Wednesday, December 11, 2019
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Devry’s Story (Breast Cancer)

devrys-story-breast-cancerI’m just writing this bio for ‘me’ and sharing for anyone else who cares to read it. I’m trudging through my foggy memories and trying to remember how things happened.

So 6 years ago today, I got the devastating news I had breast cancer, not one, but two separate cancers in my left breast, both aggressive and fast growing. I had attended a routine mammogram a few days before. I just never gave it a second thought; I hadn’t found a lump or any abnormalities. I was later told I would never have found a lump, as the cancer was too far back, near my chest wall. So thankful that our NHS offers these mammograms free of charge.

A letter arrived from Lancaster Breast Care Unit with an appointment for me to attend…. I was shocked. 😯

When I got there, I had a different mammogram (diagnostic) and 18 flaming needles in my boob. Punch biopsies and local anaesthetic

I was told to wait a week then return for the results.

Waiting for the results was the longest week of my life.

It’s quite surreal when you are told you have cancer. I was alone for the consultation, my parents and daughters waiting outside in reception.
I always imagined that when you are given such awful news, you would collapse in floods of tears, but, quite honestly, I sort of relaxed, felt elated even. A weight lifted off my shoulders. Yet here I was finally getting the results and the news that would change my life forever.

I viewed the mammogram pictures and listened vaguely to the consultant. Clouds of thoughts flashed through my mind. I interrupted “just tell me am I going to die?” Silence and what seemed ages, a reply, “More tests and biopsies need to be done to determine if the cancers were only in the breast or if they had spread” (I was not told at this stage if I was terminally ill or not.)

It was suggested I have a lumpectomy and radiotherapy or chemo depending on the results of future biopsies.

I was detached as the consultant spoke “We will do this and that and whooooosh it just wasn’t sinking in, it felt very surreal.
It seemed like I was watching someone else, it was all a blur.

I did not shed a single tear. I was asked “do you want to remain under Lancaster hospitals care or move to Blackpool?” I hardly gave it any thought but decided Blackpool was nearer and I could get there much easier than trecking to Lancaster. ( I still don’t know why I was ever sent to Lancaster in the first place) anyway……. I thanked the consultant and agreed I would wait to hear from Blackpool Breast team.

I returned to my family waiting in reception, my parents looking intently to see if they could read my face and what I had just been told….. I just said
“ come on let’s go”……

I sat in the back of my dads car with my girls. Mum in the passenger seat and dad driving.
I really felt nothing, I must have been in shock, a little like I said before it felt very surreal.

I think my parents must have been too scared to ask anything …. we travelled in silence apart from the girls who were too young to understand why we had been to the hospital. I seem to remember they wanted to play ‘I spy with my little eye’

Suddenly I blurted out the cancer diagnosis but I remained calm and emotionless. My parents must have been in shock and feeling extremely worried. They didn’t bombard me with loads of questions, I remained quiet as thoughts came racing through my mind. The rest of the journey home is a blur. Although I do remember I matter of factly sent a group text message to my daughters and all those who knew I was going to hospital to get the results of my tests)
I hope I sent it in a positive way I’m sure I said “I’ve got cancer but I am fine”…..
I was trying to protect people from worrying about me…. I couldn’t face going over the same story face to face I was more worried that they would all be worried and I tried to stay positive for them.

The waiting for results and appointments is the worst.
These waiting ‘to hear’ times are excruciatingly painful. Every phone call or sight of the postman sent my heart racing….

I received a phone call the next day from Blackpool hospital inviting me to a consultation.

Laura took me to my appointment. I was told by the breast surgeon that they had earlier discussed my case in a MDT ( multi disciplinary team) meeting and knew that Lancaster had suggested a lumpectomy however the team at Blackpool decided a mastectomy in their opinion was the best option as they felt I would have too much breast removed as one of the cancers was wide spread and a lumpectomy would leave my breast with deformity and it would be difficult to rebuild aesthetically.

