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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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Chapter 6: Feeling deprived

For those of you hoping that this is another update, I’m sorry to disappoint you. One will be coming as soon as I’m out of hospital again – I’ve been in here since the last blog post – day 20 and counting…

This post is more of a general rant / things I’ve realised while being in here for this length of time. Now, I’m fully aware that there are people out there who do much longer stints in hospital than 3 weeks, but this is the longest run I’ve ever had. It’s halfway through June practically and I haven’t seen any of it.

I’ve become very aware, especially today, that as well as being boring and repetitive and frustrating, hospital is a very isolating and depriving place. You are forced into a routine that you don’t want. You have very little choice over the meals you can eat. You cannot get a full nights sleep without being woken multiple times. You have no sense of the weather outside.

This evening, after being moved to a different room for the fourth time this stay, I sat on the window ledge and looked out at the same view I see from most rooms. The sky was the most gorgeous shade of soft pink and I could almost imagine being sat out in the warm evening air just listening to the sounds of the evening. If I concentrated really hard and got right up close to the window I think I could hear the birds outside, or maybe I was just hoping I could…

 

I could see people across the other side of the building with their windows open and I was so envious. The windows are screwed shut in the oncology and haematology wards to keep the rooms as sterile as possible. I never thought a room could be so silent and so noisy at the same time. The only sound I can hear is the whirring of the ventilation system, constantly replacing the air in the room with fresh. Sure I have TV and I can listen to the radio or music on my phone, but I miss the sounds of normal life. I miss birdsong at 4am. I miss the sounds of traffic passing the house. I miss dogs barking and people talking and the wind in the trees. I am counting down until I can stand outside and just listen.

 

Chapter 5: The end of the (Hickman) line

So I really didn’t plan on leaving it this long before posting again, but that’s just how life goes! So when I last left you it was three weeks ago and I had just got my wig. Safe to say I have worn it all of once since then!

So the following day to my last blog post I was admitted onto the ward in order to start my new chemotherapy regime. Seven nights in total I was in before they let me go home, and six of these days involved chemo drugs. It was awful. Totally awful. The first and second days of chemo I didn’t feel too bad, in fact, I felt pretty good, these were different drugs to the previous round and I thought that perhaps they wouldn’t have much of an effect on me. I was very wrong. The first day involved just one drug called rituximab, which I have had before and is what they call a monoclonal antibody. In simple terms, it labels a protein on the cancer cells and forces my own antibodies to attack the cancer. The second day involved a new batch of drugs and these ones are the real chemo drugs, the stuff labelled ‘cytotoxic’ which literally means toxic to living cells 😬. It was a full-on schedule with three different drugs repeated at different intervals for the next four days. I’ve never felt so sick before.

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The third day of chemo I couldn’t keep any food down (not that I even felt like eating anything) and I slept pretty much all day. Days four, five and six were not much better, they pumped me full of anti-sickness which didn’t really help much and just made me so woozy and dizzy that I couldn’t sit up even if I wanted to eat. When they admitted me on the Tuesday night onto the ward, I weighed 52kg (8 stone 2 pounds) – I had already lost weight up to this point albeit slowly over months, just a side effect of lymphoma. When I left hospital on the following Tuesday I weighed 48.8kg (7 stone 9 pounds). This is a whole stone lighter than my healthy normal weight and when you’re only 5 foot 5 7 stone 9 is not a good look. Skeletal is not sexy. After a week of lying in bed and hardly eating, on top of six days of toxic chemicals being pumped into my body, I struggled to stand up in the bathroom in the hospital long enough to wash my hands after using the toilet and I would have rush the five steps back to bed to lie down again. Feeling that weak, and totally exhausted and sick is horrible. The hospital is pretty big, and the Haematology ward is on the third floor, so a wheelchair was very needed to get me back to the car and home!

