Friday, 14 October 2016

Day 14 #pathways2resilience ~ Janet

Day 14 #pathways2resilience ~ Janet

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Not one, not two, and not three, but four; Multiple recurrence and breast cancer metastasis: And Cancer, Yes, I’m still standing.

Around 30% of women with a primary diagnosis of breast cancer go on to develop metastatic breast cancer. You would think that the treatment first round would have killed the nasty cancer cells, once and for all. But no, they can hide, and raise their ugly heads, not once, but multiple times, after every treatment, and won’t give up, until they cripple you. Metastatic breast cancer is incurable, and not talked about, yet its reality is very much alive. Thousands of women, like Janet, continue to live prosperous lives, and as such should not be written off, despite the ignorance they receive.

Read Janet’s most moving story. Your heart will go out to her, not JUST because of what she has endured over and over again, but how she has risen from it, not once, but multiple times.

Hi, I'm Janet, a 65 year old wife, mum of four and grandmother of eight, one of whom is a heaven grandchild. One of my daughters was born with a rare congenital heart defect therefore I was also her carer for 42 years until we lost her last year.

My breast cancer "journey" began in 2010 when following a routine mammogram I was diagnosed with DCIS middle grade, left breast, no lymph node involvement. I had two lumpectomies as the first didn't have clearance, and 15 rounds of radiotherapy. Then:

2012: recurrence...invasive ductal carcinoma, grade II
2013: small stroke
2014: recurrence…invasive ductal carcinoma, grade III
2015: stage IV/secondary/metastatic breast cancer in bones 2015: death of my daughter
2016: further spread to left lung and left axilla lymph nodes, HER2 neg, ER+ PR-

Whilst feeling very low one day and feeling very sorry for myself I decided to write to the beast!!! Here's my letter I would like to share with you.

Dear Cancer,

You invaded my body for the first time in 2010 and tricked me into believing that it would just be my one and only brush with breast cancer as it was DCIS grade II, no lymph node involvement, so no chemotherapy, just radiotherapy and 2 lumpectomies. I recovered well, returned to work, and continued with my life, never believing for one moment you would ever return.

It's 2012 and the night before my yearly scheduled mammogram, so I thought I'd have a quick check and to my horror I had a lump, I felt my face burn, my heart went into my mouth, I couldn't swallow, I felt sheer terror, it was on the scar line. Next morning I had my mammogram and told them about the lump, so I had to go directly for a biopsy and ultrasound, but I knew you were back, you had crept up on me without any warning. You put me through hell, this time it was grade II invasive ductal carcinoma and this time you robbed me of my womanhood, my self-esteem, my image and self-confidence. I lost my left breast and couldn't even have a reconstruction due to complications. You introduced me to paralysing fear, panic attacks, and turned me into a crumbling negative shadow of myself, suffering side effects of the wretched hormone medication. I had to leave my job and my whole world collapsed around me. I still had to nurse and care for my sick daughter and I think that was what gave me the strength and determination to pick myself up and carry on and fight you, you weren't going to have me!!!

In 2013 I had a small stroke, thankfully I recovered fully, and guess I can't blame you for that but I would if I could.

Well peace reigned for a while and I had amazing counselling that helped me beat you again. It's June 2014, still suffering from image problems and my darling husband used to check my breastless chest area, as I still couldn't bear to look at myself, or touch my flat ugly chest. I saw his face go pale and his eyes fill with tears, he said "oh no, not again, this is so wrong, so unfair, there's a lump”. You evil beast, you just couldn't leave me alone could you? Back to hospital for a barrage of tests, this time further recurrence grade III. Well I was so angry, I didn't even cry and I stayed awake through the surgery and watched them cut you out to see you gone. There were clear margins and I was to continue on hormone medication and carry on. You were NOT going to get me.

It's 2015 now and my daughter is now so sick and she was sadly taken from me peacefully in April at the age of 42, in my arms, at home as she wished surrounded by her family. Then I shouted out loud at you, "OK are you finished with me now? How much more can a person cope with? Now go away and leave me alone".

I tried to pick up the pieces but it was too hard and sunk into deep depression. During this time I felt very unwell and had terrible back pain, which doctors attributed to stress and grief. In October I visited my hospital for another reason and spoke with my Macmillan nurse and asked if I could have a scan to put my mind at rest. The nuclear scan was done and it was first thought to be degeneration…getting old, I laughed.

I then got the call “I'm so sorry you have secondary metastatic breast cancer in your bones”. You broke our hearts cancer. I've never seen my poor husband cry so much, “It's not fair, why you again?” he said. We are numb, incurable, incurable, incurable, that was all we could hear. I would be planning my funeral, doing my Will, sorting out all my affairs. You did this to me cancer, you had won!!! Well NO, to hell with you, I've got cancer, but you haven't got me…not yet. I'm on Denosumab (bone strengthening) injections, exemestane hormone therapy, adcal supplements and pain medication and so far bone mets are stable mable. You also took me away from my primary friends, nurses and support network in a bright sunny waiting area upstairs, instead to be moved down to lower ground floor away from the potential survivors, pink ribbons, lots of information and masses of support.

Nowhere in the sunny department is there any information or literature about secondaries or recurrences, it's as if we have moved over to the dark side, hidden away, we are the failures, we didn't get remission or a cure, we are incurable, we might frighten the other ladies as they don't want to think about the reality that this could happen to them. But it can and does to anyone, cancer you just don't care, you have no conscience and take no prisoners, rich, poor, famous, anyone. BUT cancer we will make people aware of you, we will be counted by the hospitals and authorities, we may not win the war but we will win as many battles as we can. We will fight back. I know I will lose to you one day but not without a fight.

I have an amazing team looking after me now which includes my Secondary Breast Cancer Nurse Specialist, Tracy Acock. Not only does Tracy greatly help me with my care, she also fights for awareness for all those living with secondary breast cancer. I just wish we were in the sunshine as well as it can be an achingly lonely place to be. You have been with me for 6 years and 7 months so far and as wonderful as people are to us they can tire of you, evil cancer. You wear people out and we have to put our lippy on and smile and say "I'm fine"…if only.

Well 2016 here we go again, it's in my left lung and axilla lymph node, albeit small. I refused to cry when they told me, I refuse to give in to you, yes I have days I cry, cry a lot, days I feel low, days of terrible pain, mood swings, but as far as I'm concerned you can keep snapping at my heels but I'll just run faster, not that I can run anymore…OK walk faster.

Cancer I hate you, I detest you, you are a silent monster who has invaded my body, my life and my world. I don't take you for granted, you are always there sitting on my shoulder but you ain't got me yet!!!!


#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness

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