Christmas 2015 was a very quiet affair spent at home with just my husband kids and cousin.  It was hard for me as no matter how positive I tried to be there was an unease in the pit of your stomach that this could have been my last Christmas. Everything I did I thought ill maybe not get to do this again.  What would Christmas be like for everyone if I wasn’t here?

All through my treatment everyone always told me how positive and inspirational I was.  Although I really appreciate those kind words I honestly do not see myself doing anything more than any other wife or mummy would do.  There are two options when diagnosed with cancer get up and get on with things or lie down and let this destroy you.  As I said before I was very close to lying down at one stage.  However it was with support from my cousin that I was able to get up brush myself down and get on with it I had to but most importantly I wanted to for my husband, kids and family.

Although there are some people who are better at dealing with sickness than others .  Our family has personal experience of this and can see how not the cancer itself but the mental aspects of dealing with cancer can destroy someone. Therefore I can also understand how some people never get over the guilt their cancer diagnosis has brought them and find it hard to get on with things.

I also recognise that it can be hard for other people to witness their family or friend going through a cancer diagnosis which results in people keeping their distance of fear of saying or doing the wrong thing.  In actual fact there is nothing more hurtful than being avoided.  It looks to the cancer patient that people do not care and are happy to bury their heads in the sand and get on with their busy lives with tunnel vision.  I have had people put their head down in the street to avoid eye contact with me were a simple hello would be suffice.  In actual fact many times its nice to have a conversation with someone when its not all about me and cancer.  I still like to hear a bit of gossip or funny stories about nights out or holidays.  I’m not going to think huh its alright for them out and about!!

Well back to my chemo life, I was due to get another chemo the day before New years Eve after my last experience of docetaxol I had asked Dr J if I could get a lower dose.  He gave me three options we could lower the dose of docetaxol, I could go back onto FEC or we could crack on with the current treatment plan.  Over Christmas I thought about these options and decided I would crack on.  I knew I would never forgive myself if this came back as I would think maybe if I hadn’t got a reduced dose (just while I’m on that subject of chemo dosage the oncologist works out how much chemo you get on your weight and height. I remember the very first day the chemo nurse saying to me “oh you are getting quite a high dose of this” I asked her why and she looked at me and said “oh because you are tall”  I laughed and said to her “you mean I’m fat therefore need more” So this has been a running joke with us that as I’m a big girl I get a bigger dose.) or stopped the docetaxol and went back onto FEC it wouldn’t have come back.  So I cracked on with chemo number 4, however stocked up with plenty of pain relief and didn’t let the pain escalate before I started pain relief every 4-6 hours.

Unfortunately with chemo and pain killers comes constipation although some women do experience the other end of the spectrum, me however it was constipation.  I’m not very good at taking dissolving tablets or medicine so in order for me to get the constipation medicine into me I had to stand over the sink retching holding my nose. However not being able to go to the toilet for  over a week or 10 days needs must!!!

I also had the kitchen sink retching business trying to sort my tongue and taste buds out.  I had read that camomile tea helps the sore mouth as well as making baking soda into a paste and rubbing it on the tongue then scraping it off with a tongue scraper and liquorice.  So my dear aunt went to the chemist and bought me it all. I think my husband got a cheeky photo of me standing over the sink retching having gargled camomile tea, (how anybody drinks that is beyond me, it tastes like hay) putting the paste over my tongue and then scraping it off and the eating liquorice.  Believe me you would try anything when you are hungry and want to taste food in your mouth.

On the Friday morning the following week, I was sitting at the kitchen table having a cup of tea just before the kids went to school.  As I got up from the table I felt a nip in my chest looked across the table at my cousin then looked to the ground.  My Hickman line had fallen out!!! What? how?  I rang the chemo unit and they were as shocked as me but told me to get to the clinic asap.  All the nurses couldn’t believe my Hickman line had fallen out but then again it was me they were talking about if its going to happen it will happen to me.

On Saturday 9th January my situation was about to get even worse.  I was sitting on the sofa and  rubbed my hand over the top of my right breast and felt a small hard lump.  I didn’t say anything to my husband at first but later asked him and my cousin to feel it.  I decided to try and put it out of my head for the weekend but to ring the hospital on Monday morning.  The only problem being I was in between hospitals at the minute so didn’t know who to phone.  On Monday I rang Margaret my chemo nurse and she advised me to ring my original clinic.

On ringing the clinic the breast nurse told me she would speak to Dr J and get back to me.  She rang back to say he wanted me to be seen at clinic on the Wednesday.  Once again off I trot to the hospital.  I am seen by a lovely female Dr who goes over my current situation and examined me.  Following examination I was advised I would have an ultrasound.  Oh brilliant I thought here we go again.

