When a Family Member is Diagnosed with Cancer

I remember it all so clearly, when I got told my nan had Non Hodgkins Lymphoma. She had a large swelling on her face for a while and the hospital had tried different things to get rid of it including draining, and we was under the impression it was working. Then my sister and I went on holiday to Lanzarote in April 2016. We got some calls from mum and nan while we were away. For example, my nan getting upset on the phone, and transferring us more money for excursions etc (she always treats us well and gives us money for holidays and she had already given us some before we left). Then nan came with mum to the airport to collect us, and it was weird then. The atmosphere was off and nan was upset again. 

When we got home, I knew for sure something was off as mum, dad, and nan sat us down in the living room all serious. Thats when we found out nan had cancer. I have never in my life been so upset as hearing that. My heart sank and crushed and I didn’t know what to do. I didn’t have any of the information around cancer that I do now so it was so foreign to me. My nan is my favourite person and I couldn’t believe it. 

Nans birthday, February 2016. You can clearly see the lump/swelling on her face but we had no clue what it was at this time.

She lives alone, so she moved into our house for nearly a year. As I was mostly away at uni she had my room and I had a camp bed in the dinning room when I was home for summer. That was hard, not having privacy and having to effectively sleep in a busy living room. But it was so worth it as I would not have her anywhere else. 

I can’t quite remember when or why, but in the same month she got admitted to hospital. I remember going with her and mum to A&E and waiting nearly a day for her to get admitted. That was hard as I hated leaving her, and for me it was very hard as she was in hospital for my birthday and I could not imagine celebrating without her. So I took cake to her and spent the day in hospital with here, and I wouldn’t have wanted to be anywhere else. 

At first after the holiday it was Easter break at uni, but as the time to go back to Coventry got closer I just could not leave her. I stayed in Essex a lot longer, through to May I think and completed uni work from home, as luckily my lecturers and friends were supportive. The year overall was intense, and I had previously been referred to the university’s counselling team, which really helped me get through being away. 

Spending my 20th birthday in the hospital with nan

It was hard to see nan go downhill with her health. Comparing our experiences, she had longer but “less intense” chemo, while mine was in a shorter space and a bit more intense. She also had radiotherapy. I went with her to one chemo session when I was home for summer and it was strange, my first experience being in that environment. It is what shaped my perception of treatment facilities. For example, there was a lot of older people. But I was fortunate enough to get transferred to Teenage Cancer Trust unit in Cambridge, which was nicer being around people my age.

She was sick a lot, as a side effect and struggled eating occasionally. Was tired a lot and lost mobility and needed a wheelchair (that eventually got passed to me!), but she was determined to get her mobility and independence back! So, when I was home for summer we had “weekend trips” to her house. It is strange feeling helpless and not being able to do much to help, and for me, I found it harder when nan had cancer rather than when I did. In my eyes, I would rather struggle through than anyone I love have to go through it all. 

It got harder, as at the end of summer I was going away to The Netherlands to study, and nan was still going through treatment and I would be even further away. But nan and the rest of the family told me I had to go for it still, and while I hated leaving her, I am glad I took the opportunity. I was still in contact with her all the time, face timing, calling etc. to check up on her. By Christmas time when I came home, she was a lot better and living at her house again. Having completed chemo and radiotherapy, she was in remission and going from strength to strength. 

Once she finished chemo, and before radio started we took her on a trip to her favourite place, Brighton!

While she got better, treatment and cancer was a turning point for her health. She slowed down, and was ill in general a lot more. Still to this day it seems like health-wise that period was like flicking a switch. Although, that was all in 2016. It is now 2020, and overall she is amazing, and a total boss. Somewhat to my annoyance (as she needs to slow down!) she is very independent still, if anything overdoing things and doing more than me some days. She worked very hard to get out and walking again, then Covid hit so she has been shielding but very determined to get back out and over the shops on her own. 

I am sharing my experience as I know a lot of family members are not sure what to do/how to feel etc. when a loved one is diagnosed. I have been on both ends of this, and can say that there is no right and wrong way to navigate this. No special formula or secrets to share. It is tough on everyone. All I can say is be there for them, and take note of what they want. If they want independence, if they need help. Remember who they are, they are not just a diagnosis. Also, it can be hard emotionally for you, I get it, I was there. But, try not to lean on them too much. Make them feel safe and comfortable taking up necessary space. Take time and space for yourself too. It can seem like an overwhelming balancing act, but if you just listen to their needs and be there for them however they need (everyone is different) and to the best of your ability, that’s all anyone can ask. 

