Let me begin by acknowledging that many of these misconceptions have some grounding in fact. However I’d like to shed a little light on this topic for any parents who may be looking for options for their children who are about to undergo chemotherapy treatment and will lose their hair, especially those parents looking for childrens chemo headscarves and bandanas
Children’s bandanas do not offer full head protection? Yes many do not offer full coverage of the head but my own cancer bandanas for children are pre stitched to a soft cotton skull cap underneath. This ensures that the full head is covered and kept toasty warm.
One sizes fits all? Incorrect. Just like adults children all have different sized heads. You will find when trying to purchase children’s cancer caps and headscarves a lot of companies will only offer one size. I have catered for many children with hair loss throughout the years and I now only offer a custom size measurement service. My reason for this is – there is nothing worse than an ill fitting hat or headscarf, this can cause slippage of the headwear and can cause embarrassing situations especially for children.
Children’s headscarves and bandanas are just for girls? Again this is incorrect. Yes girls may be more inclined to pick headscarves as they are girlie and almost mimmick having hair but I also offer many options for boys. They can choose from cute beanie hats, boys bandanas including tartan and paw print. I will also be releasing fleece hats in dinosaur print and more boy colours next month.
Children’s cancer headscarves and headwear are difficult to tie. This is untrue. Having two children myself I realise how important it is for headscarves and hats to be easy. My headscarves are tied with one simple knot and the bandanas are the same. The hats are simply pulled on and you’re ready to go.
They are uncomfortable to sleep in. Many hats and headscarves sold may not be ideal for children to sleep in but the range that I have created are made from super soft material which will not irritate little heads which means a comfortable nights sleep.
After working in the headscarf industry for a few months I discovered just how much need there was for an attractive children’s cancer headwear range. I have now been providing children around the world with my range of headwear for four years and got to know what works and what doesn’t. I’ve also discovered some insane truths about them.
1. They help children get a better night sleep
When children loose their hair their scalp can be very sensitive and sore. Providing a hat or headscarf will protect the head from rubbing against pillow cases and will also help them retain the head they will lose from the head.
2. Headscarves will boost their confidence.
Yes you heard it right, as anyone who has experienced hair loss will realise that you lose your confidence. Children can be very pass remarkable and nasty at times but I have had children’s mums tell me that having a simple headscarf has made a real difference to their children. They have been used as a cool accessory. One particular mum told me when she was leaving her little girl to school every day her little friends would gather round her to see which headscarf she was wearing that particular day.
3. Everyone likes to fit in and be the same.
Especially when you’re a child – being different is usually a way to attract unwanted attention. I’m certainly not asking any mums to shave their head! Children like everyone to get involved. I’ve worked with families where the mum and the daughter will both buy the same headscarf – this works both ways, maybe the mum is going through chemotherapy and she will get one for her little daughter or vice versa.
With all my children’s orders I also provide a headscarf or hat for a favourite teddy or doll. This service is completely free of charge and the children love it.
There’s no room for airs and graces when you have cancer…
Chemo Appointments and Medical Jargon, in one ear and out the other.
In this blog I am going to try and give you some helpful hints about dealing with your chemo appointments, which can be confusing at the best of times, never mind when you have just been diagnosed with cancer.
As you know from my previous blogs, my diagnosis took me by surprise, I went into hospital to have my stitches removed and was greeted with the news that I had a grade three breast cancer. I can tell you now, I took absolutely no information home with me that day apart from the fact I had cancer.
It is completely natural to switch off, to panic. I just wanted my consultant to stop talking and run away. I can also tell you that the sick feeling in the pit of your stomach will go away, believe it or not the first days after diagnosis are the worst. There will come a time that you will crave more information and you will want to know everything so you can be armed with the facts.
The Internet as a source of information on your cancer diagnosis.
Believe it or not the internet is not always the best source of information. Especially in times like this, when you are sitting at home at 2am and you can’t sleep, you are craving more information on the diagnosis you have just been given.
I found myself stumbling upon a lot of scary stories and medical terms that I did not fully understand but tried to interpret myself. This did not always make for good reading. Saying that, there are some fantastic cancer websites that will tell you the facts in terms that you will understand.
Questions, questions, questions…and more questions.
In between my appointments or treatments I would keep a diary of how I was feeling and any questions I wanted to ask. The night before my appointment I would write them down. When I attended I would sit with my list of questions and ask my consultant to answer them all. If I didn’t understand their reply I would ask them to explain it in simpler terms. I didn’t care if I looked stupid. I would write their answers on the same sheet of paper so I could refer to it once I got home.
The ‘chemo brain’ (Mild cognitive impairment (MCI) – changes in your memory and concentration that occur after chemotherapy) had well and truly kicked in so I often read the same piece of paper fifty times but at least I always got an answer to my question. If possible also try and bring someone with you, four ears are better than two. Sometimes these people pick up on little things you could have missed. Don’t be frightened to question your consultant, after all it is your body they are treating.
Leave your dignity at the door when you arrive for chemo appointments.