I was taken to the ultrasound room were I had my two previous ultrasounds and waited with baited breath on the radiographer coming , thank fully it was a different one.  As he was examining me the nice Dr came in and said she wanted to see what was happening.  After the examination with ultrasound he said it looked like a swollen lymph node probably from surgery in August but he would do a biopsy to be sure.  Before leaving the room I said “so its nothing sinister” he said well it looks like a swollen lymph node.  I was told to go and get a coffee and come back in half an hour as they would have results back.

My cousin and I went to the canteen and had lunch.  I rang my husband to tell him what was going on I said “he doesn’t think its anything sinister as he said it looks like a swollen lymph node.”  My husband just said blatantly well I don’t believe them, we have been here before until they get the results of the biopsy I don’t believe them.” My cousin said for god sake tell him to stop being so negative.  We left the canteen and went to get my results.

As we were sitting the nice Dr came through the door, she looked at me and shook her head and nodded for me to go in.  I looked at her and said ” you are going to tell me that it is cancer, how the hell can it be cancer when I’m on chemo? how has this grown when I’m on chemo? she told me how shocked she was and that she had been to tell Dr J who was at his clinic upstairs. I couldn’t believe it yet I wasn’t surprised one bit this was just how it was going to roll with me, one kick in the teeth after the other.

She told me Dr J asked her to request a CT scan of my abdomen to check if the cancer had spread to my lungs, liver or pelvis.  She got me an emergency appointment for the next day I left her and went to see DR J.  I asked how has this happened? He just said “Lynette I don’t know I need to discuss this my colleagues and get a collective view on what’s the best way forward.  Is it to finish with chemo and go straight to mastectomy now.  Oh and it will be a double mastectomy now there’s no choice.  Or is it best to finish chemo as there is only one more cycle to go and them mastectomy?”

I left the hospital once again with a dead weight on my shoulders that I had to tell my family this news.  I also had scanxiety, a word which is widely used by cancer patients.  Everyone who has ever been in this position knows what turmoil it puts you in going for a scan to see if the cancer has spread and then waiting on the results.  One of the things you read about with cancer is stress, well there is nothing like the stress the Dr’s put you through waiting on scan results. You have your scan and have to wait days potentially a week or two to get the results of it in the meantime you have yourself dead and buried.

I had a week of scanxiety, however the following Wednesday he told me my scan was clear and oncologists had all agreed that I would finish my chemo then go for double mastectomy asap.  He also agreed to lower the dose of chemo for my final one.

The final chemo went ok with no major issues I had been referred to the breast surgeon and had got my planning appointment in to see him for early Feb.  Onwards and upwards I thought I need to get these bloody things off to give me some peace.

 

 

 

Just taking you back to the time of my second diagnosis the day before I went to meet the consultant I remember looking up a website for symptoms of breast cancer.  This website gave a summary of all the symptoms, however further on down the page it referred to Inflammatory Breast Cancer which I had never heard of.  I read that Inflammatory breast cancer is a rare and very aggressive breast cancer in which cancer cells block lymph vessels in the skin of the breast.  Then I read the prognosis and thought oh sh1t I wouldn’t like to have that one.  I proceeded to reading down the list of symptoms:-

Swelling, redness, pitted skin referred to as peau d’orange as it looks like orange peel, hot to touch my stomach fell through the floor, but I thought no I cant make any assumptions until I see the consultant tomorrow.

As I already told you the consultant referred to my diagnosis as rare and aggressive, I think in the whirlwind of the conversation I didn’t even think to ask him to elaborate.  It was only later as the chemo nurse was administering the chemo into me she said to me you have the inflammatory type”.  Shocked I asked her “do I” she flicked through my notes and said yes you have the inflammatory type”.  So that is how I found out I had inflammatory breast cancer.

Since then I have met a lot of amazing ladies through the Inflammatory Breast Cancer Network which is a non profit organisation run completely by volunteers or should I say volunteer Caroline Ballinger who’d daughter was diagnosed with Inflammatory Breast Cancer and is thankfully doing well.

As the statistics say when you research inflammatory breast cancer it is usually diagnosed late due to misdiagnosis which are usually mastitis or some other skin infection.  By the time many women get a proper diagnosis the cancer has already spread to other parts of their body such as their liver, lungs, bones or brain.