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My first day home I spent the entire day on the sofa. I still felt pretty sick and nauseous but it was so nice to be home. I mistakenly thought that I had gotten over the worst for the time being until the next round in a few weeks. I was wrong again. So the type of chemo that I am getting requires intrathecal injections, which is when they inject chemo drugs into the cerebrospinal fluid via a lumbar puncture. Now, I had already had one a few weeks ago, and it had gone down relatively painlessly. That wasn’t the case this time. The doctor tasked with carrying it out struggled, due to my anatomy and lack of flexibility in my spine, and ended up asking my consultant to come and do it after a few tries, which was a bit of a nerve-wracking experience, but once done it was all fine. The first time you have a lumbar puncture they make sure that you lie down for at least four hours afterwards and that you drink lots, so as to avoid getting what they call a ‘low-pressure headache’, and then with subsequent lumbar punctures most people are fine lying down for just one hour. Not me (obviously). I lay down for an hour and then slowly sat up thinking ‘oh this’ll be fine’. It wasn’t. A few steps down the hall on the way back to the car and I had the worst most blinding headache I’ve ever experienced. Think of the worst hangover headache times a million. An hours journey back to home in the car where I couldn’t even open my eyes because of the light and had to be driven in silence, followed by violently throwing up once home, and then I spent the next few days not even able to sit up or stand at all. Not enjoyable in the slightest. The headache lasted ten days in total before it went. I’m not sure which was worse, the sickness and nausea from the IV chemo or the blinding headache from the lumbar puncture.

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Two days after the lumbar puncture I felt a little strange during the day, not unwell, just a bit cold and shivery. I had a friend over to visit (hey Emma my love, thanks for coming! 😘) and then in the evening when I did one of my many daily temperature checks discovered I had a temperature of 38.2°C!!! 😧 One phone call to the haematology ward, one phone call to 999, an ambulance ride to the hospital (still have the headache here remember 🤮), six hours in a&e having IV antibiotics, one attack of the rigors (which is like the most violent shivering you can imagine), one chest x-ray and eventually at 8:30am admittance onto a ward. When you have chemotherapy it impairs the body’s ability to create new blood cells. I’ve talked about one type of blood cell before, the neutrophil, that helps the body fight off infection. So when your blood counts drop, and you catch some kind of infection it is VERY dangerous and they call it neutropenic sepsis, which hospitals take VERY seriously, hence the ambulance and immediate IV antibiotics.

As well as my neutrophil counts dropping, so too did my platelet and haemoglobin counts, meaning that I had my first blood transfusions. I was given two units of red blood cells and one unit of platelets. I’ve never been so appreciative of people that are able and willing to give blood – a massive thank you to all of you!

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From blood tests, they discovered that the infection was in my Hickman line, something I am told is very common because it is a foreign object in the body, and that the infection was caused by a type of bacteria that is penicillin resistant, so they changed the antibiotics I was on, which I then had an allergic reaction to 😂. I mean if something is going to happen it will happen to me… My consultants then decided that the best thing to do would be to take the line out, to completely remove the source of infection. Again, this should have been a relatively easy process; with the line having only been in my body for three weeks they had presumed that it wouldn’t have taken too much and would more or less just pull out… Nope! An hour and three different members of staff later it was out and the following day I was allowed to go home with a weeks supply of antibiotics. That was six days in the hospital that I really could have done without because I’ve been home three days and tomorrow they’re fitting me with a new line and admitting me afterwards onto the ward for the next round! I know that the sooner this is all done, the better, but I would liked a few more days in the sun!

Chapter 4: Bald is beautiful

So nearly another week has passed already since I posted! You know what they say, time flies when you’re back in hospital (not), more on that later…

Last Tuesday I went in to see the consultant and he gave me the low down on the new plan of attack. It’s going to be pretty brutal and will involve stretches of at least 10 days as an inpatient where they deliver the chemo over 3 or 4 days, followed by days of monitoring. It’s an entirely different type of chemo from the round I have already had; it’s actually going to be 2 different types that will be alternated. They have decided that because it’s such an aggressively growing cancer, and because it has already started to spread slightly outside of the lymphatic system, it needs more than the standard treatment. It’s going to be 3 times as strong as the round I have already had and so I am very much not looking forward to that! 😖 They obviously think I can handle it though, otherwise they wouldn’t be trying it! 💪

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One of the side effects of chemotherapy is that it can slow, or stop altogether, your bone marrow from creating new white blood cells. In my case, this happened. One of the types of white blood cell is called a neutrophil. They are the first line of defence against infection; they flood the site of infection and destroy bacteria. A normal count is between 3 and 7, and I was told that my count was 0.19, which obviously put me at very high risk of catching an infection or virus.