I think the title says it all. I had been poked and prodded from all ends, my breasts had been removed and my ovaries, tubes, cervix and womb had followed. The doctors had seen all my private bits and it seemed at every follow up appointment they wanted to see them more. Depending on what type of cancer you have they will probably want to know
when your last period was?
what your poo looks like?
when you last had sex? etc etc.
You quickly learn when you have cancer that you have no privacy left. After having my hysterectomy when someone came in I would automatically turn my back end towards the door assuming they wanted to check me over, I quickly learnt to stop this when my dad came to visit me.
Intuition – let it guide you whenever you sense something is wrong.
Intuition is a great thing, trust your instinct. If you ever sense that something is wrong make sure your doctor rules out your fears with tests – not opinions. If I hadn’t followed this piece of advice and had taken the doctor’s advice I probably wouldn’t be here today. After all no-one knows your body better than you.
Doctors can be very quick to fob you off, but this is your life and your body, sometimes perseverance is required but my goodness it is worth it in the end.
Don’t worry that your consultant may think you’re a pain in the bum, make sure you are happy with the explanation they are giving you, if you aren’t happy with their explanation, ask for a second opinion.
Bedside manner – If you aren’t treated with the utmost respect, change consultant!.
I understand that most doctors and consultants are extremely busy but each patient should be treated sensitively and with respect. Lucky for me, my consultants were fantastic.
During one of my earlier appointments I had a rather unpleasant gynaecologist laugh at me once he realised I was booked in for a prophylactic mastectomy, he told me it would be the biggest mistake of my life, he also told me that there was no way he would consider removing my ovaries.
He then literally shut the door in my face. I sat in my car and cried, I felt so unsure about my decision at that stage but fast forward a year, I’ve had my breast removed which found a grade three breast cancer and also had a radical hysterectomy. I was so tempted to walk into his office, tell him my results and then flick the fingers at him. Needless to say I changed consultants very quickly after that first appointment.
The night before my mastectomy a nurse came into my room and started to give off at me because one of my visitors hadn’t put their seat back in the corridor, I thought to myself “I’m about to have my breasts removed and you are having a go at me because of a chair”, to be quite honest she was lucky I didn’t throw the chair at her head.
The chances are that during your “journey” you will encounter some of these pleasantries but stand your ground, try not to take it to heart, people in the medical profession have bad days just like us. If you are really unhappy or feel uncomfortable by the treatment you are getting speak up.
Ask to be treated by someone else, whether it be a nurse or consultant. I can’t stress that enough, cancer is one of the most unpleasant things you will go through, try and make it as bearable as possible by surrounding yourself with medical staff that you are happy and comfortable with.
My last tip is a very simple one – BRING YOUR OWN MAGAZINES!
I think I have read every magazine back to back in the Ulster Hospital and how bloody boring it is reading the same Ulster Tatler over and over again. Also if you get a really gruesome real life magazine like “chat”, you may just read some of the stories and think to yourself “I may have cancer but at least my partner didn’t run off with the next door neighbour, who turned out to be a man”.
In my next blog post, I am going to be talking about dealing with kids when you have cancer, no easy task. Until then xx
And remember if you are going through treatment yourself or know someone who is please
Chemotherapy has quite a few side effects. Most of the effects are on health and are not necessarily noticeable on the outside but one of the most common and also extremely undesirable adverse effects of chemotherapy is hair loss. The extent of hair loss varies and the pace at which it occurs would also not be the same for all and sundry. Hair loss may occur quickly leading to partial or complete baldness and at times it is in the form of thinning hair and bald patches. In any of the cases, headscarves (or chemo scarves, cancer scarves as they are sometimes referred to) become a very necessary and integral part of your apparel.
There are various types of headscarves and the variances can be in design, materials used, comfort, durability and also suitability in a given climate. Furthermore, there are specific types of headscarves or chemo scarves that suit certain occasions. There is a need to find the ideal headscarves so they do not look odd with the dress you would put on or the place where you would be at.
The factors that you should take into consideration while buying cancer scarves are the following.
Natural fabrics are the best choice for headscarves. They allow the scalp to breathe and there is less perspiration. Among many side effects of chemotherapy, feeling of uneasiness and odd behaviors of the skin are also common. To reduce the discomfort that you are bound to experience during or after chemotherapy should be address in as many ways as possible. Natural fabrics are the best from this perspective.
Although natural fabrics are a popular choice, there is a need of blending in different materials to get the perfect style, durability and utility at different places. This is where the handmade headscarves by Ciara are just great. They are comfortable, durable and stylish and there is a real variety of styles and colours.
You should choose headscarves after considering your age, the places you would go to and also the different times of the day when you would be wearing the headscarves. The Versatile headscarves by Ciara work well for outdoor use at public places while the Nightcap series are good for indoor use at home. The weather should also be considered to choose between light or heavy headscarves. Kids can use one among the special Children’s headscarves range.
Battling through cancer is probably the hardest struggle anyone will ever have to face. The fear of the unknown alone can take a heavy toll on a person’s mental and emotional state. Going through the treatment process is also a long and painful road for the cancer victim as well as family members that have to watch them. Then, there is the physical effect of the cancer and the treatment that takes a harsh toll on the body and has many horrific side effects.
