Life With Percy, Paddy and Rex*

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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.

2020 Goals

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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.

Exercise daily 

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. 

It’s Christmas!

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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…

Me and my sister Christmas day in our festive PJ’s – its tradition! It was also the social media debut of my freshly shaved head, therefore the only reason I bothered with makeup

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.

Of course Chicco has to get festive too! This was his idea of helping put up the Christmas decorations

More energy

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. 

Trips out 

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. 

Christmas markets

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? 

While I had strict instructions, my consultant gave us permission to go see The Nutcracker at The Royal Albert Hall, as long as we drove and I took a face mask to prevent germs. This is a few days after Christmas, and my first time wearing my wig out

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. 

Cute outfits 

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. 

The perfect way to end Christmas day, snuggled on the sofa in my PJ’s, cosy new blanket snuggled up to my little pup – more of this this year please!

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! 

Boom and Bust – The Fatigue Rollercoaster

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Life for me has got crazy busy for me lately (definitely in a good way!), so it seems like the perfect time to talk a bit about one of the side effects/late effects of chemo – fatigue! This is a word that can be thrown about a bit, people using it the same as “tired”, but PSA, fatigue is not tiredness! If you are unfamiliar with fatigue, it is a near debilitating form of extreme tiredness. You can feel weak, lacking of energy, motivation and sleepy. And just getting a good eight hours is not gonna fix it. 

Unfortunately, life is busy and you can’t put everything on hold forever. Unfortunately, fatigue is something that there is no magic fix for and will probably stick with you a while. This means you gotta learn to manage it, something that has taken me a while to accept. I have a habit of working and working and not stopping. It’s part of me, always has been, and I really did not want to let cancer get in the way of that. I kept burning out, and ignoring the signs. Now, I have become more aware of the signs, importance of planning, and through doing this, gradually I have been able to more and more. So through doing moderate amounts, and then resting, I can do more, then rest less and so on. 

Boom and bust? Heard of it? My OT introduced me to the term and its definitely something to live by, life changing thought process even! It refers to the rate of activity, and down time needed. So for example, the harder and longer you peak, the longer you are down for. If you manage this, and plan for it, and recognise when you are in each cycle you can be in control of your fatigue. For example, if I have a job to do that will be fairly intense, and take three days in the week I know I need to take a couple days easy so I can be ready to go again. 

A visual representation of the boom and bust fatigue cycle

This does not always work out so smoothly though. Sometimes there are times in life when you can’t cancel, can’t plan in rest days and have to keep going and will burn out, which is happening to me a bit recently. I am not mad about it, cause I am happy to be busy, and whilst I am “on” I am buzzing, and happy. It’s just when I stop I realise it. But the good thing is I know. I know that I need to do literally nothing for a a bit afterwards – which I find hard but am getting there! 

One thing that has been a struggle with planning around the boom and bust cycle, is feeling not good enough or not productive enough because I can’t do as much as I used to and can’t keep up with others. But it’s important to listen to my body, to ensure I keep healthy in the long run. I know I am doing as much as I can, and while I feel like I am not doing enough, I am not behind. Everyone’s timeline is different and going at their own pace! 

So what do I do to make the most out of my time “booming” (definitely an “OK boomer” joke to be made here…) and ensure I manage my time? I am a sucker for planning! So this has only increased. I make endless to-do lists with tasks ranging in importance, so if there are tasks I can’t do, I know some can wait for another day. I try and get up early, or assess the day to see when I feel I will be most productive. As I am a night owl, this often is in the evenings. 

Then when it comes to the down time? I like to be a bit active and busy even on down time, so whilst yes there’s a fair amount of Netflix, walking the dog is great (fresh air and movement can really boost mood and energy!), baking, and catching up on small tasks like laundry and cleaning so I can still feel productive. Oh, and oh the extra tired days spending the day in bed is lush. 