Over the past year on our support group of 120 ladies we have sadly lost 12 ladies to this disease. To me that is 12 ladies too many.  It makes me angry that these ladies could still be alive if their complaints of sore, hard, hot and red breasts had been taken seriously by their GP’s, and been referred to the breast clinic.  I must stress that I think my case of being dismissed by the breast clinic is not the norm from what I have heard.  I believe that the majority if not all cases once referred by the GP to the breast clinic are diagnosed through skin biopsies.

I did get an opportunity to meet with the consultant in charge of my case at time of misdiagnosis.  He apologised profusely and said definitely there were lessons to be learned.  I said that a 5 minute skin biopsy would have diagnosed me in August, however this had not been done as the mammogram did not show a lump.  I have also learned that Inflammatory breast cancer does not cause a lump but the whole breast swells due to the block lymph vessels.  Therefore on a mammogram the breast looked all wispy its often described as looking like candy floss and that is exactly what mine looked like in July.

Well all I can say is that thank fully my cancer had not spread beyond the lymph nodes under my arm and the chemo was certainly reducing the swelling.  However I did lose all trust in my hospital and one thing you need when going through cancer is trust in the people looking after you.  I asked Dr J if he could refer me to another hospital which he worked at.  He agreed to and told me his colleague surgeon would do my mastectomy.

Losing my hair

In July I had long hair, however when I heard I was going to have chemo I decided to get it cut shorter.  After I had my first chemo I got it cropped short as I was told it usually starts to fall out 10 days after the first chemo.  So my sister went with me to the Macmillian Centre to get fitted with a wig.

I had to tell the kids I was having chemo and therefore my hair was going to fall out.  Lesson number one until you know the full facts of the treatment plan never give the kids any expectation.  I had told them in August it would most likely be radiotherapy not chemo.

I remember being in the shower the first night my hair started to come out.  My cousin had gone back to England so I just stood in the shower and cried.  I didn’t want the kids to see me crying.  I had made a rule to myself and my family that I didn’t want the kids to see anyone crying.  Everyone had to act normal and their routines they were used to would continue, keeping everyday life as normal as possible for them.

At first my hair got thinner and thinner so I started wearing a wee beanie hat in the house even in front of the kids as they hated seeing my hair all patchy and straggly.  Eventually when my cousin came back from England for my next chemo she cut it all off.

At first I was very conscious about being bald, everyone who seen me bald said I was the spit of my brother. (aagh) Although I had the wig which we nicknamed Whinny I didn’t like it.  I just couldn’t get it styled to suit me so had my hairdresser cut it a few times but still I didn’t like it.  I found wearing scarves was more comfortable and I started to collect a wide range of colourful scarves which I would chose to match the colour of clothes I was wearing.  It got to the stage that everywhere I went people actually complimented me on my scarves.  Initially I wasn’t allowed out with the kids without Whinny on then they decided they didn’t like it as they said I looked like a granny so they wanted me to wear the scarves too.  As I was having my chemo over winter it helped too as I could wear scarves and nice hats, however going through it in the summer must be harder to cope.

I think the hardest part of it all is as soon as you go bald or wear a headscarf you know people are looking at you going “oh look she’s got cancer” were as if you wear a wig nobody knows what you are going through.

That is one thing I have learnt and I now really try to be more aware of  looking at someone in the queue next to me or being impatient with the person in front of me at the ATM or car parking ticket booth.  I have to just take a second and think that person could be having a really bad day.  They may have just got bad news about themselves or someone they love.  You just do not know what is going on in other peoples lives.

I remember I would have looked around me and thought how everyone was getting on with their lives and daily routines and I was going through hell.  I’m not going to lie I did think why me? why is this happening to me? but then I had to remember I was no different or no more special than any other person so why not me?  It does still creep into your head now and again especially when you hear people moaning about the most trivial things.  I think to myself how about you walked a mile in my shoes see what you have to moan about then it certainly wouldn’t be about the weather, or having a cold or having to get up and go to work.

Chicken Pox

My eldest son was sitting his AQE tests in November and December again I faced guilt putting the stress of my cancer on him when he already had to cope with sitting his tests.  On the day of his first test my cousin and I were taking him into the school.  It was pouring with rain I pulled on my coat but had my slippers on knowing that I wasn’t getting out of the car.  As I ran across our yard I slipped on mud went flying into the air and crashed down on my ass in the middle of the mud.  I thought my cousin was going to wet herself laughing.  She stood in the middle of the yard not being able to move with laughing at which stage I was laughing too and trying to get myself up out of the mud! Finally she came over to help me up but having no time to get changed I had to get into the car covered in mud.  My ass as well as being sore was soaked and muddy so I had to pull my trousers down and she drove to the school still laughing with me in the passenger seat with my trousers down around my ankles. Oh what a laugh and believe me we have had many of them through all the gloom too.

