Don’t you, forget about me

I’ve had so many appointments this week it’s been mental. I had a review with my surgeon to Wednesday. Long story short she was really happy with the operation and how I was healing up. The cancer was spread right into my armpit which is why my scar is a whopper, and much closer to my breastbone than they thought. She did say she took out all of the cancer that she could see with additional tissue and was happy that nothing was left that the eye could see. It was 10 cm roughly and an additional 3cm of pre-cancerous cells that hadn’t technically become part of the cancer yet. No wonder it weighed as much as it did! She also took out all 24 visible lymph nodes in my armpit, 11 of which had cancer. I don’t now have any other reviews with her until I contact her for further surgery. I checked with her that there were no timeframes on this. She said she wouldn’t consider me for my other mastectomy until I had finished all treatments but other than that I could take as long as I wanted. If I wanted to wait a year or two before reconstruction that was totally fine. I felt like a bit of a weight had been lifted that if I didn’t want to be constantly in hospital and once surgery after another once treatment had ended, I could give myself a break. On Wednesday night I went to my friend for facial reflexology. Now this is my kind of ‘treatment’. I’m still not allowed any massage (boo) but this was just a nice hour of relaxation R&R that didn’t mean me watching Netflix.

I had a meeting on Friday with my physio at the hospital. She was pleased with my range of motion but told me to get back on the paracetamol so I could make further progress. While I was with her, she said she was worried about the swelling on my back so sent me round to see the breast nurses. I had 1lt fluid drained out my 'none boob'. She said with the removal of my lymph nodes it would most likely come back so I have to go back in two weeks to have it checked. It does feel a lot more comfortable not having the swelling under my arm. I asked her about the lump on my back and she said I had a ‘dog ear’. This is just where the skin has been stitched after surgery that causes a lump in the skin. It’s in such an annoying place though it’s stopping me putting my arm down flat against my side comfortably. I can get it removed with more surgery but not until all of my treatments have been completed. Brilliant.

I’ve also had a meeting with the genetics team to get my BRCA tests done. Eventually! I only started this process the in the last week in May. Obviously not in any rush at this department to get shit done. They said it’s a 12 week wait for results so can put that on the back burner for now.

As always, I’m counting my life away in Monday MDT meetings and always thinking someone has forgotten to ring me and tell me what is going on. There have now been two meetings since my operation and no one has contacted me about my oncology plan. Apparently, everyone’s ready to go last week but no oncologists attended. She has forgotten about me! That’s good isn’t it. FFS. Not that I want to start chemo anytime soon, I’ve really enjoyed the rest from it, but I want to be able to plan my life for the coming months. Tragic that Christmas is revolving around my chemo sessions. Let’s see if everyone manages to get their shit together tomorrow so we can suss out the next 6 months.

Anonymous
  • There are days when I feel like I need a Project Manager to keep track of everything going on.  Hope you get your chemo dates sorted soon x

  • It is so annoying when you're forgotten isn't it? No one has contacted me about my second cycle of chemo due today, it's only because I asked about it yesterday when I had my PICC fitted  that I got given an appointment time. I have moved hospitals so I'm hoping that future appointments will be more forthcoming.

    I also have a dog ear bit of skin over my scar. You've done amazingly though. I didn't realise you may have to have further chemo.

  • It's a job in itself keeping track of everything isn't it  Joy I've enjoyed the last few weeks with no chemo waiting for surgery with nothing else going on. I'll not know myself when all of this is over haha

  • Ah that is so annoying I hope it is just the change over and they get their act together for you. I feel like that is the most frustrating thing when you don't know what is happening and when. Yeah more chemo then radiotherapy for me now surgery is done. No rest for the wicked Joy Do you know what chemo your going to be having and how often? 

  • I've just had my second EC, I have one more of them on the 16 November and then 9 paclitaxel weekly. The Im onto 5 sessions of radiotherapy and 5 years of Tamoxifen.

    Im hoping to be back teaching after Easter. If we can sneak a holiday in before then we will do.