Just an update and a thank-you Fabulous Rockstars ❤🤘🏼
Thank you for the Love
Taking money when you're not a taker, boy is it hard. I've had terminal cancer for 3 years and 5 months, over this period of time I've been told I'm dying more times than people ask Sofia Vergara to repeat what she just said, soooo when people have suggested fundraisers or money-raising efforts for me, I've always said thanks, but no thanks.
As you all know a few weeks ago I was once again admitted to palliative care in hospital and deals were made for me to get out of hospital for a few days to visit the coast with my family from o/s. After a few days my body started to regain some strength, I was able to digest food (well sort of), take a crap.....can I get a woot woot? Other normal human body behaviour started to improve, so I was allowed to return home after the coast trip, rather than to palliative care in hospital and thankfully since that last palliative visit, I have not had to return to the ward. At that stage I was unable to even stand in the shower unassisted, I would walk up the stairs and my legs would collapse from under me at the top. I would lose power of my legs just taking one step out the back door, falling down became the norm, I was choking on my own vomit through the night, I still regurgitate, I couldn't pee, once again I was catheterised, I could barely eat or even stand the sight or smell of food, I lost a heap of weight, I still can't lie flat in bed, I have to sit up to sleep, I couldn't reach to wipe my own ass, I had an incision made in my stomach in which a tube is inserted, any tumour fluid or ascites which builds up in the abdomen is then drained via the hole, (I read that people with tumour ascites usually have 1 week to a month to live, hence the reasons my medical team were a bit quiet on it, who wants to tell a patient that type of news) hopefully alleviating the pressure, reducing nerve pain and some of the bloating.
My Mum, God love her, she just doesn't have the upper body strength to assist me up the stairs or manoeuvre me in the shower or bath, not that the bath thing matters, as I can't have my stomach drain immersed in bodies of water. I'm also looking at a stair lift, as my dad has bad arthritis and even though he loooooves helping me up the stairs, there comes a point where you have to be honest with yourself that your body and strength don't always stand the test of time and you need to accept help, just as I have had to accept you wonderful giving Rockstars.
Things looking so bleak I had to start to reconsider my death situation again. You see originally I had decided to just die in palliative care in hospital as I was still in my previously unhealthy relationship and it took that decision out of my hands, now that I'm single my true desire to die at home with my family can be achieved without fear or judgement. The only problem being, when it gets to that time I would need a nurse here 24 hours and as you can imagine, that's definitely not what you'd call cheap. Whilst in hospital it was discussed and suggested with palliative care that we should perhaps obtain the services of a stay at home nurse, especially to help Mum and Dad with their at home care. The poor bastards could enter married at first sight, that's how little they see each other now.
I wanted to do this update/blog as I want 100% transparency, people hear "Stay at home nurse" and they automatically think of the patient......'shit, things must be going down hill now, especially if she's talking at home nursing', but nurses aren't just for us, yes when discussing the hiring of a nurse a few weeks ago it was mostly for overnight stays as I choke at least 3 or 4 times a night, my vomit goes into my lungs and if I'm not woken I'll die, my Mum and Dad have actually been sleeping with me every night since hospital admission, yep a 35-year-old woman and her parents in their early 50's sharing a bed......not even slightly weird. The nurse is also there to ease the pressure of the carers, maybe give the carer a chance to get out for a haircut or a manicure, maybe have a bath or hell maybe read a magazine from front to back.
Doctors and nurses are now cautiously saying that my situation is better than it was, meaning that I don't look like death warmed up anymore, but my disease is still everywhere and growing, that hasn't changed. The thing is my body seems to just keep fighting back, you start counting me out, my body becomes determined to prove you wrong and it's done it again, so even though I am currently suffering from the worst aspiration pneumonia I've ever had, seriously my lungs are burning, all my stats say different, if your oxygen levels are good, your lungs don't sound as wheezy etc. etc. you're defying odds and doing well again.....but I can certainly say with all confidence, that my body, although on the improve, is in its worst place, weakness wise, that it's ever been, but My pall team don't feel today that I need a nurse 24 hours, like I did 2 weeks ago, but that's not to say I won't need one in 3 days time for 24 hours, this disease is just so unpredictable. I am still trying to obtain a nurse for nights and a few days, the hardest part is finding the same nurse, when you're in my position consistency is really important, you don't want to have to go through your 6000 meds and allergies and back story and blah blah blah, every god damn nurse visit, and thats what happens. The nurses can then administer my injections, IV's, change my wound dressings, drain my stomach and most importantly stay overnight to wake me and nebulise me when I'm choking, meaning Mum and/or Dad can get more than an hours consecutive sleep.
I want to say thank you to each and every one of you that has taken the time to donate your hard earnt money to go to a total stranger. I understand I have been very MIA of late, but my sickness is just consuming my thoughts at the moment and although I think of you all numerous times a day, I just don't have the energy to read and reply.
I write my story for "you", not for "me" to gain money or for financial gain, I write it so that you have someone you can relate to and finally hear the reality that is cancer, not the cotton candy version. To those of you who have written messages of support that compare to no other and those that donate $5 and apologise, stop right now, your words are enough and the fact that a single unemployed mother is willing to give me the last of her very minimal pension, well that just blows my cancer filled vagina and it hasn't had a good blow in a VEEEEERY long time. Those amazing people who have donated what some people would earn in a months wage, some that I don't know, they just read my blog or others that I went to school with and we'd just say hi in the corridor or a few of the guys I went to school with who've donated that were lets just say the "opposite" of friendly to me at school and now they're writing beautiful messages of support, giving both emotionally and financially, it seems the people you would never expect or even think would donate or send messages of love and admiration are the ones who are reaching out......Mum and Dad say it's because they loved me, you know the old boys pull the girl's hair story. Either way, you've given me the ability to purchase some much-needed assistance and aids, we will not have to cringe at the thought of opening bills for electricity that runs 24 hours a day because of my hot flushes or pharmacy bills that arrive EVERY DAY, because not everything is covered by PBS, you have no idea how much this money will help, it will go to so much more than you could ever imagine. Cancer is a bloody expensive disease, especially if you keep punching it in the balls and defying the odds.
Thank-you, Thank-you, Thank-you!
Margaret Hurd, thank-you for ignoring my thanks but no thanks to your offer to start the Go Fund me, Mum, thanks for managing messages and comments, I just don't have the energy at the moment to read and respond like I did a month ago, but each and every one of your comments still touch my heart and my Mum or Dad read them for me, just as I've dictated this, Mum just Luuurves writing about my vagina.
I may not have my health, I may not have my looks and I may not have that quick wit that I used to pride myself on, but I do have you, each and every one of you Fabulous Rockstars, now I'd say that's a pretty decent swap, well actually I'd still prefer a cure for cancer, but for now you guys will have to do! Stay Fabulous Rockstars ❤🤘🏼
An extra thank-you to @ren aidonopoulos for the amazing scrap book from our trip to Melbourne, you are a truly special woman and Fabulous Rockstar, of course Constance Hall thank-you for your beautiful words, you are a gorgeous friend that I love to the moon and back Hayley Walker Art thanks for donating proceeds from your amazing artworks. I love all of you amazing Rockstars, those that give, those that can't and everyone in between, you are all special people in my ❤
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.