Most people who go through chemo therapy treatment experience an array of side effects from dried, patchy and bleeding skin, nausea to the loss of their hair. Some women go through the hair loss no problem, but most women struggle watching their hair fall out and seeing their physical identity be completely altered as they lose their hair. When women lose their hair, it can be very emotional because not only are they sick with a serious illness, they no longer feel attractive, or even feel like themselves.
While many women will resort to wigs to give them a sense of normalcy, many women cannot afford a good quality wig. Let’s face it, we all have seen poorly made wigs that are easily identifiable as a wig. Then there are the wigs that are out of the price range for most patients. They are made with authentic hair, and are customized, and very pricy. If a woman does find an affordable and attractive wig, they may be uncomfortable, and women going through treatment need to be comfortable.
Cancer scarves as an alternative option for hairloss
An alternative is headscarves for people who are suffering from hair loss. Cancer scarves are fashionable and dignified and can enhance the appearance of any person going through treatment. These cancer scarves, also referred to as chemo scarves, come in a multitude of color, patterns, styles and material so that every woman can find cancer scarves that are unique to her. Because the headscarves are affordable, women can purchase enough to accommodate a changing wardrobe. The scarves are fashionable and stylish and can be worn several different ways.
Going through cancer is a draining process, and most people who are on chemo treatment feel that drain at every level. The loss of hair does not mean the loss of dignity or class, and victims of cancer need to utilize every resource available to allow them to feel dignified through their treatment and healing process.
Hair loss is a common side effect of chemotherapy. The chemotherapy processes uses medications or drugs that target the rapidly dividing cancer cells within the body. Hair follicle cells are some of the more rapidly dividing cells in the body, much like the cells in our stomach lining and digestive tract. When the chemotherapy drugs start working, they can’t tell the different between the cancerous cells and the hair follicle cells, which in turn, results in hair loss.
Chemotherapy-induced hair loss can affect hair everywhere on the body. It causes body hair, facial hair and the hair on our heads to fall out—and that even includes the eyebrows and eyelashes. Chemotherapy drugs affect perfectly healthy cells. As many drugs still harbour this side effect, it’s always great to prepare in advance before it happens.
Many people use wigs to treat their chemotherapy-induced hair loss. Most sources suggest to purchase or get a wig that same colour as your hair before treatment starts. Some people, however, don’t want to wear a wig or even a hat. Thankfully, there’s another type of headgear option for them.
Headscarves for hairloss
Headscarves are becoming more popular as a viable hair replacement option. They’re incredibly versatile for many cancer patients looking for appropriate headgear. Headscarves are made from a variety of different cloth materials, typically soft enough to be tied into any style desired by the wearer.
Some of the most common materials for cancer scarves include soft and lightweight cotton, wool or blends of both materials. Patients might want to avoid headscarves made from slick materials like silks and satins as they’re more likely to slip off.
Chemo scarves are a lovely way for patients to express themselves during their difficult recovery process. Thanks to the amount of colors and styles chemo scarves are available in, there’s no shortage in the type of a scarf a person may want to suit their personal style.
There’s plenty of cancer scarves on today’s market, whether up for purchase or free. There’s also the option of purchasing a scarf from a reseller or clothing store. Wouldn’t you want something a little more personable in nature?
Headscarves By Ciara wants to be that personable solution for chemo patients. We currently stock a wide variety of cancer scarves in many different colors worn in even more styles. A cancer patient should feel comfortable in their own skin, long after their hair loss occurs.
Our handmade headscarves can provide them with the comfort they want. Take a look at our selection of handmade cancer and chemo scarves today.
I lift the phone and call my mum. This is her first day back to work after my treatment. Its only two days since I had my end of chemo party and now this! My mum answers her phone and I relay the conversation I have just had with Dr McIlhenny. She says two simple words “oh sh*t”.
I’ve made my way to the hospital, it’s all so familiar by now. I go through a silent checklist in my head. Depressing waiting room- check, same Ulster Tatler magazine I’ve read possibly five times- check, mum and Keith are here- check, sick feeling in my stomach- check, sweaty hands- check, well I’m sure you get the idea!
I’m called into Dr McIlhenny’s office, she explains that my recent blood test shows a dramatic increase in my CA125 level’s (the markers they use from your blood to check if anything sinister is happening). She wants to perform a simple internal scan to see if she can spot any tumours etc.
So off I go behind the screen and strip from my waist down, I wrap myself in the familiar flowery sheet. I never know if I should keep my socks on, I suppose they look a bit silly, a bit like men leaving their socks on in bed, oh well, I decide to keep them on for luck.
I jump up on the bed and put my feet into the usual stirrups, I have asked my mum and Keith to wait outside, there are some positions I don’t want my mum to see me in and this is one of them. I strain my neck to see the screen as the scan begins, I have no idea what I’m looking for- Oh my god, I think I have just seen something, it’s definitely a tumour, I put my hand over my mouth and gasp, I’m writing my will in my head, picking my coffin- Dr McIlhenny looks at me quizzically, “I’ve seen it” I say, “it’s another tumour isn’t it”?? “Ciara, pet, that’s your ovary” she replies!!
