It’s a hell of a journey this cancer treatment.
My journey began on Sunday 8th January 2012 when I found this lump in my left armpit while in the shower. It felt like a large grape, at first I thought it was bone as I had lost a lot of weight over the past few years. I called my husband through to see if he felt it too – yes, he did. Right away he started to look worried, but I wasn’t going to jump the gun. I had had a couple of years of not being too well, migraine, weight loss, gastric & bowel problems, not to mention a huge amount of stress! I knew that the body has ways of dealing with stress and maybe this was just another wee reaction.
The next day I called my health centre for an emergency appointment. I had to wait for the practice nurse to call me back as she does triage for emergency appointments. She called and after a few health questions she asked if the lump was painful. I said no, and her words were ‘well if it’s not painful I don’t think it’s urgent’
Just as well I’m the Bolshie bitch I am, I pushed and got an appointment that night and right away my GP said she was referring me to the Breast Clinic.
I have to admit that in the days between seeing GP and my hospital appointment I did get panic attacks. My biggest fear was that not only did I have cancer but what if it has spread, and what it would do to my family. I worried about my husband coping without me, he has his own health problems, and I have been the one looking after him. My sons were both married with kids, they had someone to lean on. I wanted to see my youngest child settled, she had just got engaged. She was still my baby girl.
On 25th January@ 9:30, I went to the Breast clinic at The New Victoria Hospital. (aka The Vicky)
I saw a junior doctor first, she went and got her boss, who tried to play it down, saying sometimes it’s a reaction to a cut in hands/arms, and they tend to just keep an eye on it. Again I pushed, and next thing I am getting a mammogram & an ultrasound. I am then called into a room and being introduced to a breast surgeon, junior doctor, breast care nurse and the consultant I met when first arrived.
This guy was sitting in front of me, hands clasped on desk, leaning towards me saying ‘This is very serious’ and all I could think of was he looked like Matt Lucas, but with a curly mop on his head. I kept expecting him to come out with a line from Little Britain – ‘I’m the only gay in the village’! He remarked I was taking it all very calmly, I said ‘well no one has told me I’m dying yet’. For some reason I had totally calmed down.
I told one of my wee sisters’ about the lump, at that time they had not taken biopsies so I was still being cautious. I didn’t want to worry anyone unduly, but sisters being sister she told my big sister, who was on the phone to me within days. She asked if she could be involved and come along with us to as many hospital visits as possible. I was more than happy with that. She has medical training – she worked in the Vicky as a phlebotomist – or vampire as I called it – and had a lot of experience of medical & surgical procedures, as her hubby had a kidney transplant many years before. Plus I needed my big sister for me.
Hubby & I had been through a pretty stressful few years & I was still angry at him, I blamed him for a lot of the stress -despite still worrying about him.
I have to point out, I am not a smoker, do not drink very much very often, I am not nor ever have been overweight, and I do not have any health problems other than those stated earlier. My 5 siblings have varying degrees of, overweight, smoker, diabetes, high cholesterol, high blood pressure. Not me, they keep saying I’m adopted cos I don’t like cream cakes & chocolate – ‘You’re no one of us’ they say! So much for all the things that give you cancer – I swear when I’m done with this treatment etc I’m doing the lot!
February was a busy month. It began with a whole series of tests & scans.
My Breast surgeon confirmed the biopsies from the lump, and from the various abnormalities that had shown up on scans, was breast cancer, invasive in my left breast – thus the lump – it had spread into my lymph nodes, and non invasive in my right breast. The cancer sites were spread about my breasts, and no lumps. I would never have felt any lumps, and even the mammogram was not clear enough either. She started talking double mastectomy, reconstruction & lymph node clearance. My sister questioned the need for a double mastectomy as only one breast was invasive. It was explained that there were no guarantees that non invasive cancers would stay that way & as I already had an invasive type I was more at risk of it becoming invasive on the other breast. On the plus side at least I would have matching breasts that wouldn’t droop with old age!
