This will probably be the most honest blog I've written to date, in fact it may be the most honest I've been with myself.
It's 1.20am and as I lie here with liver pain and regurgitating my dinner from this evening, I'm scared, I'm really scared. I can feel a tumour in the centre of my upper abdomen, the one I felt when it first returned, after radiation I have no other option and even if I do let's be honest, I've tried the best of the best, immunotherapies, chemotherapies and kinase inhibitors, it probably won't work, I'm not being a defeatist and I can hear my friends out there saying , come on Lisa, this isn't you, where's that positive Lisa?The one whose beat it every time they told her she wouldn't, well I'm still here, I've always had these doubts and I've still managed to get through, I just haven't always told you when I feel this way.
I think as the person with cancer we often spend more of our energy protecting our loved ones from the reality that is cancer, we worry more about what you're worrying about than ourselves, well I do anyway. I've often said I'm glad it was me and not one of my family members or loved ones and that's not being a martyr, I just don't think I could deal with it, I don't think I could watch them go through the pain and sickness that I have and not be able to make it better, feeling helpless doesn't look good on me.
As I joke about sunbathing and saying things like, "well I've already got terminal cancer, I may as well die with a tan", the truth is I'm shitting myself, I'm not saying I'm scared all the time, most of the time I'm not scared, but there are moments like these, when I'm awake at what? 2am, when the house is silent and i'm alone with my thoughts and I've had 2 shots of pain medication since starting this blog, because my liver is aching from tumours pressing on it, it's these times that I could just burst into tears.
I have so many fears when it comes to dying, but my biggest would be "FOMO", fear of missing out, when I die I'm not going to be there anymore, I'm not going to be there to answer Rebecca's call when she wants to bitch about her long day at work, I'm probably not going to be there when Ava starts primary school or be there to explain why that boy on the bus keeps pulling her hair, will I be around for the next series of House of Cards? (yes I'm being serious), will I be around for my friend Kieran's daughters 18th?, will I still be around when my friend Sharon's house is built? Will this be my last Christmas or birthday and the list goes on.
The thought of not being around scares the shit out of me and yes I want my family to be one of those families that sets a place at the dinner table for me on special occasions, I want Theresa Caputo to rock up to my parents door and communicate with me from the other side, better still I want to be a ghost/spirit, for family members future reference I will not appear to you in the bathroom/toilet, I will not appear in the bedroom, my choice of location will be a main living area and if it is possible, I will knock 3 times before I appear, so you're not scared. I've discussed this with my brother and he has flat out refused a visit from me from the other side, so for you Steven, I will just observe not communicate and I will do that from any room in your house, I'm not even going to afford you the same privacy as those who want to see me, so if this bothers you, perhaps you may want to change your mind about seeing me when I visit from heaven (yeah that's right, I'm pretty certain I'll get in).
My biggest fear of them all, is my parents, you know how there's always one of the kids, the unspoken understanding that you will be the one who looks after your parents when they get old, well I believe that was me and to be quite honest the thought of not being around to be their carer scares me, as much as I love my brother, will he be able to look after them the way I could? I'm sure he'll be totally fine, but it's just not the way it was meant to be.
Another stupid thought is, will many people turn up to my funeral? I know, I know, I know, I've actually now realised that it doesn't really matter, I mean I'm not going to be there, unless something very wrong happens, but it still sneaks into my head sometimes, then there's the logistics of it, NSW or QLD, I know I want to use my priest from the Central Coast, but as for where to have the funeral I still can't decide, what colour coffin? One thing for certain is I'm going to make sure the lining of my coffin/casket (yes there is a difference) is not velvet, I can't stand the feeling of it and dead or not I don't want it near me, flowers, NO LILIES,the slightest whiff and my nose is running faster than Usain Bolt, once again I know I'm dead and allergies don't matter anymore, but I don't care. White and green chrysanthemum's are great, they're beautiful and they don't smell, who does the eulogy? What songs?Bury or cremate? I originally wanted to be buried, but that opens a whole other can of worms, where to be buried etc? So for me the easiest option is to cremate, that way I don't need to decide where to be buried and my ashes can be separated and given to different loved ones and I've already spoken with my priest about whether separating ashes could cause issues with my soul and going to heaven, he advised that your body is just a shell, a vessel, once you die your spirit goes to heaven and any physical remains mean nothing, so it's totally acceptable to cremate and separate (you see that, I'm sad and I'm still able to rhyme 😉)
I haven't felt like this since first finding out it was back, I look at old ladies and think, you don't know how lucky you are and especially when you hear them telling the cashier about their new hearing aid not working properly and how life is so hard, I get it your joints ache, you can't see or hear properly anymore etc. but you're here to tell the story and that's what matters.
I go to bed every night and repeat the same prayer, I ask God to spare me, I beg him/her for a miracle and a cure and every morning that I wake up I thank him/her for sparing me again and then I get up and that good old grim reaper is still looking over my shoulder, I like to think he and I have become mates and maybe that's why he's given me more time?
You never know what tomorrow may hold, last Friday I was dying, this Friday I was painting dragons with my niece, life really can change in the blink of an eye. So when you wake up tomorrow embrace the new day, hug and kiss your loved ones or ring them if you can't see them, go to work and bitch and moan that the day will never end, but when it does, take a look at the sun going down and feel some appreciation, because no matter what the sun will still rise and the sun will still set tomorrow and all those crappy annoying things that happen in between are just that, crappy little annoyances, life should be about sunsets not Boxsets, get out there and take in it's beauty, we are blessed every day to breathe in the beauty that is our world.
I've written this blog over a couple of days and as we speak I am sitting with the sun shining and it's a balmy 27 degrees Celsius in Autumn and while most people are out having a lovely Sunday drive with their loved ones or significant other, appreciating the day for what it is, I am appreciating it not because it's Autumn and it feels like Summer, it's because I'm sitting here typing, alive and able to do so, because last night I went to bed scared that I may not wake up.
We've been dealing with the C word for 4 years now and for 2 1/2 of those 4 years I have been terminal, so as you can imagine hospitals have become a regular fixture in my life, so much so that when I'm not at home my niece Ava says "Lisa's at the doctors/hospital make her belly better", even when I'm on holiday or out with girlfriends she just presumes if I'm not at home, I'm somewhere getting treatment for my sore belly.
