What Happens when 3 months drags on and on...........

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.