Wednesday last week was one of my busiest days in a while! I had an echocardiogram (heart ultrasound) in the morning, then had to go somewhere else to collect injections that I’d have to give myself to try and bring my neutrophil count up, an appointment at yet another place in the afternoon to see the reproductive specialist and then back to the first location to collect a new mouthwash! 😂 The heart ultrasound is standard practice for patients on chemo; they take an ultrasound at the start of treatment and then repeat them periodically to check that no damage is occurring from any of the drugs. The reproductive team have also prescribed me an injection (yay more 😑) that will put me in a medical menopause to reduce the damage to my ovaries. Normally they would have put me through 1 round of IVF and harvested eggs but my first round of chemotherapy couldn’t wait so this is the only option we have now. No periods for a while though, so that’s a bonus!

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Thursday was more eventful than I would have liked. I went into my cancer unit for a lumbar puncture, which all went down without a hitch, and wasn’t actually as bad as I had imagined it was going to be, but never left the hospital after that. My temperature spiked and they took blood and my neutrophil count had dropped to 0, so they decided to admit me back onto the ward just to be safe and put me back on the antibiotic drip.

Friday was the surgery under local anaesthetic to fit my central line. This means that I don’t have to keep being poked over and over again to get blood or administer drugs which is great! The process of having it placed was pretty intense and unenjoyable though. I couldn’t see what was happening, they covered my eyes, and it was numbed with a LOT of anaesthetic so there was no pain, but there was a lot of pressure and pushing, and the odd feeling of things being moved inside your body. It didn’t help that I was hooked up to a monitor and so I could hear the beeping of my erratic heartbeat echoing around the theatre. An hour later it was done! An x-ray to check the placement and I was back on the ward.

Sunday they finally let me out again after being 100% that there wasn’t any infection and my neut count had started to climb again. The positives of being in hospital? Not having to inject myself. The negatives? Constantly being woken up. They say that a good night’s sleep is the best thing for you when you are unwell, and then they never let you get any decent sleep because they wake you up every few hours to do observations, or take blood, or hook you up to another drip! At least I’m getting to know the staff on the ward a bit better! I had already decided that as soon as I was home from hospital my hair had to come off. By that point, I could run my hands through it and come away with huge clumps, and I couldn’t just leave it and end up looking like Cynthia from the rugrats! 🤣

So I buzzed it short with clippers and then we shaved it with a razor! It’s the strangest feeling! I keep being told I have such a lovely shaped head! What an odd compliment – but a nice one!

This morning I went to collect my wig from the wig people. They had been so good and had ordered in lots of styles that they didn’t have in stock on our previous visit, and as soon as I put the right one on I just knew ‘this is the one’. This is the wig that I get free on the good old NHS (it would have been £180 if I’d had to pay!!). I’m still holding out for that dusty lavender babe from Webster Wigs though…

So in 24 hours, I’ve gone from hair, to no hair, to having removable hair!🤣

Chapter 3: Gettin’ wiggy with it

This past week, since I was freed from the hospital following chemo, has been really up and down. I was told that 7 to 10 days after chemo I most likely would feel really tired and exhausted; my blood count would drop really low and then would start to rise again in the days following, but I didn’t really put 2 and 2 together until I was visiting a friend on Saturday, feeling like death, and I worked out that it was day 8 post-chemo. If you think you’ve been tired before, let me tell you, you don’t know tired. I have felt tired before, the kind of tired after a 10-hour busy bar shift on your feet, where you feel like you probably shouldn’t be driving home without having a nap first. I would take that kind of tired over how I felt 4 days ago in a heartbeat. Chemo tired is like your body weighs tonnes; like holding your head up and supporting yourself to sit upright is too much. All I wanted to do was lie down. I felt like my body wasn’t mine like someone had put me inside this weak, feeble body that was exhausted to the core. It has taught me that I need to do less and just listen to what my body is telling me in the days following my next chemo.

I’ve been lucky so far (touch wood) with regards to symptoms. When they listed the possibilities to me (it’s a very long list) I thought ‘Oh god, please no’ to most of them, like loss of taste and smell, mouth sores, nails falling off, skin peeling off, tingling and loss of feeling in hands and feet and lots other delightful things. Either the chemo drugs, or the high dose steroids I was on alongside them, gave me the most excruciating jaw and mouth pain, but luckily that has subsided now and I can eat and drink like normal. It was like all the muscles in my jaw, mouth and throat swelled up and became inflamed, and all the taste buds and nerve endings in my mouth became over-sensitised. Putting a single piece of plain broccoli in my mouth and letting it sit on my tongue was like an explosion of pain and my mouth would water and my eyes would run. But like I said, it’s stopped now so that’s a positive at least.

