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My Family and the “C” Word…….

In Feb 2014 I woke one Sunday Morning to take my children o the swimming baths and was getting myself ready, as women do and putting my swimming costume on, I was tucking myself in my bra and felt quite a big lump in my left breast.  Immediately, I thought of Cancer, because Cancer was I my father’s family, his sister (my aunty) had breast cancer some years ago.  I carried on my day and after the leisure centre I went to my mums and told my mum and dad I have found a lump.  My mum and sisters felt it and said they didn’t think it was anything to worry about and advised me to go to my GP which I intended to do first thing on the Monday morning.

I went to see my GP who also said she didn’t think it was anything to worry about and that she thought  I was going through the change.  I insisted I was referred to the Breast Cancer Unit, which I did and got an immediate appointment for Wednesday of the same week.  At my appointment I was examined, and scanned and then went back to see the consultant, who told me that they didn’t think it looked good, and they had suspicion it was something nasty but try not worry too much and go back for my results the following week. I knew immediately it was cancer, I knew before I went that I had cancer, we know our own bodies and I knew in myself that this was cancer and something wasn’t quite right.

I attended the Jasmine Suite the following Wednesday to be told that Yes it was Cancer it was Stage 3 Grade 4, and very aggressive.

“Okay” I said what’s the plan of action….  The Consultant asked if I had understood what they had said.  I think they expected me to cry but I already knew in my head that it was positive so I had read everything about Breast Cancer  and the stages and what my chances were etc, and the way I saw it was that I needed to act quickly and get this treatment underway. I have young children to look after, they need their mum, I need to get on with this and kick its arse!!!  Further tests were carried out and I was booked onto my courses of chemo 2 weeks later.

It’s funny but when I entered the Chatsfield Suite for the first time, I was nervous but I was also excited. I got to meet the most wonderful and amazing people throughout my time in chemo, two to name are Marie Caygill(sadly passed) and Sarah. I had been told that the chemotherapy drugs which I was to have would not make me lose my hair for the first 9 weeks (3 sessions) but the remaining 9 weeks (3 sessions) following that I would lose my hair so I decided initially to go with the cold cap, which is very much like an helmet which is buckled around your head and cold water (freezing cold water) something like -20 I believe running around the inside of the helmet.  T is used to freeze your hair follicles and you need to wear it for the first time for something like 6 hours (I think, I can’t completely remember) but after 90 minutes I could not bear this any longer the pain was unbelievable, I had had 3 children and the pain of this cold cap was worse than all 3 births put together.  I burst out crying and had to ask them to take it off, it hurt so much.  I remember Marie and her Mum looking at me with the deepest sympathy in their eyes and asking if I was okay, and do you know what that was the first time I actually cried since finding out I actually had Cancer.   The Journey had begun……….

As the weeks went by I visited for my chemo., again met different amazing people along the way, had really bad shitty times through the chemo, but then also had good days where I would get up get my children ready for school and actually go into work myself.  I used to work at my local school as a Teaching Assistant, but obviously with going through chemo and my immune system being shattered the Headmistress found me alternative work to do so that I wasn’t around the children, if and when I felt ft enough to go into work and see my friends and colleagues.

After the Chemo I had a 6 weeks breathing space to allow my body to get a little bit back to normal before I then had to go for radiotherapy every day at Sheffield for 3 solid weeks.

Following the radiotherapy I then went into hospital for my lumpectomy and complete lymph node clearance, because the Cancer had spread into my lymph nodes under my left arm.

Surgery went well and I was discharged after 4/5 days with drains etc and asked to go back the following Wednesday for a follow up appointment at the Jasmine Suite.

Upon attending this appointment I was told that when they removed the tumor it wasn’t good, and that they had done some tests and it had came back HER2+ and BRCA2+ which unfortunately meant that it was hereditary (BRCA2+) and with it being also HER2+ this meant the chances of a reoccurring breast cancer had increased from 33% to 86%.

Okay this hit me like a tonne of bricks but not because of what was happening to me, all I heard was hereditary, what about my sisters, what about my kids!!!

Then the chances of a reoccurring breast cancer because of the HER2+ what did this mean…….it meant  for me that I had no choice than to try and do everything in my power to prevent this horribly thing from coming back, because my kids need me.

I was then told I had to have the drug Herceptin for 12 months by way of injection into my thigh every 3 weeks. Okay I thought to myself I can do this…….

In 2015 following all of the necessary treatment/surgery to get rid of the Cancer I then opted to have a double mastectomy with immediate reconstruction, to try and reduce the chances of a reoccurring breast cancer, and in 2016 I had an hysterectomy to try and reduce the chances of ovarian cancer.  Both operations went as well as can be expected.   During 2015 my two sisters were both tested for BRCA and unfortunately they both came back positive. Both of my sisters have since had preventative double mastectomys, and are awaiting hysterectomys.