Nan in the garden, this summer during shielding. She was in our bubble so I have stayed round her’s most weeks for the night

Its Okay to Slow Down

One thing I have found both during treatment, but mores afterwards, is that I put a pressure on myself to do things, and get stuff done. For some background, before cancer I never stopped. I was always working on something, furthering my career or education. I would literally work all day, work out, and keep working till late at night and be up at six the next morning. It was intense, and I was good at it. As much as I wish I could get back to that I physically and mentally cannot, and I also realise it is not the healthiest lifestyle. 

Despite this, I still try super hard to get back to that level and end up burning out. I feel, this is something we can all relate to at the moment whilst living on lockdown in a pandemic. All this time makes us feel we need to be productive. But, it’s a tough time for everyone and its okay to slow down. 

I have had periods of time where I am working away, getting loads of writing done, planning  home decor, gardening, baking. Non stop. But there are times (more often than not) that I cannot function and just sleep all day. And if I get just one thing done it is a win. And that is okay. 

What I am saying is listen to your body. Your productivity will not be the same each day. Sometimes it will be bossing through everything on your to-do list, sometimes it will be purely looking after yourself. 

Your worth is not defined by your productivity. 

If this is something you struggle with, here are some of my tips that help; 

  • Make a list, and start with the most important task. Allow yourself the space to not complete it if you can’t. 
  • Rest enough everyday. Stop if something is too much. 
  • Learn that these tasks are not the be all and end all. The world won’t stop if you don’t do them. 
  • Forget the lists all together for non essential tasks. Take it day by day and see what you feel like when you wake up. 

Food, Glorious Food!

People tend to talk about various food habits  while on chemo, ranging from restrictions (hello Neutropenic post!) to cravings. Last time I shared a post, it touched on my strict diet due to constant low neutrophil count, so now on a less medical note I am going to share with you the foods I became obsessed with, and the foods that ended up making my stomach turn! However, it all depends on when in the chemo cycle I would have them and my regime of steroids also played a huge part in my eating. I would also say that I had a fairly lucky experience with food. I could still eat without assistance/a tube and only had a short period of mouth issues making me need a liquid diet, and food never made me feel physically sick or did I loose my appetite – in fact it grew.

I think I should add that prior to treatment I was super healthy and strict with my diet, Strict vegetarian and a typical set of meals on a work day would be; 

Breakfast – porridge

Lunch – soup or spinach salad

Dinner – most likely something out of the slow cooker such as a curry or chilli 

And no snacks! I was vehemently anti snacks, mostly because i generally didn’t enjoy them. Just loads of coffee, water, and probably a wine or two.

Soon as I was diagnosed this done a complete 180. Partly due to my “fuck it” mentality and wanting to indulge in my favourite foods, and party because steroids can mess you up. Don’t get me wrong, they are amazing in that they started shrinking my lymphoma before chemo began. But the sleeplessness and cravings were crazy. I was never a bread person but I found myself eating my body weight in bread and constantly eating all thanks to steroids. So. Much. Bread.

Starting with foods that still to this day make me shudder. This was all due to the chemo’s effect on tastebuds and is a fairly common thing. Sometimes, it can temporarily effect tastebuds to the point of having no taste at all. For me, I can’t remember that really being the case except for when it came to spice I piled on even more (while trying to be careful of it causing potential mouth issues!). The most upsetting tastebud change was veggie meat alternatives. I couldn’t stomach them, the flavour and the texture was no longer for me. I remember cooking up some Oomph chicken style pieces on Christmas day and not touching it, and it literally took me over a year to be able to cook it again due to the memory of how bad it was at the time. And Oomph is my absolute favourite veggie alternative meat brand! This led to a poorer diet lacking in proteins as I was basically only wanting carbs and sugar so ended up dropping my veggie status for a year and eating chicken, and while this makes me sad I had to put my health first at this time – but I am back on track now. Another major – and from what I have heard common – no go for me was tomatoes. Never been a huge fan, but this was definitely not for me – especially cooked! Generally, things sometimes tasted too sour in general. For example I bloody love cheese, and had a major craving so made a mac and cheese, which according to everyone else was delicious but for me it tasted sour and gone off and totally inedible. 

I also had one period of mouth issues where all I could eat with minimal pain was ice cream, yogurt and the nutritional shakes from the hospital (that were surprisingly tasty?). Even things like soup felt like a mammoth task and hard to get through. I was lucky though as this happened only once for about two weeks for me. 

Now for cravings. I tend to go more for savoury than sweet, so it came as a huge surprise that the majority of my cravings were for sweets and ice lollies. Ice lollies were so nice cause they were cooling, and easy and damn tasty. I was obsessed. My favourite were orange (I know the mouth sore risk of citrus but they were too good!), Rowntrees Fruit Pastel and Watermelon. Easily got through a few a day sometimes. Sweets wise, anything fruity, lollies, gummy and/or sour (ironic in a way). M and S Colin the Caterpillars were always a staple for car journeys. And tubes of fruit gums were always handy. Fresh orange juice I love anyway, but seemed to want even more. And Frosties with soya milk and a pile of sugar. Surprisingly, my teeth are in perfect condition still! 