The bottom line is, fatigue is a damn bitch. It’s not going to go away over night, but we gotta try and keep control of it rather it have control over us! Gotta live life and have fun, just be more mindful and pro-active about time management – remember the boom bust cycle. It’s also important to remember fatigue is a common side effect, and while some people may not understand how its not just “feeling tired”, we know what its really like, and you are not alone! 

What are your experiences with fatigue? How do you cope? Especially if you are back at work, I need tips! Let me know! 

TCT’s Find Your Sense of Tumour 2019

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Find Your Sense of Tumour was such an amazing experience, I am so glad and lucky I got to go. Here I have tried to get out my thoughts without ranting on too much, as you know I can! If I have missed anything or you have any questions, let me know!

I had heard so much about Find Your Sense of Tumour from people I met previously, so was eager to go when I got the chance. I got told it was full on, relaxing, funny, informative, and just overall a great weekend. With so much going on, I was nervous and didn’t know what to expect from it or what I was planning to get out of it. I also had the general ‘pre trip’ nerves when you don’t really know where you are going or who you are going with. 

Day one at FYSOT

What I found was it was a great chance to meet new people, from my hospital, and elsewhere. Making great new friendships with people I am still frequently in touch with now. I was also surprised to meet up again with friends from other trips. I think that is what one of the biggest draws of these kinds of events are, and what you can take out of it the most – a group of people who “get it” and you can laugh about similar experiences with and learn from each other. You quickly get to know people, first on the 3/4 hour coach trip, then spending nearly every minute together over the weekend you fast get close. 

There was a fun photobooth on the Saturday night, complete with props!

Now onto the weekends activities! There is so much on offer, from wellbeing to life after cancer. Some are elective and some are for everyone to do, so you can really tailor the weekend to fit what you want to get out of it. There was two electives on the Saturday, and one on the Sunday.

There was plenty of photo ops here and cool decor!

For the Saturday I chose Fertility for Women and a confidence building workshop. The fertility workshop was by far the most informative, and possibly intense. It answered loads of questions, and after also speaking to my nurse that came along I got referred to a gynaecologist which I don’t think I would have considered/bought up if it wasn’t for the talk. Sunday I was so exhausted I chose to opt out of the Sunday session for a break. Every night there was a party, music, dancing and activities for everyone to take part in. Never a dull moment. Its such a super busy weekend, constantly on, so my advice would be to plan as much as you can and also listen to your mind and body! If you need to take time out or nap, go for it. It’s such a fun weekend but there is so much on and so much information it can be physically and mentally exhausting. 

For more relaxing activities, there was also yoga and massage therapy on offer. Both of which I tried and were amazing. The yoga was a nice afternoon break to relax and just take time to breath, followed by a massage was lovely! I do wish the stalls were open for longer though, there was so much I wanted to see but not enough time, so I missed out on a fair few due to overlapping/over running activities. 

The decor was so fun and bright. Full party mode

The venue was really nice, apparently a new one for this year and I liked it however I have nothing to compare it to from previous years. It was so nice to have our own room and bathroom, as I needed that space and time to relax alone at the end of the day. Being a veggie, I always worry about what food choices are going to be like – I don’t like chips and didn’t want to spend the weekend eating them! But food was so good, a huge variety and plenty of choice. I feel like I didn’t stop eating all weekend what with the meals and sweets always on offer. 

I think the only thing I think was not so good was how it was overly regimented, and we were in a way treated like children with strict rules and curfews, including no alcohol. Which is weird as we are all 18+, and therefore used to being treated like adults. And when talking to others who had been previous years, this was a stark contrast to before and a contrast to how we act and are day to day.

Met so many new people, these guys are from my hospital

Overall, it was such an amazing weekend and I took so much from it – new friends, information, and overall great memories. It was lovely! And I would love to go back again. 

