Breast cancer awareness month: The light at the end of the tunnel

Author: Deb

In October 2013, I discovered a lump in my right breast. I was only 42 years old at the time. It was at the same time as the cancer storyline involving Carol from Eastenders. Unlike Carol, who seemed troubled and nervous when she attended her doctor for an examination, I never really gave it too much thought. I didn’t tell anyone about it except my husband. I was referred to the breast clinic at my local hospital and went along myself for the mammogram, ultrasound scan and biopsy. After having these done, I spoke to a doctor who said the lump was probably nothing to worry about, it was one of those things that women my age got. I was to return to the hospital a week later for the results. My husband came along with me but was asking why I needed to go for results, could they not just post them out to me? Whilst in the waiting room, I was playing games on my phone and showing my husband some funnies on it. I really wasn’t concerned at all. My name was called and I went into the consulting room alone expecting to be told all was fine. However, when I sat down, the surgeon asked if anyone had accompanied me to the hospital that day. She sent the breast care nurse to fetch my husband. When he came into the room I said I really didn’t like the sound of this. The surgeon had examined me and asked me to sit up on the bed and face her. I thought she was carrying out a visual examination of some sort. That’s when she dropped the bombshell and told me I had breast cancer. I remember bursting into tears and looking at my husband desperate for a cuddle. My right foot was shaking uncontrollably and he looked as if he was going to pass out. I just broke down. The surgeon said the good news about this was that they could cut it out. The nurses offered my husband a glass of water and I told them to take him away and give him a seat before he keeled over.

When I eventually gathered myself together, the surgeon asked me if I wanted to wait until after Christmas and New Year for the surgery so I could have my celebrations without pain and discomfort. I just thought well there’s no time like the present. Surgery was scheduled for the 18th December and I was to have a lumpectomy. I only told my mum and not my sister as I didn’t want to ruin her Christmas or have her associate Christmas with cancer. My dad was in a nursing home with MS and I kept it from him as I didn’t want to affect his health and I don’t know if he could really have taken it in at that stage in his illness. I remember going to my mum’s house to tell her with my husband and I was strangely calm. People told me later that they didn’t think it had sunk in properly. I had the lumpectomy on 18 December but had to have x-rays and some other procedure where they inject dye into the breast to identify the sentinel lymph nodes which would also be removed. After surgery, I felt stoned and happy and phoned my mum from hospital to tell her I was out of surgery and feeling fine, looking forward to getting home. We talked about it and said at least that was it all done and dusted now. I remember listening to the radio in the run up to Christmas when I went to the hospital to have the dressing changed. The words “it’s Christmas time, there’s no need to be afraid” stuck in my head. I took this as a good sign. I had asked the surgeon for the results and she said they weren’t back yet. Looking back I think she didn’t want to ruin my Christmas as she probably knew already.

In early January 2014, I returned to the hospital and was told that the breast would have to be removed along with the rest of the lymph nodes. I had expected this and had told the surgeon I was happy for it to be removed when they were going to do the lumpectomy. More surgery was scheduled for 29 January 2014. During this surgery, I had an expander fitted with a port. The pictures had shown the port as something unobtrusive which would sit at my side under my arm. However, the reality was that the port was a metal thing which would sit below where my breast had been and would dig into my ribs causing me severe discomfort for many months. This expander would be filled with water each time I attended the plastic surgeon so the skin could be stretched to accommodate an implant later. This was done by the plastic surgeon inserting a needle into the port through my skin. This was really sore and I dreaded these appointments so much. It was only months later that I discovered something called Emla cream. This numbs the area and would have made it so much more bearable. I’m really angry that I wasn’t saved this pain and discomfort and I recommend it to any woman going through similar treatment.

After the surgery, I was told that lots of lymph nodes had been removed and there was no further trace in any of them. Apparently, there had been a slight trace in two of the nodes that were removed during the lumpectomy. The next discussions were around chemotherapy and radiotherapy and all those effects.

My sister had been told by this point and said she saw the chemo as something zapping away any crap stuff that may be left. Fortunately I had met a girl on the ward during the second op and she had been diagnosed also and we decided we were going to be chemo buddies. We scheduled our chemo for the same days and roughly the same time so we could catch up with each other. As treatment progresses, it takes a lot out of you and your emotions can really tumble. About halfway through treatment, we lost contact a bit as we were both finding it difficult to cope. We’re now back in regular contact and good friends who meet up for lunch and a blether. It was important to me to surround myself with more positive people at this time which meant spending time with my mum, sister and my oldest friends. It’s amazing how my friends were with me. They would come across and visit and bring lunch for us all and make me tea as well. 