Savoury food cravings were a lot more basic. Quorn chicken nuggets for dinner everyday would be okay for me. And I was obsessed with instant ramen, the cheap ones from B&M, and ones from online Asian supermarkets. All the ramen. I think one reason was that I had enough energy to actually make myself ramen for lunch without relying on others. 

In terms of unrealistic cravings that I wasn’t allowed – there was a lot! Sushi, lobster, creamy cheeses, a specific pizza I had in Rome one summer, Indonesian gado-gado from a specific restaurant. The list goes on! To be honest, I would have took just going anywhere for food. In the end we did, and went to a cafe with a good hygiene rating when my neutrophil count was high enough at the end and it was amazing. One of my favourite hobbies (and I guess a form of torture?) was browsing menu’s online. Local pubs I would like to go, or places on future trips making a whole list of places I could not wait to eat at. 

Now, my food cravings have settled, but I would say my strict diet is not coming back. a bowl of just spinach for lunch is not sustainable. I eat bread, and basically everything in moderation and when I fancy with no tough restrictions on myself and I feel healthy in terms of my diet and happy with it. I also still get sweet cravings still, and recently done an online sweet shop impulse buy which will tide me over for a while. Certain foods it took me a long while to eat again due to the bad experiences, such as tomatoes and veggie meat alternatives. My cravings and limitations also helped me get more creative with cooking. We made fakeaway indian, chinese, and kebab dinners which were lush and probably healthier too! Overall in a way I have a better appreciation of food, going out for meals and allow myself to follow my cravings now within moderation.

What were/are your food cravings and no go’s? Let me know! 

What does Neutropenic mean?

Neutropenic and neutropenia and words that were used a lot in my treatment – and until the first day I was hooked up on chemo I had never even heard of it. So what does neutropenic mean? A simple summary from Lymphoma Action is;

“Neutropenia means that there aren’t enough neutrophils (a type of white blood cell) in your blood. White blood cells are important in fighting infections.” 

Basically, when you are neutropenic, your body cannot fight infections so you have to be extra careful with catching any illnesses, hygiene and food. You will not necessarily be neutropenic all the time while on treatment, and when you have your bloods taken your nurse can tell you if you are as a part of your full blood count. Here are some levels for indication of whether your neutrophil count is low; 

Neutrophil count 1.0–2.0: slightly low

Neutrophil count 0.5–1.0: low

Neutrophil count 0.2–0.5: very low

Neutrophil count less than 0.2: extremely low.

Anything above 2.0 is fine. 

Where it starts to get more complicated and differ, is different hospitals/consultants give different advice and follow different regulations regarding neutropenia. This plus the needs of the patient means people get a lot of different pieces of advice and instructions for when they are neutropenic, so I can only speak for my experience – which comparatively was very strict. 

I ended up being neutropenic for almost my entire treatment, especially during the first half of my regime when the chemo was a bit more intense. I was not allowed to eat takeout, go to restaurants, or even get a takeaway coffee from Costa in the hospital. I was told it is best not to drink bottled water, as tap water is cleaner and not been as exposed to anything. I also could not use condiments, butters, and milk that had been open a while, or some even for more than 24 hours. For example, if I wanted squirty cream on a hot chocolate, I had to buy it especially, then if a few days later I wanted another, I would have to get another can of cream. I also could not share the same butter as my family, and even had my own ketchup. It was a lot – and a big shock. For example, I saw people eating takeaway food while getting treatment, while I wasn’t allowed. And when my nan had cancer treatment a few years ago, she could satisfy her McDonald’s craving. There was also strange things too that I couldn’t have, such as fresh veg, canned or frozen was preferred, I was not allowed smoothies, fresh creams, no raw fish, and eggs had to be cooked through hard. 

While neutropenic diet is often talked about, possibly the area with the most rules and easy to control there are other aspects of neutropenia. Susceptibility of infections is also a big deal. So, frequent hand washing, wearing masks in public – especially at hospital and making sure everything is clean always. This is particularly important as you can end up with neutropenic sepsis, which I developed even though we was extremely stringent. 

While the neutropenia may have a pattern you can follow and know your routine from, if it gets really low you may need some boosters. Commonly used are G-CSF injections that are used to boost bone marrow production of white blood cells. These are something you can do yourself at home, injecting into your belly. While these work, and for some people go without a hitch, you can get reactions to them which is common. I tried these once, and I think I done two injections (day after each other), and I did not react well. It gave me terrific bone pain, that no painkillers could touch, I couldn’t sleep or walk so made the decision to stop taking them, as for me the pain was not worth it. 

