Its been a few weeks since I last posted anything so I'm a bit behind, sorry! Just wanted to say a quick thank you for all the lovely messages I have received and to everyone who stays in touch.
My last blog was after 3 rounds of paclitaxel. For the 4th round, I was due to get a blood test and see my oncologist to see how everything has been going. So my lovely nurse came around on the Tuesday morning to access my port and take my bloods. When I got to the hospital in the afternoon to see the oncologist, I was told that I wouldn't be receiving chemo that afternoon. One of the blood tests they run is for levels in your liver called ALT. Normal levels ranges from 10-30ish. That day I was unfortunately up to 130. My oncologist said this probably due to a build up of chemo toxins in my liver. I was told we would try again the next week and to rest and keep my fluids up. I was really disappointed as it meant my surgery would probably be pushed back.
That week I had my usual lovely times with Louie Patooie and my wonderful friends. I have had lots of tears over this horse recently. It's been really hard not being able to join in on all the amazing things that I want to be doing, and being left behind is so hard. It is so heartbreaking watching the life you want just go on without you, and there is nothing you can do about it.
I took Louie for a plod back to the paddock the other day and as soon as I got nervous about something he had a tiny tantrum which was not ideal with me on his back. All these pony thoughts and stresses (that I shouldn't be stressing about) have led to me having so many idiot crying sessions as I am so worried I won't be able to bring him back in to work and he might be too much for me to handle. I hope so badly that we can work together and get through, I just love him so much. I know I need a fun, safe horse though. He used to be just wonderful before he learnt to sproing me into the air, so maybe he can get back to being that little horse again.
After a week of attempted rest (I hate rest), it was time to try for chemo again! My nurse came to do my bloods again on the Tuesday morning and off they went to the lab! That afternoon I went off to hospital, and was again told I couldn't have chemo. I had got my levels down to 99. Still three times higher what they should be! If they were to give me chemo my liver would be at risk of long term damage. I stayed at hospital to have my zoladex injection though, the nurse was fantastic and I barely felt anything this time. I was really gutted to not get chemo again as this meant I was now two weeks behind on my treatment plan and wasn't sure what this meant for my surgery. So yet another week of rest and extra water!
Because I hadn't had chemo for two weeks, some of my side effects weren't as bad and I was able to spend some more time at work which was a welcome relief. It feels good to do normal things! My blood noses stopped for a week or so, and my body wasn't as sore which was nice. The hot flushes and having trouble sleeping seems to be increasing, though this is probably from the zoladex. My eyebrows and eyelashes are disappearing at a steady rate, so I don't recognise myself when I look in the mirror! I miss my eyebrows and lashes so much. Much more than when I lost my hair.
By the time this Tuesday came around, I was so nervous for chemo. I was told they would give me chemo if I could get my levels down to 60. This time my nurse came to take my blood on the Monday, and then if I was too high they would let me know before I came in to hospital on the Tuesday. On Tuesday morning I was told my levels came back at 61 which was right on the fence, so they decided to give me a lower dose of paclitaxel. From now on I will be having regular blood tests to monitor my levels, rather than the usual three weekly ones. If my levels come back high again next week, my treatment plan will probably be changing. While at chemo this week, a lady had come in to the chair next to me as I was finishing up. I was absolutely horrified about how she spoke to the wonderful nurses. Her and her family members were so rude, questioned everything they did, and asked them if they even knew what they were doing. All the nurses on the team are so wonderful. They are kind and polite, and try their best always. They know I don't like needles so cover them up and giggle through it with me, they tell me when it's time to chew my mints so I can't taste the awful port flush, and they are always smiling and making sure I am comfortable and ok. They are the most amazing people and I can't believe people can be so nasty to those who are helping to save your life.
One little positive that is pretty exciting.... is the amount of hair I have growing back! it is growing back so crazy fast, and is so soft and fuzzy. It is strange having hair again! But I am so excited to seeing how fast it grows and what colour it goes. It looks pretty dark in photos, but is quite light in real life. I'm still hoping for blonde curls! I have been taking progress photos every week, so this is my four week progress - pretty good for only four weeks I think!
Tonight I was lucky enough to have a wee ride on my friends gorgeous horse. He is a lot bigger than Louie and I love riding him! He has a wonderful canter, is so nice and responsive (which is extra nice when I don't have any leg muscles left), and always takes care of me. It was such a nice way to end the week! I miss riding so much. Louie has been wonderful the past few days though. He has been really calm and quiet, and nice to be around for grooming. I have practiced our trust technique with him as well and was really impressed with how he responded and stayed with me for that.
After being back on just one dose of the lower chemo, I have already been feeling it a lot! My muscles are so sore, especially in my lower back, hips and legs, and the blood noses have begun again. I was surprised how fast it all came back on a low dose though! I'm also extra tired, and don't feel up to as much, but I'm hoping if I can get some better nights sleeps this might change a bit.
As always, here is a beautiful Louie to finish the blog. Hope everyone is having a super evening, and thanks again for all the support xxx
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