Drowning without a life vest, let alone a life raft... adrift, lost, invisible... even when I look in the mirror . I survived 17+ years of domestic violence and it never changed who I was inside, being diagnosed with cancer somewhat changed me on the inside but not who I am deep down as a person. Yet this chronic acute pain that I have been left to suffer in, has changed and is changing my personality, I can't believe it after everything I have been through I am intentionally being left in pain and actively being ignored by the chronic pain team doctor allocated to me, as I have advised her colleague who called me from the chronic pain team mental health service, when he called and yet again this is someone I have worked with in and out of hospital prior to the cancer diagnosis, I asked him as he was calling me a month or so ago, in regards to helping me with pain, without medication obviously using mental health skills... (BTW HE, THEY ARE AWARE OF MY PTSD, AS MOST OF MY ORIGINAL CHRONIC PAIN IS FROM DOMESTIC VIOLENCE, THIS STOPS ME FROM USING CERTAIN MENTAL HEALTH TECHNIQUES, AS MOST OF THEM TRIGGER MY PTSD) He could not tell me what type of cancer he was treating me for, unbelievable that you can have a chronic pain specialist contact you regarding your pain and sickness and they have no friggin idea what exactly is wrong with you, I had to explain to him what was wrong with me and the type of cancer I have, how does that work???? ALL this time waiting begging, explaining telling any medical people who will listen, my gastric surgeon who I keep being allocated to when I advised about the pain he says it's not his department, letting my dietician that's at home and District Health nurses and my GP basically anyone who will listen,,, I am in pain!!!!!!!
Between Covid and lack of accountability, of doctors in hospitals in your zone area Middlemore, with cancer treatments and oncology, being only available at Auckland hospital, you slip between the cracks and due to this I suffer, anyone in my bubble is watching me in pain suffering.
I waved a white flag and found the doctor who discovered this cancer and he is amazing, he put me in touch with people at Auckland, yet again due to covod, it's going to be a month or so delay, before the lady can even look at my records. In this time I have many many appointments with many doctors, services etc, yet the doctors I really need to see you don't see for months, maybe 1 year+ ,for example the pain team they are known as the chronic pain team. The service used to be helpful, as I had chronic pain already, due to domestic violence and other medical issues. I'm then finally diagnosed with my cancer, and proof no more chronic pain team appointments no more issue appointments with my surgeon, it's almost like everyone disappeared and then a whole new team due to the cancer appeared, despite the fact I keep asking to see the bowel surgeon and the chronic pain team especially the chronic pain team for when on the am at home as I would rather be on Death's door than in Middlemore Hospital.
My last stay at Middlemore was due to a day procedure for my blocked feeding tube where I ended up in hospital for nearly 3 weeks, I see the chronic pain team lady and many of her colleagues in my room on the day I'm being discharged / choosing to go home, to advise me that they are removing my main pain relief, this for me was the straw that broke the camel's back, this woman did not only just walk in after ignoring me for over a year when I'm in hospital, or especially at home after having a complete stomach, part esophageal lymph node removal surgery that put me in ICU I was so sick. suddenly became extremely unhelpful for no reason, despite begging for this Doctor, Team. The lady I have been allocated to now, after my last day at Middlemore with a feeding tube not working, btw it's still not working.... Who Made herself the authority on any changes to my pain meds, for me is not available to contact for help, with extreme pain and breakthrough pain, that I had dealt with prior to being diagnosed, after I was diagnosed, surgery, and chemotherapy, and then coming home, I had only one appointment with the pain team, and this was a over the phone appointment, with my father as my support person. This lady pain doctor will not see me until end of October I have not been given the date or time or location this was just advised by the district nurse. Even going to my GP to advise that my pain is out of control and I am suffering, as she is new to me nothing came of this. All my prescriptions were three monthly apart from restricted medication I have everything in blister packs and normally the pain relief would be in the blister pack now it has to be weekly and has to be separated. Since about 2011-2012 I have been working with chronic pain services and also in hospital acute pain services and I am horrified, I have done nothing to justify this type of micro-management. Nothing to justify this type of treatment full stop with mini paper I have complained to especially when we are in level 4 Lockdown and she expects me to go out Weekly.
I understand that everyone is suffering with covod, from what I have been through myself covif as an excuse cannot justify the lack of health services. I feel my code of Rights have been broken and it is hard to complain knowing that you have to go back to the same place over and over for the rest of my life or whatever time frame I'm allocated. It does not need to be kept quiet anymore comma because I am sure that I am not the only patient that has going through or experienced symptoms services doctors and this hospital Middlemore.
Not being able to work having to go on a terminal illness benefit, is no different to a normal benefit. Yet from me the cost of being sick is out of control and ridiculous I don't know how they expect us people like me to manage. Each time Middlemore is an 80 km round trip for me that includes paying for parking in the price of petrol then there is the trips to Auckland hospital then there's the Super Clinic in Botany and in Manukau awesome a GP blood test people specialist specialist machinery that is located in Auckland city for testing the list is endless and now weekly medication pick up just for my pain relief that to be honest causes me more pain. Then is the price of medications a lot and not funded. My GP charges $19 per visit for 15 minutes if you are 1 minutes over you are charged an additional $19 also I am then advised I need to have some nutrient injections being I can't use my feeding tube or eat orally. So on the way I have to pick up a medication that cost over $100 take it to the nurses at the GP and pay $19 for them to give me the shots, this one day I paid close to $200 including petrol to tell my GP I'm in pain and other issues I'm having plus a prescription and then the shot that I had required apparently for the last month or two yet no one had bothered to follow up my blood test results comma at actually took me chasing down the results for anything to happen. I should not be managing my own treatment, and it seems to be quite common that I am left to follow things up.
To be completely honest some days I want to run it a brick wall head first and knock myself out so I don't feel this pain, some days I can't get out of bed. I always believed hospitals gave you hope help advice care but I've learnt that most of the hospital doesn't show stop the same people that thought I was a hypochondriac and nothing was really wrong with me were taken aback when I appeared at Middlemore after going through chemotherapy and obviously having lost my hair it was clear I was a cancer patient and a shock on their faces one lady even cried and apologized for the way I had been treated. NO ONE is ever happy to get a diagnosis that you have cancer but to say that I was relieved, that I wasn't crazy as I had been made to feel is F*c*e* up
At this point I am tired of not saying anything I don't care of the repercussions of my treatment from them as it could not get any worse than it has been in fact I invite the media to contact me as I am getting nowhere, and I don't have the time literally don't have the time to be f***** around.
I am literally broke I am draining my family of their money, paying back loans still that my abuser took out under my name as he had no chance of Ever Getting loans. My car is sitting with no warrant no rego as I haven't been able to afford to even get this done full stop my father has been driving me to most of my appointments so any money goes to the upkeep of his vehicle and the petrol cost. So many systems in this country are broken from the courts to the hospital to the dhb to the judges I have been let down by so many services of this country that I used to be proud to call home. As I have seen witnessed and been the victim of the courts the health system and a violent sadistic hateful spiteful person who pretty much got away easily considering what he had done. And this was just one incident that I had to put my foot down as it put my family's life in danger... I am now going to do the same with the medical dhb situation and speak up and speak out because I don't want anyone else to go through even if fraction of what I have experienced with New Zealand's medical system and also our work and income. I clearly cannot work and definitely can prove all of my additional costs but the response is there is a limit and that is at that limit does not include any of the cancer costs that I have advised.
How is that possible that my abuser is out walking free after having meals close bedding supplied to him meeting all new contacts of his kind. Getting treatment programs and help reintegrating back into the community, and I get cancer..
