A chill of fear
Hi, my name is Linda Crowden, I am 61, I have three sons, one daughter and four grandchildren.I live in the Bay of Islands with husband Roger, my youngest son Tor 19 and daughter Tara 17, plus numerous pets. Roger & I are bookbinders and we have a small museum.
Almost 3 years ago I discovered a lump, the chill of fear I felt then is something I remember most, I knew it was not good. I saw my doctor next day and was urgently referred to the surgeon at our nearest breast clinic. A biopsy was done and the result were as expected. I was advised to have a full mastectomy, I was offered reconstruction but that would have delayed the operation with further consultations with a plastic surgeon, I opted to have the op as soon as possible, because I just wanted this "thing" removed. My mastectomy was performed on 31st October "Halloween" which somehow has always seemed appropriate. The biopsy done at that time showed 3 lymph nodes affected, there was a delay in the results for HER 2. I did ring the clinic a couple of weeks later to ask the results but was told they were not available yet - I would be informed when they came through, as I didn't hear anymore I assumed a negative result and didn't worry. Post op I was surprised to find myself devasted about losing my breast.
When all was physically healed, I was referred to the oncologist to start my chemo programme. It was a great shock when she said "As you are HER2 positive" - she didn't know I hadn't been informed. I had done the research and so I knew the implications of being HER2 Positive. We discussed the option of Herceptin with her but as we did not have that sort of cash lying around, I was just put on a standard Chemo regime.
My husband & I walked away from that appointment in a daze, How could they have forgotten to tell me!
During chemo I heard about the Herceptin Petition, and decided this was something positive I could do to help, we managed to collect hundreds of signatures, I went to a local regatta one day and people flocked to sign, perhaps it was my bald head but most likely the puppy I had with me that drew them to me. One lady came up and said she wouldn't sign as Herceptin causes heart problems. I said I would rather die of heart problems than cancer and felt that I and others in the same situation were made aware of the risks and were willing to take them to have a better chance to survive.
Having chemo is not pleasant but it wasn't as scary as I thought. The staff at our local hospital are wonderful, and other patients who have been there before give tips on how to cope better.
While having chemo the family decided I had to have Herceptin to increase my chances of survival. We started selling things, then a wonderful old friend gave us money she had inherited from a friend of hers, who had recently died of cancer, She said she couldn't think of a better tribute to her friend than to use it to help me fight my cancer. I shall be forever grateful to them both.
I started Herceptin at Oncology 161, we didn't have enough for the full course but went ahead in faith. I had 9 sessions of Herceptin when my heart was found to be suffering. I had known my heart was in trouble but kept quiet about it as I wanted the Herceptin. Unfortunately, the Oncologist noticed and stopped treatment. If the choice had been mine I would have continued with Herceptin. I was referred to a cardiologist and as predicted once Herceptin was stopped my heart started to recover and after a short time was back to healthy normal.
I remember a feeling of being cast adrift - losing my lifeline - when the treatment finished and the cancer support nurse said she was taking me off her list, Then I realised I was a "Survivor" - now a three year survivor. I think I do appreciate life more, I still have a lot I want to achieve - I feel good.
There is no history of Breast Cancer in our family - now I worry about my daughter, she was 14 when this began. I believe cancer is somehow harder on family and friends than the person concerned, it is easier just to get on with whatever you have to do to survive than to stand by and watch someone you love suffer.
I came through this thinking the public health service here is pretty good but the last thing you need to do is to have to fight the system to get the drugs needed to survive - as well as fight the cancer.
I believe PHARMAC should fully fund Herceptin to all who need it and stop putting budgets before lives. I shall continue to do what I can to fight for that. My husband and I recently had the opportunity to meet Helen Clark and raised the Herceptin issue with her - hopefully every little helps.