18 May 2012

Open Letter to DHB's

In March of 2010 just days before Easter I received devastating news that I had Stage III invasive lobular carcinoma in my left breast. I was only 30 years old. My life would be changing forever.

Following my cancer diagnosis I immediately started on a course of treatment that would take me over two years to completion. This included a mastectomy, 18 weeks Taxotere and FEC chemotherapy then followed by 26 doses of radiation. Also in there was 52 weeks of Herceptin followed by a clinical trial drug for another year, still yet to be finished. In all this time I have visited hospitals for appointments probably over 100 times and that's not including being admitted for overnight stays (7 nights in total) and appointments at other locations.

In my experience and in talking to others the culmination of aggressive treatment such as surgery, radiation or chemotherapy is the hardest part, mentally. This is the part where we are left standing alone saying “Is that it?”. The part where we feel abandoned and alone. Apart of course from the odd follow up visit with the oncologist and blood tests every now and then its pretty much game over, everyone has moved on. In many many respects it IS a relief to walk out and know we are not needing to come back and be filled with toxic fluids that make us feel like death. Or burned a little more. But its also hard after being cocooned inside a place of treatment and care to be shoved out into the real world and left to deal with the mess that our scarred, sick, burned, sometimes hairless body is. Not to mention the mental game.

For me what I found unclear was where the lines are in after care treatment from the hospital. As I was to still be receiving Herceptin after radiation for another 6 months I was to come into acutes every three weeks for my IV infusion. In between that I would see my oncologist from time to time. Where I really felt left alone was from the nursing support staff, such as the specialist breast care nurses.
As the Herceptin treatment went on I found myself getting copious amounts of coldsores. My oncologist upon noticing this mentioned that he had read somewhere a study noting that the Herceptin treatment sometimes held back the body's ability to fight the herpes virus. I noticed. The staff didn't seem duly worried by this however and I was told to call in if I had more. Well they kept coming, increasing in size and frequency as the Herceptin treatment went on. Zovirax, as well as being expensive was useless. I was almost at a state where I was ready to give up Herceptin altogether they were so bad. Then things went up a notch.

I started getting swelling in my lips. It happened once. I thought it was strange but it went away after a few hours. A few weeks later it occurred again, this time a little bit worse. It was happening late at night as I was in bed, so I would wake up with a swollen lip like I had been fighting in a boxing ring. Again it went away after a few hours. A week later, again. This time I panicked. Really panicked. It was late at night, I didn't know what to do and I was fairly certain it was connected to the treatment I was having. What was my immune system doing to me, how much of it was Herceptin? This time I could feel the swelling begin to spread around my mouth to my entire lips - I freaked out and had a panic attack so I rang acutes sobbing. As far as I knew I was still under the care of my oncology team and I had been told that any unusual activity was still to be reported in. As it was after hours my call went straight up to the oncology ward. The phone was answered by a nurse who sounded busy and stressed but not overly concerned for me. I was asked what treatment I was having. I said Herceptin and I was told it was busy and that a doctor would call me back if they could. That was it. Nothing. No concern, no advice to take myself anywhere else. Of course nobody did call me back and I finally fell asleep with my swollen lips itching and aching. Angelina Jolie I was not. When morning came I hightailed myself over to my GP.
The first thing he did was order me a course of acyclovir (antibiotics) and instructed me to keep an eye on the swelling. Of course in no uncertain terms did he say to get myself over to the hospital should my tongue start swelling also. The swelling continued for a few months, meanwhile I was wracking my brain to think what I could possibly be allergic to. At one point one whole side of my face was swollen right up to my forehead. I felt like no one wanted or cared to help me out, especially my oncology team. I was pretty certain all this had been triggered by the constant infusions and battery on my immune system. SURELY others in my position had been affected by this?
Eventually after trial of elimination I discovered the swelling was caused by an allergic reaction to preservative 220 which is on many wines, grape juices and dried apricots. Since I've stopped ingesting anything with this I have not had one instance of swelling – that was a year ago.