A few weeks later he was sitting his second test paper this was around the time I had shingles.  Two days before he had to sit his test he came down to me in the kitchen and said mum what’s those spots on my back.  Oh no chicken pox!!! I called my youngest down and looked at him and yes he was covered too.  As shingles and chicken pox are the same virus there was a risk that this could happen as my kids hadn’t had chicken pox yet.  I couldn’t give anyone shingles but could give anyone who hadn’t had them chicken pox which I had just done!! ARGHHHH!

I rang the school and got it arranged that my son would sit in isolation on the Saturday morning and do his test. He was grand I probably felt worse with guilt than he did with the chicken pox.  They both recovered well as did I from the shingles.

Taxol, what can I say except horrible toxic chemicals

As I said previously my treatment plan was to have 3 cycles of FEC the smelly red toxin which made me nauseas’ however other more unfortunate ladies sick as pigs. I suppose you could describe it as a type of morning sickness nausea.  Even now there are smells which catch me out and make me get a nervous nausea feeling in my tummy.  My work colleagues bought me lovely body shop shower gels and lotions which I used while on FEC chemo, afterwards I had to give them to my mum as the smell turned the heart out of me! Another thing I wore was Paco Rabanne Olympia perfume which I loved, oh no now it just takes me back to that unpleasant time in my life.

Well my FEC chemo was over and now I was starting a chemo called Docetaxol which is all part of the taxol family and are made from the bark of the Pacific Yew tree.  Bearing in mind Yew trees are poisonous to horses I thought keep going I’m half way there 3 down 3 to go.

I’ve never had good veins, however having had chemo injected into them 3 times by now and countless bloods drawn I had to get a Hickman line inserted into my main artery in my neck.  A lot of women get PICC lines into their arms however, as I was having a mastectomy I could not have the PICC line.  I had to go to the hospital and get it inserted under local anaesthetic.  Its not a pleasant looking site as its a long tube which splits into two one they use for drawing out of and the other to inject into and hangs down from your neck.

The following day I was getting chemo number 4 which was docetaxol.  I had got to know my chemo nurse by now as they nominate you one who will be with you throughout.  I had started watching Downtown Abbey on Netflix so we used to talk about Downtown Abbey her always careful not to give away the storylines.

By this stage my cousin had decided to move back home after 7 years away.  She would move in with us until she got her house in the new year. My cousin has been to every single hospital appointment with me and sat with me during every chemo treatment.  Its along day when getting chemo as I would sit for an hour or two waiting to see the oncologist who would check everything was ok then write up the chemo prescription which then went to pharmacy which could be another wait.  They would bring soup around at lunch time for the patients, again the smell of this would turn me as I wouldn’t be up to eating much on chemo days.  My cousin would say “flip sake you could say yes and Id eat it I’m starving!!”

At my meeting with my  Oncologist I asked if I could get genetic testing.  You may have heard of BRCA 1 and 2 as Angelina Jolie tested positive for BRCA 1 and chose to have elective surgery to remove her ovaries and have a double mastectomy.  BRCA 1 stands for Breast cancer1 and BRCA 2 Breast cancer 2 this is the first two genes that researchers found which if faulty in a women can increase the risk of  breast cancer by up to 80% and increase the risk of ovarian cancer by 40%.  That is why women who’s genetic testing is positive chose to have risk reducing surgery.

I wanted to be tested because I thought with my two primary diagnosis which I was told was completely unrelated.  My maternal grandmother and maternal aunt both had breast cancer in their fifties which is also another indicator for genetic testing.  My oncologist agreed to refer me to the genetics clinic.

Margaret my chemo nurse told me that Docetaxol usually takes around 3 days to hit you but when it does you will feel like you have got run over by a bus.  Well was Margaret not wrong, on the Friday night I started taking pains in my legs the only way I could describe it was like growing pains.  All through the night my legs were restless by Saturday lunchtime I had a bath thinking the heat would help the pains in my legs.  I rang Out of hours doctor and asked if they could prescribe me stronger painkillers.  They told me a prescription would be faxed to my local pharmacy.

So off my cousin goes to get my prescription. A while later she came home and told us she had got a parking ticket at 4.50pm at night as she was parked on a loading bay outside the pharmacy on a Saturday night.  Really??? My cousin wouldn’t be one to be behind the doors so went into complete headlock with the traffic warden, Oops!!! Nothing was going to change his mind so in the end the ticket was paid.  My kids do like to remind her of it and when they see this particular traffic warden in out town they say “haha there’s your mate”.  They even sent her a nice picture of a traffic warden with a big happy anniversary on it exactly 12 months later.

