My bag of sunshine!

On Monday 25th October, I was back on the chemo ward to start cycle 6! Everything went smoothly, and once again, I had my two hour dose of IV magnesium. I am also continuing with my potassium drinks at home. I passed the time by teaching my aunt how to play Top Trumps (over the weeks I have introduced her to several new games), chatting to my wonderful friend Rosie who came to see me at lunchtime on the chemo ward and by doing more online clothes shopping! This seems to be becoming a weekly occurrence, so perhaps I should leave my phone and wallet at home next Monday…

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The highlight of Monday was discovering the real reason behind my funny tummy that started a couple of weeks ago, and has taken a while to calm down. Initially, it was thought that magnesium drinks had upset my tummy, and whilst they may have contributed to it, the main reason was because I had some how got Salmonella! Everybody was totally shocked by this, particularly because I did not get sick and did not lose my appetite. The only problem I had was going to the toilet a lot more than usual! I have had food poisoning on several occasions and always been quite poorly from it, so it surprises me that I seem to have sailed through this bout of Salmonella! To be on the safe side, I’m now on a course of antibiotics for the next week.

 I have two chemo sessions left before my CT scan will be repeated, so I thought I would share what I keep in my chemo bag. My siblings prepared this bag for me before my very first chemo session  in June, and lots of things have been added to it since. I find this bag very handy because you never know if you will be on the chemo ward longer than anticipated. For example, you might find yourself there longer if you need IV magnesium or a blood transfusion, so it is good to have things to keep you occupied!

My chemo bag essentials

 1) My mindful colouring book of swear words from my wonderful colleagues is always with me for chemo. This is book is actually permanently in my handbag because I love it so much! The words (often very explicit) in this book remind me that I am pushing ‘Cyril’ out of the boxing ring! 

2) I have a wide selection of games in my chemo bag (some childhood favourites). Thank you to everybody who has purchased games for me. They have not only kept me occupied during chemo, and in the hospital, but also at home.

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3) I also keep a comfy pair of trousers (on loan from my sister) and a hoodie (on loan from my brother) in my bag. The trousers are handy if I find myself on the chemo ward for a lot longer than planned, and the hoodie is handy when I have the cold cap on.

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4) I also keep Jennifer Young mint foot cream in my bag. I got this product using the vouchers that my school generously gave me when I started my chemotherapy. Jennifer Young specializes in beauty products for chemotherapy treatment. For more information look at: http://www.jenniferyoung.co.uk/. I keep this is my bag because my wonderful auntie gives me fantastic foot massages, which I find very relaxing when having chemo.

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5) There is also a very cool bag (a gift from friends) in my chemo bag. It is full of jelly beans and other sweet things. This comes in handy after I have had my premeds, two paracetamol, Lorazepam and my anti sickness tablet. This is because I have five minutes or so where I feel like I am drunk and often end up in fits of giggles! These few minutes take me back to my Birmingham University days, and the nights that proved I could not handle too much alcohol; one of which resulted in me falling asleep on the floor of a toilet cubicle in a club! For the purpose of this trip down memory lane, I have included a photo from that infamous night (it is before my little sleep because this was not caught on camera)! I was funnily enough reminded of the other photo (the one where I am sporting a very interesting facial expression) this week. It is further proof from another night when I once again showed that I can’t handle my drink!

6) I keep my slipper socks in my bag as well because I find them more comfortable than shoes when you are sitting down for long periods of time. Grip on the bottom of shoes or socks is important on the ward as hospital floors are often slippery. 
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7) My earphones are always in my bag because I have found music is very calming for me, particularly when I feel very anxious, and it feels like my heart is popping out of my chest.

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8) My wooden comb, Paxman conditioner and soft headband are also in my chemo bag because I am using the cold cap during the treatment. The nurses use the comb when they prep my hair for the cold cap and they put the Paxman conditioner on. The headband helps to make the cold cap feel more comfortable because it covers my ears and avoids them from freezing!

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9) I also carry my journal in my bag. My siblings got me this journal before chemo began in June and started it with a childhood photo. It is now full of messages of support and photos. I keep it with me at chemo because I have met some very inspirational people on the ward, whose words of encouragement have been a huge help to me and they have written in my journal. This journal has become so important to me because in my low moments I can look at it, and it helps to give me the boost that I need.

I hope that sharing what I keep in my chemo bag can be of help to others. Without a doubt, this bag has been like a bag of sunshine that has helped to brighten up each chemo session. I don’t always use everything in it but knowing that I have it all there with me is always such a help.

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A guide to scalp cooling and managing hair loss

imageI received my diagnosis on a Thursday and on the Friday I was sitting in front of the professor in charge of my chemotherapy treatment; which was to start on the Monday. There was not much time to get my head around what was happening. I felt relieved that my sister was taking notes during the consultation, because there were moments when I felt like I was present in the room in my body, but not in my mind.

Before the professor came in, we met with his specialist registrar who took us through how the treatment was going to work and what drugs were going to be used. Initially, I was meant to have chemo once every three weeks (3 sessions). When the issue of hair loss came up, I became very distressed. I was told that the hair loss would happen three weeks after my first session and that it would fall out quickly. I think this distress was due to the fact that so many things were changing so quickly.

When the professor eventually came I was imageclutching my sister and was very tearful. He immediately said, “Everybody has given you bad news so far, but I am going to give you some good news.” Instead of having the drug that causes hair loss in one big dose every three weeks, he decided he would administer it weekly so I could try the scalp cooling treatment. Even though he was clear that scalp cooling does not always work, this news instantly took a worry away from me. Although it is hard having chemotherapy each week, this pattern has actually worked well for me. I feel comforted by the fact that I see the doctors each week, and having the chemo drugs administered each week gives me clear milestones to tick off.

imageScalp cooling can reduce the hair loss caused by chemotherapy drugs. These drugs can cause hair loss because they target all the rapidly dividing cells in the body. Cancer cells are rapidly dividing but there are also healthy rapidly dividing cells in our body, like hair follicles.