Nobody enjoys going to hospital, it's a cold, sterile place for sick infectious people. I've been in the emergency department more this last few years than I've been in a supermarket.
Luckily for me I rarely have to wait in the waiting room, I usually approach triage (if I'm not taken by ambulance) sometimes I can speak for myself, other times whoever I attend the hospital with will speak to the triage nurse for me as i'm in too much pain to stand or talk, I am then put in a wheelchair and escorted to a bed in the ED.
I have had a few horrible experiences with people in triage who should NOT be in the industry of caring for people. I've had one nurse yell at us for having my brother and his wife waiting in the ED waiting room for me, I mean seriously why would my brother and sister in law want to wait for me? I mean who cares that their sister has terminal cancer and every time she presents to ED there's the risk that this could be the tumour bleed that means she leaves hospital in a hearse, who cares that this could be the time that her blood pressure drops so low that she becomes unconscious and becomes a vegetable, I have no issue that the nurse wanted more seats available for sick people in the emergency department, it's all in the delivery, simply ask them to relocate to the hospital café or just ask them to move so that a potential patient can take the seat, which by the way there were seats available, my brother and his wife would not sit and ignore sick people either, this woman was just rude. I understand that people have stressful days and they can sometimes take it out on others, but this was actually my second interaction with this woman and on both occasions I was made to feel that I was a burden rather than a patient. I have absolutely no desire to be in the ED, I'd rather be at home watching The Real Housewives of Goulburn than be in hospital, I don't turn up to the hospital just for the fun of it, in fact 90% of the time I'm forced by my GP or a loved one to go to hospital, I've been rolling around in excruciating, can't breath, can't talk, can't walk and can't cry it's so painful pain and still rejected my partner's demands to go to hospital. So to have a nurse whose role description actually states that they support recovery by using care plans, carrying out care procedures and assessments, and evaluating and focusing on the needs of the patient rather than the illness or condition, to make a patient feel that they are a nuisance, is just completely opposite to what they are actually meant to be doing.
When you reach a bed in ED you are cannulated (I can no longer be cannulated as all of my veins have collapsed due to the amount of chemo I've had), thankfully I now have a port in my chest and this is where they now put my cannula, a doctor then visits you and assesses your situation and any scans, bloods etc that he/she feels you need are ordered, once all of these have been performed the doctor will then determine whether you require hospital admission.
I will talk about my most recent visit on Friday the 15th of April, I woke up at 7am, it was about 25 degrees celsius and I was freezing, shaking from head to toe, I took my temp and it was only 37.5 degrees celsius, but because I was having rigors (all over body shakes) my dad drove me to the hospital, they admitted me straight away and took my temp, it was 40.9 degrees, very high and my bp was very low, they immediately put me on IV antibiotics and IV fluids, after a few hours the doctor came in and told me they were moving me to a different room, one with a view, but what he was actually doing was taking me to the resuscitation room, because my blood pressure was so low it was considered almost fatal.
The doctor looked at me, Dad was sitting to my left and he simply said "Lisa you are very sick and I'd say it's the most sick you've ever been", I responded by saying that I've been told I wouldn't make it through the night one time, are we talking as bad as that, to which he replied, "you are very sick", that was enough for my Dad, he burst and ran out of the room, I have to admit upon hearing that, I didn't cry, I suppose I just went numb and I just thought no, I don't feel sick enough to be dying, the doctors and nurses were amazing, two of them went out and consoled my dad and luckily a girlfriend of mine came directly to the hospital to help comfort him also.
Let me just say, on the whole, Nurses are amazing, they are not just the backbone of the health system, they are the tibia, the funny bone, the brains, the heart, they are the oxygen that keeps the hospital breathing. Nurses do not get enough credit, they are selfless human beings, who get vomited on, spat at, sworn at, punched and so on, they are the ones who are on the frontline on a Friday night when you and your girlfriends decide it would be fun to do Jaeger bombs, fireball shots, throw in an ecstasy tablet or two and when you are rendered unconscious and choking on your own vomit, they treat you with the same respect they treat the poor 80 year old woman who has come in with a broken hip, because that's what Nurses do, they care for you, no matter your social status, your race, your sex or if you haven't had a shower in a week and your body odour makes Pepé Le Pew smell like Chanel no.5, they still hold your hair while you vomit your spleen up, all because you thought it would be a good laugh to get wasted and all this for nowhere near enough pay!
So back to Friday, I was transferred to ICU at the private hospital and was greeted by, for privacy reasons let's call her Caitlyn, she was obviously a transgender woman, more power to you I say, if you feel you're in the wrong body, I wholly support you getting gender realignment surgery or if it just makes you feel better to grow your hair out and wear makeup, a dress and heels, I say you go girl, as I'm clicking my fingers in the shape of a z in the air.
As soon as I was transferred to the bed, I could tell it was one of those air mattresses that constantly move so that you don't get bed sores, the problem is these mattresses cause me major nerve pain from my tumours and have caused my readmission to hospital before, so I immediately asked "Caitlyn" if she could get a normal mattress ordered? To which she replied loudly and aggressively "that will not be happening tonight, I'll turn the mattress off and the nurse in the morning will sort that out, I've got other things to do that are more important than ordering you a new mattress", I have to admit I cried, it was 9pm, it had been a long scary day, I hadn't eaten or drank and I was vulnerable, my dad was made to stay outside at this point, she then turned the mattress off, it deflated and left what I could only describe as speed humps all over the flat bed and I was expected to sleep on that, when I'm already in pain. So I bit my tongue. She then proceed to give me an ecg, which I had been having all day, she pulled my gown right up exposing my whole body, naked, without any warning and the blinds were open, so I politely asked her to close the blinds, to which she responded don't tell me you're shy, excuse me? Yeah I have no problem having my boobs out for all and sundry to see, so she huffed and puffed and yelled to another Nurse to close the blinds, because she couldn't walk 1 metre to the window, I then accidentally knocked one of the little clips off and she then proceeded to yell at me that she was the nurse, I am the patient and I do not touch anything without her permission, after that my Dad (he had also heard her yell at me about her being the nurse) was allowed in and the first thing he mentioned was the piss poor excuse for a mattress I was sitting on and that was it, she turned around and yelled at him "do you realise this is the 5th time (hhm hhm the second) this has been brought up, it's not happening, just accept it"! I could see the rage in my dad's face, like the old cartoons where their face goes beetroot red and steam shoots from their ears and I just looked at him with those eyes, those pleading eyes, pleeeeease don't say anything, I have to spend 10 more hours with this person alone, so he didn't say anything, he was then overly nice to her in the hope she would become nicer, no that didn't work.