Well after the traffic warden fiasco I took the tablets she got at the pharmacy and nearly passed out so I have learnt Co-codamols do not agree with me.  After another bad night in which the pain had escalated to my hips, wrists, knees, jaw and hands and I was delusional with the pain we headed to the hospital.  The only way I could explain to people was it felt  like I was getting run over by a steam roller which kept reversing back and forth over me.

While on Chemo you are given an out of hours emergency number.  They will either give you advice over the phone or tell you to come to the ward so I had to go to the ward.  I remember trying to walk into the hospital, a nurse seen me and came with a wheelchair and took me to the ward.  I was given morphine straight away so between being delusional with the pain and now out of my tree on morphine my cousin said I rolled around the bed groaning for hours.  She said it was horrendous to watch as there was nothing she could do.

I had to stay in hospital that night getting more morphine throughout the night and having my obs done.  At 5am the Dr came in to tell me my temperature was up and I must have an infection, I was put on an IV drip of antibiotics.

As I had a Hickman line in only nurses trained were allowed to use this.  I remember asking when my drip was done if I could go to the toilet I think I waited 2 hours for someone to come and take the drip out of my Hickman line.  I do remember the ward being so busy and I do feel for the these nurses who are run ragged on these wards. However I do remember two staff sitting in the middle of the ward at a table talking about their weekend and plans for Christmas for I would say almost an hour.

A while later the nurse was doing the rounds with meds.  Again the ward was so busy and I remember looking in the plastic cup thinking I’ve only been taking one of these but didn’t think much more of it as the nurse had given me it.  Lunch came around the last thing I remember seeing was the scrambled egg on my plate and not remember much more apart from trying to the nurses attention as I couldn’t speak after taking my blood pressure she put me on oxygen as my blood pressure was through the floor. Next thing I knew it was 2.30 and my cousin was walking through the door.  I believe I was completely winged and missed two hours that day! and I think I was probably only meant to have 1 tablet.

I was moved to another ward and spent the next 4 days in hospital. Everyone has neutrophils in there white blood cells which are important for fighting off infection.  In adults counts of less than 1,500 neutrophils per microlitre of blood are considered to be Neutropenia.  My Neutrophils were 500 so had a private room to myself at least to reduce the risk of infection.

This is quite common for patients to experience while on chemo again it is an example of how these toxins being pumped into our bodies play havoc with our immune systems, white and red blood cells.

The week I spent in hospital was the week before Christmas so I missed out on the kids carol service, the secret Santa office party and our Christmas dinner in work.  I also wasn’t that organised for Christmas as I would have nice pates and chutneys made and all the presents wrapped.  As the week progressed in hospital my taste buds disappeared at first I thought it was bland hospital food but by the end of the week I couldn’t taste a thing and I had sores all over my tongue.   Again this is a common side effect of chemo and one which you don’t pay much attention to when reading the side effects as you are more concerned with the risk of infection and blood works.  Well I can tell you that there is nothing as frustrating as being so hungry, smelling food cooking but not being able to taste it.

I remember sitting at the kitchen table one night while my husband got stuck into his dinner and I started crying.  He looked at me confused and asked what was wrong.  Through my bubbling I said “you don’t know what its like to be starving and not taste food!!  Its something we all take for granted and I can tell you now I appreciate food so much.

 

 

 

 

I could not stop thinking about my cancer and the chemo ahead of me so I decided to go back to work for a few weeks waiting on the oncology appointment.  I worked short days but it did help me have something else to focus on.

In the meantime my left breast continued to be sore and hard and I saw it getting bigger through time.  My friends hen party was in Majorca so I tried to look forward to our weekend away at the end of the month.

I finally got the appointment in to see oncology it was the day before we were heading to Majorca.  At that appointment my oncologist introduced himself I do think to myself now and laugh that he drew the short straw getting my appointment that day as he was about to have an extremely large thorn in his side!

At this appointment he asked me how I was, I told him that my right side was grand no issues however my left side was extremely painful, hard, swollen and now was hot to touch, I also had a small lump under my armpit.  His words were “but you had a biopsy”, I advised him that I hadn’t as the focus had been on the right when they discovered the lump there and had informed me that my left side was glandular.

Following an examination he sat me down and said “I believe you will need a Mastectomy”.  I need to refer you back to the breast clinic as you need a biopsy, but my gut feeling is that you will need a mastectomy.  Again I felt as if I had been kicked in the stomach, how was this all escalating into such a nightmare.

As I left his office he told me he was going to get in contact with the consultant at the breast clinic and get me seen there the following Wednesday.