I was fairly lucky, and my neutrophil levels rose fairly fast after I finished treatment so I could go back to carefully eating my favourite foods. Certain things I did have to be a bit careful about though, for example I had oysters which gave me a bad reaction which is possibly linked to this. 

When you first get told about neutropenia and the do’s and don’t’s it can be really overwhelming and like a lot of rules to follow with a lot of consequences, but once you get into the swing it is second nature. For me the hardest was not being able to eat a lot of food that I normally would, such as salads and fresh veggies. But, in the grand scheme of things it was worth it. And it has really prepared me to being careful with the current pandemic, and I think a lot of people could learn from the rules and guides around neutropenia – especially hygiene wise!

Remember, this is just my experience, and it was quite an intense one around neutropenia. Some people will be allowed to eat totally as normal. Some people will have some rules to follow. But always ask your care team for and follow the advice! Or if it is something I can help with, such as my favourite neutropenic friendly meals etc, then always feel free to send me a message! 

What has been your experience with neutropenia? Let us know! 

My Experience with Contracting Covid-19

Hey all you cool cats and kittens! 

I have been looking forward to using this time to write more, but was not anticipating writing this, nor is it a particularly fun/exciting one and one I was jumping to write. However, I think it is important to share my experience with having Covid-19 as there is a lot of fear and confusion floating about. 

I want to start by saying, I am one of the “vulnerable high risk” group contacted by the government, so needless to say as a family we have been taking it seriously with all precautions. My dad came down with the virus about four days before me, and as soon as he showed symptoms he was quarantined in his room and I was in mine, so I was already in full isolation in my room when symptoms started, so I am not sure how it was caught as I was not near anyone and we as a family are taking big precautions – including everyone being off work for the duration. So, I am not point fingers as to how it was caught, it is just one of those things, and honestly with such high statistics it was a matter of time before it got to us! 

I also want to address the fear and heightened anxiety around and catching the virus when you are classed as vulnerable and the news is full of horror stories. I was scared from the moment my dad got ill, and it increased when I got symptoms too. However, my dad is a lot healthier than me in terms of immune system and he got hit a lot harder than I did, I actually got very mild symptoms all things considered – so if you get sick please don’t freak out! Take care of yourself and follow all the rules. 

Initially, my symptoms showed as extreme fatigue, muscular and bone ache (reminiscent of the dreaded bone marrow injections so it was bad), tight breathing (a normal occurrence for me due to slight lung damage), and a strong headache that focused around my eyes, almost like a migraine and I could not even bare to look at a screen. Honestly, I put all of this down to tiredness as I had little to no sleep the previous days so decided a good night sleep would help. But I woke up the next day with worse symptoms and a high temperature of 83.4 which kept rising. What is tricky for me, is that these symptoms, I can get them on the regular (minus the temp) so it’s almost easy to brush off. So please, if you are the same as me, be vigilant and err on the side of caution and regularly check your temperature. 

I have to say the NHS 111 team were so amazing. I was assessed so fast and thoroughly, and got a call back instantly (I think this is all due to my vulnerable status), who then further assessed me and put me through to a local GP corona virus specialist which was also a very fast call back. We all decided that I was not in critical danger, so hospital would probably do more harm than good. So, seeing as you can currently only get tested if you are admitted with serious complications (unless you are a celebrity it seems, but hey ho…) I did not get an official test. But the doctor was certain I had it due to symptoms. It is important to note that I did not have a cough at all, and I don’t think I developed one. 

Over the next few days I got worse. I was either shivering or literally sweating through my clothing. I could not watch TV or look at my phone so I spent most of my time sleeping or doing literally nothing. Not even the energy to shower or bath for a few days. I also started to feel sick occasionally but never was. I still had an appetite as well. 

After a few days, I started to feel better and my fever dropped. So I recovered fairly fast, but stuck to the week of isolation. I could manage re-watching Twin Peaks and watching Disney cartoons. 

Mentally, it is very hard. Not being able to be near people, and having to rely heavily (again) on others. It is generally hard anyway, but I personally found it triggering, bringing back when I was bed bound and ill with chemo. On the other hand, with chemo I was never in my room only for nearly two weeks like I was now which was hard. With chemo, I liked to go downstairs when I could, and even when I was bed-bound, I was forced out to go to the hospital which acted as a change of scenery. 

As both myself and dad had it, one person was not allowed to look after us both. So as mum already was looking after dad that continued, and my sister Katie looked after me – and done a great job too. Even making me a menu to make dinners a lot more exciting.