At this point another nurse came in and asked what was wrong with the mattress, to which I replied I can't sleep on them due to tumour pain, so Caitlyn has turned it off, "What?" she replied "but that just deflates it, you can't sleep on that, we'll just get you a new one up". Suck on that Caitlyn, so 10 minutes later a wards person brought the bed up and asked Caitlyn which room it was going to and he would swap the beds over, no, Caitlyn told him to leave it there and she would sort it, so the wards person left it in full view of my room and Caitlyn left that bed in the hall for 40 minutes while she sat at her desk flicking through a who magazine, her way of showing me who's in control. I also was hooked up to a bunch of machines and was not allowed to walk far due to my low blood pressure, because of my pelvic tumours I need to pee a lot, I had to use the commode and when I finished I asked her if she could leave it there, as I go regularly, her response was "no and if you buzz and I'm busy you'll just have to wait and hold until I can get to you", once again another nurse came in and mentioned why don't we just leave the commode in here? (I should also let you know, I never mentioned either the mattress or the commode to the other nurse, they noticed these things themselves) so they left it, I then fell asleep, woke up and it was gone again, what the? My last complaint was that I couldn't get anything from my bags as I couldn't reach them and I asked her to pass me a bag, her response again was to pick up a bunch of papers, show me them and yell "do you see these, this is what I should be doing, I'm not a butler, I'm not here to fetch your bags!", she of course passed me my bag after her dummy spit, upon handover she said to the day nurse I was a micro manager, but a pleasure to look after, hhm hhm excuse me while I clear the bullshit from your throat. Once again this is a one off, the good nurses, way out weigh the bad ones.
I was then transferred to the cancer ward, where I had numerous nurses and they were all fabulous, I spent only 3 days in there as the adrenalin through my IV had increased my blood pressure and the IV antibiotics had started to clear up my pneumonia in my lungs and the septicaemia in my blood, the great thing about being palliative is the doctors and nurses try to get you out of hospital as quickly as possible, as they know how much time you spend in them, of course they only allow you to leave if your back to good health.
I have been admitted to hospital so many times I couldn't tell you the exact number of admissions and although you never want to be there I have to say my overall experience with the numerous hospitals, nurses and doctors have been really good, my advice would be that you are called a patient for that exact reason, you need to be "patient", you are not the only person there being treated, for every one of you, there is someone else that is worse off, give the nurses and doctors a break, they are trying their best. I'm not saying they're all fabulous, obviously you just have to read this blog to see I'm not enamoured by every nurse or doctor that treats me, but you just have to be reasonable, if you feel you're not being appropriately attended to, let them know, they're not mind readers, just speak up.
I only hope for whoever is reading this, you never have to go through what I go through regularly, going to hospital once is not fun, never mind every few weeks.
My parting words would be don't use hospital as a medical centre or a GP, if you have a cold or an ingrown toe nail, go to the doctor, not ED, if you are truly sick, go to the hospital, the Emergency Department is already bursting at the seams, so use your common sense and only present to the ED if you need to.
So for those of you who haven't read my blog or don't know my health history, I was originally diagnosed with a rare cancerous gastric tumour in April 2012 and completed treatment (2 surgeries and doxorubicin and ifosfomide chemotherapy) in November of that year.
Life toddles on, but it's never the same again, I can't speak for others, maybe as time goes on cancer disappears from ones thoughts, I've heard that with each clear scan it becomes easier, but the cancer cloud still manages to hover over your head now and then and rain on your parade, but it doesn't storm on you every day like it does early on after completing treatment.
I don't think a person whose had cancer in their life, really is ever normal again, as I only had 9 months of NED (no evidence of disease), I know that it was still very raw. In fact in December 2012 (less than a month after my final treatment), my brother Steven and his wife Marianne announced their pregnancy, they announced it to me by giving me a t-shirt with Aunty written in diamantés, I did my best to act happy and excited for them, but inside my body was shaking with fear, my eyes were crying invisible torrential tears and I thought I had done really well at hiding my true reaction. I smiled, I cheered and I hugged and congratulated them and went and bought my sister in law some of those pregnancy vitamins the next day to show my support of the impending birth of my first ever niece or nephew, but in reality my first thought was, that's it, I'm going to die, the old one in one out thing, he/she will be my replacement, my cancer is going to come back I'm going to die!
Sadly my brother saw through my over exaggerated reaction and he asked Mum that evening, what was with my lack lustre reaction? Here I was thinking I had put on an Oscar wining performance of the century and he could see right through his charlatan sisters act.
With time, I grew to accept it and grew to love this little person that didn't even exist yet. We found out it was going to be a girl, but they opted not to tell anyone else, I kept asking them to name her Lisa, because that thought of me dying was always in the back of my mind, thankfully it wasn't drilling a hole in my brain anymore, more of a gentle prod every now and then to remind me if cancer comes back you die, you can't be cured.
I also divulged to Steven what my whole reaction was about and he understood, which was good for me and I then dove into organising baby showers, craft for the nursery and so on.
As the story goes, Ava was born (They had also asked me to be Godmother, which I was also weary about, for obvious reasons, but I gleefully accepted and was honoured to be chosen). Ava was born and i'd been in pain in the abdomen leading up to her birth, I gave it a week before I went to the doctor and was told I had a number of metastasised tumours.......ding ding ding ding........."if it comes back, it's incurable", the words that Dr Dalley (my first oncologist) said to me on my first ever consultation.
I went to 4 different oncologists as I wasn't happy with my initial treatment and shopped around, I was told by each of them, bar one, that I would be lucky to make it 3 months and offered numerous scary procedures and chemotherapy's to extend my life by maybe months, not years. I went to Dr Tattersall at RPA, I knew of him from one of my bffs sisters who had recently passed away from recurring ewings sarcoma, he told her straight up there was nothing they could do for her and to basically go home and die, so when I met him and he told me there was hope and the possibility of cure was there, I knew he wouldn't under exaggerate or over exaggerate my chances at a longer survival, I picked him to be my treating oncologist and I know without him and his positivity and treatments I would not still be here 2 1/2 years later. Under Tattersall I was given 3 different chemos, a couple of immunotherapies and a massive debulking surgery that other hospitals and surgeons refused to do and 8 radiation therapies, here I am still holding on by the edge of my fingernails, but I'm here and I partly put that down to Martin Tattersall's positive attitude, which in turn lifted my spirits and made me positive, as prior to that all I could think is I'm dying, I'm not going to be here next Christmas, I'm not going to get to see the next series of homeland, I'm not going to see Ava grow up, I'm never going to get married or have kids and so on.