Ok, maybe it’s better if I just close my eyes and think of England.
After the scan has finished I get dressed again and the nurse calls mum and Keith back in. “Ciara, I can’t see anything in your scan”, I’m relieved for a split second until she follows it with, “but taking into account what happened with your breast cancer I am not prepared to take the chance, your breast cancer didn’t show up in the MRI scan, I don’t want the same thing to happen here, I want to admit you for a radical hysterectomy”.
Well I wasn’t expecting that! Ok so I knew after I had Poppy I wanted another baby, however my consultant advised me not to have my eggs frozen before I had my chemo as it would postpone the beginning of my treatment. I decided to leave it to chance, I was young when I had my chemo and my consultant was hopeful that my body would make a full recovery. I even had my periods whilst going through my treatment so I also felt that another baby would be an option, but my bubble has just been well and truly burst. In my head I am gutted, but the worst thought for me, worse than no more babies is having more chemotherapy.
My decision is pretty much made on the spot, if a radical hysterectomy is what I have to do to keep myself well then I will do it.
I am scheduled for my surgery in January, I am dreading it. I have spent Christmas celebrating with friends and family, the fact that I am still here feels amazing but I also feel pretty bitter at the hand I have been dealt.
As soon as I was told about my hysterectomy I rang my sister-in-law Jenny, who is also one of my closest friends. Jenny and my brother had two kids at the time but she was booked in to be sterilised. She comforted me by saying “Ciara we both have two kids, we weren’t meant to have any more, at least we can be not pregnant together”, we laughed about the fact we could drink copious amounts of wine etc.
Ciara with Poppy after the operation.
Ciara with Jake after the operation.
Three weeks later Jenny goes for her hospital appointment – She tells me she is having her scan when her consultant tells her that they cannot sterilise her as she is four months pregnant. Bless her she is so upset, she keeps apologising but I am only delighted for her.
The operation – Radical Hysterectomy
I have been admitted to a plastic surgery ward as the gynae ward has no beds available. I am in a bay of 8 people, my idea of hell. These people are in for minor ops and I am here to have my ovaries, fallopian tubes, cervix and womb removed. I try not to make eye contact with any other patients; I am not in any form to make small talk. I am told that I will be first on the list in the morning so will probably be in theatre at 8am. The nurse kindly gives me a sleeping tablet and I drift off.
I am woken at 6am for pre-meds and then doze back over. By the time the porters come to take me to theatre I am pretty out of it. Mind you I still manage to cry the second I see Dr McIlhenny in theatre. I break down and tell her I can’t believe I am going to do this, it’s all so final. She is so patient with me and tells me if I have any doubts I don’t have to do this, but I tell her my mind is made up. So off I go to sleep………….
Rude awakening, following radical hysterectomy operation.
I have woken to the most extreme pain I have ever felt. I have been cut nearly hip to hip, and can barely move a muscle. It doesn’t help that I am allergic to certain painkillers and refuse to take morphine as it makes me so sick; I am basically braving the pain on a paracetamol drip.
Anytime someone comes to visit me I burst into tears, I even think the nurses are unsure how to take me, they probably think I am some sort of escaped mental patient, each time they ask me if I need anything I break down, they are used to dealing with people having moles removed not hysterical women so they pretty quickly get me a space in the gynae ward which I am so thankful for.
In the Neely ward it is all women, most are in the same boat. The nurses are amazing here; I immediately feel at ease, these nurses don’t bat an eyelid when I cry.
My recovery is slow from this operation; I am in hospital for 5 days. I’m glad to get back home to the kids but am able to do very little except worry about my pathology results and hope there are no surprises in store this time.
The results of the radical hysterectomy operation.
I have spent the past two weeks imagining getting my results, I have prepared myself for more chemo, knowing my luck it’s going to happen. My friend is round when my mobile rings, Dr McIlhenny starts to talk to me, my friend is looking on eagerly for some hint of what is being said, I break down in tears and sob until I can barely speak, my friend looks at me with pity in her eyes and mouths at me “you will get through this”, she in fact does not realise that Dr McIlhenny has just told me there was no trace of cancer in any of the pieces that they removed, she has just told me that I will not have to have any more chemo or treatment and the words that I always wanted to hear are being said……
This is the first time in my life and probably the last I will ever buy a bottle of Bollinger. I have friends and family round that night and we all celebrate.
So there it is; my story and my journey with cancer. It has been a very challenging experience but I have got through it. I have had numerous correction and reconstruction surgeries since then and am scheduled in for more. Obviously the most positive thing coming out of my cancer experience is now my job.
I design and make headscarves and headwear for people going through chemotherapy. I have my own website headscarvesbyciara.co.uk and also see people via appointment.
I have met and will continue to meet some amazing people through my job and I truly love what I do. I am so grateful for the opportunity to share my story with so many people and have been delighted by the amount of people who have been following my blog so far.