All I can say is thank god I had my friends hen party in Majorca that weekend as it gave me time away in good company not having time to dwell on what I had been told, I kept telling myself I I would deal with it when I got back home.  We had a great weekend and one I will always remember.  I gained two very good friends that weekend and they have been there for me through every hurdle since.  Unfortunately my best buddie has moved away from our home town with her own wee family.  I know it has been hard for her not being here for me but she is always in contact and would be home in a flash if I needed her.  They are all great people.  You know who you are ladies.xx

30th September a day I will remember so vividly for the rest of my life

I had to be at the hospital to see the oncologist at 10.00am, it was a really warm day for the end of September.  He asked me how I had been and I told him I had been in Majorca at the weekend.  He said “you weren’t too worried about it then”.  I said well there was nothing I could do about it until now anyway.

After another physical examination he sent me to see the consultant who said right Lynette Dr J has sent you back to see me.  I felt he still didn’t believe me that anything was wrong.  After an examination his manner towards me changed.  He said I would go for an ultrasound and a biopsy.  Another morning of waiting in a busy waiting area seeing people coming and going.  I was called in for my biopsy, it was the same radiographer I had in July.  He recognised me and said “you were in a few months ago, we found a fibromadema” I said “no you didn’t you found a grade 3 tumour!”

AS he ultra sounded my left breast and armpit he said it looked like I had mastitis (an infection on the breast usually found on women breast feeding) I said oh well that’s good.  He told me he would do a biopsy just to be sure so he took a biopsy of the breast and the small pea shaped lump under my arm, which he said could be an infection in the lymph node.

I left the room and told my husband what had been said.  We went and got ourselves a cup of coffee while waiting on the results.  About 20 minutes later we were called in to the consultants office were two nurses were sitting with him.

I remember looking at him as he gazed at the floor and slowly brought his eyes up to meet mind he said “Lynette I’m sorry to tell you this buy you have a very aggressive cancer in your left breast you are now at a different stage and will need a mastectomy”.

I cant remember much of the conversation after that but I do remember asking him “well what are you going to do about it”.  He told me the plan was to go to oncology were he would talk to me about chemo.

My husband and I were brought back up to oncology who went through everything about the plan which would be chemo to treat the right breast however the chemo would also hopefully shrink the tumour on the left which would then allow them to do a mastectomy.

As he rattled through the side effects of chemo I remember him saying to me “you aren’t listening to a word I’m saying are you?” I said well do I have any choice in this? and he shook his head.  I said “give me the pen then”.

We left his room and were told it would be a few hours before the chemo would be ready for administrating.  We went outside to get fresh air and start making those dreaded phone calls to tell my mum and dad and family.

Sitting on a summer seat outside the cancer unit I phoned my dad however could not bring myself to say the words so Graeme had to do it.  I rang my cousin who lived in Manchester her and I were very close she told me she would be over on the evening flight.  A few more calls were made then we went back into the ward to start my first chemo infusion.

I remember the heat in the place as it was really sunny and warm the windows were open and the wind was blowing the blinds.  Numerous people were sitting around on large armchairs getting liquid injected into them or on IV drips.  I remember thinking it looked all quite normal.  I don’t know what I expected I suppose I maybe thought the people would look really sick, it would be all doom and gloom but there was chatter and laughter.

I remember the smell of the red liquid as it was being injected into me.  It is a smell I will never forget although I wasn’t bad with it I know women who projectile vomited the minute it started going into their bodies and continued to be sick for days afterwards.  One friend told me how she went to the chemo unit months after her treatment to leave in scarves and hats should anyone want them.  As soon as she opened the door to the unit she had to run outside to boke as the smell just brought everything back to her, how awful.

So although is wasn’t a pleasant experience for me I can thankfully say I got the chemo part quite easy or so I thought at this stage.

I also learned about chemo.  It is usually given to patients 6 times.  Do you know there are different types of chemo for different types of cancer even for different types of breast cancer?  Chemo is given either by injection or IV drip once every 3 weeks at a chemo unit.  In between these appointments your bloods are checked as the chemo plays havoc with your white and red blood cells as well as your liver and kidney function.

During the 3 week cycle your immune system is also compromised that is why you hear how people with cancer cannot go into public spaces, hospitals, clinics or any where they could pick up an infection.  The day before your chemo is due your bloods are taken at your local health centre.  If your bloods are low or your liver function is high the oncologist will decide whether you can go ahead with this cycle of chemo or whether it will be postponed.  It is weird as although you hate getting the chemo you want to get it so don’t want it ever to be postponed.  I think its just a case of you want it over and done with as quickly as possible.