I got an MRI, CT scan, and Bone Scan, all to see if it had spread. While I was waiting to go in for my CT scan at The Southern General hospital, the doctor who did my biopsies passed me in hallway. I told him I was just a wee bit anxious having to wait a week to find out if it had spread. He said he would have a look and see if he could see anything now. After the scan, he came out of the room and said, let’s go for a walk and find somewhere to talk. My thoughts were oh oh something’s up. We couldn’t find a quiet area so I stopped him in hallway and asked what he saw. He said it has not spread, I just hugged him; guess I was more anxious than I thought. Then he said did you know you have Arthritis in your spine & Fibroids? Apparently the CT scan shows ‘hot spots’ because of the injection the give you. They then have to identify these hot spots, in my case these hot spots were on an old unreported scan I had for gastro/abdominal problems 2 years before, no one reported it to my GP or me! I’d had back pain for about 20 yrs, but never had it scanned etc. Explains a lot now.
Anyway after all of those scans & tests that involved injecting me with dyes & radioactive stuff, I really did think I would start to glow in the dark!
I had a meeting with my Oncologist who explained my treatment plan and arranged a heart scan. Chemotherapy is hard on the heart so they needed to check if my heart was healthy enough for it, which is was. My husband had been with me for all the tests & scans, and now my big sister was on board. I question everything, and again I questioned why I needed Chemotherapy & Radiotherapy on top of double mastectomy. It all boils down to the fact that chemo alone does not kill off all cancer cells. It can shrink them, and help to prevent spreading. Surgery removes the affected tissue, but again there may be unknown or resilient cells left behind. The radiotherapy is a ‘Belt & Braces’ My treatment plan is called Neo Adjuvant – Chemo, Mastectomy, and Radiotherapy. Not everyone is treated the same, not all cancers are the same. I never knew that before.
I would really recommend having at least one other person with you at these meetings. You get hit with a lot of information, and there are a lot of questions you need to ask.
My sister & I researched like mad. There is so much information & mis-information out there. Having someone else there helps, they can take in the information too, and ask questions you may not think of or forget. They told me I was a complex case. I was never quite sure what they meant, but I told them on my home planet I am perfectly normal!
My chemo was delayed by 2 weeks as my Breast surgeon wanted to do a Sentinel node biopsy on my lymph nodes on the right, just to check the cancer had not spread on that side. This operation involves a general anaethstetic, and then the surgeon injects blue dye into your body via your nipple. This dye seeks out your Sentinel Lymph node, that’s the first node that the cancer would spread to. They take this node out & test it for cancer; it really is a minor op. The test came back clear. The funny thing about this op is that I physically turned a pale shade of blue all over! My nipple and around it was bright blue, but when I walked down to the day room to see my sister & hubby, who had been waiting for me to come round, they both looked at me and said ‘you’re blue’! I looked like those wee aliens in the Argos adverts – I even peed blue – It wore off in a few hours.
March saw the start of my treatment.
The Sentinel biopsy was clear and I saw my Oncologist 2 days before my chemo was due to start. She measured the lump in my armpit; it was 2 cm. I got bloods taken, and then went to see my breast cancer nurse. She explained a few things to us about the chemo and it effects, and gave me a lot of advice & information. She also gave me a voucher for my wig as it is a given with my kind of chemo my hair would fall out. The voucher does not have a price limit on it. You have to take it to approved suppliers who know what wigs are covered by the voucher. I spoke to the Patient Information staff at the Vicky, and was told of Hairmony- a service who can order your wig and style it for you. I showed her a wig I saw online & it was covered by the voucher so she ordered it for me
Chemotherapy began on 8th March at Vicky.
I now had my full Chemo treatment plan – every 3 weeks 6 sessions in all. I had to get my bloods taken at my Health Centre on the Monday before my next chemo, then see Oncologist 2 days before each session. She would check my blood results and measure the lump. I was introduced to Rosie my chemo nurse. She was just like me, cheeky with a sense of fun. She explained what she was going to do.
I sat in a lazy boy type of chair with my arm on a pillow. Rosie put a drip into my hand and I was given Saline first for about 15 mins. Then Rosie and another nurse double checked my chemo drugs. Your medication is made up by a pharmacist specifically for you. They check the name, date of birth; hospital number & type of drug all match the oncologist’s instructions. My treatment was to be FEC-T. These are the initials of the drugs used. I was to get 3 doses of FEC, and then at 4th visit they would add the T drug. I refered to it as Feck That! One of the drugs is also known as 5FU, as appropriate as my attitude to the ‘Space Invaders’ called cancer!
Once they had checked it all and saline had been given, Rosie sat in front of me & started to slowly inject the F drug of the big syringes of drugs into the ventalin port in my hand. At first I felt a cold sensation in my wrist, but that went away. There were now 2 more syringes to go E & C. It was painless & over in around 45 mins.