I'm now at that point where we've really ran out of options, other than radiation and we won't see results of my recent radiation treatment for another 4 weeks, but the funny thing is that because I'm still here and being told I would be lucky to survive 3 months, one night I wasn't meant to make it through the night and other times I've ended up in emergency or ICU being told things aren't looking good, but I'm still here and laying it all out on the table, I sometimes think that people are thinking or saying, "What is going on with her? Wasn't she meant to be dead like years ago, is she really as sick as she says she is? Is she even dying?
These are really my thoughts, I really think people must be confused, I also get worried that they see that I'm complaining about pain or being in a wheelchair from time to time and then they see me at the tennis and think "hang on a minute, she was in hospital 2 days ago and now she's in Melbourne at the tennis, it doesn't make sense?" The fact of the matter is I am in pain 24/7, it's just that sometimes the pain is completely unmanageable and I have to go to hospital or sit in the wheelchair to conserve my energy.
The truth is, day to day I spend most of the day in pain, pretending that I'm not, for other people's sakes, I have weekly palliative nurse and community nurse visits, I take numerous meds morning and night and inject pain relief up to 5 or 6 times a day and visit oncologists offices and get treatments in cold sterile cancer wards (although the staff and nurses in most of these places are warm, caring and inviting). People imagine you start a bucket list and you go over to Disneyland or on safari in Africa, firstly where does this money come from for these once in a lifetime holidays? You get to meet Beyoncé backstage at her concert or fly over to New York and spend Christmas there or skydive.
The reality is, if you have terminal cancer, you can't get insurance, so going overseas is an expensive exercise, if you get ill over there, it's at your own expense, sometimes like myself your oncologist refuses to support you going o/s, for me the risk of bleeding out on the flight or not getting the best treatment available, if I go to some exotic island, it is too risky for my oncologist to support it. So going to NYC at Christmas time is not doable (at this point), I actually had tickets to Vegas booked and front table VIP Britney Spears tickets, but I had to cancel my trip days out because of anal bleeding, ah that old chestnut, anal bleeding. If you have tumours like myself, you can't safely go skydiving or tight rope walking or even bowling! I can't bowl! Seriously I'm not allowed to roll a ball down a lane at pins, because of the weight of the ball! I can't go on the rides at Disneyland even if I were allowed to fly to LA, so the idea of a bucket list is great, it's just not always doable.
People think you get sympathy freebies if you mention the C Word, " did you mention you have terminal cancer so you can get upgraded to a suite at the hotel?" It's not like you're a newly married couple and they upgrade you on your flight or give you the honeymoon suite, it doesn't work like that and if it does I've been missing out on these cancer benefits. People look at me funny when I park in a disability car parking spot, I don't drive often at all, as I actually suffer from micro sleeps sometimes and it's not safe for me to be driving more than 20 minutes at a time. I sometimes use the disability toilet to inject my pain meds, as they're more likely to have a sharps container for my needles, but quite often sharps containers aren't available at all, which is ludicrous. I was in my wheelchair the other day and a woman and her child were standing in the toilet with the door open and my friend and I just looked at them, expecting her and her probably 6 year old school uniformed child to step out of the toilet and let me go in, well no, she stood there looking at me and quickly slammed the green button to close the door automatically, they were in there for 15 minutes, they didn't even hurry and upon exit she simply said she wouldn't take her 6 year old son into the female toilet to do a poo, basically her kid needed the disability toilet for privacy to poo! You've got to be kidding me!!!!!!!
I can't get a job, because let's be honest, if you're applying for a job, they ask you if you have any illnesses that may affect your ability to work, "um does terminal cancer count?", so I don't have a job as a creative outlet or I don't get that feeling of achievement you get from working, I simply fill my days with blogs, doctors appointments, scans, selfies, babysitting my niece, my sister in law informed me the other night that Ava had been saying every night she is about to fall asleep that "when Lisa's belly is better, we'll play on the trampoline together", the fact that my 2 1/2 year old niece tells her family Childcarer that Lisa has a sore belly and is in hospital (even when I'm not), speaks volumes, poor Ava has spent more time in hospitals than in parks.
I will not allow those people (if any) out there that question my legitimacy get to me, I know my illness, I know the seriousness and daily risk that I face, my life is not all tennis games and handbags it's more IV's and nurses and on those occasions that I get to go out and enjoy myself even if I am in my wheelchair, I won't feel guilty for that, I will continue to force myself to go out (because people don't understand that I actually have to make myself go out as I have chronic fatigue from radiation and other treatments) and do things that I enjoy, whilst I am still capable of doing so.
So yes I am still terminal, as we all are really and I intend to still be terminally fabulous for many years to come and my advice to everyone, is live every day like you're dying tomorrow, because it will make you appreciate each day more and maybe make your life count that little bit more.
The Big What If?
What if? It's a question that I've often found myself asking and I try not to, because if you keep looking back, you can't move forward.
Upon my initial diagnosis I was directed by my GP to go to a particular surgeon, so being the obedient patient that I am and the fact that Doctor's are God, I toddled off to the surgeon she suggested. I later discovered that although he is a fantastic surgeon, he specialised in laparoscopic surgery (he also had NO experience with sarcoma resection, which anyone who knows anything about cancer will recommend you use a surgeon who has dealt with your type of cancer before) and is a minimally invasive surgeon. My problem is that with sarcoma, the type of cancer I have it requires aggressive surgery, it requires large "clear" margins (margins are the area of normal tissue surrounding the resected tumour, where "clear" or "cancer free" pathology is found, with sarcoma you really want at least 2cm or an inch of non cancerous tissue margins), this is trying to ensure no cancerous cells are left behind, so basically the more tissue you remove the higher the chance you're not leaving any of those pesky little bastards behind to grow, make love and multiply.