Tips if you go in the future

  • Really dress up for the party! The Saturday night there is a party with a dress code. Try and really go crazy and all out.
  • Book time off for the day after you get home/plan rest as its jam packed and you will need to hibernate for the day. 
  • Be sure to take time out and rest and process information as you need, there is no pressure and take things at your pace. 
  • Get involved as much as you can/feel up to – don’t let fears get in the way, there’s so much to take from the weekend! 

My Top Ten Things to do on Treatment

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As you may already know, when on treatment there are a lot of limitations in place, both set my the health team and by listening to your body. For example, I was not allowed to use public transport (bye bye travelling into London!) or drink alcohol as told by my doctors. My body however physically was confined to a wheelchair sometimes, or was too weak to do “normal tasks” and my brain could not do anything regarding intellect, so reading was a no go for me as I could not process things properly or have the concentration. 

As you also may know, being limited in what you can do and not being able to work is mind numbing, and it drove me insane! I get bored easily and like to always be doing stuff, so slowing down was hard enough, but finding easy but fun and rewarding things to do to fill my time was hard, even post treatment I am struggling and filling my time while I am recovering and not working.

If you are about to go through treatment, going through treatment, or in recovery and looking for some fun things to fill your time with, here are some of my favourite things to do – beside watching all of Netflix, Now TV, and Amazon! 

Going out on walks with my pup was one of my favourite things to do

Skincare This got spoke about during the October Body Image Series, but I think its not only so important, but fun too! I loved creating my routine, whether it be my morning one or bedtime bath routine and making sure my skin was pampered. One of my favourite things is trying out different face masks! At one point I was so obsessed I had about 50 different ones in my drawer and my skin glows from it! 

Plants This started off innocently but soon spiralled into an obsession for me. I bought one plant, loved it so much I kept adding to my collection so my room is literally full and every free space gets filled with a plant! You can get such a great variety, they are fairly cheap, make for a good easy shopping trip to a garden centre, and looking after them gives you some control, responsibility and is so good to see them flourish! Do some research into plants, as some help with various aspects of wellbeing too. 

GBBO 2020 winner? This bake was my sister birthday cake full of everything chocolate

Shops Now, I don’t mean a huge crazy trip to Westfield. But a low-key trip to places such as garden centres, and home stores such as TK Maxi and Homesense I loved. They have a range of “bits” to just look at, and buying small things made me happy, not just for myself but as presents! These shops are usually fairly accessible and large, so even in a wheelchair it made for a nice change of scenery. 

Nails Similar to skincare, doing my nails each week gave me some pampering time and control. I also have a bad habit of picking my nails, which is bad and I used to prevent by having acrylics which I was not allowed to keeping them pretty and tidy really helped! 

As an end of treatment/birthday present my sister surprised me with a trip to Leeds to see Shawn Mendes, something I was totally counting down the days to!

Online shopping This became a bit of a bad obsession potentially – as soon as I get bored I log onto ASOS or Amazon and see what I want. Nothing expensive, just small pick me up gifts or items of clothing I would look forward to wearing when better. It has come in handy though, as its only the start of November and my Christmas shopping is all done. It also is fun to do in hospital, would give me a little treat to look forward to getting when I got out. 

Walks Getting cooped up at home or in the hospital all the time is exhausting, so every time I was able to I was out walking. I loved the forrest or local gardens and parks. But I also just took a walk outside the hospital and down the road to get some fresh air which is a big mood booster. Even in a wheelchair I went for “walks”, I was just happy to be outside in fresh air. Just be sure to wrap up warm! 

Something else I looked forward to doing was going to Buttercups Goat Sanctuary. I LOVE goats, and my sister sponsored one for me for Christmas, but due to infection I had to wait till after treatment to visit

Subscription boxes When I was first in hospital, I found Birchbox online and found the idea of getting a secret present each month so exciting! I have been having them a year now, and I am so hooked. Receiving it each month really brightens my day – it really is like a little present each month and I love it. If Birchbox isn’t for you, there is such a big range out there from beauty to plants! 