I never felt scared of having to have a mastectomy because the way I looked at it was…. the more they took, the less chance I have of the cancer returning. I just wanted to live, I agonised over ‘dying’ and my girls not having a mum, my strength was driven by a determination to survive for them. ( how very dare cancer invade my body, it wasn’t invited)

The surgeon gave me options of what surgery I could have. Either mastectomy with an implant or use a muscle from my back to build a new breast. I ruled that out straight away…. I had already decided I would go for the implant.
So I was told to go home think about it then return in a few days.
All I wanted was for the surgery to be done ASAP and get started with my chemo.
The cancer time bomb was ticking away inside me.

A barrage of appointments arrived, tests, x rays, bloods, heart scans, bone scans you name it I had it.

When I attended my second appointment with the breast surgeon I had already decided I wanted both breasts removing for my own peace of mind, symmetry and also to lower the risk of developing cancer in my right breast. The surgeon explained I would need an appointment with the psychologist, this was routinely done to discuss my decision and to make sure I was aware of the ramifications that I was committing to.

I was deemed of ‘sound mind’
Shock horror, even surprised 😱 myself lol.

So the first operation was to remove some axillary lymph nodes and perform biopsies( to determine if the cancer had spread)

I seem to remember the samples were sent to a Manchester lab for diagnosis)
Another agonising wait…….

A follow up appointment with the surgeon revealed the lymph nodes were clear however I was told that my HER 2 was positive.
So apparently everyone has HER2,( it’s a kind of protein, which makes and repairs new breast cells.) Some people are HER 2 negative , 80% of breast cancer patients and the other 20% are HER2 positive. HER 2 positive for people with breast cancer means that HER 2 gene mutates and reacts as an accelerant to cancer cells and the cancer can spread much quicker.
Meaning a greater risk of relapse and metastasis with a positive HER2 status. When the HER2 gene mutates, it causes cells in the breast to grow and divide at an uncontrolled rate, leading to tumor growth.

Guess what! I’m HER 2 positive …. typical!!!
What this meant for me was I would have the mastectomies then chemo as planned (18 weeks) followed by another treatment ( sort of chemo) called Herceptin which would protect my HER 2 from developing cancer cells.This would be given for 54 weeks …. bloody hell 54 weeks! 😳

So the next chapter begins….

Bi lateral mastectomies with immediate reconstruction …
I was anaesthetised with my natural breasts and awoke with implants….(immediate reconstruction)

I was on a cocktail of drugs to help fight infection and morphine for the pain. However I developed an allergic reaction to the dressings which caused massive blisters to pop up all around and underneath the dressings . I remember the registrar taking down the dressings and I was able to see my newly formed breasts for the first time…. and WOW.
The registrar ( female) exclaimed ‘ nice tits’ we both laughed and admired the new twins…

I came home after 5 days with two drains in situ and was under the care of the twighlight nursing team who came every night to empty my drainage bags and observe my dressings. I was in some pain but not too bad. I found it hard to walk around and sleeping on my back, my biggest hurdle was not getting any sleep.

I had to attend breast clinic every other day for a few weeks to check wounds and dressings changed. Laura drove me there and stayed with me at every appointment. Finally my breasts had healed enough to start chemo…..

Prior to starting chemo I was invited to MacMillan unit along with a small group of patients who had all been recently diagnosed with cancer. Some had breast cancer and others had different cancers. We were given a brief talk, then showed a video of survivors of cancer and their chemo journeys. ( looking back, the video painted a very rosie picture and didn’t portray what could go wrong)

The nurse pointed out who would lose their hair and who wouldn’t ( different chemos affect differently) I was told to expect my hair to start falling out around the start of my second lot of chemo.

