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.
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.
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.
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.
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.
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.
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.
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.
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!
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!
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?).
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!
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.
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.
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.
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.
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.
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.
Hello 2020! If 2019 was the year for recovery and getting better, 2020 is the year for focusing on myself getting acquainted with a new normal. While I am not one to make new years resolutions as I don’t get the hype, just see a lot of “new year new me” pressure, this year I am setting some goals. However, 2020 has come at the same time that I am ready to implement some new rules and goals. These are all focused on building up what I already have, and getting myself into a healthy place.
I don’t want to put pressure on myself, as that’s a surefire way to be disappointed and fail so they are broad and almost vague goals, that I am more than happy to adapt, cancel, change whenever I see fit. I also have to consider that this year I am going back into work which I am so excited for, so that will have to be put into consideration, for example it will take up a lot of energy.
Without further ado, here they are! And if they relate to you/help you feel free to copy them and let me know how you go.
Be more mindful
My anxiety is crazy, invasive and controlling. It got better, and I am using medication for it, but its got stagnant. So I need to actively stop myself being pulled into moments of peaked anxiety. Whether that is removing certain people as they are not good for my health, relaxing more, being more present and trying to let go of control. Hopefully, the next few goals are going to feed into this.
I started the gym a few months back, and I love it, makes me feel so good to focus on something completely and feel physically and mentally better after. However, life got busy, and I have been staying away/preoccupied/ill etc.. So truth be told, I haven’t been in well over a month. But, I want to get exercise in and move everyday. So whether its a quick home HIIT session, some yoga, walking the dog or trying Couch to 5K, or housework, I am gonna get in some movement every day!
Be more plant based
I have been vegetarian since primary school (with a two year exception in college/uni), and always wanted to explore being more plant based. I wanted to kick off 2019 with Veganuary, but I actually ended up going in the opposite direction and eating chicken due to changing tastebuds and a not to great neutropenic diet meaning I needed more protein. Now, I am back again this January looking to cut out the chicken totally and incorporate more vega meals into my diet (hit me up with your faves!).
Learn a new skill each month
I am totally looking at building up my skillset, and giving me something to do other than online shop and watch Netflix! Both in terms of skills that can help my career or just for fun. So, if you have any recommendations let me know! I want to revisit coding and trying out a language so they should be a good start.
Are you setting any goals? Let me know and we can cheer each other on! But remember, don’t put pressure on yourself, the goals are not set in stone.
So, it’s Christmas! As you can probably tell from my latest Instagram posts, I absolutely love this time of year. Decorations go up a couple days before the first of December, my presents are already wrapped and under the tree, and I have already binged watched at least 80% of all Christmas movies ever made (How The Grinch Stole Christmas is always my favourite!).
One thing about this Christmas that is special for me is that it is my first Christmas post cancer. While I was fortunate enough to have a fairly short time with cancer, it all kicked off before Christmas. Initially i was like, “okay, handy, more time to be festive and a good excuse to do nothing but watch Christmas movies.” Damn, was I wrong! I didn’t expect expect treatment to hospitalise me over Christmas or create such an impact. One positive out of all this is that this year I now appreciate this Christmas even more and are even more excited for all things festive.
I thought it would be a nice idea to list what I am most enjoying/looking forward to about this Christmas. Other than the the obvious ones of decorations, movies, gift giving, Christmas jumpers…
Not being in hospital
One thing I definitely was not expecting last year was to be hospitalised over Christmas last year due to a horrific infection that led to me literally begging for morphine. We honestly did not know whether or not I would end up spending Christmas day in hospital and for me, that thought was heartbreaking. Luckily, in the final hours of December 23rd, due to the hard work of the TCT ward staff I was headed home just in time. Knowing that this year I can really enjoy myself and be home not worried is a great feeling.
Being able to drink
While my consultant said one or two glasses of something fun and sparkling to celebrate the festive period wouldn’t hurt, after getting ill I was not chancing anything. I had my first dry Christmas/New Years Eve in a very very long time. I am a sucker for some bubbles and mulled wine (drinking it already at any opportunity!), and while sparkling elderflower is nice, for me it just doesn’t quite hit the spot.