Before I left the oncology unit my oncologist (who I will now refer to as Dr J)  advised me that I had to go for a CT scan of my abdomen to see if the cancer had spread to my liver, lungs or pelvis.  This again was another kick in the stomach, when the hell was all this going to end?

Over the next few weeks I hit rock bottom, thank god my cousin was staying with me to keep me company, look after me when I felt sick, take the kids to school and talk to me about the future.  I remember sitting at the kitchen table one day crying, My cousin asked me “do you think you are going to die”  I said yes she said well then you might as well just give up now if that’s what you think then just give up, ring Dr J and tell him you don’t want anymore chemo, there’s no point”

I thought she’s right I have to pull myself together I have to get on with things for the kids.  I rang the doctor and made an appointment to go and see about getting something to help me.  I haven’t looked back from that.

I am part of a number of support forums and I see women talking about the mental issues of breast cancer such as trying to come to terms with the diagnosis, the guilt and the down days they have,  however they are reluctant to take anti depressants.

I am not ashamed to say I am on anti depressants, I am not going to be a martyr.  I need to be strong and well for my kids so my decision was I would take something to help me.  I’m not saying every women should but for me it was the right decision and I don’t think women should feel any guilt or failure in deciding to take them.  In actual fact over the past 12 months I have had the dose increased with every blow I have received.

I also take a sleeping tablet every night.  I believe getting sleep is crucial in the healing process.  There is nothing as bad as lying in the small hours of the morning with your own thoughts and worry.  So I again am not ashamed to say I taking a sleeping tablet every night.  I do hope to be able to stop these at some stage and have been learning meditation techniques to help in this, however at the minute getting 8-9 hours sleep every night is important to me so if it takes a wee pill to get me that then so be it!!

After hitting rock bottom I had good news in that my CT scan was clear my cancer had not spread to other parts of my body so I was stage 3B.  My next focus was on the chemo working and killing the cancer cells on my left breast enough to reduce the size of the tumour and allow the surgeon to operate by giving me a mastectomy and having clear enough margins around the site to stop the spread.

After the first cycle it was amazing the pain in the left breast had almost disappeared and I believed the size of the breast was reducing.  I remember going in to see Dr J on the day of my second cycle of chemo and telling him.  He said now don’t get to excited too soon, however after examining me he agreed that there was a slight improvement.  This gave me a boost for getting the second cycle.

Again during this cycle although I had slight nausea and tiredness I got over the first 5 days which were always the worst ok.  In my case I was due to have 3 cycles of FEC and 3 cycles of taxol.  During the 2nd cycle of FEC I took shingles on my side.  I took a pain in my back which I thought was a kidney infection however when the rash appeared and I googled it I went to the Dr’s the next day and my self diagnosis was confirmed.  I was eating painkillers at this stage as the pain was excruciating.  I had shingles as a child on my side however you can get shingles more than once.  It lies dormant in our bodies and can reactivate when our immune systems are low.  Obviously because I was on chemo my immune system was low and this triggered it.

On the day my third cycle of chemo was due DR J asked me how I was, I said well I’ve had shingles, he said that explains why your liver function was so high.  I cant give you your chemo today!  Gutted I was, as I said although you hate it you just want it over and done with so to postpone it meant my end date was also postponed.

I was determined that the following week my liver would be ok and I would get the chemo.  I endured a week of excruciating pain from shingles without taking any painkillers.  I didn’t want to put my liver function up with the painkillers so I suffered I was going to say in silence but I probably did complain a few times ! lol!

Thank fully the following week my perseverance had not been in vain and I got my finally dose of FEC.  I did hear from other women in the waiting area about an anti sickness injection which helped so I asked for that instead of the tablets.  I must say it was great I had no nausea on this cycle.  My advise to anyone going through this is ask because I learnt if you don’t ask you don’t get!!

 

 

 

 

 

 

Follo

You may or may not know that breast cancer feeds of various hormones and proteins in the body.

So researchers have discovered that breast cancer can feed on Oestrogen, Progesterone or HER2 a protein found in breast tissue.

A women who’s breast cancer feeds on:-

Oestrogen is said to be ER positive or ER + this is the most common type of breast cancer with over half of diagnosis being ER+.  You may have heard of Tamoxifen a drug which many premenopausal women have to take for 5 years following a breast cancer diagnosis to help prevent the cancer from coming back.   Post menopausal women will get a drug such as letrozole however this works in the same way to help stop the cancer from coming back.

Progestogen is said to be PR positive or PR+ this is most common to be found in women with ER+ therefore the same medication works for this.