Baking I have always loved baking, and it became one of my favourite easy ways to fill my time. I am not a massive cake fan myself, but loved making cakes for other people. Some of my best bakes included gooey chocolate brownies and I perfected muffins. It was also handy, as I knew all the ingredients were safe for me. I did miss eating the raw cake batter though! 

Seeing/speaking to my friends was always great, as was planning to go to Truck Festival with them! I was not sure how I would be for it, but I was determined to get better for it and go

Make future plans Its very easy to get caught up in the present when you are ill and stuck in hospital. I loved making plans, it broke my time up and gave me things to look forward to both for during treatment and after. For example, I planned my friends visiting, and a holiday for after treatment. I found this even better with a countdown app, giving me something visual to perk me up on low days. 

Talk with friends I have never been a big talker over the phone or on FaceTime, but it was so good talking with my friends when I was ill or feeling low. I had phone calls over an hour long, just chatting pure crap and it was glorious. I also texted more, partially due to having more free time too, but mostly as it was just good to keep in contact with my friends. 

What do you love to do and fill your time with? Let me know!

Body Image Series – Self Love and Body Acceptance

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I have spoke a lot about the struggles with how your body changes due to cancer and treatment, but what about when treatment is done? Things don’t return to normal straight away, despite wanting them to, which can be very hard and create a toll on your mental health and the attempt to get back to “normal”. 

This is me right after the end of treatment, the first time I could have alcohol so about a month after treatment ended, and for me, the worst I have ever felt or looked. Its something I am still struggling to deal with, and at the time it was even a struggle to look in the mirror

It has been seven months since my last treatment, and things are still not normal for me regarding my body. I am still weak, fatigued, get neuropathy, get ill frequently, have crazy chemo hair and my weight is not back to normal. All of this makes it hard to get back to normal, either things are physically holding me back, or creating self confidence blocks. 

Five months after treatment on holiday in Cornwall with my mum, my body definitely could not do as much activities as before treatment and I needed lots of rest

All these negative body changes make it very easy to hate my body, feel resentful for all the changes, especially looking back on photos from before treatment (at least I appreciate how good I looked then!), wishing I was back to that. It’s easy for these thoughts to take more weight than the positive ones, which when in reality outweigh the negatives. Over the past year my body has endured a cocktail of poisonous drugs, loss of movement, daily injections, nearly deadly infections, blood clot, the worst pain I have ever felt, and more. And the fact that my body endured that, fought it, and is here still fighting is pretty cool and something to be proud of. 

On holiday in Turkey six months after treatment. While I am still not happy with how I look, and the physical after affects of chemo, I am more accepting and trying to practice self love more

When I find myself slipping into negative thoughts, I remember all this, and remember how far I have come. I don’t need a wheelchair anymore, my hair may be crazy but its growing thick and fast, I am back at the gym and working on myself, and I no longer have to stay in hospital. Putting all this into perspective lets me know that I am doing okay, better than I let myself believe. While it’s a long journey and I am not there yet, it is a massive struggle and sometimes I dwell on the negative, I am getting there. 

I need to remember to treat my body with kindness, self love, acceptance, and celebrate it. Bodies are amazing, they are the only ones we have too! They endure so much, and I need work work on it with patience. This is a way to live that everyone can benefit from. Whether self love and body acceptance means looking in the mirror and feeling comfortable and happy in your own skin, giving yourself the rest you need, or working on yourself positively rather than with anger. 

Body Image Series – Beauty Tips and Tricks

~ alicescancerjourney ~ Leave a comment

Going through cancer and chemo made me schedule time out each week to look after my appearance, which while fighting infection and illness was something that often easily got ignored. Not only did this make me look better, but feel better also and gave me time to focus on something else, something fun and normal. This routine became a big part of my week, and made sure most days to do something that made me feel and look good. It also helped with some chemo side effects, such as sore head, and dry, grey skin. 