Every comment that people post is greatly appreciated. I still have many stories to tell about my experience but from next week I am going to start to cover topics related to cancer. In these blogs I hope to provide you with useful hints and tips for people going through cancer treatment. My topic for next week will be the dreaded hair loss.
Due to my experience I now run my own business headscarvesbyciara.co.uk providing headscarves and cancer headwear for people experiencing hairloss.
I can tell you, I certainly don’t feel very lucky.
Let’s look at the facts, I have just had my breasts removed to prevent me getting breast cancer and guess what…….. I still get breast cancer! What are the chances? Why couldn’t I have won the lottery instead?
“If this hadn’t been found for another six months we wouldn’t have been able to treat it”
Ok, now I feel slightly lucky.
During this appointment I find out that I have grade three breast cancer. I am scheduled for more surgery in four days to have my lymph nodes removed.
He also discusses chemotherapy, by this time I think I have shut off, I ask him if I will lose my hair and he replies with a blunt “yes”. I put my head in my hands and sob, this is my idea of a living nightmare.
I excuse myself from the consultation with the excuse I need the toilet, in truth the only thing I want right now is to talk to my mum. I find the bathroom and phone my mum’s mobile, of course she doesn’t answer – I think I ring twice more before she picks up, she is in work and I can hear her on the other phone when she answers with the simple words “can I phone you back love?”. “No” I nearly shout down the line, “whoever you are talking to put the phone down!”, “What’s wrong?” she says. “I have cancer, I sob, I have to go back for more surgery and have chemotherapy”. The line is silent for a few seconds and then I hear her sob.
I know I have just broken her heart.
I am numb and so is everyone else around me, I have told friends and a few family members and we all agree to meet in my house where we sob and drink coffee and wine. By the time everyone leaves my mind is in overdrive. I lie in bed and I don’t think I sleep a wink.
Lymph node results.
I have had my lymph nodes removed and after a long two week wait (due to the Easter holidays) they have thankfully come back clear. Unfortunately for me though, chemotherapy is still necessary.
Numerous appointments follow, MRI scans, CT scans, and oncology appointments. I finally have my start date for chemo, I feel sick to the stomach at the thought of it.
The dreaded chemo
I already have my picc line fitted so this should all be pretty straightforward I am told. I start to walk up the steps to the MacDermott unit and I actually feel like my heart is breaking. I am about to step into the unknown but I am going to try my hardest to be brave… Ok, that didn’t last long, I am crying before I even sit down!
I soon realised why nurses are often referred to as angels, these women are amazing. They know everyone by their first name and are there to comfort you at the drop of a hat, with either a hand to hold, a cuddle or any information or advice that you need.
They settle me in a room and then approach me with a trolley. It is now time to administer the hard stuff. It’s an odd experience when chemo drugs are being administered, the nurses wear goggles and gloves and cover their bare arms with slip-on sleeves; the drugs arrive in black plastic bags with lots of ‘Toxic’ symbols… and they’re going to pump this stuff into me!!!!! I wonder if this is actually illegal in some countries.
I leave the unit feeling like the life has been literally sucked out of me. I have been pumped full of steroids, anti-sickness drugs and god knows what else. My mum is carrying what can only be described as a bin bag full of other medication and instructions when and how to take them. I am so pleased my first chemo is over, one down, five to go.
I am so ill. 5 days after my first chemo I have to attend the city hospital for a bone scan. My little brother is driving my mum’s new car, I bring a pillow to rest my head against in the back. As we reach Belfast I start to feel extremely nauseous! My brother can’t find where we are going and stops to ask a man for directions, it is at this point that I climb out of the car and lie on the pavement, there is a line of traffic behind our car, my mum and brother are both asking me to get back into the car when I start vomiting, the look on the poor man’s face says it all – it’s only the fact that Aaron (my brother) has asked him for directions to the cancer centre that I hope he knew I was not some crazy alcoholic or something.
My mum and I laugh about this now but I can tell you it was not funny at the time. I get back into the car and start to vomit all over myself, the car and my pillow. I am a sight for sore eyes and I’m sure I bloody stink going into the hospital. This was probably the worst day of my treatment
I can’t sleep at night due to the steroids I am taking yet I am so tired. The steroids make me ridiculously hyper and also want to eat a crazy amount. I break down at the slightest thing. One minute I am stupidly happy and the next I am sobbing into my mum’s shoulder. I actually fear I may end up in a mental home at some stage. I now have a slight idea of what people with bipolar depression may feel like.
The chemo they give me to kill the cancer makes me stupidly sick, the anti-sickness tablets the hospital give me stop me from vomiting but make it impossible to go to the toilet, the drinks they give me to go to the toilet taste foul. The steroids they give me keep me awake all night so they give me strong sleeping tablets to help me sleep, the sleeping tablets give me what can only be described as a hangover. It’s a vicious circle.
For every symptom there seems to be a medication which will provide you with another side effect and another problem.
I don’t think I have ever taken so many tablets in my life but I guess I am going to have to get used to it.
The dreaded hair loss.
