Me

Not sure how I missed all this before, but wow, just awesome news!!!!

I haven't updated you guys in a long time! 

In February I had my spine surgery.  I'm very glad that they had an anesthetist in the theatre as they don't normally.  But I'm not a normal patient of theirs.  The anesthesiologist gave me what I needed - I remembered nothing, had no issues with sickness, and didn't have a full general either.  I *know* it helped that one of my closest friends in an anesthesiologist at the main hospital in the area, as she told her colleagues to be on the lookout for me.  Also helped that they were brought into the theatre just for dealing with me and me only. 

Back has been improved but I DO still suffer from quite a bit of pain.  Pain management is big in my life right now.  Actually had a big long talk with my GP today about adjusting dosage and he wants me to be sure to have medication every 12 hours and to set an alarm.  He believes some vertigo issues I've been having is due to me NOT taking pain medication in the morning.  Fingers crossed!  I really do like my GP.  I genuinely can tell that he wants the best for me.  I told him I'd do as he asks and when I return from holiday, we can taper me off.  He said, "We don't need to, you are on a safe dose and it's fine if you are on this dose for years and years."  At the same time, if I don't want to be on it, we can taper me off.

Things change all the time.  I returned to work half days in April and still doing half days.  Not sure when (if ever), I'll return to full days.  My work has been outstanding.  While big corporate gets a bad name - it's times like this when they show WHY they are awesome to work for. 

My parents land tomorrow morning and are here for 3 weeks.  My husband and I are sneaking off next week for a sailing yacht cruise.  I'm excited and nervous all at the same time!

On the cancer front, my first set of scans since moving to maintenance injections only was very good.  The main tumor in the breast is down to 7mm x 3mm, the tumor in the auxilary tail is gone, and my lymph nodes look completely normal.  I'm told the rest of the body is "the same or better" than previous scans.  I'm happy things are still moving in the correct direction.  I do still struggle from time to time with the enormity of it all.  BUT I'm able to push a lot of negative thoughts to the back of my mind and have finally been able to "enjoy each day and the little things".  Genuinely it's really only when I pretend that I'll live to be 80 that I can truly function okay.  I know the reality is that I probably have a handful of years left, but as long as I pretend that's not true, life is more enjoyable. 

My work is happy for me to work from the USA this summer, so we are headed there for the holidays. 

Thank you for the update KFD, I think about you all the time. 

Great to hear from you, and pretty good news all round.

Thanks for the update.. xx 

Glad to hear things are going as well as can be expected..
Enjoy your holiday in the states xx

Glad things are stable and you were able to have the spine surgery! Unmanaged pain can cause all sorts of new issues because you end up in fight or flight with too much cortisol being released at the wrong times, so I hope taking the meds on a schedule helps reduce the vertigo. One other thing to be aware of, if it's positional at all (like goes away when you lay down or goes away when you are upright) a spinal CSF leak can sometimes be a complication after spine surgery and the symptoms can be a bit odd if it's not a large one.  I hope you have a great holiday!

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Just stay positive. We are all here to support you. Every day is another opportunity


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Glad things are stable and you were able to have the spine surgery! Unmanaged pain can cause all sorts of new issues because you end up in fight or flight with too much cortisol being released at the wrong times, so I hope taking the meds on a schedule helps reduce the vertigo. One other thing to be aware of, if it's positional at all (like goes away when you lay down or goes away when you are upright) a spinal CSF leak can sometimes be a complication after spine surgery and the symptoms can be a bit odd if it's not a large one.  I hope you have a great holiday!

I had that before.  Had a lumbar puncture about 15 years ago and had the leak.  Had to have a blood patch a few days later.  It was so bizarre because I felt AWFUL upright, but 100% fine when laying down.  So I kept trying to walk bent over.  LOL.  Blood patch worked thankfully. 

Thanks so much for the update, I've been wondering how you were getting on.  I'm rooting for you all the time. Kick that cancer's arsre!!! 

Glad your folks are coming over and you're getting away kid free! And getting to holiday in the US for an extended time. 

I had that before.  Had a lumbar puncture about 15 years ago and had the leak.  Had to have a blood patch a few days later.  It was so bizarre because I felt AWFUL upright, but 100% fine when laying down.  So I kept trying to walk bent over.  LOL.  Blood patch worked thankfully.

Yeah, that's the symptoms of a big leak. Glad the patch worked! I know quite a few with smaller ones and the symptoms end up being a lot more odd until the blood patch or self healing.

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Thanks for the update, I think we’ve all been thinking about you.  I’ve had ups and downs, mostly dealing with medication side-effects, but all in all, doing pretty well.  One has caused liver damage which they have taken me off of, no replacement drug, so it ups my chances of recurrence.  But I don’t focus on that, and just keep on keeping on.  All we can do, right?

Glad to hear you are doing well.

Just found myself thinking about you.  Hope you are doing fine.

Hello everyone!  I realise I have been quiet for a very long time. Those that know me in real life are likely shocked that I *can* be quiet.  I hope all are well. I know I can keep up with a handful of people on social media but certainly not everyone.

I’m doing well and just plotting through life. My life is unrecognisable from a couple of years ago, but I’m trying to continue to live my best life.

In December, I had a bit of progression of the cancer.  Luckily a brand new treatment had just been approved. So in early January, I switched from Phesgo to Enhertu. Enhertu is the new “modern miracle” drug that the NHS did NOT approve for breast cancer patients on the NHS.  I am grateful that I have private insurance so I can experience this drug.

My body IS responding and all areas of cancer had shrunk with my first 3 monthly review in March. While I have to be connected and it’s considered chemo, it hasn’t been too bad of an adjustment. I did finally wave the white flag and stop working. That’s been hard. I like working. I wish I was using my brain more.

I’ve been “doing” more little by little.  I do not want to bite off more than I can chew.

I have found a fabulous tap class that I’ve joined.  The class is for adults, and advanced tap, and has been held in a gym 50 feet away from the pool my daughter dives in at the same time and day for years!  Lol!  I’m glad I found it late rather than never.

It’s been hard having my body fail me, I’ve never been that person.  I miss lots of sounds in tap, as I have some neuropathy but I’m in my happy place all the same.

All of my hair fell out in about 5 days with the new treatment (not a side effect of this treatment though - ha!). I found my hair loss extremely traumatic and was very surprised at how affected I’ve been. Now that I know my body is responding, I don’t mind the hair loss so much.

I wear wigs which has really been good for my confidence.  I can swim and go down water slides with my kids and my wigs!  And I look like I’ve made an effort while utilizing the same effort as putting a hat on.  I wear different lengths depending on what I’m doing for the day. lol!  I wish I could have MORE fun but they are pricey.  I have 4.  All gingery (my natural colour), short straight and short curly and long straight and long curly.   I’d love funky colours but I won’t buy without trying on! 

School run time. I will write loads more later! 

Fabulous to hear from you!  Welcome back.

Welcome back indeed.