Loved playing around with different colourful makeup looks (liner done with eyeshadow for ease!), especially matching it to my wig and outfit! This was a favourite combo

An example of my routine was; relaxing bath every day, face masks 3 times a week, manicure weekly. This really helped me with normalcy and structure in a time there was none, it was also relaxing and low impact, meaning I could do it even when feeling my worst! Whats more, this routine is continuing on into my life after treatment – its a self care ritual that I find hugely helpful for my mental health. 

Me and nan having a pamper session! Not sure she loves them as much as I do haha

Daily (when I had energy!) I would love putting on some makeup, the bolder the better. I have always been a huge fan on makeup, so things like eyebrows and lashes came quite easily for me. What I did struggle with was liquid lipsticks, liner, and things that required a steady hand as neuropathy and weakness got in the way. So unless I wanted a clown mouth, my favourite red Fenty Beauty liquid lipstick had to stay tucked away for a few months!

My signature red lip, when I was finally able to apply it again!

I want to share some tips, tricks and products that I wish I knew before and during treatment. If you have tried any, let me know how you found them, or if you have some to recommend let us know! 

Top Tricks 

  • This first one is basically reiterating what I said above, take time to treat yourself and feel like you! However that may be;  taking a long bath, popping on a face mask or playing with some makeup! 
  • Head to a Boots No.7 counter and ask for their Macmillan adviser! This really helped me discover some new products, and find out how my skin would change and how to help that. I popped back multiple times for advice and it was so helpful! 
  • Moisturise! I have to admit, I used to suck and regularly moisturising, but chemo dried my skin out so much it became a daily, sometimes twice daily habit. 
  • Use face masks. There is so many for all different problems and concerns. If you are not a fan of the messier ones, sheet masks are the way to go! Give you 20 minutes to relax, and help treat your skin. 
  • Avoid harsher chemicals and products. For example Simple products can really irritate sensitive and chemo affected skin, and teenage spot treatment is way to harsh! 
  • It can be hard to find the motivation to get showered/bathed – especially if you strength and mobility is gone and you need help (believe me I know!), but sometimes simply getting cleaned up and putting on fresh clothes can make you feel so good.
  • Head to the dentist before starting treatment! Then keep a solid dental hygiene routine to help fight some nasty chemo side effects. Also, a soft bristle or baby toothbrush is perfect as it wont make your gums bleed.

Must have products 

  • Korean sheet masks  – These are a must have for me! Not only are they amazing for skin, but if you head over to Amazon you can get this fab multipack which I love! Another pro for sheet masks is they are portable, I always had one with me at hospital to help me feel more human. 
  • Johnsons Baby Shampoo – So gentle and if its good for babies, its good for us! I didn’t want to scrub my bald head with body wash, so this seemed the best option for my bald head right through to when my hair started to get thick. Cleaned it well and left it super soft! 
  • Body Shop Vitamin E body lotion – This got recommended to me before starting treatment, and it’s too good to keep to myself. All body shop products are full of good, cruelty free ingredients and this lotion really helped keep dry skin at bay. 
  • Driprobase Ointment – PICC line dressings were super harsh on my skin, even the sensitive ones! One of my nurses recommended I use this carefully around the area and it was a miracle treatment. Be warned though, this is super thick and oily so less is more! 
  • Dr PawPaw Balm – Possibly the best balm I have ever used. It can be used on lips, cuticles, and I even used it to thicken my lashes and brows! It also comes in tinted versions for those extra lazy days where minimal effort is wanted. 
  • Isle of Paradise Self Tanning Water – When I finished treatment, summer was starting, I was warned against the sun and I was looking grey and pale! This fake tan was perfect, easy to use, didn’t have the smell, and didn’t make me orange. 
  • Superdrug Curl Smoothie – This was recommended to me by some girls when my hair started getting the infamous chemo curls and went a bit wild! It really helps tame down my hair and enhance the curls. 
  • Nivea Tinted Moisturiser – When my skin started to dull and grey, I needed a good pick me up that didn’t require a full face of makeup. This gave me a good pop of natural colour, while being quick, light, moisturising and super cheap! 