My surgeon suggested I had a GIST, a gastrointestinal stromal tumour (this is a "good" one to get, as it's a sarcoma the medical field know about and it also has a treatment drug called Imatinib in tablet form, a tyrosine-kinase inhibitor, which is good to take after having your tumour removed as it blocks the enzyme that allows cancer to grow, an added security blanket to help prevent the cancer from returning), which is a type of sarcoma, so any surgeon who has performed a sarcoma tumour (mine was 17cm by 11cm and 1kg in weight, attached to my stomach) removal should know that you need to take more out than less, be aggressive, remove more or all of the stomach, just take that asshole out and make sure you take it's little cancerous mates with it.
After waiting for 3 months for my pathology results, yes I had to wait for 3 whole months with my thoughts eating away at me. That 3 months was a daze, I basically walked around with this cancerous question mark hanging over my head every day, my oncologist had suggested after the tumour was removed that it may in fact not be a GIST, so I was also thinking what type of cancer will it be? They sent my tumour to the Mayo Clinic in the USA and they have a huge pathology database and they still couldn't find a cancer with my pathology.
Eventually I got results and they were basically inconclusive, I still remember that exact moment, I was sitting in a car park in the passenger seat, I saw the private number calling on my mobile and it was my surgeon on the other end. I could tell he was nervous, he proceeded to tell me it was malignant cancer and it was a nasty one, I just remember this huge lump forming in my throat and a feeling like the carpark was caving in below me, the first thing I asked was "am I going to die?" and he replied "I don't know", I DON'T KNOW, are you f*****g kidding me? We're in a day and age where we can pinpoint your location via satellite on an iPhone and you can't tell me if I'm going to live or die, what is this bullshit? I thought they'd already found a cure for cancer, hadn't they? Isn't Chemo a cure? I'm certain I saw something on TV the other day about mice and tumours and cancer, didn't I? For those of you that didn't know Chemo doesn't always cure cancer, some cancers are very Chemo reactive, others not so much, the only "cure" for my type of cancer is complete removal of the tumour with large clear margins and the chemo after surgery is really just to mop up any cells left behind, I think it increased my chances of survival by something like 7% or something as stupid as that, so it went from a 50% chance of cure to a 57% chance of cure if I proceeded with chemotherapy.
Pathologists determined my cancer had a familiar appearance to sarcoma, so they decided to call it an undifferentiated gastric sarcoma, sarcoma accounts for less than 1% of cancers diagnosed each year, so it's rare already, so mine is incredibly rare, in fact one of a kind, unique, just like me.
The surgeon then directed me to an oncologist at the same hospital and once again I followed his advice blindly and used the oncologist he recommended, I didn't question anything, I just did what I was told. Upon completion of chemotherapy, my oncologist recommended further surgery, they call this a "whoops" surgery, as he said I didn't have "clear" margins after my initial surgery (this was the first I heard of this, I was told I had "clear" cancer free margins) and once again I returned to the first surgeon and had more of my stomach removed and this time, the pathology came back as cancer free.
So my reason for this blog is to help educate you on what you should do when you first find out you have cancer.
If you are told what type of cancer you have (biopsy results, blood tests etc.), investigate different specialists who specialise in that particular cancer, when my cancer came back I actually visited 3 different oncologists and a couple of surgeons. When you meet with them question, question, question!!!!! First ask if you can record the conversation, when your speaking with the oncologist, you are already in a daze, so your most likely not going to be listening properly, they will use big words and words that you've never heard before, so recording the conversations allows you to sit back and review it and absorb it. Take a list of questions into the consultation with you, because when you get in there you will forget most of them, your emotions are on high, you're still in shock, so it's great to have them written down and tick them off as you go.
What type of questions should you ask? What kind of cancer do I have? Do you specialise in my type of cancer? Can I be cured? What stage is it? Is it localised or has it spread? Is it a common cancer? What treatments if any do I need to have? Will the treatments improve my chance of survival? Are there different treatment options and if so what are the pros and cons of each? Where will I have treatment? What are the side effects of treatment? How long will I require treatment? Are there any clinical trials and if so would it be worth it for you to try one? Are there any things you recommend getting done before treatment, like freezing of eggs or there is apparently a needle that you can have that helps prevent menopause (this is something I wasn't made aware of) for women during Chemo? Are there long term side effects? Are there any costs involved? Do you have any literature or statistics about my cancer? Is there someone I can talk to such as a counsellor or even a person who has previously had this treatment or cancer? What is the best case scenario and what is the worst case scenario? These are just a few questions that you should ask of potential oncologists, these questions can also be asked if you need to speak with a radiation oncologist. As I said, recording the session is very beneficial and most importantly DO NOT feel railroaded into choosing a particular oncologist, just because your doctor likes them, doesn't mean they're the best fit for you, remember you're going to be having a very personal relationship with this person, so apart from the fact that you want them to know what they're doing, you want to feel comfortable talking to each other, you should be able to tell your oncologist ANYTHING! This is not like buying a dress, you can't return bad or incorrect treatment, this is your life and this person literally holds it in their hands, so it's imperative that you feel safe and comfortable with them. I cannot stress enough it's not like choosing a hairdresser, although I know on the scale of importance a good hairdresser rates very highly, as too does a good eyebrow waxer, but unlike hair, your survival will not grow back, you need to make sure you come ready to fight and in order to do this you have to have a fantastic support team, a medical entourage if you will.
Information is also one of the best weapons you can take into your pending cancer fight, so ask for up to date information from the cancer council, from your oncologist, from your cancer centre, Google "safely or sensibly", some people like to know nothing, they just leave it all in the specialists hands, that approach doesn't work for me, I need to know all there is to know, but at the end of the day whether you want to know or not, it's your decision, we all handle things differently, don't let anybody tell you how you should handle this, this is your story, tell it the way you want.
Depending on your cancer you may also require a surgeon and as I mentioned earlier, it is hugely important that you ask the right questions,to get the best surgeon for your case, you have to remember that although many cancers have the same or similar pathology, every case is still individual and you want your surgeon to treat you as that, an individual. Most of the questions above can be applied to surgery, but you need to ask things like, Do you specialise in this type of cancer surgery? How many of these surgeries have you performed successfully and otherwise? Have you seen my specific type of cancer and positioning before? What type of surgery will you be performing? How long will you be in surgery? What are the risks of the surgery? Will there be any long term effects after surgery, such as will you need a colostomy bag, will you lose a limb, will you lose an organ? Do you have to have surgery? Will you be performing the surgery (quite often people visit a surgeon and then when they're operated on, it is one of the registrars that actually performs the surgery, so if you want them to specifically do it, then make sure you confirm that they're performing it) and if not you who would be? What effects should I expect after surgery? How long will I be in hospital? How long will my recovery take?
