Just some snaps from this long ass journey
I know I sound like a broken record of selfishness - I know I am lucky that I have no cancer in my body and my treatment is almost done but these last few months have been so so hard.
This week I have another chest/viral infection, doctors have basically told me not to go out. To rest up with plenty of fluids, over last weekend I had several dizzy spells whenever I was on my feet for too long (most likely due to low counts) and I was just so exhausted I could hardly move. I understand that as my body has gone through 11 months of chemo it is just struggling now but it doesn’t make it any easier.
Yesterday I was feeling a bit better, my mum & my husband played 9 holes of golf and I drove the golf buggy around which was fun & it was just nice to get out of my house. But then the bone pain set in when I got home.
It’s so frustrating, I have a Neulasta shot to boost my white cells. Previously after the shot for about 24 hours I got pain in all my bones & severe night sweats. Then after 24 hours these side effects would pass and I would have a good 4-5 days of feeling well before my next round. Now I have the neulasta shot, I have bone pain & night sweats for about 72 hours, then after 2-3 days of feeling well I get this severe back pain. It’s so frustrating when the things that are put in place to help you are making you feel worse. I’m at the point where I am weighing up the benefits of having the neulasta, as the side effects from that seem to be worse than the increased risk of infection.
The back pain is so intense it wakes me in the night as all my muscles spasm and I get shooting pains down my arms and legs. I am on a combo of nurofen, diclofenac (anti-inflammatory), oxycodone and Valium and its still insanely painful. Plus I have had several scans on my back because every time my bones hurt it sickens me with fear that my tumor has come back.
I am also experiencing increased neuropathy in my hands and feet. I am really starting to struggle with buttons and shoelaces. Plus I also have a constant ringing in my ears. My oncologist tells me all of these things are usual side effects of my chemo regime but not having them for 10 months then when I am so close to being done getting hit with them all at once really kinda sucks
So now I am lying in bed with a heat pack on my back, my trusty nurse pups next to me trying to get back to sleep as I have been up since 3am and I have appointments all day today. My head was just spinning with all these thoughts so I had to just spit them out onto here in the hopes that it helps
Everyone keeps saying to me “you must be so excited to almost be done and go back to NORMAL” I’m so tired of feeling like a freak. I wasn’t aware that I am currently not normal. I know chemo & cancer weren’t part of my life previously but having it doesn’t make you less normal. Yes I am looking forward to having my health back, yes I am looking forward to un-stalling my life and buying my house with my husband and hopefully having babies. But as for this so called normal, I don’t think it exists. Whatever ‘normal’ I had before I was diagnosed is gone, I will never be the same person again and that is not necessarily a bad thing. I have learnt so much from this experience, I will approach so many aspects of my life differently in the future. My health, my relationships, my work and my wellbeing.
Well I have a follow up with my surgeon today to speak about my 8 month scan results so I will update you all once I have that.
My apologies for clogging up people’s dash with my insane can’t sleep ramblings but sometimes you just need to get it all out
Oh what I would do if it weren’t for my lovely tumblr family
I love u all xx
At this point there is pretty much nothing I wouldn’t do for a full nights sleep with no bone pain or hot flushes
So the link to my portrait has finally been done, please check it out if you can. Any donations would be appreciated as if I raise $1,000 I get to keep the glass portrait after the exhibition but I’m really just sharing it to get some awareness for sarcoma and some of the great Western Australia charities that are out there!
Let me know what you think of my story & pic as I would love any feedback from my lovely online family xxx
It’s 3am here in Australia….
I was asleep but Allan’s snoring woke me up. So what else does one do but jump on tumblr and now I’m wide awake!! Smart move Louise
It’s Mother’s Day in Australia today, I know lots of people say its a Hallmark holiday but I think after how amazing my mum has been since I got sick (aka dropping her life in Sydney and relocating to Perth till I’m better) she deserves a little recognition!! So I got her a big bouquet of flowers and my sister and I have planned a girls day with the 3 of us, getting hair & nails done, a nice dinner then going to see the Russian ballet (not till September) so I did a homemade fancy formal invite to the night - I really hope she likes it! I seriously have the most amazing mumma and she deserves to be spoilt!
I had so much fun last night! Thankfully it was a night game so everyone had beanies on coz it was so cold, so I didn’t stand out. It felt so nice to blend in with our team supporters and to scream and chant at the game. To not have people stare at me. Plus had the best dinner with 2 of our friends before hand, 2 jugs of cocktails between me and my friend leesa! I forgot how good tequila is
Getting my chemo blood test tomorrow, hopefully they just test my cells not my blood alcohol level hehe
Out for Mexican with friends then off to the footy (Australian Football to all my American followers) had yummo cocktails with dinner. Everyone else had tequila shots but I didn’t think it was a good idea for me. Best part was that they forgot to add our main meals to our bill so all we paid for was starters and drinks! We pretty much ran out after paying before they realized! Had such a great day/night - so nice to go out and forget about being sick
Our team lost unfortunately but was still a great game. They could have won it but just ran out of energy in the last quarter : (
Wake up in the night having a hot flush, kick all the blankets off
In 2 minutes when hot flush passes cuddle back down under blanket between husband & dogs because its 10 degrees and you are now sweaty & cold
Sleep for an hour and then repeat
What colour to do my hair when it comes back?!
I loooooved having red hair but its so much maintenance - for some reason my hair doesn’t like to hold red very much. I did like being blonde too!
Check out my hair! I know most people look at me and think I’m still bald which I guess I am. But literally 4 weeks ago I had no eyebrows or eyelashes of which I now have both (eyelashes are very short still but that’s not the point!) and my hair is really starting to grow. You can see my hairline now whereas before I was just shiny lol
On the subject, my usual Bed Head shampoo/conditioner I use is for coloured hair, so I went to the shop to get a different one and the girl there was so helpful. She did no staring or double take at my coming into a hairdressers as a baldie. I explained that my hair is growing back and did she think I should switch to a different shampoo. I also said I wanted to stick to the Bed Head brand coz it smells so yummo
So she picked out the one best for me and also suggested once my hair is coming in more to get this hair treatment that encourages the hair follicles to grow better. But not in a pushy sales way in a helpful way
I am thinking of emailing the store to compliment her - having salespeople look me in the eyes these days earns super brownie points with me!
Note: this photo was taken yesterday when I felt good, not today when I was crawling around in my onesie lol