time let me tell you it really tests you as a person. After I was discharged from hospital I still had my twice-weekly clinic appointments at my cancer unit and they could tell instantly just how much pain I was in and how utterly shite I felt from my demeanour, and surprise, surprise I ended up back in the hospital again after another temperature spike #frequentflier. Three days of antibiotics and I was sent home. FOR THE VERY LAST TIME.

I have one more day of treatment left in six days time. It’ll be my 8th and final dose of rituximab, which is the chemo-that-isn’t-really-chemo stuff. It’s that immunotherapy/target therapy drug that tricks my own immune system into hunting down those pesky cancer cells and unceremoniously evicting them from my person. Although the nasty stuff, the real chemo, has already finished, next Thursday will still be a pretty momentous occasion; the last treatment. The last time chemicals are pumped into me. They’ve even said that they can take my PICC line out (consultant permitting) as soon as the infusion is finished so I can finally be less Borg, more human.

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Addendum: my consultant’s name is Dr Borg which as a Trekkie has pleased me greatly.

Chapter 11: Using social media for good

The last couple of weeks I have been throwing myself into seeking out support groups and charities, and finding other young women with cancer, mainly because I’m so damn bored. I am waiting for my blood counts to recover (once again) so that I can be admitted back into hospital for my last chemo cycle (love saying that). Being ill, but not feeling ill, is one of the weirdest parts of this. Right now, I feel relatively ‘normal’. I’m currently day 29 post-chemo, so all of the side effects from the last cycle have ebbed away and I don’t really feel unwell at this point other than feeling tired (all the time; it really doesn’t go away), so having all this time on my hands is just dull as dishwater. I mean I know I’m supposed to be giving my body time to heal and taking it easy, but there’s only a certain number of hours a day that you can watch Netflix without losing your mind…

So, as I was saying, these past few weeks I have never appreciated social media more. People complain a LOT about it and it can be used in the wrong way, yes, but in particular, Instagram has honestly made such a difference to my life recently, which is something I never thought I would say. A simple search either for users or for hashtags can put you in touch with hundreds of others who know exactly how you feel and exactly what you’re going through, and having other wonderful people with cancer on my timeline showing their lives just like I do just makes the whole thing feel so much more normal. Private Facebook groups such as Cancer Chicks created by the blooming lovely Olivia (@oliviarosesmithx @cancer.chicks on Instagram) are a safe place to bitch or complain or ask a question, or even just have a laugh at something silly chemo brain has made you do. So here is my guide to finding support on the internet and social media.

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1. Instagram – Broad hashtags like #cancer or #girlswithcancer will bring up millions of results so I’d suggest going with something a bit more specific. Search for your type of cancer, be as specific as you like. I have searched for #lymphoma as well as #nonhodgkinslymphoma and even as specific as #diffuselargebcell. It’s a great way of discovering others that may be going through the same treatment as you. Sometimes you can find accounts devoted to featuring others with cancer, this can also be a good way to seek out people. In particular, some of my favourite accounts are @cancer.chicks @shinecancersupport @cancerqueens and @bebodybrave.

2. Charities – There are lots of charities out there that are very broad-scale and cover all the types of cancer, for example, Cancer Research UK, Stand Up 2 Cancer and Macmillan are 3 of the big guns. Then there are charities that deal with your type of cancer, so for me, with Lymphoma, there is Lymphoma Action, Bloodwise and Lymphoma Out Loud, to name a few. There are also lots of charities that target young adults with cancer such as Shine Cancer Support and YouCan Youth Cancer Support. Seek out these charities either in person or via their website and have a good look around. Some of them have sections devoted to those that have a friend or loved one with cancer. Lots of them have support groups and forums you can join; they might offer meet-ups or retreats or workshops; they may offer financial support or help with things like travel insurance and there could be private groups you could join which leads me onto my next point;

3. Facebook – Similar to Instagram it’s really about what you are looking for. You can often find links from charities’ websites to private Facebook groups that you can join, or you can do a search on Facebook itself. There are hundreds of groups, groups that are for cancer in general, groups that are for your type of cancer, or young people with cancer. Groups for geographical areas or treatment types. Get on there and search. Some of my favourites are Cancer Chicks for young women with cancer and Shine Young Adult Cancer Support. They are places you can ask for advice, find others local to you or even just moan about something to people who understand.