I was given 5 days worth of anti sickness drugs & 3 days of steroids to take home.
Also, a chemotherapy record book, which I need to take to any doctor I saw & a medical warning card to carry about with me. It also has a chart of symptoms you may feel and colour grades on what action you should take. i,e yellow, orange, red things like temperature above 38 Degrees, rashes, severe vomiting etc contact the clinic, GP or go to A&E. Rosie also gave me some towelling night caps for when my hair started to fall out, mouthwash, cos you can get a sore mouth, a thermometer, cos you need to keep an eye on your temp going up – infection risk.
When I got home I was now peeing Red! That’s the E part of the drugs, which wears off after a good few glasses of water! They advise you to drink a lot after chemo, to flush the drugs out of you system. These drugs are pretty toxic and irritate your bladder so best to flush them out as soon as possible.
I would wake up around 5am feeling a bit nauseous, but apart from that I didn’t feel ill.
Nothing like the horror stories I had heard or expected.
Then I made the mistake of using hair removing cream! It must have been some kind of interaction with the chemo drugs: I put it on my usual places, under arm & bikini lines, next thing my ‘Lady Garden,’ as I heard it called on a forum, was on fire!!!
I was in tears, burnt & the pain something awful. Then my neck and face broke out in blisters. I looked like I had been in some kind of fire accident. I laugh now when I remember my husband trying to explain to my daughter what i had done – not exactly the typical father daughter conversation – you mum has burnt her fanny!
My GP gave me loads of E45 cream, it was all they could give me cos of drug interactions.
On the plus side of that was my skin on my neck dried up and when I rubbed it down with a flannel it was like I had one of those dermabrasion treatments, my skin was lovely -soft & smooth – flashes of Miranda’s experienceSex & the City here!
After the 2nd chemo the lump had shrunk by about half a centimetre – already had it on the run! Oncologist increased my anti sickness pills, they were not allowing me to feel ill, said I had enough to deal with!
April saw the physical effects of treatment hitting.
My hair had started to fall out 2 weeks after 1st chemo. It was getting on my nerves, falling into my food, down my face while using laptop, on my pillow at night. It had to go.
I got my hubby to shave it off 2 days after second chemo. – 1st of April no less!!!
He was pretty nervous about it. He, my daughter & big sister thought that would be when it would hit me, and I would get upset as I hadn’t shown much worry or upset yet. I was just glad to get rid of it.
I wore scarves in different ways, sometimes with hats, headbands & clip on flowers etc on top. I got my wig and a friend styled it for me, but I couldn’t wear it. I just didn’t feel right in it, even though everyone said it looked like my natural hair. I had visions of forgetting I was wearing it and scratching underneath it, sending it lopsided round my head. Either that or I would end up chucking it across the room for being too hot or annoying!
I started to lose my taste buds. Food either tasted like bland baby food or tin!
Now I understand why so many cancer patients lose weight, you just don’t enjoy food anymore. I made a conscious decision to keep eating regardless, I knew I had to keep my strength up, I had a long battle ahead.
I was given information about Maggie’s Cancer Care Centres. They do so much for people with cancer, counselling, therapy, advice, social get together, arts & crafts. I went along to a Look Good Feel Better session held there one afternoon. Here we all were, 12 women at various stages of treatment. Some had already lost their hair and some looked quite poorly, some were like me, still healthy looking. We all sat round the big dining table and were given a wee white holdall full of top house brand make up, cleansers & skin care stuff. The host Betty, taught us all how to remove our makeup, apply skin care stuff, and make up. There were volunteers from the big makeup houses & stores there to, giving advice etc.
It was a great wee session, what differences you can make by using eyebrow make up on thinned or non-existent eyebrows. We got to keep the bags. I totalled it up and the contents came to just under £300 – what a fantastic Charity Look Good is. It was so good to do something non hospital for once.
It was May now & my 3rd chemo was due. I had been getting it in my left hand up until now, but the needle would not go in. My veins were knackered, my left hand and forearm had been aching, so it had to be my right hand now.
The end of May saw my 4th chemo, but before it they scanned my ‘lump’ and it was now 50% less than when I started. My Oncologist decided not to give me the T part of my chemo as the FEC part was doing its job. I was glad of that for more than the fact that the lump had shrunk: I had been told that the T part – Taxotere was a pretty nasty drug. It also could make you feel pretty ill, and cause other side effects – as if the first 3 drugs weren’t bad enough for some folk! So I was more than happy to miss it out if my Oncologist was happy with that.