The day finally came……
First dose of chemo.
Laura came with me again and sat with me until the chemo was done… Every 3weeks I would go for blood tests to check my white blood cell count, then have chemo. The chemo kills all cells not just cancer cells so my immunity would dip then come back up, hence the blood tests to check my levels were high enough. That is the reason my chemo was done on a three week cycle.
( well that was the plan)

So I felt ok…..great.
But the next day oh my god I started feeling so unwell and as the next few days passed I got worse.
At the meeting I mentioned earlier we were all given a thermometer and told to check our temps regularly, if the temperature reached above 38 we were given a number to ring and this was very important to adhere to.
My temperature was at 38.5 and rising, I was in agony . I hesitated to ring the number not quite knowing what to expect. I kept referring back to the video that said I would feel rough… ROUGH!!!! So thought this was normal.
I didn’t know something was dreadfully wrong but Aya insisted so reluctantly I rang the number. I was told an ambulance was on it’s way. Panic stations !
AMBULANCE 😳

The girls had to dash around quickly getting a bag ready with their stuff to take to Hayley’s. They were at school the next day. I didn’t know how long I would be in and how seriously Ill I had become.

The hospital had been pre-warned of my arrival and I was rushed to a cubicle, segregated from all other patients. (Routine infection protection for chemo warriors) Doctors and nurses
quickly bustled about asking questions taking blood and attaching a drip. The doctor said “I hope for your sake you aren’t neutropenic “ well you might have guessed….my blood results came back and I was very neutropenic , ‘Sepsis’. If I hadn’t got to hospital when I did I wouldn’t be here today writing all about it. The doctor said it would have been fatal. My immunity was so low and my body wasn’t strong enough to fight it, my organs were failing.
I was given the treatment and kept in hospital for 5 days, prodded and poked and feeling quite poorly …… then home.

My immune system started to rise again and this meant I would be fit enough to have my second round of chemo as planned next week.

My hair started to fall out, I noticed lots on my pillow and when brushing it. Previously I had been given the name and number of a hairdresser who also fitted wigs …..
made an appointment and she cut my hair short and fitted the wig…. I hated that bloody wig….
It wasn’t long before the rest of my hair was falling out.

Time to call in reinforcements aka Debbie, a friend of mine who’s a barber. I always knew I didn’t want to look like Max Wall ( showing my age) Reference Bobby Charlton ‘comb over’( for you younger lot)
Debbie came straight away and she shaved what was left of my hair…..
I wasn’t shocked by my appearance of my bald head as I had very vivid memories of the rubber swimming caps we were forced to wear at our school swimming lessons….

Next: second round of chemo. Laura drove me there. Stayed with me, got me a brew while the chemo went through and the obligatory stay on the unit for 30 mins after the chemo on the unit.( observed for an adverse reaction)

Home to rest….. REST! 😳
( you’re kidding me right? )
I was in so much pain again and feeling like death. Same scenario as my first lot of chemo. High temp, dying, phone call , ambulance …. sepsis again
Admitted to hospital. Antibiotic drip infusions. The vampires were at my veins every day to check if my immunity was rising. Home after a few days but then readmitted as I was in agony. The next day I was wheeled down in a wheelchair from the ward to my scheduled appointment with my oncologist .( I was so weak) He delayed the 3rd Chemo for a week to allow my body to recover a little.

I went home, still in pain, and mainly in a state of comatose , the steroids and tablets the whole lot was taking it’s toll.

Emira and Aya by this time had been referred by their school to ‘Young carers’
Emira declined their support but Aya took them up on their offer . She was able to get away from home and have some quality time doing activities and little treats out. The assigned care supporter visited the girls in school , this would allow them to say how they were feeling, how they were coping, to get things off their chests. It was support they needed to be able to express and talk about their fears.

The girls had to do so much for me, I was virtually going from being in bed to laying on the sofa,not functioning, just existing…… Aya would take charge of when my meds were due, when my temp needed taking . She set little alarms on her phone and would rush in from playing on her trampoline to give me my meds, which ones and at what time , what dosage etc. I was not functioning at all, in so much pain. In cuckoo land actually .

