How to live with a Chemotherapy Portable Pump at Home

We got home. I felt mixed feelings... I was happy because I was going to sleep on my bed along with my husband and I was very scared because I had no longer the nurses to look after me and my health 24/7 and that was a big change at the beginning.

I went home with the Hickman's line on my chest and my sister was trained by the nurses to clean it every day. After every shower she had to lift the adhesive and clean underneath, it wasn't painful but at the beginning it feels weird.

We had to follow strict times for the medicines and keep checking my temperature in case of a fever as I was neutropenic most of the time. Being neutropenic all the time means no close contact to any human beings  or animals, have everything cleaned and disinfected to the maximum as one do not have any defences at all to fight a virus or any disease. So you have to change the bed sheets after 2 days, use towels just once, have all surfaces sterilised and clean methodically, at the end I assure you will be obsessed with cleanliness around you.

I had to go to daily check ups at the hospital and spent almost the whole day receiving treatment, between the blood test, chemotherapy and weekly change of buns of the Hickman's line, the days stroll. Sometimes I needed blood transfusion that meant: stay the whole day until 3 or 4 pm at the hospital. Which was very hard on my sister and husband who came with me every day for treatment and most of the time felt sleep on my side. I was probably on a comfy bed or a lazy chair and my heart fell for them.

Going to hospital every day was at times exhausting, getting out of bed very early, swallow breakfast in order to take a bunch of pills and then drive trough the streets of Brisbane to get in time. My husband had to skip work every single day a few hours just to drive us (my sister and I) to the hospital and the go back to work to finish the shift. Not easy at all. But I won an Easter Raffle and went home with a lot of chokies (chocolates), rabbits and a beautiful basket, I was so happy when I saw my name on the prize that I almost cried.

And the Winner is... Barbara Maffei

I was so happy! I totally saw myself winning when I bought the tickets

I don't remember any downside of having a pump any than having a shower with it. I could sleep comfortably (usually at 6 or 6.30pm I was out...sleeping), watch TV, do my nails. I saw it as something I needed to be alive not as a bad thing, most of like a little companion.

In the afternoons I watched a LOT of movies most of them animations, I really love them so I had time to catch up on old movies and comedies I never saw.

Actually I don't remember all I did quite clearly, my husband says I used to space out a lot and fall sleep all the time. I was just happy to be home with my family, eating home made food, watching funny things and doing my nails using only bright colours.

My Sister's and my Nails, perfectly done by her :)

I kept eating my food as it was a medicine so that wasn't a big issue just another task I had to complete during the day. Although my sweet tooth helped me to keep indulging on Tim Tams and other things like yummy doughnuts.

I started to re-read the book You Can Heal Your Life (Louise Hays) and actually doing the affirmations gave so much strength and happiness. Before that I never realise how many things I had to be happy for or to be grateful of, that was a big eye opener for me at that time.

I kept all my affirmations from that time and read them from time to time and that gives me hope and a lot of happiness.

Experiencing a life threading illness is a tough reality and I found no use to think: Why me? Why us? On the contrary I just keep thinking about what tomorrow held for me and my family. What would I do when everything was over and dusted, like going for walks at the mall or meeting my friends. Always have faith and it doesn't matter which religion o God you adore but to have blind faith on getting better and be really strong to keep it together.

Enjoy the little things. Think of what really makes YOU happy and go and do it. I enjoy watching TV and movies that really makes me happy and it didn't require much energy and gave me really positive ideas and thoughts to concentrate on. Like all those Disney movies hold a message and I kept thinking on them when I was lying in bed or having dinner.

Having friends over is often very good for your soul, so you don't feel isolated

I know I already said in a previous post I didn't see drama movies or depressing documentaries, it might sound like taking it to an extreme but that worked for me, I never felt depressed or really sad during treatment at home. I didn't do the finances at home during difficult times, luckily my husband took care of everything. But I personally find that stressing so I didn't want to do anything with that. I concentrated on the good things happening to me at that precise moment (mainly daily events) and that is my little advise when your future is not that clear, concentrate on NOW, the future doesn't exists yet.