Being able to eat anything
So I was on a neutropenic diet for my entire treatment period. While the intensity of this varies case by case and dependant on the consultants views, mine was super super strict and I was neutropenic for at least four months straight (this is a whole other post’s worth of rambling). I know you can bend the rules, and people do and obviously that’s great if its fine for you, but it was a bit too risky for me! And similar to the whole alcohol thing, I was a bit scared of being rehospitalised. On top of this my taste buds changed. I cooked my favourite Omph! veggie chicken pieces for my Christmas dinner, and while they are so delicious I hated them! Which sadly has sill put me off eating them.
This seems like such a basic one. But energy to really participate in Christmas day (which for me is fairly chilled anyway!), Christmas baking, and even the energy to wrap presents well and not like they were done by a five year old. Already I am seeing the benefits of this, as although I struggle with fatigue post treatment, it’s better than it was on treatment. So this year is gonna be full of baking treats and Christmas activities.
One thing about being severely neutropenic is not being able to go in overcrowded places and public transport. So there was no trips into London for the festivities or even garden centres for me – both of which I love doing and have definitely made up for this year! Being secluded at home during December sounded nice and cosy at first, but when you can’t celebrate with friends or keep up traditions the novelty of binging Christmas baking shows and movies fast wears off.
Oh I do love a good Christmas market over in mainland Europe. Last year we was booked to head over to Brussels for the markets for a festive weekend, but sadly had to postpone it under my consultants strict instructions (Christmas last year was full of neutropenic and fatigue limitations…). That means that this year it will be even more festive and we are even more excited. I guess it means I can demolish double the amount of gluhwein and chocolate, right?
A proper New Years Eve
Lack of energy? Check. Limited movement? Check. Overall really feeling the effects of chemo? Check. No alcohol? Check. Not really the perfect checklist for an amazing New Years Eve celebration. And to be honest, while the first half of the year was amazing, the second half didn’t really bring about celebratory vibes. Nor did I know what this year would bring past treatment. This year, I have so much to be thankful for and celebrating about how this year turned out, and so much more to be looking forward to next year. Also, its the end of a decade! Perfect excuses to party extra hard.
My goal at the start of treatment was to always look fabulous no matter how I was feeling. For a while this worked, and I was in heels, full face etc. Very soon this flopped though, and while makeup and looking good did make me feel better, it was hard finding the energy or care to do it sometimes. Plus heels started to damn hurt! I replaced the heels for Uggs, and sparkly outfits for matching lounge sets. While cute, its nice to look and feel fabulous around this of year. Other than when it’s time to wearing the Christmas PJ’s of course.
Not having the stress/worry of hospital appointments/being ill hanging overhead
While Christmas day last year i was lucky enough to not be in hospital, the gruelling appointments schedule, medication list, and being ill with chemo side effects definitely loomed over. Don’t get me wrong I had a lovely Christmas day and after all the time in hospital it was nice to be at home with family. This year it will be even better without the looming hospital appointments and uncertainty.
General positivity and ending the year on a high
This year was a shit-show to start off with, and I had almost disassociated from myself in terms of seeing nothing but treatment and a very uncertain future, putting my life on hold. Now it is getting back on track and I am glad I can say I am ending a rollercoaster of a year feeling positive and excited about life and the future. I have come so far, and so have my family and friends through all of this so it’s definitely a time where we all can celebrate and look at how far we have come.
Christmas last year was good, and the times where I was well enough to enjoy it and not be in hospital were great and proved a distraction. But cancer and treatment was always lurking, even at the brightest moments. If this is your first Christmas on treatment, do what you can to feel festive! For me in hospital it was playing Christmas movies and bringing some festive pillows/teddies. Also, know that everyone is different and cause I was unlucky with side effects around Christmas it doesn’t mean you will! Enjoy yourself and be merry. What are you most looking forward to this Christmas? Let me know!