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.
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.