4. Podcasts – Recently there has been a boom in the popularity of podcasts which is great! Hearing someone talk about cancer or life with cancer so candidly and unafraid can be so cathartic. Often friends and family can be a bit freaked out about saying “the C word” out loud (I tell them “it’s not like Voldemort, you can say it”) and if we want to remove the stigma it should be talked about without fear or hesitation. You, Me and the Big C is a radio 5 podcast that has gained particular notoriety, and for good reason. In their words, “The coolest club you never want to be a part of… The women of the You, Me & the Big C Podcast are your BFF’s, your sisters, daughters and mothers. They are you…but with dodgier cells and they’re too busy living to worry about dying.” Another great podcast I have come across is Not Your Grandma’s Cancer Show, but it’s really about preference and what you want to listen to. 

You might feel like you have enough support from your friends and family, which is fabulous if you do, but sometimes you just want to talk to someone who knows what it’s like in every way; someone who’s current version of ‘normal’ matches yours.

 

Chapter 10: Brain soup 🧠 & what not to say

Previously on Lucy & the big C…

I wish my blog came with its own TV-series-style voiceover at the start giving a recap of last weeks episode! 😂

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I am extremely happy to say that I am 100% back to my normal, positive, chipper self and that the changeable mood and brain fog have lifted! Turns out it was just another symptom of the chemotherapy; something that I hadn’t really considered until speaking with another patient during my recent long weekend getaway back at the hospital (stay tuned for more on that…).

They call it ‘chemo brain’, which in my opinion trivialises it and makes it seem a lot less scary than it really is, and it comprises of any (or most in my case) of the following symptoms:

  • memory loss – forgetting things that you would normally remember
  • difficulty thinking of the right word for a particular object
  • difficulty following the flow of a conversation
  • trouble concentrating on more than one thing at a time (multitasking)
  • more difficulty doing things you used to do easily such as adding up in your head
  • fatigue
  • mood changes
  • confusion
  • mental fogginess.

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How I feel during intense brain fog moments…

I don’t think doctors and researchers are entirely clear what causes these problems, or are even sure what percentage of people going through cancer treatment struggle with these problems; I guess that’s because its not exactly something that can be quantitatively measured. For me anyway, I have experienced every single one of the symptoms listed above. The most difficult ones for me to deal with were the mental fogginess and the confusion; I felt completely numb in my head and I didn’t want to do anything. It was like having a dark cloud over me making me feel confused and worried over nothing. The difficulty in thinking of the right word has been a problem for me since my first round of chemo; it’s so frustrating to not be able to articulate yourself, especially when you know that you know the word you are trying to find, but its like someone has doctored the list of vocabulary in your head with a thick black marker pen so you know the word is there but you cannot read it (funnily enough I sat here at my laptop for a few minutes before I could find the word ‘articulate’ in my head for this paragraph 😂). I have been taking supportive meds alongside my treatment now for 5 months and yet I still forget most mornings and most evenings. I tried to calculate what time I needed to set an alarm to get up for a clinic appointment about a week ago and I just could not work it out in my head. I knew what time my appointment was, but could I work backwards from 10:30 to give myself enough time to get up, have breakfast and drive there? No, I couldn’t. It’s honestly scary.

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You & me both, Winona

Pretty much my whole life up until this point has been studying, having got my Master’s degree in December 2017, and I love that I am intelligent and that I like to use my brain and learn new things, so to struggle to do the simplest tasks is kind of terrifying. The mood swings are another symptom that I hate. I think my friends and family sometimes find it easy to forget that I’m not just being ‘stroppy’ or ‘antisocial’ and that my brain chemistry is being altered by all the drugs I am on. I mean, once every few weeks my brain is literally being marinated in chemotoxic drugs via intrathecal (lumbar puncture) injections. My brain sits in a soup of cerebrospinal fluid and cytotoxic chemicals. What a mental image.

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A week ago I went for my bi-weekly blood test and checkup and never came home. Hello, neutropenic fever my old friend. Cue the start of a course of IV antibiotics, an 8-hour wait for an ambulance transfer to my treatment hospital, 4 days on the ward, 2 platelet transfusions and 2 blood transfusions. The staff on my ward at UHCW must think I can’t stand to be away from them! (Jokes aside, they’re bloody fantastic).

