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 tooΒ 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.Β 

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.

 

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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! πŸ˜‚

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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 πŸ˜‚). 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 πŸ˜‚) 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 39Β°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.