I don't want for you to be in the position I was in, where I just rushed into everything and didn't investigate anything. Doctors will tell you NOT to google, I agree that you can be misled by Google, but it can also be an effective tool in your cancer treatment. You can google specialists, surgeons, trials, cancer descriptions and much more, but be aware, you google cancer, you're going to get some hairy results, so be open to that, if you're not prepared to see things you don't want to see DON'T DO IT!!!!!
This is your body, more than that, this is your LIFE, cancer is not a game, I know when you're first diagnosed everything feels urgent and sometimes it is, my cancer needed to be treated ASAP, but I still could have looked into different specialists and treatment options. Give yourself a couple of days to let it start to sink in and look into different specialists and treatment centres, maybe speak to someone you know who's had cancer and get their advice, look at chatrooms in relation to your cancer, Cancer Council Australia is a great place to start, they have so much advice and they also have a find a specialist section http://www.cancer.org.au/about-cancer/find-a-specialist.html.
"You have cancer", are three of the scariest words you could ever hear, so allow yourself to freak out, allow yourself to scream, cry and hate the world, but then you need to put your big girl/boy pants on and face this beast head on, get the best team members you can get, to win the most important game of your life, you have to feel confident that the people in your team are the best for you and they all have one end game and that is your survival, don't end up like me asking "What if?".
I had to enter a calendar entry for a chest cat scan for tomorrow morning and I noticed a previous entry in my calendar on the 6th of April, 2012, it was the date I was initially told I had a massive tumour on my stomach.
That was my first foray into hearing the "C Word" in "my" world and the reminder came up at the perfect time, as I was thinking what in the hell am I going to blog about next? Then the calendar heaven gates opened and gave me my "cancerversary" as I like to call it.
So this blog is about "living" while you're "dying", yes I know and I've heard it all before, "We're all dying, I could walk off the gutter tomorrow and be hit by a bus". Um Sorry? When was the last time you put on the news and saw that someone was hit by a bus? (I apologise in advance to anyone who reads this who has been affected by an off the gutter bus to person altercation). Maybe I'm just more sensitive to it because of my situation, but I can only speak for myself and my truth is, that prior to cancer and a terminal cancer diagnosis, I was always saying or thinking, "that's ok I can do it tomorrow or we can go on that once in a lifetime holiday next year or I can see my best friend at Christmas which is 4 months away", I was always putting things off, because we don't think about our mortality on a daily basis, unless of course you are told that you have a disease, sickness or some sort of health problem that is going to drastically cut your life short, if you don't know if you'll be here next week, next month or next year, you start to think differently about living. I like to say it's like having the grim reaper constantly peering over your shoulder.
Some people hear the word "terminal" and immediately start dying, they give up, what's the point? True to the oncologist's prognosis, they won't make it 3 months, now I'm not saying if they had tried chemo or started chanting to Buddha or started thinking positive affirmations or meditating that they would have lasted 6 months, I am obviously no higher power, so I don't hold the key to what makes one person with the same cancer and prognosis live 2 months and the other lives another 9 years after a terminal prognosis, I have no idea, nobody does, it is an individual thing. This is why when I'm faced with a person in the oncology waiting room who has recently received a terminal prognosis, I always say, don't listen to the doctor, they don't know, they're just giving you answers based on statistics, not on your determination to fight, I'm also not saying that just because you say "I'm going to beat these odds, I'm going to prove this bastard cancer wrong" and you wake up every morning positive about your outcome that you will extend your time on earth or dare I say achieve every terminal cancers patient dream of the elusive miracle cure. Again I can only go on what I think has helped 'me' and positivity, hope and prayer (mixed with a few toxic potions and radiation now and then), have greatly helped me mentally and in turn I believe it can only be a good thing for your health.
STRESS⚡️🌩💥⛈🌪!!!!!! I truly believe stress plays a huuuuuge part in EVERY persons health, not just a terminally ill persons life. For a terminal person stress management is imperative, you have to get on top of it, you have to face your prognosis head on, not put your head in the sand, you have to let it scare you before you can then find coping mechanisms to deal with it and hopefully then in turn accept it and learn to "live" with it, rather than "die prematurely" from it.
Some people find counselling hugely beneficial, I didn't, I've been to a few counsellors over the years and felt like I could help myself more than they could help me, now that's not to say it won't work for you, so I always suggest trying it first, even try a few different counsellors and you may find one that works for you, which is great. I only yesterday started to speak with a Chaplain that my community nurse recommended and for the first time in a "session" I got it, she was great and I plan on seeing her again, it's just an added bonus that she actually comes to your house, so you don't even need to apply concealer, another tip that you think would be universally known, but people still do it, DON'T WEAR MASCARA to your counselling session!
If there are people or situations in your life that cause you anxiety on top of your already stressful situation, you need to address it, maybe let your friend know that her constantly crying and mourning you before your dead, doesn't help your stress levels and so on, the stresses that existed before your prognosis also don't just disappear, your credit card debt, your unhealthy relationship, your argument with your mum about where you're spending Christmas, don't just disappear into thin air, you still have to deal with the same everyday stresses as everybody else. So I definitely advise addressing these issues before they make you more sick.
Another important aspect of a terminal diagnosis is getting your "Affairs in order", it's something no-one really ever wants to do, who wants to organise their own funeral? It is what it is and if you don't want to leave that extra added stress on your loved ones, I really recommend doing it or at least defining your wishes clearly in that will and testament you also have to do, yeah again, I know you don't want to and it feels a bit like you're giving in, but honestly it's not, it's being organised, it's actually recommended that once you get married or have children or buy a house that you should at that point organise a will, so if you haven't already, get on it! When organising your will you can also organise your executor (the person who looks after the persons wishes once they die) and your power of attorney (this person can manage your affairs and financial affairs while you are alive), these are both legally binding documents, so again they remove the stress from your loved ones as decisions have already been made. Another thing a terminal patient should organise for both themselves and their carers or family is an "Advance Healthcare Directive", it's basically a living will that stipulates what should happen to you health wise (like should you be resuscitated or ventilated) if you can no longer communicate your choice or if you're no longer able to make decisions for yourself, it's a great thing to have signed copies that are authenticated by a jp for your GP, one for your carer or power of attorney, one for when and if an ambulance comes to your house and a few extras that you can hand out at the hospital if need be.