See you on the next post and remember to Love Yourself with All You Heart and Enjoy the Little Things!

My life in Hospital: How I decided to have my head shaved

Even though I do not remember the exact date, after two weeks of having chemo I noticed that I was losing my hair, I found strains of hair on my pillow every morning and it wasn't that bad but before it became a nightmare I decided to let go of my hair. One morning I talked to a nurse about shaving my head, and she called Adam. He came in with scissors and a shaving machine, I took the decision by myself, and I told no one of my family or friends, that idea just snapped on my head one morning.

He started to cut my hair, and I remember the scissors couldn't do the job because I had so much, so it took a lot of time. He gave a pixie cut like Mia Farrow’s hair, but as I run my hands through my scalp I could feel the hair falling on my hands… so I decided to have it really short or ‘0’. He kept saying like: “It’s a big change… are you sure? Aren't you going to cry or get depressed?” And I was like: “Don't worry keep going I know where I'm going”. The truth is that I really didn't had an idea of what it felt to have NO HAIR, and personally I felt like being nude and cold all the time.

My Shaved Head

The first days in the shower I usually forgot and several times tried to shampoo my (non existent) hair, and I also tried to touch it, comb it, it was like a phantom limb feeling, that’s how I can put it.

One big thing about not having hair was that I discovered that I had a really good looking scalp! I loved my head. Every night I put cream on my scalp and gave me massages, I enjoyed that part very much. And the cream helped me to loosen the few hairs I still had attached to the skin.

My Shaved Head

And I received one of the very big news in a long time, my little sister was heading to Brisbane to help me (and in the future she became my stem cell donor).

I was very happy on the countdown to see my sister, after two years of being on Australia I was desperate to see her. The day she came into my room was the first day I remember I cried a lot out of happiness and excitement.

My Sister, Rosagabriella and I at the Patients Lounge

A Collage... my first

In the meantime I distracted myself on the crafting group of the Hospital, every Wednesday I was there, sitting on the Patients Lounge waiting to have fun, talk to my fellow neighbors and create something different. I manage to do this beautiful collage on picture. It was done by a beautiful human being a volunteer, I don't remember his name (I will find out and update the post), but he helped us all doing the crafts, he used to carry all (paints, magazines, glue, beads, strings) with him 

and teach us how to create beautiful pieces of art. He used to also handover tea and cookies in the meanwhile. I remember him as an Angel. My crafty Angel.

Morning and Afternoon Tea Menu at the Hospital

On regards of the food and my appetite. I decided to give it a chance to all the food on my weekly Menu, I simply choose to eat different foods every day, and make it as I was taking pills or having medicines in the shape of food. I made a commitment to myself to not lose my appetite and eat all I had on the plate, sometimes it was simply too much and I couldn't clean the plate but I did my best not to lose any weight. As I said on the beginning of the Blog I didn't focus on the side effects of the treatment, and I didn't get almost any nausea or vomiting as a result of the chemotherapy. I remember that when my friends used to visit me they bring me a bag of cookies from a French Patisserie: Le BoinChoix, I used to love them! Yam.

I used to order salads for dinner, always soup if they were available, and I couldn't miss the dessert for anything in the world, every afternoon tea was I little bit naughty with the sweets... I can't stop myself I have a sweet tooth. I enjoyed discovering Australian sweets and desserts, like scones and cream I will always remember that.

On late February commenced the second cycle of chemotherapy, this cycle was stronger and meaner than the previous one, this involved 2 separate lumbar punctures for administration of the intrathecal chemotherapy (the one that goes into the brain), and 4 days of chemotherapy infusing continuously. That's how I got the chemobrain! 

By the end of February I was free to go home with a big bag of medication, a long list of daily visits for more chemotherapy at the RBWH, a double Lumen Hickman's line on my right side of the chest, and a brain that wasn't on its best. I got home to St. Lucia (Brisbane) along with my sister and husband, it took them a great effort to take care of me 24x7 and they did it good, I can't complain, I am so thankful to them.