The thing is with me being one of the more high priority patients in the haematology/oncology unit (because of how bad things were prior to the first chemo), I have found that they are being very over-cautious with any extra symptoms that I have. I’m not complaining in the slightest, I would much rather they be this way than they were under cautious (is that a phrase?). But it meant that when I had a funny moment and felt like I was going to pass out of course they wanted me to go to a&e to be checked out. I was fine, apart from a slap on the wrist for not drinking enough and being dehydrated. 3 litres a day is a lot!!

I also went to see, as I keep referring to them, the wig people. Sounds like an alien race about to invade the planet. It was not what I expected to be honest.

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I had imagined that I would try on a longish wig, shorter than my hair was at that point, and it would look great! It didn’t. I tried on a few that were shoulder length or a bob and they looked horrendous. I mean just awful. They made me age about 10 years instantly, and they looked like wigs. Like big fake hair. That’s not what I wanted at all. I mean I know everyone who knows me will know that it’s a wig, and that doesn’t bother me, but I don’t want to be out in public and have a complete stranger know that it’s a wig because that kind of defeats the point. Anyway, tried on some shorter styles, like I used to have my hair, and they looked pretty good and realistic! They’re going to try and see if they can get the style I like in red too so I can have my red hair again without any of the damage! I think I will still buy a wig in some extravagant style and colour to have also; I’m thinking dusty lavender… 😍

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I also went and had my own hair cut off short too before it starts to come out in clumps. It’s quite ironic to have to cut my hair off before I lose it to cancer, to then donate the hair (because it was looong) to a charity that makes wigs for children with cancer. It would have been posted already, had I not left it in the hairdressers in an envelope. Let’s hope that the staff in the next day didn’t think it’s some kind of ransom…

‘Give us the money or it’ll be more than hair next time…’ 😂

Chapter 2: Round 1, ding ding!

Well… Lots have happened in the week since I posted last, and seeing as today is what I would call a ‘good day’, I thought no better time like the present to write another blog post.

It has now been a week since my first round of chemotherapy. It was all a bit of a rush to get me admitted to the hospital and get things started as soon as possible once they had decided on the plan of action. It was go go go! The original plan was for me to be on a type of chemo called R-CHOP, which is just an easier way of saying the drug names, however, that plan has all changed now (watch this space for updates about that after Tuesday…)

I think the hospital staff were a lot more worried about me come Friday morning than they let on (which I’m glad of!). They decided that my second half of the chemo dose needed to be brought forward to an earlier time than 3:30pm, due to the fact that I had woken up on Friday morning swollen from the armpits up like the stay puft marshmallow man! That’s something that’ll happen though when you’ve got a large tumour squeezing your main blood vessels!

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The administering of the chemo drugs themselves was a lot less eventful than I expected. I had imagined that I would be able to feel them coursing round my body, but for the most part, I wouldn’t have known any different from the saline drip that they had me constantly hooked up to! Granted, they were administered very slowly due to it being the first dose and due to there being a very high chance of me having an adverse reaction to one of them, but still, an odd feeling knowing that technically a poison was being pumped into me! One of the drugs, the last one if memory serves correct, did give me a slightly odd feeling in my head and face, almost too odd to describe. It felt like my brain was hot like there was heat right in the centre of my face behind my nose, and I could smell the chemicals from the inside of me, but none of the nurses seemed particularly worried about this and they were so attentive and good with everything. They’ve had lots of practice!

Friday night I was wheeled back to my private NHS hotel room and hooked back up to my trusty whirring and beeping friend the fluid drip and that was it – the first round of chemo – completed!

Saturday I felt pretty good. The swelling had gone down a lot and I could definitely breathe easier, which the consultants seemed very pleased with, but I wasn’t out of the woods just yet as they had told me that things could still get worse before they got better because sometimes the cancer cells could swell before they were broken down, and in my case that would have been pretty bad (it didn’t happen – yay!). Sunday was just more monitoring and blood tests (twice a day – I now have the arms of a drug addict), and Monday morning after blood tests came back good still (they were looking out for problems with my kidneys as they could have struggled to process the waste cancer cells out of my body) I was told I could finally leave! 5 hours later after waiting for the pharmacy to send down my huge bag of drugs I was out of the door with the biggest smile on my face!