I had already had my acrylic nails painted dark red. Lynne, my Breast Cancer nurse had advised this as a way of protecting my nails, as chemo can make them light sensitive & they can fall out. When I went to any clinics etc at the hospital they all asked ‘Are you one of Lynne’s patients’? They could tell by the red nails! It was a handy wee tip, a lot of women I met had not been advised of this. Certainly saved my nails. You would think I had bigger things to worry about, but I was determined not to look ill even if I felt it. My daughter laughs at my pre chemo safety checks. I made a dentist appointment the week I was due to start chemo. I was more afraid of losing my teeth than my hair!
Just before my 5th chemo I started to have difficulty in swallowing and felt like I had a golf ball stuck in my gullet, and a rash on my thigh. I popped into the chemo clinic about 3pm on a Friday for advice, but there were no doctors on duty. I got an emergency appointment with my GP – a locum – and he said it was common to get a fungal infection in the gullet with chemo. He gave me some oral drops.
By 6:30 that night I felt really ill. I knew something was not right. By 8pm I was at the A&E of the Victoria Infirmary. They put me in a side room as my immune system was low. and the waiting room was full of coughs & colds. After a chest x ray, some bloods taken & 4 hours of misery, the junior doctor dealing with me finally came back and said ‘well your bloods & chest x-rays are clear, I think we will treat you for a throat infection & I will give you some penicillin’. Me ‘Eh excuse me, but I’m allergic to penicillin, you have my notes in your hand’. He then gave me a choice of anti biotics, nice of him eh? Having a wee bit of experience of anti bios I chose the one easiest on my gut. It was now past midnight & I was too tired to care anymore, I wanted home. On the way out I wanted to shout at the wasters in the waiting room ‘What the hell do you lot think this is, a doctors surgery? There are paramedics wheeling folk in here giving them CPR, folk dying in there, police & serious accident victims all over the place & you lot are sitting there with a cough or twisted ankle, there’s an out of hours surgery across the road that’s where you should be. Feck I feel guilty, and I have cancer!’ If only I’d had the energy never mind the voice.
6 days later I was coughing up blood, I called Lynne, my BC nurse. She said I had to get back to my GP & get my bloods done again, as she felt I was not being treated for everything.
I saw my GP the next morning, and he took bloods, and gave me more anti fungal meds.
That afternoon my Oncologist – Dr Ritchie, phoned me as she had been checking my file & noticed Lynne’s notes. I told her the goings on & she checked for the results of the bloods the GP had taken that morning.
I had developed Neutropenia. That means a low neutrophil count, which means your immune system is not working so good. Dr Ritchie said that if I had not been so adamant and sought help that weekend I would have been dead. She said I had a chest infection, but because of how chemo works on your body & blood it would not show up on X-Rays or blood tests. I should have been on IV anti-biotics within an hour of attending A & E – Doctors should have known that!
By the time my next chemo was due my neutrophils were still pretty low. They had to test me again on the morning I was due next dose, send me home, then phone me to come in on afternoon as I was borderline. This time they reduced the dosage of drugs & gave me a booster jag.
My last chemo was the 21st June. Of course me being me the needle would not go in at first, then my arm started to ache. The nurse heated some gel pads and placed them on my arm while pumping the drugs through.
I posted on my Facebook about my cancer. The support I get is overwhelming. Everyone is as positive as me. They joke, sympathise, advise, encourage and keep my spirits up. I have been befriended by total strangers – friends of friends – who have turned out to be a lot like me in so many ways it is spooky. All of my FB friends are slightly off the wall at times – it’s good to know I’m not the only loony tune from another world on this planet!
To be continued…….
It is now 16 months since I finished ‘active’ treatment, and I am so tired. I used to say cancer diagnosis was like a roller coaster, but now I think it was more like a speeding train. I got off at the various stations along the way for treatment: 6 doses of chemo, bi-lateral mastectomy, 25 zaps of radiotherapy. The train sped along & I was doing great. Now I feel like I’m waiting in the station for my next train and I can’t leave the station. I have more surgery ahead: they will be removing my implant & doing an operation to move my muscle & skin from my back and putting it in my left breast.
I just can’t move on. I thought I would be done with treatment by now.
On 30th September 2014 I had the Lattisimus dorsi with implant reconstruction operation….and it has floored me!