Body Image Series – My Experience With Weight Changes

~ alicescancerjourney ~ Leave a comment

One of the hardest things surrounding my appearance that affected me mentally was weight changes. So many aspects of cancer can alter your weight (up or down), from the cancer itself, to chemo side affects, steroids and beyond. And you can never truly predict how (or if!) you will be affected. For me, it was a bit of both weight loss and gain.

Something I think makes weight changes such a hard and emotional aspect of cancer and treatment is the general perception that sick people all loose weight. You see it on the TV, in films, everywhere. While yes, this is the case, sometimes it goes in the opposite direction and people can’t believe its down to treatment and think it’s self inflicted. Because of course, I am choosing to have 40 steroids a day and be in a wheelchair. I know, it’s not their fault, but it can be frustrating having to explain yourself. 

Back in May 2018 before diagnosis

Despite the steroids, the bread cravings (So. Much. Bread.), a very limiting strict neutropenic diet and lack of movement, for the first half of treatment I was loosing weight. Being the sort of person to always to look on the bright side, I took this as a win. I was happy to loose a bit of weight, as it was always something I had struggled with, so I saw it as any little helps, right?! I was shocked that I was managing to loose weight – at its most crazy point, I was easily loosing nearly a stone a week – I was unable to move much, and eating awfully for the first time in my life. While I knew this weight loss was not good or healthy, I didn’t mind it and as long as it didn’t pick up pace, I was happy with it. 

January 2019

Cut to the second half and end of my treatment. Slowly I started to put on more weight, which was OK, getting back to where I was at the start of treatment. One thing I never wanted to do was exceed that weight. I am not sure of the steroids had caught up on me, or it was the change in my cocktail of chemotherapy, but the weight was piling on and I couldn’t do much to stop it. I was unable to move and exercise, and my tastebuds and neutropenic diet severely limited my food options. 

March 2019, towards the end of treatment

As treatment stopped and I no longer had to eat neutropenic, my normal diet gradually was getting back on track. I was also going out for food a bit more, as I was unable to when having treatment. I wasn’t excessively eating out, but I thought i did deserve a treat, and knew it wouldn’t make a great impact, so ate well the rest of the time. Balance, right? Despite this, and the gradual increase in movement, my weight seemed to keep piling on no matter what.

While I knew it was happening, it took seeing a badly angled photo of me to really see it. While no one else cared, it was me who was putting the pressure on myself. I struggled to look in the mirror after that, struggled to find the motivation to dress well and mentally I went downhill. Despite it being my birthday and doing more than I was on treatment around this time, I have hardly any photos as I felt so uncomfortable with how I felt. This continued through to my recent holiday, wearing less clothes in summer and feeling bad about appearance is not the one. 

July 2019

I think it hit me so hard because before treatment I was at the peak of my health (lol, so to speak, minus the cancer of course), and worked damn hard to get there, was super proud and for the first time happy with how I looked. So this was a real punch in the gut. 

Only very recently I have become more accepting of my body and how I look. Yes, I am not happy with the weight gain, but I am tackling it positively. Keeping a healthy lifestyle, back in the gym and creating a routine. But also still treating myself and not feeling bad about it, cause after everything I deserve it! I still struggle a lot, for example putting on some clothes that fit too snug, or if I am going out-out and want to look extra glam and nice I find it hard. But, I try and remind myself that this is temporary, I will be back on track, and that yeah I may have put on weight but my body has endured so much and done amazingly well at saving me. So if some weight gain is a part of that, so be it.