The point I am making with this story though is to point out that along this whole saga I felt so alone, so silly and so insignficant. I was left to deal with it all by myself when I wasn't in the right frame of mind to. Where were the breast care nurses? Why were they not following me up to see how I was going, coping? I KNOW it was facial swelling, not related to my breast cancer but it WAS related to my treatment. Was anyone out there who understood me?

This month the government announced a price increase in prescriptions to aid the funding towards the cancer registry. All that made the papers was the fuss over the price “hike” but not much about the cancer funding. To me this is great news and I would like to thank Tony Ryall for listening to the cancer community. Research says 1 in 3 of every New Zealander has some experience with cancer, it is our country's leading cause of death and the problem we are facing is that nurse specialists obviously have huge patient numbers to deal with, oncologists appear to becoming few and far between and waiting lists are only getting longer. The need for nurse practicitioner roles in public hospitals to bridge the gap is urgent, and I hope you, the DHB's, make these roles available. In turn this could give the nurse specialists room to make new improvements where they could then assist cancer patients to ease themselves back into society and normal behaviour. It could work on keeping lines clear for worries and thoughts to be expressed by patients and giving more support to those who flounder. It is definitely a more holistic side to the role of nurse. We understand there are staff shortages, that its a busy public hospital with targets and huge patient loads to get through but us as patients have real worries about life after cancer treatment.
While I'm at it, also on my wishlist is to see nurse specialists interact with other local nurse specialists. As I dealt with two hospitals, firstly for my diagnosis and surgery, then another for my chemotherapy and radiation the communication between both teams of nurse specialists could be improved. Lastly, in all of this, I wondered if I was alone because of my age? There are great support groups available for older breast cancer patients/survivors in New Zealand but there is not much for the younger generation. This was backed up by the North Shore Breast Cancer support group when I enquired. They just don't have many of us was the answer I had. So most of my support I received came from overseas forums and support groups in the USA (such as Young Survivors Coalition) and other bloggers that I met. New Zealand offers such little in the way of support for younger women who have different needs from the older generation. We have young families, we perhaps may still be waiting to have children, the cancer is generally more aggressive. Could this be an area that breast nurse specialists could assist in? Setting up some type of support for these patients that feel alone and scared and who just need someone to hear them?

The treatment may stop but our patient mentality after many months of care takes a while to shake off, so let us down gently. Or just keep some lines open to listen to us. Please.


Photographer. My life + Thoughts. said...

Wow Monica!!
It truly saddens me that you had that experience. You put your trust into the Nurses. How are you to know whats right and wrong. Good on you for speaking out about it.

Also - You are an Incredible Woman. x

Monique said...

That was a very interesting read. I think that although our Health System is truly awesome in many ways, they also have some huge failings, and speaking from experience, that at times leads to horrific consequences. I feel for you, and also admire your strength, and working out what it was that was causing the problems.

Kristy Drake said...

A really well written letter Mon - good on you. xoxo

Sammy said...

Awesome Mon. I am forwarding this onto my Mom as she nears the end of chemo. As an older lady she may not face what you did, as you said, but at least knowing what she could face is half the battle. Knowledge is power. Thanks xxx

Hootnz said...

There is so much you have had to deal with Mon... it's sad to hear that on top of it all, you had this experience aswell to add to your stress levels when you should have had the support to recover without dealing with the unknown. But you have hit the nail on the head..
with Ben, I had often felt in the dark with little care inbetween surgeries and appointments. This eventually led to a Facebook page for mums and dads with children facing the same diagnosis to come together as a support group. In hindsight it would have been great to have had when he was younger... shame you had to search for support so far off our shores!

(Actually my partner is currently nursing a large wound due to neglect of a small infection that the hospital and the corresponding medical professionals could nipped in the bud several months ago :( )

Gail said...

I thought I had commented on this!?
Very, incredibly well-written letter. you did send it yes? I'm so hoping that the "what's missing" gets filled in - your experiences and voice can and will help others who walked that path! SHOUT it!!