In October 2015 throughout everything else happening my Dad began to feel unwell and was admitted to DRI with chronic stomach pains and Jaundice, tests were carried out and it came to light that he had Gall Stones and they would operate to remove them, which they did, and he was told following his operation that they did find traces of small cancerous cells but they had been removed along with the gall bladder and there was nothing to worry about, as the cancer was lying dormant and to go home and enjoy his life!!!!   We didn’t think to question the hospital we took it o board what they had said, and thought he had had a lucky escape……phew…

But…….. unfortunately in Feb 2016 he received a letter from his GP asking him to make an immediate appointment to go and see him, which my Dad did and when he got there the Dr expressed his sincere apologies and sympathy and was sad to hear of my Dad’s news.  My Dad was very confused, he replied “Yes I did have cancer but I’m okay it’s lying dormant and everything is fine”.  Unfortunately the Dr told him that there was no such thing as a dormant laying cancer and what actually was happening is that it was on the GP’s computer in front of him, Mr Alan Neale……Terminal Gallbladder Cancer, Stage 4, Palliative Care.!!!!!

As if our family wasn’t going through enough of a nightmare as it was with their 3 girls, eldest encountering Breast Cancer and the 2 younger ones having the brca gene, but to be told they had got it wrong/or not explained properly at the hospital was a nightmare in itself.

My Dad was referred to the hospital, after 3 months of monitoring and scans he was then told it had spread into his liver and surrounding tissue. So the consultant gave him the option of extending his life by having chemo, or if he didn’t then he would have 3/6 months to live.  So obviously he opted for chemo, the first 3 months of chemo, went as well as could be expected for chemo, and kept the cancer at bay.  He then had scans etc which is normal practice before starting the next sessions of chemo.  During this time things weren’t going so well he had been admitted to hospital on a number of occasions some times for a couple of days and others for over a week. His legs started to swell as a reaction of the chemo, so they did various tests to try and ascertain what was happening.  They continued with the chemo once he was well enough, but unfortunately at the end of the 2 round of chemo we were told that the chemo had not worked this time and it had also spread and new lesions had developed, therefore there was nothing else they could do for him at Sheffield so he would be then referred back to Doncaster for routine check-ups and under constant Macmillan Care.At the moment Dad is having Good and Bad days, of which is to be expected.

 My mum were told of Evestrust by a colleague at her place of work and that we should contact them to see if there were anything they could do to help at this difficult time. I spoke with Sarah and she and the charity have organised for a (which has turned out to be a small attendance due to all of the stress and strain the “C” Word has had on our family and our family being dragged and torn apart)  lovely holiday home which we are due to go this Monday the 15th of May for a 4 night stay in beautiful surroundings. We can’t thank the charity enough and once I am well enough I will be providing my support to many others along with the existing team at Eves Trust.  (This is the end for now but I will write a full update throughout and following our stay on our luxury holiday) xx

Caroline Neale

For and on behalf of The Neale Family

Family Holiday

Part 2:

The Stables, Ribblesdale Lodge, Clitheroe, Lancashire Monday

15th to Friday 19th May 2017.

We arrived at The Stables at around 2pm and went to the coffee shop/restaurant on site for coffee and drinks and chilled for a little while until we were given permission to enter the house. I call it an house, but believe me it was a Manor….a Mansion…..something out of this world. A gentleman named Paul came to show us around and made sure we knew how everything worked etc and then left us to our devices. We stood in amazement for some time, before exploring the house, there were 6 luxury bedrooms, some with en-suite, 2 family bathrooms, an upstairs living space, a glorious kitchen (where I spent most of my time through choice) I love to cook anyway, but having the use of this amazing kitchen I was definitely the chef for the week, well that was when we hadn’t been looked after by the local chef from the restaurant, who was amazing and cooked for us a 3 course meal on Wednesday evening “in my kitchen” On the evening we arrived we had a buffet delivered which was delicious and then ventured into the hot tub for a nice relaxing evening. During our stay at The Stables we had peacocks in the gardens every morning and my Dad was astounded as to how friendly they became. He had found a new friend, well about 9 of them to be honest.

One morning we had two deers in the garden which was amazing to see and you could visit the local lakes where there was kingfishers and otters. We had a photo shoot on the Thursday which again was amazing, a family photo shoot, something we have never had chance to do. My mum’s words were “she was so happy she could cry”…..oh and neither mum nor dad wanted to leave they wanted to stay there….never to return to reality.During the stay at The Stables it was the first time for a long time that my dad has actually sat at the table and ate a good meal. I made sure I cooked a lovely healthy breakfast each morning and we all sat down together to eat which was nice. Everyone’s faces bursting with smiles and giggles and just the relaxation and chilled vibes which everyone was giving was unbelievable. Myself, my parents and my children would like to say a massive thank you to EvesTrust for allowing this special holiday to happen, but also from myself, my mum and my children thank you so much for giving me my dad back, my mum her husband back, and my children their granddad for this short and wonderful time we have made lots of memories, and nothing or no one can take those away from us.

Once again thank you so much….

Caroline xx

#dreammaker