top of page

P is for P & R

  • mrsdutchburger
  • Apr 24, 2017
  • 5 min read

No, not Park and Ride.. it stands for my new middle names: Positivity and Realism, from now on referred to as Pansy and Ruby. It's amazing what a few weeks of intense pain can do for you, once you have a glimpse of pain free life again. My short term memory must be really bad, because I know that it was cocking painful in September, October and November before I had radiotherapy but I had obviously blocked it out. It's been getting progressively worse over the last few weeks; the number of baths per day has been two as standard, and I had three the yesterday.

I went to UMC again for radiotherapy last Thursday morning so am waiting for the effects of that to kick in. I know it didn’t work overnight and actually made things slightly worse before it improved them last time so am just really hoping that it starts working soon.

I had an appointment with a doctor first, then a CT scan and then the actual therapy. Well, what a truly amazing doctor! The last times I was there, I had a German lady, Dr Schultz, who was really lovely - kind, understanding, professional and just well, good and I was expecting to see her again, but I had a man this time. I don't really know what it was about him, but he just exuded calm, kindness and expertise. He explained the procedure again, and how effective it can be, and generally is and he also asked about my background and the next steps in terms of treatment etc. One of his comments that has really stuck in my mind is that whatever treatment you have, you have to believe in it. Of course, it has to work physically and if it’s not compatible with the cancer DNA or your body it won’t work, but there is also the mental aspect and that is where the P & R comes in. He said you need to be positive and realistic. Believe that something will work but also know the seriousness of the situation and that it isn’t a miracle cure (though I am still holding out for a miracle if one is on offer!).

On the whole, I think I would say I have been quite P & R throughout the experience so far, with the random days of less positivity and a few days of less realism, but overall, I think it sums up my attitude quite well and I really like the fact that he said it, instead of the usual ‘quality of life’ comment, which, as I have said before, just serves to underline that you don’t have much quantity left so you need to focus on quality.

Well, since we have been back, things have been up and down. I was really glad to be home, the reassurance of knowing the hospital is a few minutes away (even if I do need to be quarantined if I go there because I have been treated in a hospital abroad)… I was thinking of the scene in E.T. where the house is swallowed up by a huge tent and everyone is wearing astronaut suits etc. The nurse I spoke to set me straight.. “It just means that if you did have to stay in hospital, you would get your own room”…. how inconvenient!

I spoke to Femke and the doctors from Erasmus hospital on Wednesday about appointments, pain medication etc. and had radiotherapy on Thursday morning. I need to wait 7 days before I can start with the new drug, so that means this Friday, another 4 days including today. I just want to get going now, it sounds weird but it feels as if I can feel the cancer growing, keep discovering, or thinking I am discovering new little bumps or weird things on my body. I just don’t feel really well at the moment, a bit of nausea and sickness now and again, lack of appetite, very tired, still got the pain in my leg and generally a bit rubbish.

We stayed with friends this weekend which was lovely; normally we rent a vacation house somewhere in Holland once a year, and go there to catch up and relax. It is never what you would call a ‘sporty’ weekend, but we usually go out for walks, or use the swimming pool facilities if there are any. This year, the lovely Iain (and Max) were generous enough to open up their house to us instead of renting somewhere, mainly because booking somewhere in advance was just quite tricky this year; not being able to predict how things would be health-wise. It turned out really well and was so relaxing and lovely. Like being at home, but not quite the same; actually their house is better than ours! Lots of extra space and extremely welcoming and comfortable, I made good use of their posh, almost swimming-pool size, bath which was a god-send in the middle of the night when the pain killers had stopped working.

The sun is shining today, Edgar cut our grass yesterday bless him, so it looks more Wimbledon than Wild now! (ok, that might be an overstatement, but I don’t have my glasses on and it looks pretty good from where I am sitting!) I just haven’t had the energy to do it lately. However, despite the sun and the tidy garden, I’m feeling less Pansy and more Ruby right now. I hardly slept again.. went to bed around 11 p.m., read for a bit and woke up with a jump when I dropped the book on my face. Had a bath around 1.30 a.m. and watched an episode of ‘Designated Survivor’. I like Keifer Sutherland in it, but I find his face quite annoying… has he had some plastic surgery?... mmm, off topic again. I then went back to bed, still waiting for painkillers to kick in, and ended up watching ‘The Fundamentals of Caring’ until about 4 a.m. Probably slept for another couple of hours and got up around 6.a.m. to start doing some translation and updating my blog… feel like I have been neglecting it a bit lately.

And a few minutes ago, I was just sick. Urgh… I don’t want to deal with this again.. the nausea and vomiting thing is a real drag.. so is pain, but somehow nausea affects everything and even though I know I need to eat, I really can’t face anything at the moment.

Pansy has temporarily left the building and Ruby is presiding. Well, at least Prunella pessimistic hasn’t arrived!

Hang on, I don’t like leaving things on a low note… I forgot to say that during one of my many phone call conversations with Femke last week, she mentioned that they had received the results back from the protein test on the tissue had taken when they did a lung biopsy before I started chemotherapy. The reason they did the test was to get an indication of how effective immunotherapy would be on my mutation… and the results were positive! Hurray! It is not definitive and certainly no guarantee, but it just means that it is likely that immunotherapy would be effective in treating my tumour. So the doctors in Utrecht and Rotterdam discussed the treatment plans again and agreed that I will still start with the Afatinib because that is still shown to be more effective, but if after 6 weeks the results are not good enough, they will move me straight on to immunotherapy. Good news after all!


 
 
 

Comments


LET'S TAKE IT TO THE NEXT LEVEL!

#cancer #diary 

© 2023 by Annabelle. Proudly created with Wix.com

bottom of page