If there is anything you can take from this rambling, long post, let it be that no matter how you have changed, its temporary, and your body is amazing and done so much. I know its hard, but treat your body with kindness and work positively to make changes 

Body Image Series – Head First Into Hair Loss

~ alicescancerjourney ~ Leave a comment

As I mentioned in the previous post, hair loss is one of the major, most obvious ways your body can change when undergoing cancer treatment. It’s emotional, and something everyone deals with differently. When I got diagnosed I was gutted and super annoyed about the incoming hair loss, just a few weeks later I spent a lot of money having dyed and styled! It also affects us once treatment has ended and we get to a new normal, and all we want is to look “our old self” but there’s a noticeable difference in hair style! This is a little look at how I dealt with hair loss and tried to find control in a time where I had very little. 

Braving the Shave!

From the very first day of treatment I was careful with my hair. Not being to rough washing it, pulling too much brushing, or over styling as I didn’t know when it would come out. For the same reason I also spent more time styling it. It started coming out about two weeks after the first day of treatment. While it was something I was always conscious of, when it happened, I barely noticed or cared. I was urgently admitted in the worst pain of my life and getting pumped with morphine. I couldn’t stop moving in agony, which lead to me touching my hair and a clump coming out. When I saw it, I laughed hysterically. Over the next few days in hospital, my hair was coming out in huge piles daily. I knew the moment I was out of hospital I had to get rid of it, so December 23rd 2018 in the evening after being discharged I done just that. 

One of the many piles of hair in hospital

For me, shaving my hair was inevitable. I knew I was going to do it, and being a positive person, I saw it as a fun challenge. When would I normally just choose to shave my hair off? I spend most of my time trying to grow it out. I tried to make it fun. I put on a full face of makeup before shaving it to make me feel better about my appearance, and I done it all myself. I took pleasure in having control over this small yet powerful aspect of my life, hacking away with the scissors before taking to my head with a shaver. I found it freeing and liberating. I was also comforted to know that I had my wig ready, all perfectly styled and pretty from The Little Princess Trust. 

With my Little Princess Trust wig

I was also excited at the prospect of the fun I could have with wigs (see, always trying to look on the bright side!). In total, I got five. They made it fun for me, and I have always loved having crazy hair and changing it up so this seemed right for me. Other than owning a couple hats, head accessories were not for me, I couldn’t seem to pull off wraps or hats! After a while I started adjusting to the new bald me, I even learnt to embrace it and feel comfortable going out some places – especially with some statement earrings and makeup. The hardest thing for me was how cold it was without hair, especially in the winter I don’t know how guys with sort hair do it! But come summer, I was thankful for my short chemo curls that were coming through.

One of my favourite fun wigs. Less than £20 on eBay!

And just like that, as soon as I got used to being bald, I had to start adjusting to another new normal of the chemo curls and looking like a sprouting cress head! I am six months post treatment now, and have quite a full two/three inches of hair! But if I am going out-out I like to pop a wig on still. 

This was quite a long post, but with hair loss there is a lot to unpack, and I have saved some for another time. But if you can take away anything from this post I hope it is the understanding that everyones hair loss journey is different, and however you deal with it is OK!

2/3 months of hair growth

Hair Loss Tips

  • As scary and heartbreaking as it is, braving the shave can help you. Chemo related hair loss can be painful, and shaving it off, or cutting short minimises pain. Also, making the decision gives you some control at a time where you don’t have much. 
  • I found my head got super cold! I am not a hat fan so did not want to be wearing them at home, especially when I slept, I found normal pillows uncomfortable. However, soft and fluffy blankets were so cosy and warm, so invest in some. You can even get them super cheap at places such as B&M. 
  • Whether you are bald or have hair, look after it! Be gentle with your hair, and if you have lost it, keep you head clean with a baby shampoo and moisturised with a good conditioner to stop flaking.
  • If you are worried about hair loss, and want to wear a wig, try organising it and getting one before loosing your hair. One thing I was self conscious/worried about regarding hair was loosing it and not having a wig. A weight was lifted when I had one all ready and waiting.