DECEMEBR 2014 Mum had a low pain tolerance level as she had a very good health until then, Injections were painful to her, we tried intravenously but she felt too down sitting on the Chemotherapy room for hours. So, she endured the pain of the injection on her belly and leaving the place within 20 mins. She also had an injection of Filgrastin 6mg that she had at the end of the 7th Aza injection. Her blood counts dropped sharply in a week, 3 units of red blood cells and Platelets were ordered. However by Christmas she was 'strong' enough to travel to the country house of my uncle, she tried to lift up a bag from the floor and she said heard something like a bone cracking, the painkillers made the job and we had an excellent Christmas in family, those few days she seemed almost normal and we forgot for a while her condition, she ate normally, took the sun, smiled and got renovated, her mood lifted up.
JANUARY 2015 She complaint about pains around her hips and ribs, initially a hot bottle water did the extra work painkillers seemed not doing. I gave her gentle massages with oils. She started to struggle to walk without pain, to stand up and to dress up. She started to spend most of her days in bed, her appetite got reduced again, increased doses of painkillers did not work and she had ordered morphine for first time. Oxygen at home was ordered too. She had another transfusion of platelets and red cells just before starting the second cycle which she tolerated a bit better, this time she did not have the Filgrastin as her platelet counts were too low. Late January I cried of happiness to see her blood counts have improved, not a normal levels but it was an very positive quick response to the treatment, and it was just the second cycle. We all smiled including her haematologist. However that day of the appointment she complained about pain on her lower back, a couple of days before we had to call emergency doctors because hew pain was unbearable. Then this day of the appoitment the Dr ordered a magnetic resonance (MRI) of her spine and that she had to stay in the hospital to infuse her stronger painkillers.
They allowed me to sleep in the same room for a couple of nights and we talked a lot, she knew how much I love her, she thanked me for being there in that time when she needed me most. She was looking forward to her 3rd cycle of azacitidine.
FEBRUARY 2015 My flight return ticket was for the 6th February. We had only few days more together. The night before my trip the MRI results came back with bad news she had 3 self collapsed vertebras that were causing her the extreme pain. We were told about the recovery process, and it that it was to going to be painful and long , her bones were all weakened because of the anaemia of the last months and the disease itself. I cried and cried and cried but showed her a positive face when I managed to control myself, I slept in the hospital I holded her hand all night long we touched our hands like if they could speak, it was a profound moment in our lives, there were not more words needed, it was just mutual love and gratitude. I left Bogota that night and burst into tears in the airport. Leaving my mum in hospital was the worst feeling of all my trip.
HER LAST WEEK. I called my mum, dad and brother every day from the day I landed in the UK on the 7th Feb. They ordered a customised corset type so it could support her back and she might be able to move and walk again. Apparently it was very painful to wear and she could not handle it. On 11th Feb she should have started her 3rs cycle of AZA but they wanted to stabilize her pain first. She was sent to home on the 12th Feb and 2 nurses were authorized to take care of her at home (12 hours shifts). Mum and dad lived in a big house but my dad is 81 and could not manage to take care of my mum as I or a professional nurse. That night I was told she was on excruciating pain, IV morphine was not doing anything, she told my dad that the nurse was 'injecting her stuff on the back' but the nurse was not doing it. Early in the morning my mum was taken back to the hospital, Drs from the ambulance told us her oxygen levels were dangerously low and that she might have a fatal failure on the way to the hosp. They asked if we wanted to authorise CPR (Cardiopulmonary resuscitation ) we said not to do it because it would have caused more fractures and because she explicitly said not to it. I cried rivers because of the impotence during that week, I could barely slept, eat, or had any other thought that was not my mum.
I spoke to the pain control doctor by phone and I asked him to control her pain not matter if that put her on a state of unconsciousness or even comma, he told me about that possibility. For the family the priority was to control her pain not matter what. Doctors managed her pain relatively quick but informed us she had pneumonia, the bacteria was quite aggressive and expanded quickly in matter of days, they gave her IV antibiotics and expected to see some results by 48hrs. On the afternoon of the 14th Feb, doctors told us she was actively dying. Dad was on a disbelief state, he did not want to believe about the seriousness of her MDS and he expected us to be just exaggerating. Family members were told to say their good bye and she was conscious, probably not very alert but she responded with head movements. I managed to thank her by phone and to let her know that she was a wonderful mother, that I am the woman I am thanks to her. She passed away surrounded by her closest family members, and she was not in pain.
AFTERMATH I thank life for the opportunity that gave me to share with mum for 3 months when she needed me most. I felt I said everything and showed all my love that my grieving time was short. I closed the cycle very quickly and I remember her with pure love. Dad moved closer to my Brother and struggling to sleep but pills are helping him. He is brave and it is healing. I attended mum's funeral, I travel back for a week to deal with my mum's clothes and things that was painful but an important step to close the cycle. I felt the love of family and friends and of course my mum's love.
TO PEOPLE WITH MDS. Be positive, and follow Drs Instructions, don't try to be brave or stubborn and delay any treatment. Mum had blood improvements just after the 2nd Cycle with AZA and that is fantastic results. I believe that if her bones would not have self collapsed she would be with us. If you want any other information more specific please don't hesitate to request it. I'll be happy to exchange some messages. I'm sorry for the length of my story. I needed to put it here.