I have been told to expect my hair to fall out between day 17 and 19. Day 17 on the button Poppygrabs my hair (as babies do) and a handful of it comes out. I feel pretty horrified. It pretty much sets my mood for the day.
Over the next 36 hours I find it everywhere, on the floor, on my clothes, In Jake’s dinner and all over my pillow. I wash my hair the same night, I look in the mirror after and the whole crown of my head is bald. I cry uncontrollably but decide I will get it shaved the next day.
I make my way to the salon with my mum and Keith, we sit in a room and prepare ourselves for what is about to happen. My mum holds my hand while the woman gets to work with the clippers, I can’t look in the mirror so keep my eyes on the floor. I catch my mum’s eye and she is sobbing, I know her heart is breaking nearly as much as mine.
So how bad can it look I wonder? I have had preconceptions that I may be lucky and look like GI Jane, I mean Demi Moore didn’t look so bad, it might quite suit me. HOW WRONG WAS I? I nearly vomit at the sight of myself in the mirror.
A few things I would like to point out. People think they are saying the right thing in situations like this, to try and make us feel better but mostly they aren’t! Its “only hair” when it is someone else’s. Yes, I know my hair will grow back but I have to bloody walk around with no hair until it does! “You have a nice shaped head”, is not a great compliment but if it’s the only one you can give me, hey I’ll take it.
I got used to my bald head quicker than I thought I would, I think everyone did. I felt embarrassed about it at the start but that quickly passed. Poppy would slap me hard on the head to wake me up and Jakob would announce to his whole class that his mum had a baldy head. I had to draw the line though when he came out of school with a little gaggle of friends following him, he said “Mum, no one believes that you have a baldy head, will you show them”? Er no son, I won’t.
It was at this point that I started designing and making my own headscarves (which you can see at HeadscarvesbyCiara.co.uk). I was sick of wearing my wig, it was itchy and made my head sweaty. I couldn’t stomach the paisley bandanas and towelling turbans that scream “sick person” to anyone who sees. I started making them for myself and getting lots of comments from other people going through treatment at the same time. I was finally happy to be wearing something glamorous on my head.
The half way point.
Ok, I have made it half way. My face has swollen up like a balloon, I have put two stone on and generally feel rubbish but the fact that I am half way through makes me feel slightly better. I have had numerous infections, bugs and problems so feel like the hospital is my second home. All my scans and check ups seem to be going to plan.
During this time I have celebrated Poppy’s first birthday, I was determined to have a party despite feeling dreadful, I have made buns and nibbles for everyone. I hold Poppy on my knee while we all sing happy birthday and she slobbers over her candles. I am so happy to be here that I don’t even notice everyone else crying in the room. For everyone else looking in it must look like a very sorry sight, but for me looking out I am just delighted that I am here to celebrate with my friends and family.
Due to the high risk of ovarian cancer with the brca1 gene, I have also been seeing a gynaecologist. Dr McIlhenny is simply amazing. If she wasn’t examining my vagina every few months I would actually consider being friends, I could imagine she would be good craic (pardon the pun) with a few drinks in her, but she IS examining me every few months and it may feel slightly weird having a drink with her. She is a pretty young woman with lovely mannerisms. I feel like we are completely on the same level, which is a real bonus. We manage to have a giggle, even when my legs are in stirrups and I feel like I have no dignity left. She is definitely my favourite consultant and I really think she understands me (probably the fact that she also has a vagina helps). I see her regularly for blood tests and scans and feel completely secure in her care.
The last chemo!!!
I HAVE DONE IT!!! I have reached the end of my treatment. I am officially on my last legs. Each chemo has hit me a little harder and this is definitely the last one I can manage. My oncologist even offers to give me 2 half doses instead of the one full dose but I decide to brave it and get it over and done with .They administer the chemo for the last time. I experience that awful taste in my throat, the cannula, for the last time, (I have had my picc line removed due to infection), the red pee for the last time also and I have never felt happier. The nurses have been amazing to me, we all exchange hugs that I have finally reached the end of my 18 week personal hell! I think it is the first time I have ever felt truly proud of myself, I have thought many times that I couldn’t go through all my chemos – in fact I think after each one I cried “I can’t do this anymore my body can’t take another dose”, but I have done it. I have done everything that was required of me to keep myself cancer free – I know for a fact then…… if the cancer does come back I REALLY am the unluckiest person ever!
End of Chemo party.
I have decided to have a party to celebrate the end of my treatment. 30 family and friends gather at Zen, we drink cocktails and eat fantastic food. I even make a little speech thanking everyone for their help during my treatment and we also use it as an opportunity to raise money for cancer research. The night is fantastic, everyone is in great form and at last I see the end in sight. That night I fall asleep with a huge smile.
Two days later.
I have just about recovered from my party, we all had very sore heads but the hangover was definitely worth it! I am just about to sit down to have my lunch on my own when my mobile rings. I answer it and am surprised to hear it is Dr McIlhenny.
“Ciara, I don’t want you to panic but I have just received your latest blood tests back, I need you to come to the hospital to see me tomorrow”.