I’ve also started to compile a list in my head (if I don’t forget it 😂) of things not to say to someone with cancer, and here are some of them:

  1. “If you’re gonna get cancer, it’s one of the best ones to get.” – I’m sorry, what?!! How is any cancer a ‘good one’ to get, and what even makes a cancer a ‘good’ one?! Funnily enough, I was actually told this by a consultant, near the beginning of my treatment, when I had was in A&E!
  2. “You’re such an inspiration! / You’re so brave!” – I know what you mean when you say this, but bravery is something that happens when someone chooses to confront something scary and this was no choice for me. The same goes for telling someone that they are an inspiration – it is not my job to inspire other people – I’m literally just trying to not die. It’s too much pressure to put on someone who is ill and it makes them feel like every day has to be an up day and that having a down day isn’t good enough because it’s not ‘inspiring’.
  3. “You look so good! / You don’t look like you have cancer!” – I’m not really sure what ‘someone with cancer’ looks like, but saying this doesn’t really help at all. Are we all supposed to lose our hair (okay, I did that…), lose weight (okay, I also did that…) and become a shell of the person we used to be?! Until I was diagnosed I was walking around looking ‘normal’ and had no idea that I was full of cancer. Not every person who has chemotherapy will lose their hair and not every person will look ‘ill’. We need to get over the mindset that cancer is a visible illness, because often it is not. If someone says they have cancer, believe them, regardless of how they look to your eyes.
  4. “I know someone who had that / My *insert relative here* had that.” – This one really gets under my skin. There are more than 200 different types of cancer that are understood at the moment, as different from each other as a broken leg and the common cold. There are more than 90 different types of Non-Hodgkins Lymphoma alone. I have an uncommon subtype of NHL; I have diffuse large b-cell lymphoma (DLBCL) that has the presence of the gene BCL2, meaning that the standard treatment for DLBCL would be unsuccessful. Therefore telling me that your “Uncle’s best friend had lymphoma 30 years ago and is fine now” is not helpful in the slightest. Each subtype of cancer, of which there are thousands, has a different line of treatment, and each person reacts completely different to this treatment. Just because Sally who works with your Mum went into remission, and has been cancer free for 10 years, doesn’t mean that the same will happen for another person with the same disease.
  5. “Stay positive.” – This one is heard the most and really, really bugged me near the start. I do not need you to tell me to stay positive in order for me to do this. Your ‘advice’ on this matter isn’t helpful. It’s not like I was wallowing in a corner feeling sorry for myself until someone had the genius idea to tell me to “stay positive”, and then suddenly my whole outlook changed. This also makes people with cancer feel like it’s not okay to wallow in a corner and it is. I have had bad days. I have cried until I couldn’t breathe and those days are needed and valid. Don’t let other people tell you how you should feel.

Anyway, let’s bring the mood back up again. I’m so close to my last round of chemo I can almost taste it (not a good analogy, chemo tastes horrible). Hopefully, I will be back in hospital to start it within the next week or so; not something I thought I’d be looking forward to but the sooner it’s started the sooner I am finished with treatment!

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Chapter 9: Three down, one to go

I’ve been putting off writing this next update for the past few days because recently I have not felt like myself at all, not even a little bit. Funnily enough, having chemotherapy isn’t all sunshine and rainbows. Tuesday the 24th I was admitted back onto the ward for my 3rd dose of poison; luckily my bone marrow decided to recover just in time for me to avoid a bone marrow biopsy, something I really did not want to happen, but because it took nearly 7 weeks for me to recover since the last cycle, my consultants decided to dose-reduce this latest one by 25% – the goal here is to cause as much damage as possible to the cancer, but still leave me able to recover afterwards. There was a slight SNAFU with pharmacy not reducing the dose on some of the chemo which meant that it was delayed a further day, but come Thursday 26th I was back on track and hooked up.

Having already had this cycle of chemo once before, called R-IVAC, I knew what I was getting myself into, I knew exactly how it was going to make me feel, but it didn’t make it any less abhorrent. Even thinking about it now, writing this, makes me feel nauseous. There really is no way to describe how you can taste the chemicals from the inside of you while they’re being pumped in at speed, and for me, the nausea is the worst side effect by far. I couldn’t think about food, couldn’t smell it, or see it, let alone eat it. But on the plus side, I managed to eat small things here and there between the bouts of nausea and vomiting (8 times, personal record), and I only lost 3kg over the week (cue the dieticians panicking though).

Just to keep things interesting I decided to throw in a couple of temperature spikes up to 39°C which were most likely caused by one of the drugs, but when you’re undergoing chemotherapy there are no chances taken so I got to enjoy 5 days of IV antibiotics alongside chemotherapy. Such fun.

My mental state of mind was very turbulent this time. I’m not sure if it was caused by the drugs, I know they can cause mood swings and confusion, but I felt pretty down and anxious. I wanted people to visit me, and then as soon as they arrived I just wanted them to leave. I didn’t want the fussing and the attention, which I know is only out of love, but my whole world was that one room and the drugs and me feeling awful, and the last thing I wanted to do was talk about it more when people asked how I was.