People often say they admire me or I inspire them to live differently and that's great, it's nice to know that some good can come from such an absolutely shitty situation, they often say "I don't know how you do it? How do you still find the good in life, how are you still able to smile and laugh? My response is simply "you don't know what you're made of, until your faced with it", if you had asked me prior to prognosis, how I felt I would handle hearing that I'm dying much sooner than I should be, I would have said that I would probably crawl into a ball and die, but I haven't, instead I have stood tall (yeah yeah I know ironic considering I'm 4ft 11 1/2 inches - don't forget the 1/2 inch!), I've faced my fears head on, I've made some changes to my life, one of the best things I ever did was relocating up north to be close to my family, they play such a huge part in your life and they want to be able to support you through this, I've surprised myself at how I've dealt with it. I say yes to lunch with that long lost friend now, instead of saying we'll catch up next time, I buy tickets to shows that aren't on for 3 months now and don't give it a second thought, I'm either here for it or I'm not.
One thing I want to make clear before I sign off, is that I'm not always stoic, I'm not always this strong positive person. I have my moments, those moments where a treatment has not worked and your left with damaged lungs from it and that's all you have to show for it, that and a depleted bank account from the thousands of dollars
It cost to pay for the inactive treatment. In those moments I do cry (usually lasting minutes) and I do say I'm scared, when you're first given the prognosis you may look at people with jealousy, Why is that woman a healthy mum? Why is that old lady 85 and never been in hospital? Why me? Why have I been burdened with this? You often think about things in timelines, like I'm not going to be here next Christmas, could this be the last time I see my Aunty? I'm not going to be here to see my niece start school, these thoughts for myself have dwindled over the years, I don't think about them every day like I did initially, now they're just random thoughts, which is good, it means I'm living not prematurely dying.
Friendships forge survival, my friends perspective........
Friend: a person with whom one has a bond of mutual affection, typically one exclusive of sexual or family relations.
Friendship: the emotions or conduct of friends; the state of being friends.
Friends play a huge role in any persons life, but they especially do in women's lives, they are our confidant's, our sounding boards almost like our priests that you can swear at, if you will. Friends provide us with the type of love and support that a family member or even a partner can't and a lot of that I feel has to do with honesty and that honesty doesn't always come without judgement, in fact much of the time a friendship holds a lot of judgement, well my friendships do anyway. I would prefer my friend tells me that I'm being an idiot or that I do look fat in that dress, I want my friend to trust in our relationship enough that she/he feels safe and confident enough to say whatever they want without me "unfriending" them, so to speak.
I'm not saying that there haven't been times where a friend has said or done something that has upset or even angered me and we've had a disagreement or even an argument resulting in a premature hang up tone and vice versa. Of course we've had our spats, that's healthy in any relationship, if you haven't had some sort of disagreement in a long term relationship, I suggest you haven't always been completely honest with your friend about your feelings and for me life is too short to bullshit to someone just to make them feel better, in saying that, the odd occasion where you've told me that blinder of a pimple that's been guiding flight VA815 in to Brisbane airport for the last couple of nights isn't that noticeable, is acceptable friendship fudging, it's a delicate dance this friendship business.
I would say most people say they choose their friends because of who "they" are and they select them because they have common interests to themselves, you both do yoga, talking to each other is easy, maybe you both like to down a bottle of wine each every night, whatever that commonality may be, that is why you're friends, whilst I believe this to be true and a large factor in friendships would be compatibility, I actually believe that we remain friends with people for extended periods, because of the way they support who "we" are, I believe we remain friends because they love "us" for our warts and all. How a friend supports "us", I believe plays a huge part in the longevity of a friendship, not the little things like a joint love of boxsets and Botox. It's because that friendship makes us feel good about ourselves.
Humans go throughout life unconsciously wanting to be accepted, wanting to be loved and recognised and if you find a person who makes you feel important and builds your self esteem, then of course you want that person around you, it makes you feel like a better person, a "worthy" human being.
I went through a long period, due to personal reasons that I didn't communicate with my friends as often as I should and because of that I lost many, but there were the ones who stuck (when I certainly wouldn't have) and for that I am grateful and they are still the ones who stick by me through thick and thin, they've been with me through break-ups, work problems, Cancer, chemo, treatments, weight gain/weight loss, even when I wasn't as active a friend as I should be, they persisted and now that I've realised how important friendships are and even though I live in a whole different state to them, we see each other more often now than we did when I lived around the corner from them.
I have a handful of friends and each of them are from completely different backgrounds and have completely different personalities, but the funny thing is, on the very odd occasions that we've all gotten together, we all meld, which I think is amazing, they all have one thing in common and that is me and their genuine love for me, which I say makes me a pretty lucky person.
So what's this blog about? I asked a small handful of my "best" friends to answer the question "How did you feel, when you found out I was terminal, how do you cope and has it affected our relationship?".
So here are some of their responses, in their words, unedited
When I first heard Lisa had cancer, it didn't feel as though I heard or 'processed' it, I more felt it. Like you feel a punch in the sternum. It feels more like an ache now. The surprise from the punch is gone, but it feels the same.
I feel the same way about Lisa now as I did prior to diagnosis for the most part, I don't think Lisa would want it any other way. I think one of the things we both enjoy about our friendship is the unfiltered honesty.
I think the only differences are that I find myself in awe of her strength of character and attitude towards this fight. Lisa has remarkable spirit & maintains a filthy sense of humor. Her ability to keep positive in the face of Cancer has made me look at my trials from a different perspective. I'm very thankful for that.
A terminal diagnosis is obviously devastating and I deal with it by doing what I think is my 'job', to just keep being the same friend, it is not about me & how I feel. Lisa has enough on her plate without worrying about how I am dealing with what is her own, very personal position. You can't just take the good stuff, and there is so much of that with Lisa... I'm trying to balance being positive and also allowing Lisa to speak openly to me about how she is feeling when she is struggling with treatment, scared or overwhelmed. It's a privilege to be a confidant. Of course I think its a shit hand & incredibly unfair. I get angry about it and also find myself devestated when I hear a treatment hasn't been effective or tumors have grown ... I try not to dwell on the diagnosis when I think about Lisa though, it does not define who she is to me.
