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!

The First Hospitalization and Chemotherapy Started

I was hospitalized on the room 27 of the 5th floor of the Royal Brisbane Women Hospital (RBWH) on the Oncology area, specifically on the 5C Ward. On and individual room that normally was used for patients who had received a (stem cell) transplant, so all my fellow neighbors (patients) asked me about my ‘transplant’ and how was it going. I never understood why they kept asking me these questions about my ongoing ‘transplant’ until a nurse explained to me what was happening.

Royal Brisbane and Women's Hospital - My second home for a long time

My Star

I really liked my room, my good friends bought me two beautiful balloons (a star and a smiley) and they kept me company. I had a beautiful view of a big, big tree which was really green and leafy, I wasn't feeling that bad so I never realized that I was ‘that’ sick and why was everyone so worried.

First thing in the morning the doctor ordered a Bone Marrow Aspiration (BMA) to establish the type and details of the disease.

That very same night I had a meeting with Doctor Kirk Morris (MBBS, FRACP, FRCPA Senior Medical Officer, Clinical and Laboratory Haematology from the RBWH) in charge of my case and his registrars, it was a really big bunch of people in my little room. He said after all the blood tests I was diagnosed with  Acute Lymphoblastic Leukaemia or ALL, that was an acute type of leukaemia and they had to act really fast or it will kill me, later I will be needing a stem cell transplant (from a sibling or a stranger), but at that point the doctor said it was pointless to discuss that matter, all I was thinking was: "All my siblings are in Venezuela – South America, what am I going to do?"

My Smiley

He brought to my room a few consentment pages for me to sign, he said that it was my choice to start the chemotherapy or I would probably die in three (03) days without it. I didn't ever thought about not taking the  chemo or other procedures, and sign immediately all that was given to me.
My doctor is a really sensible person, he always told me the truth from the beginning in a very good way and I felt from day 1 I was in good hands. We spoke about the side effects of the treatment, such as: hair loss (very scary for me), fertility (I lost it completely after all the treatments), amount of possible cycles of chemo, rounds of chemo, appetite loss (which I never suffered really bad), the vomiting, fatigue and having chemo brain (which is being confused and forget things all the time), those are the main side effect I remember. 

The nurses brought more paperwork to be signed: I needed a Hickman's line...ok I signed everything and was carried to radiology to install it. The procedure wasn't painful the first few days I felt it in my sleep but after a week it was part of me.

IV Pump Machine or Wall-e for me

I got hooked to an IV pump machine I used to call wall-e like the robot in the Disney movie, and from now on I will refer to it as wall-e (my perpetual companion). Since I could barely move being attached to wall-e 24 hours a day, I had the love of my beautiful, compassionate, good (and all the adjectives you can imagine) FRIENDS who helped me: bath, change, comb my hair, everything I couldn't do because of my new attachment. I will always be grateful to 
them and they will always have a special place in my heart.


One of my friends (Marilyn G.) took my PJ's everyday and wash them and bring me beautiful clean clothes every morning. She was my angel!

The 9th february the first cycle of chemotherapy started, the aim of treatment is to destroy leukaemic cells and induce a remission. This means that there is no evidence of leukaemic cells in the blood and bone marrow and that normal blood cell production and blood counts are restored. 

After further analysis of the Bone Marrow Test, Dr. Morris explained they had found another characteristic of the Leukaemia, a particular genetic abnormality found in my leukaemic cells, called the Philadelphia (Ph) chromosome, so I was not just Leukaemia ALL but ALL Ph+, so I started a new drug called: Glivec (imatinib mesylate).

All the days happened quickly, or that's what I remember, it is nowadays a mixture of memories and I'm writing all this with the help of another set of eyes (my husband's) because is not clear for me. 

The doctor explained the course of medicines, procedures, duration, side effects (again... I couldn't hear them, I ignored them all the time) I was going to receive and the chemotherapy started right away after he left the room.

I thought it was going to be painful (I was scared) or something like that... it wasn't, maybe a metallic aftertaste in your mouth but nothing more. Because, I personally believe chemotherapy was associated with pain, skinny persons, gray skin, pale faces and no hair (remember Philadelphia? the movie, I know it was about Aids but something like that... scary), so i immediately imagine myself ageing when the nurse injected me with the first cycle. None of that happened.

I was inundated with information, dates, values of blood cells, and a lot of books and booklets about the chemotherapy and Leukaemia and choose NOT to read a thing, nothing, I refused to read secondary effects, or anything related to the disease I preferred to listen to what the doctors had to say that was the best choice and follow their advice. Instead, my husband was reading everything he could and asking all the questions.

At that time, I decided to close all my social media networks, I couldn't deal with the fact of explaining everything infinite times. I even didn't want to talk on the phone and hear people (even my closest family) crying, now that I look back I think I was in denial, I never felt sick, yes, weakened but never gravely ill.

I firmly believe that helped me, I focus on the bright side of the walk, reading, watching TV, talking and enjoying my friends, making new friends on the patient lounge. I really convinced myself those were vacations, because I was in a perfectly clean and beautiful place, I had a room for myself (which is a very rare case in a public hospital), I was alive, I could: walk, talk, smile. And started to live being grateful of every little details I noticed around me, like the 'good morning' of the first nurse I talked in the morning until the 'good night' I received from the lady in charge of delivering the food (to my room, yes! I had room service with a Menu... by the way). So, I felt very grateful to be treated in a good health system, with beautiful doctors, lovely nurses and I even found a really good friend who spoke spanish like me: Maria (she was the cleaner of the ward). And I focused on not letting anything to take away that happiness I found around me.

I think my hubby, friends and family thought I was becoming crazy in a hospital, receiving chemotherapy, suffering a life threatening ill, and being happy (not all the time) but most of the times.

I used to talk to myself when I was becoming sad and felt like crying and used to say what my mom (Ingrid G.) says: "Tears don't solve anything" and that helped me to keep going.

I was going to the patients lounge every moment I could, I was feeling energetic and fine, I joked my friends who visited me every day and also took turns not to leave alone at anytime, God I am so blessed to found them here on the other side of the world. And not having any more family than my husband that was a big relief not feeling alone.

After a few weeks I started to notice that I was the only patient on the floor who had long (I mean really long hair). My fellow neighbors had really short o no hair at all. That made feel so guilty and ashamed, I really don't understand why… but that’s how I felt at the moment. It was so hard to wash my hair at the hospital, I was hooked to wall-e, and I didn't have any conditioner (just a liquid soap to wash yourself completely), combs or scrunchies, for me at that moment that was a BIG thing… my beautiful long HAIR. I was so superfluous at that time.

I started to colouring children's books when I was alone in the room to keep me distracted or to focus on something colorful, beautiful and different that the hospital environment and that helped me to construct a routine. I felt so happy when I finished every draw, I remember all the nurses used to joke with me about it, and that was good too... I had another reason to laugh and make them laugh. That was my personal happy time. I also use to carry them with me to the patients lounge and draw while watching tv or sipping a cup of tea, enjoying my 'vacation'.

All the personnel at the hospital (the nurses, doctors, registrars, cleaners and general staff) were so kind to me and also my friends, I could never complain about anything.