There has been a lot in this post! I really just wanted to detail my experience for you, and give you a slightly better, more positive picture of my experience as all the info we get on it is quite scary. To round up my account of having Covid-19; 

  • Please don’t freakout and think the worst instantly. The world is a scary place right now full of fear tactics and the worst of the worst stories, but that is not necessarily your truth.
  • If you get sick, please look after yourself. Call 111 for advice, stay in your room (or house if you live with others) take paracetamol and hydrate! Take your time to heal and rest. 
  • Stay home to prevent getting ill and spreading anything. 
  • Treat yourself with kindness at this time! 

I really hope this has helped in some way, whether you have general anxieties over this pandemic, or are ill yourself and thinking the worst. Obviously, its still scary, and I am still taking it very seriously – in house isolation for 12 weeks etc… But yeah, just wanted to put out some more positive information and my personal experience. I have been out of my room for two days now, and I am feeling tons better. I feel fine and am back exercising and spending time in the garden. 

Got any questions? Let me know, sound off in the comments and on Instagram x

We all Need a Good Sleep

Wether it be steroids, other meds, anxiety, the current state of the world, sleep can sometimes be hard to come by. No matter how tired you are. Generally, I have suffered with not being able to sleep since I was in Primary School, being awake unable to sleep at 1/2am when I had to be up at 7am is something I am far more familiar with. This comes and goes, and at times I don’t sleep at all. Certain times through chemo sleep was impossible no matter how exhausted I was my brain struggles to switch off.

While sleep has recently been OK, the recent state of the world and health concerns we are all facing is keeping a lot of us up. So, a good night sleep is something we all need, deserve, and will be thankful to ourselves for. 

Over the years through therapists, occupational therapists, my own research and doctors I have developed some sleep hygiene rituals that help me unwind, switch off and drift to sleep. Sometimes it only takes one or two of these, other times it takes the whole list. Either way, I wish I knew some of these sooner, so thought I’d share the love and help with you all! 

Tidy Room and Bed

Sounds very basic, but the difference in my sleep when my room is tidy and bed is made is staggering. Laying in bed with a messy room all I can think about is sorting out the pile of clothes! I make sure this is done (as long as I am feeling able to) before I start to relax. 

Relaxing Bath 

I am a big fan of baths, especially at night. They give you a chance to unwind and the scents can really aid in sleep and relaxation. There are so many great products for this, including Lush bombs, Himalayan salt, or for a cheap and effective option Johnsons nighttime baby bath is great. 

Lush’s Sleepy Body Lotion 

This lotion is cult for a reason. It is a miracle worker. Sometimes I drown myself in it after a bath, sometimes I just use on pressure points, arms and chest. Either way this stuff is legendary. 

Skincare Routine 

I have spoke about my routine before, but making sure my skin is clean and well looked after makes me feel so much better. No getting into bed before taking off the day. 

Silk Pillows and Fluffy Cushions 

OK, so this may sound bougie but I swear its not. Silk pillowcases are better for skin and hair and feel so soft! You can get a set on Amazon for less than a tenner. And I love being cosy, so fluffy things and soft teddies are everything for me. 

Heated Blanket

This (especially in the winter) is a lifesaver. I get cold easy and hate being cold, especially after chemo. This makes me all snug and warm and ready to sleep. 

Lists 

The main reason I can’t sleep is often my brain can’t switch off. So, before I get ready to sleep I throw all of things I will need to do tomorrow on a note on my phone. Once its there I don’t have to think about it. No matter how small, its on the list. 

Stay Hydrated

I always make sure I have had some water and have a glass by my bed so I don’t deeply disturb my sleep if I wake up thirsty.

Do Not Disturb

I am a recent do not disturb convert. My phone is off and down and silent now and night, and not hearing that vibration or seeing it light up helps me disconnect. 

Headspace

If I need that extra little bit of help, Headspace is my go to and I am obsessed. There was a period where I could not sleep if it was not for these, they are amazing at drifting me off or blocking out unwanted noise. 

If all else fails there’s Nytol 

While I did not take this while on chemo or other meds, in drastic times I turn to Nytol to guarantee to knock me out. 

Sweet dreams! 

My Thoughts and Feelings on Covid-19

There is so much going on right now in terms of health and the world so it is hard to know where to start, so this could seem a bit of a brain fart in terms of structure, but we are all in the same confused boat here! What I don’t want to tell you all is to wash your hands or mention a certain 20 second song… I think we are all programmed into good hygiene now! I think it is also clear that we need to stay home, at least as much as possible and in line with the ever-changing official guidelines. 