Aya was nominated for young carer of the year 2014 , we didn’t know anything about it until we were invited to an awards ceremony at the De Vere Hotel. Aya had actually won and was awarded the title. I was so proud of her. Proud of both of them.
I am often asked why Emira wasn’t nominated, but as I previously said she didn’t take up the offer of support from them. Emira dealt with things privately.

Throughout this time I had been feeling a real tightness in my chest, my twins were still hurting. The breast care nurse suggested it was just the chemo and to bear with it.

Over and over every day I moaned to myself and to others how much my twins were hurting.
If you’ve ever squeezed into a tight pair of pants and then gone out for a slap up, then you feel so full up, bursting for the loo and you‘re that uncomfortable you need to undo a button. Well that’s constantly how my twins felt, they were strangling me.

It’s not just how much pain I was in. I couldn’t taste anything. Everyone who knows me knows how much I love a cup of tea…. I couldn’t even stomach one, it tasted awful. My mouth was covered in sores, (caused by the chemo) my memory was affected ( chemo brain) I struggled to get through each day. I just kept trying to focus on getting to the end of chemo then I could get back to being me…..( some hope!)

I looked back at some diary entries I had made when I had started chemo. One day I’m saying “ please please don’t let me die” to another saying
“ please I can’t take any more let me die” I was scared , actually scared if I died my daughters would find me dead, I had that same anxiety each night.

So third chemo. Same again. Immunity low, admitted to hospital, more IV antibiotics feeling dreadful.

Fourth chemo , same again, rushed In to hospital. The consultant on call looked at my history and said to the nurse “ I suggest chemo is stopped immediately.” I was admitted to a ward then the following day I had an appointment with my oncologist . He agreed my body couldn’t take any more. I was terrified “ what about the other two rounds of chemo”?I was supposed to be having six rounds, will I die? will my cancer spread ? what’s going to happen?” He explained that although ideally 6 rounds of chemo was the norm. I wasn’t able to handle it. I had been lucky to have survived sepsis twice and borderline a third time. He told me I would start the HER2 treatment in a few weeks, which is a targeted treatment which only destroys cancer cells and not every cell like the chemo.

I was still suffering with pain and chemo brain and the twins causing me absolute agony ….

So the treatment began, blood tests then up to oncology for the treatment then repeat. I had to have radio active isotope injected into my arm to do full body scans every 6 weeks. The Herceptin can affect the heart and bones. So a continuous cycle of the treatment, bloods and heart and bone scans is the norm throughout the 54 weeks.

This treatment wasn’t as bad physically for me as the chemo but it did have its own pitfalls.
I was so fatigued, aching all over, breathlessness and balance issues.
I would have really bad days and very few better days.

I had follow up appointments to see my oncologist and multiple tests and scans until I reached 5 years post diagnosis.

However his parting words ring clearly to this day….
“ you’ve now finished all your treatments, we don’t need to see you again, however please be aware you are at higher risk of getting cancer in your lungs, brain, bones and liver. 😳 this would be classed as secondary breast cancer oddly enough …..
Thanks for that, cheered me up no end!
They never use the words cured of cancer they refer to it as ‘in remission’

I had a few months to recover in readiness for a kidney operation that had been delayed while I completed all my chemo.
I had been on the waiting list for this op before I knew I had cancer. It turned out to be a ‘calyceal diverticulum’ an out pouch had formed branching off from my kidney which we discovered had 50 plus stones inside. ( Not cancerous )

As well as all these health issues I had a nightmare of a time trying to claim benefits, I’ve worked all my adult life but now I was unable to work and here I was trying to get some financial help… I was so stressed trying to keep my head above water, I had two dependent daughters and a mortgage to pay. The powers that be seemed to put every obstacle in my way and make life as difficult as possible.
Eventually I got sorted but not without shedding so many tears and tearing my hair out( not that I had any to tear out) we just about get by.