My blood runs cold and I can feel the colour drain from my face, it is in that split second that I realise my cancer journey is not quite over yet………..
Please go to headscarvesbyciara.co.uk to view a fantastic range of headscarves, childrens headscarves, cancer turbans and hats for hairloss.
My name is Ciara Priestly, I run my own company designing and manufacturing attractive and comfortable cancer headscarves and headwear for people experiencing hair loss (headscarvesbyciara.co.uk).
I have previously featured on UTV sharing my unusual story about my battle with breast cancer and the brca1 gene.
This is my first in a series of blogs where I will take you through my experience of genetic testing, breast cancer and hopefully provide some useful hints and tips for others going through similar experiences.
Now, back to the start of my story…
I am 26, 5 months pregnant and lying on my setee, blissfully unaware of the phone call I am about to receive which will change my life.
I answer the phone to my dad, he is ranting about a genetic test he thinks I should have, it’s for something called the brca1 gene, I have never heard of it before and by the tone of his voice it’s obviously something I would rather not hear
He explains, as our family history of breast and ovarian cancer is so strong (2 cousins and an aunt suffered from it), our family has been offered testing for this gene, its increases your chance of developing breast and ovarian cancer. He also explains that if I test positive for the gene I would be able to have my breasts and my ovaries removed! Wow – lucky bloody me I think!
I put the phone down and started ranting to my partner Keith – “Is he crazy??? (sorry dad if you are reading this) Why would he think I would even consider having my breasts removed?
I am 26! I’m not about to disfigure my body on the chance that I might get cancer”. Keith looks at me but knows I have completely “gone off on one” and knows not to say anything. My head is spinning with ifs and buts, I think “ignorance is bliss” I don’t want to know, I want to bury my head in the sand. In fact, I am about to find out ignorance is not bliss, it can kill you!
I suddenly feel very scared of the uncertainty ahead…
Ok so here I am, in the Ulster hospital waiting to see my genetic consultant. I flick through the magazines in the waiting room and wonder how I even got here (Probably the fact that I could get a few hours off work had something to do with it).
I have spent the last month deliberating over this test. Should I ignore it or be brave and have it?
One thing I keep thinking about is my little boy Jakob who is 6 and the baby I’m expecting. It would be stupid to refuse the test, for their sake I am wiser to be armed with the information.
I’m called into my appointment, have a quick chat and then a simple blood test. The consultant asks how I would like to receive my results – I tell him a phone call would be fine. He tells me to try and forget about the test and enjoy the rest of my pregnancy. I silently wonder if Jeremy Beadle is about to jump out from behind his desk flashing a microphone and camera in my face, telling me he was only joking – but no, this guy is actually being serious!
I’ve had my daughter, she’s 2 weeks old, adorable, 7lb 10 and like a little monkey, covered in hair and I couldn’t be happier. I am recovering well from a section, reacquainted again with sleepless nights and constant breast feeds.
My mobile rings and it’s the hospital asking me to come into the City hospital for my results. I politely tell the lady that I have just had a baby and had requested to receive my results by phone, she refuses to give them to me, when I ask why she simply states “I cannot give you the results by phone in case you need counselling”.
By no means am I the smartest cookie but it doesn’t take a brain surgeon to work out that I have the gene.
My consultant tells me that I have the gene, I have a little cry and he tells me my options. I can opt for screening. A yearly mri scan which will start when I am 30. I will be left to my own devices until then, no check ups etc – forgotten about I think.
Great, four long years to drive myself insane worrying about every lump or bump! If I wasn’t mentally unstable before I certainly will be after this! Suddenly the prospect of having my ticking time bombs removed doesn’t seem so bad. I tell my consultant I want to be referred to speak to someone about the surgery option.
Ok, I officially have the best breast consultants (what a mouthful). Stephen Kirk, my breast consultant, a man who is straight to the point (clearly a very busy man) but one who has substantial charm and charisma. I can’t help but like him from my first appointment, which is a good job as he is about to remove my breasts.
Stephen Sinclair (the magician as I like to refer to him) – my plastic surgeon. A quiet man but not to be underestimated, this man clearly knows what he is talking about. I instantly know I am in good hands.
The MRI Scan
Not a pleasant scan if you are claustrophobic but it’s over before I know it. Results will be with my consultant before my surgery I am told but they do not expect to find anything.
I am all set, my mind has been made up and I am just waiting for my surgeon to put me on the waiting list. Out of the blue I get a call from my breast care nurse, she tells me that my consultants have been talking and they feel that I should not have the surgery!
They feel that I am too young. That I should concentrate on finishing my family, enjoy the rest of my twenties and come back in my thirties as, after all, I am not at risk of breast cancer until I hit the big three o.
I am furious! I have spent the last six months going through appointments, getting results and deliberating over the fact that someone is going to remove my breasts, now someone else has taken the decision out of my hands.
I calmly explain that to the best of my knowledge this is a personal decision, after all it is my body and my breasts. She tells me that she will have a word with my consultant. I can’t help myself but to add “if my surgeon will not perform this operation I will find someone who will”. I laugh about that comment today – it’s not like I have surgeon contacts that I can phone out of the blue and they will schedule me in for a mastectomy but hey, it felt good saying it.
