Life on PEXG

At the end of last week, I came to the decision that it was time to call a halt, either temporarily or permanently, to the PEXG chemotherapy regime I have been on. (PEXG is the combination of four drugs – capecitabine, epirubicin, cisplatin and gemcitabine).It was not an easy decision to make because I was so determined to have the 12 chemotherapy sessions. And that was part of the problem.

I was so fixated on completing the twelve that it took a while to realise that I was in trouble. A week after the 10th chemotherapy session – a week that was an unexpectedly tough week – I finally realised that my body was shouting at me. ENOUGH!

I had actually missed the first warning sign of what lay ahead. The huge loading of IV fluid that is part of each chemotherapy session had started causing me some minor and temporary problems over the past three sessions. At the end of the 10th chemotherapy session my eyeballs felt swollen to the point that I could not read the text that my son sent me to tell me he was on his way to pick me up.

The next three days were uneventful and tolerable because my body was in shock. I usually manage to function quite well during these days as the medication I take over this time controls the post-chemo nausea quite well, and my gastro-intestinal tract doesn’t start producing other reactions until day four post-chemotherapy.

The next warning sign was the early onset of my sore throat. It has always occurred on the Monday and Tuesday post-chemo and disappeared during Wednesday when I start to feel better. Mondays and Tuesdays are always my worst days post-chemo. This time the sore throat began on Sunday afternoon and lasted for over four days. In addition to this, there were the sore gums and lips, the post-eating pain and discomfort and various other reactions that were all much worse than usual. It was a while before I realised my sore mouth was due to several mouth ulcers, something I am asked about at every visit to see my oncologist.

It took till Thursday before I started paying attention to the fact that I was only just beginning the climb back up to feeling okay again. That’s when I realised that my body, particularly my gastro-intestinal tract, was shouting at me. I had been determinedly distracting myself for most of the week by working on the April issue of the Auckland Women’s Health Council newsletter.

As I reviewed the past week and acknowledged what was happening, my thoughts turned to my 11th chemotherapy session the following week. For the first time since I visited my GP with symptoms on 2nd October 2015 I felt fear. No matter how I approached it I could not get past the fact that I was terrified at what might happen if I subjected my body to another session of chemotherapy so soon. After a fairly sleepless night, I came to the decision that at Tuesday’s appointment with Dr S. I would tell him that I would not be having chemotherapy on Thursday 28 April. My list of questions would now be centred around what this might mean for the extra months of life I hoped for by completing all 12 chemotherapy sessions, and what, if any, my other options were, eg. maybe I could postpone the 11th chemotherapy session until 12 May and then quit?

Feeling rather nervous I turned up at the oncology clinic wearing my “I survived PEXG” T-shirt with my eldest son and ex-husband in tow. But Dr S. was nowhere to be seen and nor could he be contacted. Instead a Dr T. called my name and explained that as Dr S. wasn’t available he could see us. I asked him if he thought he could answer all my questions, thinking to myself that Dr S. had deliberately made himself scarce. Dr T. echoed what Dr S. had told me last time I saw him, telling me that it was almost unheard of for cancer patients to see the same specialist each time.

Dr T. reassured me that he was familiar with my case and he was sure he could answer my questions. I told him I had decided I could not take any more PEXG for a while. After going through all my symptoms with me, he said that if I had not suggested calling it quits, then he would have recommended it. He also said the first rounds of chemotherapy are usually more effective than the last few, and that dispensing with the last two sessions would not make any difference to my prognosis. I was so relieved and felt like a great weight had been lifted from my shoulders.

My next CT scan has been scheduled for 16 May But for the next few months my part-time job as a cancer patient is on hold. My body now has a chance to recover and heal. And I am looking forward to not having my life dominated by my PEXG chemotherapy regime. Fantastic!


Dancing with Mr D

Celebrating family birthdays

Today is my eldest son’s 43rd birthday, and it marks the beginning of a month of family birthday celebrations. My eldest granddaughter arrives from Australia tomorrow for a brief visit made in order to attend the 8th birthday party on Saturday of her half-sister. It will be followed by the 40th birthday of her dad on 3 May, which also happens to be the 33rd birthday of my third son, something neither of them has quite forgiven me for.

My eldest granddaughter will then turn 15 a few days later. I am very much looking forward to seeing her again, after her first visit in 10 years at Christmas. This year these are all extra special birthdays and I want to celebrate them accordingly.



Tenth chemotherapy marathon completed

Fortunately for me, my haemoglobin level did not drop significantly over the past two weeks, but continued its pattern of going up a little one week and then down a little the next week. I was therefore delighted when I received a phone call from one of the oncology nurses the afternoon before my tenth chemotherapy session and was told I could postpone making the decision to have a blood transfusion for another two weeks. What was even better was that no-one mentioned anything about blood transfusions during the whole day.

The only negative event was that it took two attempts to get the needle into the back of my right hand, and I have now got a large purple bruise down to my wrist. My needle phobia is getting worse each week.

I am now hoping that I might make it to my 12th and final chemotherapy session without needing a blood transfusion.

NZ Doctor Article

As my mother is far too modest to post anything she considers self-promotion, it is up to her number 1 son to hijack the blog temporarily and share a lovely article that I’m sure all her friends and colleagues would be interested in reading.

This month NZ Doctor has an article about Lynda’s life as a District Health Board junkie, and the tireless and selfless contribution she has made to the health system over the years. All your kids are very proud of you, Mum, and feel you don’t get enough recognition for the contributions you have made. Well done!

I hope this is big enough to be legible for everyone. If not, try Ctrl and + to increase the size of the image in your browser (Ctrl and – reduces it back to normal size).


NZ Doctor article

Ninth chemotherapy marathon completed

My low haemoglobin level and the recommendation to have a blood transfusion came up again at my ninth chemotherapy session. While I am still resistant to the idea, I am also aware that there is a possibility that one of the three remaining chemotherapy sessions may end up being delayed if I don’t have one. As I have 12 May circled in my calendar as the end of chemo, and I have already bought the T-shirt, I do not want to risk that happening.

But each session is taking more courage, grit and determination to turn up to, and my reserves of these qualities are becoming quite depleted. It is all becoming quite overwhelming, and a six-hour blood transfusion seems like another huge hurdle. However, having now talked through what’s involved with one of the oncology nurses I have more or less decided to agree to a blood transfusion when I turn up to my next chemotherapy session next week.

At the moment being a cancer patient is taking up far too much of my life and quite frankly I am sick of it. I am so looking forward to life after chemotherapy, to being able to eat and enjoy food again, and to having more time to spend with family and friends, especially now that I am only working part-time.

Roll on 12 May!