After having some time to recover It was now time to investigate what was causing me so much pain with the twins.

Breast ultra sound scan detected capsular contracture which means a lot of scar tissue had developed around the implants and my body was basically rejecting them.

My breast surgeon discussed my options. He could remove the implants and replace them however he said there’s no guarantee the same thing wouldn’t happen again. The only other surgery he did was using the back muscle ( Latissimus Dorsi Flap) to build the boobs. But I didn’t fancy that. So he referred me to the plastic surgery unit at Preston. My plastic surgeon is a god as far as I’m concerned he has practically rebuilt me…..

I underwent the operation
‘the big op ‘ I was in theatre for 11.5 hours , I was cut from hip to hip in an oval shape which included removing all my stomach skin, tissue and my belly button ( although I had a new one made) marvellous isn’t it!
I also lost my appendix scar ( bonus) The tissue was then used to rebuild my boobs ( the birth of my second set of twins) whoop whoop 🙌
the procedure he did was a DIEP…
Deep inferior epigastric perforators ( don’t watch it on you tube it’s gruesome) however I did watch it before my op much to the surprise of my surgeon.
Anyway I spent a few nights in intensive care and high dependency . Moved to the ward and slowly started the recovery.
I was discharged from hospital and given a follow up appointment date. However part of my wound wouldn’t heal, I had to organise dressing clinic at my own GP clinic to have dressing changed on alternate days. Manuka honey sorted it eventually.
Recovery time again, then ……

I’ve since been back to Preston hospital 5 times for more surgery (2 ops and 3 procedures)
I am on the waiting list for what I hope 🤞 is my final operation.

I’m thankful for getting through all this but I’ve had to trade good health for a lifetime of illness and medications as I’ve been diagnosed with fibromyalgia. The pain consultant thinks the trauma I’ve been through has triggered this.
So I have to deal with that as well as the recent diagnosis of osteo arthritis .
It’s been a long road, one step forward two steps back but I’m here I’m alive. I don’t know what the future holds but if I’ve learnt one thing it’s not to worry about what might be but to focus on what is.

I think I managed to maintain some level of a sense of humour throughout …

Special thanks to Laura who came to almost all of my appointments , she even came and stayed with me till stupid o’clock in the morning when I got rushed into hospital more than once. Although on one visit to the hospital she laughed out uncontrollably loudly when I lost my balance and fell over in the hospital car park…. thanks for that. Sympathetic NOT!!!

Also thanks to Hayley who stepped in when Laura couldn’t come to some appointments. I fainted at one of the appointments ( needles involved) I’ve fainted before when Hayley’s been with me… must be her fault I do it….

Thanks also to my parents for driving me to numerous appointments to Preston, Liverpool , Chorley and Lancaster hospitals . It must have been so hard for them seeing their daughter go through so much.
Bless my mum who came every week to do my ironing and a bit of cleaning for me.

Thanks also to my great friends who have relentlessly been by my side, supporting me with their kind words, visits , meals on wheels and little lunch outings . We’ve always managed to laugh. I love you all dearly . Times like this really show who truly has your back, some have surprised me by being there for me, and some surprised me because they weren’t.
(C’est la vie)
My family and friends have got me through all this, and for that I’m eternally grateful.

Special thanks also to my GP. Dr Augustine who has been the most supportive and caring doctor. I have had / still have the best treatment from her always.

I hope that gives a better insight into what my journey has been like so far. I’m due one last op anytime soon, and then perhaps finally I can become almost human again.

Writing this has been very cathartic for me…. it still seems very surreal. However I have the scars as a constant reminder of what I’ve been through.
But like the saying goes:

“what doesn’t kill you makes you stronger.” X

#Octoberbreastcancerawarenessmonth
#checkyourboobies
#goforyourmammograms

Devry
UK
Submitted 10/23/2019

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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