The scalp cooling treatment works by reducing the amount of chemotherapy drug reaching the hair follicles. Scalp cooling doesn’t work with all chemotherapy drugs and it is not possible to know how effective it will be. In my case the drug Paclitaxel, which makes up 20% of my treatment, is the one that causes hair loss. Scalp cooling doesn’t work with all chemotherapy drugs and it’s not always possible to know how effective the treatment will be.

The cooling cap is placed on my head thirty minutes before the chemo drugs are given. This ensures that the scalp is frozen to the correct temperature. Prior to putting the cap on, the nurses wet my hair, put conditioner in and place my soft headband on, making that it covers my ears. Next, two nurses place the cap on together and push down hard to ensure that there is no gap between the top of the cooling cap and the scalp. Then, they put the chinstrap in place. I find the strap the hardest element of the cap because it is very tight. I don’t seem to find the cap cold-I know this is bizarre! My boyfriend Jonny, who plays American football, looked at me once when I was wearing the cap and told me that he could not cope with his hand in a bag of ice when he dislocated his thumb in football, so he was in awe of how I could deal with a cap that freezes the scalp to -4C. Interestingly, when my cousin came to chemo the cap impressed him. He is known in the family as the one who always gets hot. I recall family holidays with him sleeping with wet flannels (or sometimes even makeshift flannels!) He saw the cap and declared, “I need one of those at home; it would sort out my issues of getting too hot at night!”

Going back to the cooling cap.. As I said, it goes on thirty minutes before the chemo is given and it must stay on one hour after the chemo drug have been administered. It is at this time that I have one of my aunt’s famous foot massages! The massage seems to take my mind of the cooling cap. The paracetamol and lorazepam that the nurses provide also help to deal with the cap. The paracetamol minimizes the chance of a headache and the lorazepam instantly calms you down. I also find that playing games or working on my colouring books helps to take my mind off the cap.
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The nurses are amazing because from the first session they gave lots of advice on how to care for your hair during the treatment. I have been following this carefully in order to have the best chance with the scalp cooling. The fabulous Sandra washes my hair for me on Tuesday mornings and that is the only time I wash my hair. We do it on Tuesday mornings, because after the treatment on a Monday, my hair has lots of conditioner in it. It sounds strange, but having somebody else wash my hair makes me feel better. This is because if hair comes out at this point, I seem to panic less.

We wash my hair using the Paxman shampoo and conditioner. The company that make the cooling caps produces these products, and they were recommended by the nurses. Once my hair is washed, Sandra gently combs my hair with a wooden wide comb, taking care not to apply pressure on the roots. I then wear a soft headband and leave my hair down to dry. The nurses also advised that I do not use straighteners or a hair dryer on my hair as it damages the follicles. After this, I do not comb my hair until the following washing session. I wear soft bands to keep my hair away from my face, or tie it up with a very soft scrunchie. Finally, I sleep in a hair net (this was also recommended by the nurses) The hair net means that my hair is contained during the night, and fewer knots occur. They are actually quite comfortable to sleep in. It is quite an interesting look to be sporting and my sisters have come up with some interesting nicknames! The nurses suggest sometimes cutting a couple of inches off your hair to reduce the weight of it on the roots. Now that my hair has got longer, this is something I will be doing soon.

imageUp to this point the scalp cooling has proved effective for me. I have had normal hair loss but nothing has come out from the roots. I fully expect my hair to thin because the nurses explained that this happens. Today, I commence cycle 3 of my chemo. I will continue with my hair regime to give myself the best possible chance of the cap working. If it continues to work, I will be really relieved and happy. I feel like whilst a lot of things are out of my control, using this cap has given me the chance to take control of, what is in the grand scheme of things, a small thing. In the back of my mind, I know that the effectiveness of the cap might change, but I feel more at ease with this now. This is partly due to a lady I met on the chemo ward. When I went for my second session, the lady sitting next to me was having her first session. My family and myself got chatting with her. She was bright, bubbly and kind. We spoke about the treatment we were both having. She is not having the scalp cooling for her hair, and when she said to me that she was going to embrace any hair loss and “rock the look,”she made a very big impact on me.  I realised that if it happens to me I have the strength to do exactly what she said. I feel like I was meant to sit next to this lady on that particular day because sometimes it is the words of somebody that you do not know that make a mark on you.
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The quote below is taken from the Paxman website and is a description about what scalp cooling offers.

“For patients, this means the opportunity to regain some control, maintain their privacy and encourage a positive attitude towards treatment.”

I firmly believe these words, because if I think back to the meeting with my professor when I was clutching my sister in complete distress at the thought of loosing my hair, the mere fact that I am using the cold cap has instantly given me a more positive attitude towards the treatment.

Using the cold cap can be worrying, but if it is something that can be offered to you, it is worth trying. It can be uncomfortable and some patients will find the cold harder to deal with than others, but the nurses go above and beyond to make you feel comfortable, like making sure you have heated blankets.image

I was anxious the first time the cap went on, and there were moments when I wondered if I would manage with it. However, I think it helped that I had made my mind up that I was going to persevere and think positively about the cooling cap, no matter how it felt. As Theodore Roosevelt once said, “Believe you can and you’re halfway there.”

Further details on Paxman’s scalp cooling and hair care products can be found on http://shop.paxmanscalpcooling.com

 

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#FindingCyril

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