The view from 38,000 feet. Upgrades and downgrades

I’m writing this at 38,000 feet, Mid-atlantic. I’ve spent a lot of time here recently and have just earned my gold BA card. For me, this is not a badge of honour but a reflection of life taking a turn and spending too much time away from the family. Work has been busy and whilst I knew all these trips would need to be done I did not expect them to have been all within 6 weeks of each other! Only 2 more weeks and then I am on holiday, so there is, at least, light at the end of the proverbial tunnel. I’ve even managed an upgrade which doesn’t happen to me very often.

Life has continued on and for the most part I forget about cancer. I get a daily reminder every morning as I count out my 6 little reddy-orange neratinib tablets and my one anastrazole. There is also the cadence of my monthly rush of appointments as I have to have a blood test on one day, return the following day for the blood test reslts and to see the consultant, and then if both of these go OK I then need to return a third time to pick up my next lot of neratinib as the programme I’m on means I can only have one months supply at a time because of the side effects. I have to say, I have been lucky. I’m now 3 months in (I think – I’ve lost count, another good sign) I haven’t had any of the expected side effects (profuse diarrhoea) at all and even managed to cut out all of the preventative medication because I didn’t need it. This reduced my pill burden from 16 a day to an altogether more manageable 7. My yard stick is whether I can swallow them all in one mouthful or not and with 7 I can. 16 was a challenge….

My slow dissection continues and this time it is the turn of my ovaries. I’ve been on the Zoladex now for over a year and have “proved” that I can cope with the effects of the menopause. They won’t generally take your ovaries out until you have proved this as I guess it is kind of difficult to get them back in again! That said, I find it odd that you have to prove you can cope with something that would normally happen naturally, where like it or lump it, it happens, but there you go. My world is a little warped sometimes. The Zoladex is every 12 weeks, but it does mean another flurry of GP appointments which on top of the others and a full-time job where currently I am spending far more time out of the country than in is becoming ever more difficult to manage. Plus I absolutely hate these injections. It’s another contact with the medical profession and I see the sympathy in their eyes which I don’t want or need. Maybe when I’m at death’s door, but I’m not there yet so thank you very much but you can save it until I need it. I think that I’ve also had my fair share of appointments over the past 18 months so someone else more deserving can have them.  Each injection also hurts like hell, even if I put my local anaesthetic cream on the injection site. They have to go into your stomach fat and I don’t have a huge amount of that which apparently makes it hurt even more. It’s not actually a fluid they inject, it is a tiny capsule that then releases the medicine over time, but that does mean a needle with quite a large hole and I can see where each and every one has gone into my stomach, resulting in a look a little like a very localised case of very small measles. So the ovaries will go at some point in the future.

I attended chemo with a good friend of mine a couple of weeks ago. She’s doing remarkably well and we had a lovely day. It sounds odd, but she will know what I mean and won’t be offended, so don’t worry! It was good to sit and chat as there isn’t really much else to do as the medicines go in and then we went out for lunch afterwards. Her mentality towards all of this shit has been pretty much the same as mine. It’s horrible seeing her going through it, but it is great to have someone who I am close to that I can really talk to about it. The things we talked about were really quite funny but won’t be talked about in polite company. Every cloud and all that!

The other reminder that life isn’t quite normal is the scans of my lungs every 3 months to see whether I have mets (spread) or not. Regular readers will know that this has been going on since diagnosis. For good measure they also have a quick check of all my major organs to see if anything else has spread. The next of these is due on Friday of this week with results on Tuesday of next week. Last time I spoke to the Oncologist he said that if nothing had changed this time then we would declare the nodules just pesky little buggers that they have found incidentally rather than cancer in my lungs. This would mean that I am formally downgraded to stage 3 rather than stage 4. This is a massive thing – just go and look at the 5-year survival statistics of the two stages and you will see what I mean. They pretty much reverse. For stage 4 you are in the small minority if you are still alive in 5 years and for stage 3 you are in the minority if you don’t make it to 5 years. I don’t think I’ve ever wanted a downgrade quite so much in my life!

The clinic called late last week to try and rearrange the date of my scan as apparently they wanted to close the CT scanner on that day. It still panics me when I see the number come up on my phone. Getting the scan booked in was a logistical nightmare in the first place, so we set about trying to rearrange it. We tried various different options for a good 5 minutes and then bless her, the poor receptionist said she would get the radiologist to call me back. She duly did and we set about trying to get it sorted. I know the radiologists pretty well at the Chilterns now and they know the importance of this scan. We fruitlessly tried to find an alternative date and time where I wasn’t either out of the country or at another medical appointment. In the end, she said not to worry and they would keep the unit open just to complete my scan. God bless her! She knew I had all the appointments set up around this and also the anxiety that I suffer in the run-up to the scan and the results.

One funny story from all of this travelling that I have been doing. Those of you who travel regularly will have seen the relatively new machines in airports that instead of walking through at security you now stand in and hold your hands above your head for a couple of seconds as a screen moves across and takes a picture. I always sigh when I see these. My breast prosthesis always causes a problem with these and shows up so I always end up being searched. The first time it happened it really upset me but now I just get on with it. Once more, the gift that keeps on giving!

Short update: writing this after the scan – no change and stable. Phew….