September 2019 - still no measurable disease, moving forward.

3 minute read time.

Well there’s nothing quite like a funeral and your own scan results to make you look at yourself and what you are going to do going forward. 

I said in my last blog I had no sweeping statement about the future and I suppose I still don’t. My cousins funeral was in May and it was very touching the church was packed and the crematorium was overflowing with people and the scenery in Scotland was beautiful. I made the decision to come back to volunteering with Macmillan as a champ, I had taken a long break as I was finding it difficult being positive for others with the knowledge that my cancer had returned, it’s easier to feel more positive when your own diagnosis is going right. My last scan was in August a bit later than normal and I would have had a long 5 weeks for the results but for the fact that my hospital has an app that gives test results when they are available so before my appointment the results came through with the narrative saying stable, no change from the previous scan which means no measurable disease still. That takes a lot of pressure of the appointment, even if it was bad news as you can be more prepared with questions.

Pembrolizumab has been approved for 3 weekly and 6 weekly infusions now at my hospital so next time I have an appointment we will be talking about wether I swap over. The plus points being 6 weekly visits to hospital means life can continue on a lot more easily. Easier to plan in holidays within 6 weeks than 3, and if I wanted to start a course, or volunteering or working or anything it wouldn’t be so disrupted by hospital visits.The fatigue afterwards would also be further apart.

The negative point is it’s double the dose every 6 weeks, so I will have to ask if that means the possibility of more side effects which might negate the reason for wanting to have visits further apart, but on here there is someone having 6 weekly treatments with no difference, however not everyone is the same and I’m on dose 39, and sometimes when that cannula doesn’t go in the first time that’s when you wish the treatment was all over and done with but in the grand scheme of things it’s not long now til March when treatment finishes. 

Walking Netball has started up again after the August break but I’m not feeling as fit as I was, this is possibly because in my middle week I went to a Macmillan Cancer Voices conference. That amount of concentration can be tiring and train disruption on the way home. It was a good conference though, it made me feel more like the younger me when I used to go to quite a few conferences due to my job. I miss the more confident and focussed me, I’m wondering if she’ll ever come back, well maybe that’s the next thing to work on, I’ll add it to the list.

Stop procrastinating about decluttering and redecorating, feel less guilty about not working or do something about it, find a purpose/ focus and live life as fully as you can. 

Oh last hospital set of visits we gave our usual National trust properties a break and went for a new walk nearer to the hospital to Byron’s Pool and then went to an old Inn that we have often driven past and not gone in. Apparently just as well as they have not served food for the last six months and have just started doing it again. I had the best chips ever, I haven’t had chips for ages due to a more healthy diet but the spinach and mushroom lasagne came with salad and chips and they were gorgeous and the Inn was the sort of place that made you feel at home, so we may just have to go there again, now is that a reason for 3 weekly or 6 weekly treatments ! 

Anonymous
  • <p>Hi KT.&nbsp;</p> <p>I&#39;m so pleased to hear you&#39;re doing ok. Long may it continue.<br /><br />Have they offered you a port? Would seem to be a good idea, especially if the 3 weekly infusions are to continue. Or even 6 weekly for that matter.</p> <p>Take care and enjoy life.</p> <p>Lynn xxxx</p>
  • <p>Thanks&nbsp;, I&rsquo;m thinking possibly 5 or 8 more times to go now. Port has never been offered, does it sound silly to say I feel a bit illogically squeamish at the thought. Will add it to my list of questions for the next appointment.&nbsp;</p>