It’s been just over 4 months now since I was diagnosed and I’ve totally had enough. I don’t want any of this any more. I’m sick of feeling ill, I’m sick of looking ill, I’m sick of the attention and the appointments, and the check-ups. I have one more cycle of chemo and then that will have been the 4. Then I’ll have an agonising wait to look forward to before they repeat the PET scan and I get the verdict. Speaking of PET scans, I don’t think I ever posted the images from the first one, before treatment had started, and now is as good a time as any.

So, both images are cross-sections, the left image shows my chest, the right shows my abdomen. In the left image, you can see my spine towards the bottom, my sternum at the top, and my lungs are those big black voids. The big, glowing mass that pretty much reached from sternum to spine? That’s the tumour that was taking up most of the space in my mediastinum. The right image shows my abdomen, again you can see my spine at the bottom, and the sides of my pelvis, and a big ol’ glowing tumour. The repeat PET scan, which will happen sometime in October, should hopefully be as dull as dishwater. No glowing at all. That’s what we’re aiming for.

Chapter 8: In limbo

I am stuck in limbo. I have had more than a month now out of hospital since my last cycle of chemo, waiting for my body to recover enough that I can go back in for my next one. It’s strange because I feel the most well and healthy I have felt since before all this started, but it’s apparent from the bi-weekly blood tests that my body is taking much longer than expected to recover this time. My bone marrow has taken a beating from the concoction of chemicals pumped into me and currently refuses to produce an adequate amount of blood cells. I am halfway through my treatment, and somewhere close to going back for the next lot, and I am not in any way complaining about having had so long to recover this time, but it is just delaying the inevitable. I get myself mentally prepared and psyched up for being readmitted and then my blood results aren’t up to par and so the date moves on a few days… And then the process repeats. I am stuck in limbo.

It’s also since feeling well and healthy the last few weeks that I have found myself feeling more and more impatient that this is my life currently. When I felt lousy and exhausted it was easy to accept that I was a sick person, but now that I’m feeling like my old self I find myself really angry that this is my life currently. I’m done with the lack of privacy about my health, I’m done with everybody knowing everything, with being checked up on and I’m sick of talking about hospital and treatment and cancer. I’m sick of people sending their love or hugs or asking after me. I want to be a normal 27 year old that doesn’t require this much attention. I want to feel like I’m 27, not 7.

It’s not that I’m not appreciative of the amount of support I’ve received, even from people who I’m not that close to or people I was at school with, it’s more that I don’t want to need the support anymore. I just want to be able to get on with my life instead of feeling like everything for me has frozen in time and everybody else is busy getting on with their lives. I am stuck in limbo.

Chapter 7: Sun, sea & sensational news

I’m now officially half way through chemo! *jumps for joy*

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I was discharged the day after my last rant blog post. I have now had 2 weeks at home to recuperate and stuff my face – the longest I’ve had out of hospital in 3 months! I’ve done lots of sleeping, lots of eating and lots of slapping on factor 50 and sunbathing. Chemo makes your skin extremely sensitive to the sun, as well as making it thin and dry and just generally gross looking (hello wrinkles that weren’t there before). After my last prison stint of 3 weeks, I was ready to fight the consultants if they didn’t give me a long break at home before trying to get me back in. Luckily for me (I so would have lost that fight) they explained at today’s clinic that the previous 2 rounds of chemo (we’ll call them A and B as they are entirely different drugs and schedules) they almost treat as 1 super-round of chemo. So whereas between A and B it wasn’t that important for my bloods and body to recover, it was more important to stick to the schedule, between the first A and B which I have already had and the second, which I am soon to start, they have to let the side effects subside and leave enough time for my blood counts to come back up to normal. I am not complaining in the slightest – give me more time in the sun, please! 🌞

Friday to Sunday we went down to Devon and it was glorious! Sunny and relaxing and just what the Doctor ordered (well, they said I could go away as long as I was within an hour’s driving time of a good hospital 😂). We stayed in a lovely farmhouse B&B between Exeter and Sidmouth and drove around the coast visiting different towns each day. It was so nice to just be ‘normal’ and eat lots of good food. I managed to put 1.7 kilos on between last Thursday’s appointment and today’s! Looking less skeletal and sickly is a good thing!

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Today I was also given the amazing results of a CT scan I had last Tuesday. Prior to the scan, my consultant had said that he would hope the scan would show a 60-70% reduction in the size of the tumours. The report from the radiologists stated that the tumour in my chest was reduced by 80% volume and that there were no masses in my abdomen – which means that the 2 that were there have gone! *cue more jumping for joy*

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I also finally got the lavender wig of my dreams 💜, so all in all I can say this past week has been bloody great!

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