What I will say, is your thoughts, anxieties, confusions over any and all aspects of this situation are legit and its OK to feel them. 

For me, while there is the fear of catching Covid-19 as a member of the at risk group, there is a lot of health anxiety and PTSD. After being so critically ill, it’s scary to think that what is often described as a “flu” will put me back into that situation potentially. The old worries of being neutropenic and a magnet for illness come back. The fear of just being ill at all is a big deal for a lot of us. And it is honestly overwhelming me. More so when people don’t take it seriously, and don’t adopt social distancing to protect others and stop it spreading. It’s also very invalidating when people “can’t handle” isolation when so many of us have done it for so long. 

I am also finding and feeling a lot of confusion as to what makes you at risk. While there are guidelines these are blurry. I constantly flit between feeling like I am over reacting and like I am not doing enough. I have settled for its better to be safe than sorry. While I am not a medical professional, I was say if you are unsure if you are at risk and you can’t contact your doctor or gain more info, it is safer to follow the guides for the at risk. 

Personally for me, the whole 12 week isolation is a kick in the gut. I was just starting to live a more “normal” life, taking steps for going back to work in the city, and just go out and be a normal 23 year old. Already I have had to cancel my plans, which of course is a necessity, but it still sucks so much. 

So yes, your fears, worries and confusion are valid! I am feeling it all myself, and hoping people and our government take note and take it a bit more seriously. We don’t need it to get worse and neither does the NHS. 

I am finding it hard to relax and feel OK in these times, but these are a few things that are helping me not to tip over the edge: 

  • Do not watch the news 24/7 – whether it be TV or social media. The constant flow is overwhelming. 
  • If you can, get outside for a walk! 
  • Make sure you are prepared for isolation, and have any support. While you will need to buy a few more bits at the shops to tire you over, do you really need all the tins of beans and loo roll? Prepare but don’t go crazy. 
  • If you are really needing too, call your healthcare team.
  • Loads and loads of distractions! 
  • Disconnect from social media, use the time to reconnect with yourself and get a hobby! 
  • Isolation and social distancing means physical. Relationships don’t have to suffer! Facetime, phonecalls, texting, even writing letters! Communication is key. Especially with those who may feel a little extra alone or anxious. 

Keep safe, keep positive, and be kind x 

Pre Chemo Prep

When you get told you need to undergo treatment, there is a big sense of the unknown. How will it effect me? Will I need to cut my lifestyle back? Thankfully, when I was told the doctor managed to answer some of the questions. I was not allowed to work at all. I was not allowed to use public transport, drink or eat certain foods due to infection and neutropenia. This all of course was for me depending on my specific treatment, so everyone is different. But, it doesn’t hurt to be prepared as you don’t know what you will face. I am so glad I was, as I spent a lot of time in hospital and too weak to do anything. Mentally, being proactive made me feel I was busy doing something positive in a time of limbo between diagnosis and treatment. 

So, read on for my top preparation tips and how I organised my life and planned to help make treatment a tiny bit smoother sailing! 

Adventures with my pup

Deep Clean 

This one is kinda a no brainer, but cleaning everything to within an inch of its life was a big thing for me. New bed sheets, bathroom bleached, mirrors polished. You name it it got super cleaned! This is what helped me the most in feeling like I was ready for treatment. Knowing my spaces were clean and ready for me and I did not have to worry about it so much when it kicked off. 

Wind up Work Task’s

Some people are lucky enough to be allowed in some capacity to keep working. For me it was a strict no-no. Once I knew I would have to stop my work projects, I spent some day’s doing the best I could to finish things off, write a hand over sheet and organise my out of office. This helped me to feel still in control of my work. I was also open whenever for them to message me if they needed help on something I would normally do. I also sent out a office wide email to explain why one day I left in a hurry and did not come back.

Prepare for Future Events

I was diagnosed in November, so was mindful that Christmas could be impacted. I made sure that before my first chemo at least 95% of my Christmas shopping was bought and wrapped and decorations up. I love Christmas so it also gave me a  happy distraction and left more times for hot chocolate and Christmas movies later on! 

Go Out-Out

I saw all of my friends and went out for drinks and food before treatment which was nice and filled that time before treatment began. I knew I would miss drinking and partying a lot as they were strictly off limits for me. So yes, I got very drunk and spent a lot of money on nights out and have some scars to prove it. Totally would do the same again.

Indulge in Favourite Things 

So it turns out a lot of my vices are off limit or impacted due to treatment. As mentioned above, I partied a lot to start off with. I also ate all my favourite foods ranging from runny eggs and smoked salmon to all the sushi I could eat. I also relaxed my strict healthy eating (for example, a work lunch for me was regularly just a plain bowl of spinach) and indulged in takeouts and bread – the steroids made me crave bread so bad! I also made sure to give my dog so many kisses and cuddles as I was not allowed to on treatment (yes mine was super strict, abnormally so it seems. Could be due to being on a trial?). 