They must have realised that I was serious. I called the hospital every day for nine days and basically tortured my breast care nurse until she gave me the answer that I wanted, they would agree to perform the surgery. Victory!
The Lead Up
Am I crazy? I am about to lie on an operating table and ask someone to remove my healthy breasts on the chance that I MIGHT get cancer? People’s reactions say it all, “it’s a bit drastic” is my favourite.
I question myself constantly if I am making the right choice. I have even had the pleasure of encountering a rather unpleasant gynaecologist who vigorously questioned my decision. ” You are telling me that you are going to have a mastectomy because you MIGHT get breast cancer”? I reply “yes but I have an 80% chance of developing breast cancer, the odds are stacked against me and I am not prepared to take the chance”, after a brief examination he tells me that if he were me he would “seriously reconsider the mastectomy, it will be a huge mistake” and literally closes the door in my face! I feel like fly kicking the door open and calling him every swear word that I know, but I decide to sit in my car and cry instead.
This guy is a surgeon and even he thinks that I am crazy to have this operation. I am so unsure about what I am doing but very sure about what my gut feeling is.
I have recently gave Poppy her last breast feed in preparation for my surgery. No matter how much I double guess myself I keep going back to the same thought – “I will drive myself crazy with worry if I don’t have these removed”.
I will be kicking myself if I don’t have this done and I get cancer.
The Day Before
I am admitted the day before my surgery. I have my own room, a tv, and a bathroom – luxury! I could easily mistake it for the Hilton apart from 1) the food is awful, 2) the nurses don’t carry your luggage, 3) the parking isn’t as expensive and 4) the surgical stockings you wear in the hospital are NOT the same as the one’s you would expect to wear in the Hilton.
I have settled relatively well, Keith and my dad come up to visit me and we all try to ignore the big pink elephant in the room, the reason that I am actually here. My friend joins us and we all laugh until the nurse comes into the room to tell us to keep the noise down and that visiting hours are over. We all exchange hugs and kisses and before I know it I am on my own.
“The magician” arrives to mark my breasts and ask me to sign my consent form, I make numerous jokes about waking up with amazing breasts, we both know these are nervous jokes to deflect away from the fact that I am really frightened.
The operation went smoothly… as far as I can tell; after all I was asleep at the time. I have a faint and distorted recollection of coming round in the Recovery Room and the next thing I was aware of was waking up back in the ward with my mum and Keith looking anxiously at me.
I remember feeling really out of it but not feeling any pain – thanks to the morphine drip attached, when the nurse told me she was going to put a catheter in I happily announced to anyone who would listen how much I loved catheters! Oh the shame, but mum and Keith did their best not to laugh at me.
I am surrounded by drips, lines and breast drains but I finally manage to get some sleep…
The Day After
Ok, I am a very sick girl today. Thanks to the morphine and the fact I haven’t eaten in about 36 hours. I try to eat a piece of toast whilst retching at the same time, not a good look I am sure.
The nurse tells me she is going to take me down for a shower – I try my hardest not to laugh in her face, I can hardly muster the strength to burp – I certainly am not getting a shower. She tries her best to encourage me, she actually manages to get me out of the bed but I sit on the chair beside, pull a blanket over myself and fall asleep – I think this is going to be a long recovery!
After four days of my breast being poked and prodded by the white coats I am finally declared well enough to go home. I still have one breast drain in but am told that I can return to the hospital in a few days to have it removed.
Two Weeks Later
I have spent the last two weeks recovering at home, the weather has been great, the kids are delighted I’m back and I feel so relieved that the surgery is over. I can’t believe I’ve done it, I’ve actually had my breasts removed but to be honest I am quite happy with the results. I have two neat implants with a scar through each nipple but the main thing is I now have less than 2% chance of developing breast cancer and it feels great.
Only job left to do is return to the hospital tomorrow to have my stitches removed and then I can put this all behind me.
I arrive at the hospital to have my stitches removed, I am called by my breast care nurse, she asks if I want to bring Keith with me? I laugh – he is trying to occupy Jakob whilst Poppy is sleeping in her pram, I tell her I will leave him to the babysitting duties.
We start walking down the corridor together and she says the most bizarre thing – “Ciara, do you realise that we sent your breast tissue off to pathology”?
“Er, yes” I reply, then she says something that chills me, she says it very slowly, as if I am not taking this in properly. “Do you know what that means”?
Suddenly it hits me like a truck what she is actually trying to say… “They’ve found something, haven’t they”?
“I will let your surgeon talk to you about that,” she replies. “No, tell me now, I am on my own, tell me,” I say.
She suddenly says five little words that are about to throw my life into turmoil…
“I’m sorry – You have cancer.”
Due to my own personal experience with cancer and hair loss I now have my own business designing and manufacturing beautiful headwear for people experiencing hair loss. This includes headscarves for hairloss, cancer hats and caps and also bespoke hats. Please check out headscarvesbyciara.co.uk