HER2 is said to be HER2 positive or HER2+ between 15-30% of women diagnosed with breast cancer are HER2 positive.  Researchers have found a drug called Herceptin which the women will get every 3 weeks via a drip for 12 months following her diagnosis as well as her Chemotherapy and Radiotherapy treatment.

A women can be positive to all these hormones and proteins therefore would be classified as being Triple Positive.  However less then 15% of the breast cancer diagnosis are Triple Negative which means the caner does not respond to any of these hormones.

That is good I hear you say, and yes initially I thought so, however what this actually means is that researchers have not discovered what these women’s cancer feed on therefore they have not been able to create a medication such as Herceptin or Tamoxifen to stop the cancer from coming back.

This type of caner is classified as being Triple Negative and for some reason is more aggressive that other types of breast cancer.  Therefore the only treatment for Triple Negative is Chemotherapy and Radiotherapy.

So on Wednesday the 1st September when I went to the hospital to get the results of the pathology following my lumpectomy I was told my cancer was triple negative and a grade 3 tumour therefore I would need to undergo chemotherapy treatment.

This was a massive blow to me as I had read the statistics about Triple Negative cancer being the most aggressive and the most likely to return within the first 5 years from primary diagnosis.  The reality also hit me that I had to have chemo and I would lose my hair.

In the midst of the shock I asked the consultant when I would be getting a follow up appointment, she said he would see me in a year.  Over the past few weeks the pain in my left breast had got worse I felt it hard and painful.  I said but the left breast is sore and hard.  I remember his words so clearly, he said you have had a mammogram so it is fine, I will see you in a year.  Oncology will be in touch with you within 3 weeks to start chemo.   I left the hospital that day crying having to come to terms with everything which had just been said to me.  The idea I had a month earlier were I would have the op, a blast of radio and be ready for the Christmas party was certainly blown out of the water.  All I could think of was the words aggressive, triple negative, chemo!!!

 

 

 

 

Monday 3rd August

Telling my kids about my cancer was probably the hardest thing to deal with at this stage.  I was about to blow their innocent childhoods out of the water with just those few words.

I explained that I had a lump on my boob and I needed an operation.  My youngest just looked at me and asked “is it cancer?”, how could I lie? the only thing I could say was yes.  They asked me was I going to lose my hair, I said hopefully not, big mistake on my part although you never think you are going to be in this position having to answer these questions to your kids so you don’t think about the consequences of the answers, this I would learn throughout my journey.

Monday 17th August – Wed 19th August

I’m admitted to hospital for all my prepping for surgery the following day.  Im having a lumpectomy which is an operation to remove the just the tumour from the breast with some margins around it to allow for clearance of cancer.  I have learned that this is the operation most women have unless there tumour is so big it would remove most of the breast in which case a mastectomy is given which is the removal of the whole breast.  I’m on nil by mouth from midnight so can’t even so much as have a sip of water.  After a horrendous night of no sleep I’m up early the next morning for my shower.  What a long day I don’t think I go to theatre until after lunch.

I wake up in recovery and remember seeing all the nurses walking passed me and looking at me I was really itchy and was scratching all over myself.  I slept off and on for a while until I finally started to come around.

They told me I had taken an allergic reaction to the blue dye they insert into your lymph nodes, as well as the itching I had a tinge of blue to my skin! aagh I remember thinking omg I’m like Veruca Salt from Charlie and the Chocolate Factory.

I got home from hospital on the Wednesday.  I was lying on the sofa with my back to the living room door when the kids came home from my mums.  They sat behind me and for a few moments wouldn’t come around the front of me.  They had heard people talking about me being blue from the dye and didn’t know what to expect, poor souls.

Wednesday 1st September

I recovered well from the operation and had to now go and get the results from the pathology report.  This is the report produced by the lab who have analysed the tumour which was removed during surgery.  Over the past month I had learnt a great deal about breast cancer from reading the books they had given me at the hospital, however I had spent a lot of time on line doing my own research although I was careful what sites I used I wasn’t using Wikipedia.

In a very short summary here’s what I had learned

• Breast cancer is not one thing, it is a complex disease with very different prognosis.
• There are different grades of tumours grade 1 being the least aggressive and better prognosis to grade 4 being most aggressive.
• Breast cancer responds to different factors i.e. feeds on different hormones.
• Breast cancer can be diagnosed at stages 1-4.  Stage 1 being the at the earliest stage and Stage 3 is that the cancer has spread from the breast into the lymph nodes under the armpit however is still curable.  To stage 4 which means it has spread beyond the lymph nodes to the brain, bones or organs and is no longer curable.
• Depending on the grade and stage of cancer at diagnosis will depend on the treatment plan.