We all have that one friend you share your everything with…… that one friend who is the missing piece to your puzzle.
So what would happen if you lost them… If they were no longer at the other end of the phone like you were used to. This is the questions that plays through my mind day in and day out…
That moment Lisa rang to deliver me the news that her cancer was back was like being thrown under a bus. Seriously give a girl a break… this can’t be happening. Instantly my reaction was “let’s just fix it”, but the reality is it’s not just a broken heart, a wrongly purchased dress or the realisation either one of us had gained a kilo. It was Cancer… We can’t fix this!!!!
How do you stay brave for someone when you are barely coping with the idea yourself? Sometimes I feel like it is Lisa who is holding it together for all of us, which in return keeps us strong. The only thing I could promise was that I would refuse to let cancer define our friendship. We have been friends for close on 20 years and while everything is changing around her, I don’t want our friendship to be one of them. For that reason, I do my best not to talk chemo, tumour size and death, but instead continue to talk, nail polish, fashion, boys, love and all those other things only best friends have the answer to. Don’t get me wrong we also talk fear, anger, funerals and bucket lists, but every moment I can I go back to the normal stuff… I guess for me it’s my way of keeping my best friend my best friend for as long as I can, rather than losing her to cancer before I have to.
Then there is the other side of this…… I refuse to accept that one-day, way before we had planned, I am not going to have my best friend around and to be honest…. The thought scares the shit out of me!!!
Our saying…. “she believed she could…. so she did”!!!! I love her!!! xxx
When you were diagnosed I had no doubt in my mind that you would be cured. A bit of surgery and chemo and you'd be all good. Selfishly I didn't think that someone else I loved could possibly die from this asshole of a disease, when so many people fight it and survive. I can't remember my reaction when you told me it was terminal but I would assume the word "fuck" was involved. I think you shared this news with me a few months after Lyndall died and I definitely didn't have anything positive to say to you and I wish I did. Despite this, I always wanted to be someone you could be honest with about how you were feeling and I hope I have been that.
How do I cope? In all honesty I am not sure I do at times. Many a tear has been shed for you when I am sitting alone at home with time to think. I cope by talking to you and having a laugh. I cope by talking to Mum and having a cry. I scream at the world and ask that question we all have which is WHY?? But at the end of the day it is you who is suffering and if I can play any small part in making your life better, however long it may be, then I will do whatever I can.
Love you xx
For me hearing that your cancer had returned and was terminal, left me feeling immediate denial and confusion, I cried and I was pissed off, how dare cancer rear its ugly head again !!
I know it sounds cliché but I seriously changed my entire outlook and attitude , you inspired me to get off my arse and change my journey to appreciate the "little" things . So many times a day I motivate myself to stop thinking, stop procrastinating, stop questioning, I have a no nonsense approach to my life now.
How do I feel about you ? I feel blessed and "thankful" that our paths crossed you are a force to be reckoned with and I'm pissed off that cancer chose to mess with you , I feel that you're guts and determination are your greatest attributes, you my friend have taught me so much about myself and before you came into my life I did have this battered little person inside continually second guessing herself and looking for recognition and praise. You are my inspiration. Yes cliche but it's true. I adore you xx
And yes this was very hard to write xox
So there you have it a small insight into how friends are affected by this disease, all I've ever wanted from my friends pre cancer and now, is support and unconditional love and that's what they've given to me, I am truly lucky that I have each of my friends to ring and cry to when I feel like shit, when I feel like I can't face the next day, when I want to bitch and when I want to talk about last nights episode of Beverly Hills housewives, so basically a friendship before cancer is exactly the same as it during cancer and terminal cancer, it's just that it probably holds a bit more meaning than it did before.
For those friends out there who are trying to figure out the best way to deal with a friend having cancer, the best advice I can give, is take off the kid gloves, we are still the same person we were yesterday, for me I want you to not constantly be repeating clichés like "we'll beat this" "it'll all be fine" , yes of course we want to hear that we can get through this (unless you're terminal, then the old "they're coming up with new things everyday" bullshit really gets on my goat), but we also want you to express your fear, your sadness. I sometimes have felt alienated or somewhat of a hypochondriac because when I'm bald and have no eyelashes and eyebrows and you still insist on telling me you don't notice and i'm still beautiful, it infuriates me, I want you to say the truth, I want you to say, yes you do resemble Dan Aykroyd from his Coneheads days without eyebrows and when I'm on the floor in a ball crying from pain or chemo side effects, I don't want you to just hug me and say it'll all be alright, if you want to cry, please cry, sometimes we just need you to lie on the floor next to us and cry and breakdown too, in some strange way it makes us feel better.
Some friends will distance themselves from you, because they simply cannot deal with it, if you're one of those people, text the person and tell them why you've gone awol, we will most likely understand, but don't just disappear, for those who want to help, but don't want to be the emotionally supportive one, offer to bring over cooked food, pick up prescriptions for them, do a bit of laundry, clean their house,offer to babysit or pick up the kids after school if they have them, these things will help greatly and be beneficial to both you and your friend.
As I've said before, this disease does not just affect the patient, so for you, the one with cancer, try to be gentle on your friend, they're trying to navigate this minefield as well, it's new territory for everyone, so lower your friendship expectations for a little while, until your friend has time to digest everything and come to terms (if that's ever possible) with the fact their friend could be facing death.
Most of all, like with any friendship, honesty is the best policy, speak with your friend when things have settled down a bit about how you want your friendship to work during this asshole of a journey, sort of like a "game plan", a "friendship plan", that way you both know where you're at and where you're coming from. It may sound silly, but I feel facing it head on early on and making each other aware of your expectations, will help you avoid a lot of stress or heartache down the road. As I said, you're both new to this, there is no right way or wrong way to handle it, you're both going to be scared and unsure of what the future may hold, so be gentle on each other.
Thank-you to my friends who provided their responses and thank-you to those other friends of mine who are there for me no matter what, your love and support, is a large part of what has seen me through the days where I just don't think I can fight anymore, you guys are the ones who make me get back in the ring again.
To sum up the type of friendship I have with my friends, I will sign off the same way my friend Nicole signed off her email to me, with her response to my question.
Love ya mole xx (and that my friends is true friendship right there 😜)
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.