Macmillan Heroes

4 minute read time.

15 Nov 2022

Today (Tuesday) I switch to a different chemo drug (Docetaxel/Taxotere), together with a targeted therapy (Phesgo). I will also continue with the bone marrow injections (G-CSF) for seven days after each cycle. Once again, I read up on the side effects just to know what might be coming. But I also read other people’s blogs and descriptions of how they coped.

I know that everyone responds differently to treatment and my experience may not mirror theirs. I just wanted to know how bad bad could be and how manageable some side effects might be, especially of Docetaxel, which some described using rather colourful language. A common thread was: some people coped well with the first cocktail I have had but reported that they reacted badly to the second, and vice versa. This didn’t bode well for me as I’ve coped really well so far!

Some mentioned that they were also having the bone marrow injections, and some didn’t. I have coped well with those, too. I had some mild lower back pain after the three extra doses I was given whilst in hospital, and again on one occasion after the third cycle. Both times I was able to deal with the pain with paracetamol and it didn’t last more than an hour or two. I think I wrote in a previous blog that that was one of the side effects I had been most worried about.

Reading some of the horror stories left me feeling a bit nervous, more so as the next cycle approached. On Sunday morning I called the Macmillan helpline, hoping they would put my mind at rest and give me the benefit of their knowledge and expertise. I didn’t think I was in a really bad place, not losing sleep over it or off my food (not easily done!); just a need to know what might be waiting for me. HCA said afterwards he had noticed that I had been a bit down of late.

A wonderful Macmillan nurse with 30 years’ experience took my call. I explained my concerns and what had led me there. She knew exactly where I was coming from! She asked if the other patients had specifically put their side effects down to the Taxotere. I said some had, and some mentioned that they were also having the bone marrow injections. She explained that it was highly likely that the severe bone pain they experienced was down to the injections, and not the Taxotere or Phesgo. These have side effects, some of which can be serious, but severe bone pain is not usually one of them.

She told me about a G-CSF trial she had taken part in involving “normal” people, not cancer patients. There was a hulk of a rugby player in the trial, as fit and healthy as they come, who was reduced to tears with the pain, and others like her, who had no pain at all. It’s either going to hit you or miss you, depending on how your body processes the drug. Clearly, it was missing me.

The bottom line, she explained, is that if I’ve coped well with the first cocktail of chemo drugs (EC) and the G-CSF, I will almost certainly cope with Docetaxel and manage any pain from the G-CSF with paracetamol. This was sounding hopeful!!

I may get some joint/muscle/tummy pain from Phesgo. Other likely SE are: loss of ALL body hair (the little I have left on my head will go – here comes Baldylocks! - as will my eyebrows and eyelashes – eek!); my sleep may be disturbed due to the extra steroids I’ll be having, and I’ll probably have the munchies, so Joanne suggested getting some healthy snacks ready (does Stollen count?); I may well get tingling/numbness/pain in my hands and feet, and I may get bleeding from my gums/nose and general bruising, in which case they may reduce the dose next time; my nails may be affected and even lift off (I’m going to give black nail polish a try to protect my nails from UV light – nothing to lose – here comes Baldylocks the Goth!)

So it’s still a game of wait and see, but I’m feeling more relaxed and positive after speaking to Joanne. She was so patient, reassuring and knowledgeable, and ensured all my questions and concerns were addressed. She had all the time in the world for me. HURRAH FOR MACMILLAN NURSES !

When I told her I had been walking every day since my diagnosis, she said that would almost certainly have had a big impact. I really believe it’s made the difference for me. If you or someone you know is about to start chemo or have surgery or radiotherapy, even if it’s just a week away, it is recommended that you GET MOVING (Disclaimer: I am not a healthcare or exercise professional and you should check with your medical team before undertaking an exercise programme).

My treatment this weekend included a beautiful 11km walk by the River Thames with HCA, and a stroll around a local lake with our daughter and her family. Great medicine!