One of my many drunken nights out

So that’s my top five things I done to help prepare me for chemo and fill the void between diagnosis and treatment. I also made sure to look after my body and prepare it for the battering it would get. For example, always moisturising, bathing, getting enough sleep and exercise and still eating well. 

One thing I did not do, which maybe I should have, was look into treatment more, find out more what to expect rather than avoiding all leaflets and info about everything. But that was my personal preference, and I think my way of coping and keeping things “normal”. So, while I may have been better off in some respects doing my homework, avoidance was overall the best decision for me at the time. 

I hope if you are currently diagnosed and wondering what to do/expect that this helps you a little bit! If you have already gone through this, what are your tips? Let me know! 

Adjusting to the new normal

Bit of a foreword; this post is like verbal diarrhoea just letting my feeling out, plus my foggy brain and fatigue make this a bit jumbled but bare with me. You have been warned! 

Recently, I have been pushing myself too hard. I say too hard, its my personal “too hard” for a person in normal health, it would be fine. For me, post treatment it left me bed bound for a week mentally and physically exhausted and ill. This is hard for me to talk about, as all I want is to be is back on track, back to normal, and back to work. And I thought by now I would be. Actually, I thought I would be back to normal in April, then pushed to September, then now. And now is not happening either. 

What makes this worse is that I thought I was ready, I was pushing myself a little harder to get me into a routine. I was doing more physically and mentally exhausting things. But after a point, I was barely dragging my way through, crashing out at 8pm every night and waking up with barely enough time to put on a swipe of mascara. And sadly, pushing myself which at first thought was helping probably pushed me back. 

I know I need to slow down and still take my time, but I have always been one to put pressure on myself and strive to do the best I can. And when I see friends going forward, or hang out with friends and struggle to keep up with their pace it is tough. It is also tough when I see people who have been through similar getting back to normal faster than me. I know everyone has different paces, and experiences things differently but it still makes me feel like I am missing something or not trying hard enough even though I know I am doing my best. 

It is definitely overwhelming when people ask when I am going back to work, or say something like “oh you must be ready soon”. Because I wish I was but I am not. And it just ends up making feel even more behind. I now always answer with “soon”. 

So how am I actually feeling? I am fluey and suffering from CFS, my neuropathy is back and bad, my body aches, I have chemo brain and mentally I am exhausted too. This is gradually getting better since it hit me, but its still here and getting in the way of my day to day life. 

What has helped me massively is taking a step back from social media a my phone a bit. I would turn it off completely, but I still need to access certain apps and some have even helped me switch off a bit including Headspace (I recommend splurging for the premium version if you can) and Flora to help me stop using my phone for a while. Healthy eating (slowly getting more vegan!) as well as treats also helps me feel a bit more comforted. Alone time for me is so important when I don’t have to socialise and can completely switch off. Rituals help too, for example my skin routine twice a day gives me time, something to focus on and I feel and look better too. Importantly I am also taking vitamins and my meds regularly and keeping track of anything out of the ordinary. Self care comes in many forms, not all seem nice to start with so find what worse and stick with it. 

It is ok to go at your own pace, there is no rush, take care and take your time, and you – and I – will get where we need to be, and the journey will have been worth it. 

Life With Percy, Paddy and Rex*

One of the things I was most worried about when diagnosed was getting fitted with a PICC line, it honestly freaked me out more than the thought of chemo. Having a tube put in my arm going to the biggest vein closest to me heart? Totally freaked me out. But honestly, it was a lifesaver and I actually ended up keeping it in a bit longer. 

*I weirdly named mine. My first was Percy, then my second with two lumens was Paddy and Rex. 

My second PICC, with added tape as a DIY tidy up before dressing change

What is it?

A PICC line is a catheter used during long treatments to administer chemotherapy/ other drugs/ take blood. They are more temporary than a port, and (so I was told) should only be in for six months roughly. It is inserted in the arm just above the elbow, and threaded through to the biggest vein near the heart by a nurse or doctor under local anaesthetic and very sterile conditions. I was shitting myself they day of having it implanted, but the nurses put me at ease so much. We was chatting away, there was music playing, and they was patient with my anxiety fuelled questions. It was over before I knew it. In terms of pain, the worst was the sting from the anaesthetic injection then all that I felt after was a slight tugging sensation that was slightly uncomfortable. Then its all done and you are left with a dressed site and some dangly catheters from your arm! 

Does it have to be looked after? 

While PICC’s are so handy, they require very careful looking after as they can get infected easily which would need to be treated immediately (more on that below). When inserted they are cleaned and covered in a dressing – if you have sensitive skin make sure you say, as there are sensitive dressings – that is cleaned and changed 24hrs after, then every week thereafter. I am not going to lie, that first clean stings like a bitch. I wasn’t expecting it, so I let out a long list of swear words, and then an apology. For me this was worse than insertion. But each week as it healed it hurt less, and having the site cleaned was actually so nice – especially as my skin was super sensitive and irritated even by the sensitive dressing. In terms of pain, it was a cut site and had been tugged around a lot so for a few days it hurt and I didn’t lean on it and was careful using my arm while it was sore and I was getting used to it. 

Be mindful of knocking the dangly ends! Especially with inquisitive children or pets. The nurses will give you a bandage to cover it up, but wearing every day it gets tatty and gross so don’t be afraid to ask for a few or a new one. If you want something a bit more aesthetically pleasing, you can get pretty lace ones online, but I personally found them a bit uncomfortable and itchy. I liked wearing sweaters a lot as it covered up the dressing/dangly bits without needing a bandage which was a nice break. Once the soreness went down, I forgot it was there! I slept on it (carefully) and used my arm as normal mostly. 

The biggest thing you have to worry about is getting it wet, I was always super cautious about that. If you get it wet, the dressing will lift and expose the site. The nurses will give you a blue plastic shower cover up for you arm. Even with this, still don’t soak it and be mindful in the bath or shower. The elastic and plastic can get worn after frequent uses so make sure to ask for a replacement! Also, if the shower is too hot, the steam can affect the dressing and lift it even with the protective sleeve. If it does lift slightly or you get worried its a bit loose and there is only a day or so till the dressing is changed, pop some microporous tape over the edges. The annoying thing is, that area of your arm doesn’t get a clean which is gross, so I carefully used baby wipes. 

The shower protector, keeping it dry and safe

How is it used?

Its just like being hooked up with a cannula – without the needle bit first! The nurse will flush the line to make sure its all okay, and then that’s it! Either blood can be drawn with a syringe type thing, or drugs can be administered. If you are having blood taken and its not coming so quick, that’s normal, Try turning your head away and giving a few coughs, straightening your arm, or standing up. Its super simple! The only thing is I love being warm and snuggly, especially when I was having treatment but nurses needed access to my arm so no sweater! However, I bought a cheap one and we cut an access flap, which was brilliant. 

What are the issues? 

So a small issue that is easily resolved is the port not getting blood or flushing properly. The nurses can then pop something down the line which works for an hour or so to unblock and then it’s alright again. 

The bigger issue is the risk of infection, which despite me keeping my PICC in pristine condition, happened to me. However, I didn’t recognise it was infected, I just thought it needed a dressing change as my arm was a bit sore and the area a bit redder. So, if you see anything out of the ordinary make sure to call up your care team for advice as it can lead to Sepsis (which I subsequently got). When mine got infected, i also had a blood clot in the area. Because of both of these, the PICC got taken out straight away, which terrified me. I have a fear of needles and the line made it so much easier for me. The week without a PICC was the worst, most painful due to constant needles and no luck getting blood, giving me a literal phobia and now going into a panic attack each time I need bloods. Luckily, I got a new PICC fitted in the other arm (hello matching scars!) a week later the day of my chemo session, and this time I basically ran into the fitting room with happy tears, and happy to see the same nurse again for a catch up and laugh. 

After it was pulled out, just a small plaster but my skin took a battering

What about when it is no longer needed? 

Due to my fear of needles and worry of not having been successful in treatment, I kept onto my line about a month longer than I should, it was like a comfort blanket – a complete turn around to how I felt before having it! Having it out was easy peasy though. The nurse told me to take a deep breath, and then it was out and I felt nothing. I weirdly kept mine, but from her reaction I don’t think that’s the norm! When its out I was expecting blood everywhere, but nothing and all it needed was a small plaster! I left it a day before getting it wet, but when it was time it was so so good to submerge it in the bath. The dressings tore my skin up, so I was moisturising it like mad. The best were Driprobase ointment and Body Shop Vitamin E lotion. They also helped a lot with scarring. Its a year since my first PICC removal, and I still have small scars, but they tiny, and I only notice them because they are there. 

My teeny tiny, barely there scar. The other one is exactly the same on the opposite arm

Honestly, as someone with a fear of needles and owner of crappy veins, this was a lifesaver for me and while there are some downsides (risk of infection, being careful, etc.) the pro’s outweighed the cons for me and I am so glad I got one right at the start of treatment. This is not the case for everyone, and everyone can have different experiences, so always go for what is recommended by your team and what is best for you.