I finished chemo in June last year and radiotherapy in August of the same year. I attended my local hospital for the chemo and another hospital in Glasgow for the radiotherapy. I was so tired as my sleep was all over the place and I remember thinking that I just wasn’t going to be able to make it into Glasgow for the radiotherapy as I was so exhausted. It was so tiring travelling in the car. The nurses at the hospital were fantastic though and really helped me through it. There was also an amazing MacMillan nurse that helped me through that time. My mum was my rock throughout the whole thing. She would pick me up for all my hospital appointments and would be cheery with me which helped so much. The first day I went into the hospital, I just broke down because the word ‘cancer’ was plastered over the entrance and all throughout the entrance lobby. It really brought it home to me and all I could think was how the hell had this happened to me and that I didn’t belong in a place that treated people with cancer as that wasn’t me. The staff at the hospital were great and kept telling me that I would see me returning to my old self a wee bit at a time and they were right. I remember an advert on TV at the time for one of the cancer charities and that showed a lady putting her hair into a ponytail before going for a run. I remember thinking that I couldn’t wait for that to be me. 

Today I was able to go for a run in a local park with my dog and it was fabulous. I’ve also started college this year and I’m studying Counselling. I want to use this to help others who have gone through what I have.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts

Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:

Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.

Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.

Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.

The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments

Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.


* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

 

Breast cancer awareness month: My breast cancer year - the good, the bad and the ugly.

Author: Danielle

October 2014 - October 2015

I went into the very first day of October 2014 to an emergency appointment with my GP having found a lump in the shower the previous day. I was lucky in so many ways. I was lucky to get an appointment with my actual GP who knows me and I was lucky that she considered my symptoms before she considered my age (31). I'd found my lump as I said the day before lathered up in the shower. It's how I normally check them as I find it easier. That morning as I got dressed and ready to go to my appointment I realised I also had an indented line that ran from under my boob right around the side and to the exact spot my lump was. 

I was sent away with an urgent referral to the breast clinic just 12 days later. At the appointment I was given an ultrasound and they took 3 core biopsies. On 22nd October I was diagnosed with Grade 3 triple negative breast cancer. It was very aggressive but it was caught early and highly treatable. A week later I was given an MRI and CT. My smiles hid my fears. I thought I was going to die.

On 7th December I cut my hair off to donate to the Little Princess Trust. At this point I knew chemo was a must on my to do list. I had my close family and friends around and we made a day of it with wine and cake. My daughter, who had struggled with the thought of me losing my hair helped cut a few of the lengths which really helped her prepare, and everyone had a go at chopping it off.

The following day I had a wide local excision, and unbeknownst to me a full axillary node clearance while under. Although my MRI and CT had shown that my nodes were clear it had in fact spread to 3 of my nodes and I had micromets in 1 other. Bugger! I've never had major surgery before. Carrying 2 children and giving birth was the toughest thing my body had gone through by that point, but my goodness I didn't realise how tough it would be. I'd lost all sensation in my armpit and the top of my arm, I had to carry around a bottle of my own body fluids for a week.

I was so sore, tired and emotional. I hadn't prepared for it at all. Then I started to sound like a hot water bottle. I had seromas. They were agony. One in my armpit and one in my boob. Just after Christmas the one in my boob sprung a leak. So I was taken to hospital, redressed, and the one in my armpit was drained. About a week later my boob popped again in spectacular fashion, all over me, my poor son and my hall carpet. I held myself over the sink and I could see the hole in my boob so I supported it with my hand. What I hadn't realised was my boob had taken in air and upon supporting it the air pushed out and my boob farted!!!!! I laughed until the tears came. Around the same time the cording started in my arm, this is where the axillary vessels that once connected to the nodes under your arm in effect die off. They harden and become very stiff. I couldn't move my arm without being in extreme amounts of pain. Gentle exercise eased it but it's only taken until recently to get a decent amount of pain-free movement in my arm.

On 9th January I had another surgery to fit my portacath, this was to become my best chemo tool. Consider it an artificial vein - it sits in my chest and the line goes up into my neck and down into the artery that feeds my heart. Sometimes when I lean forward I can feel the line tickling my heart. It took the chemo directly into my body and saved my veins from being destroyed by the evil stuff. 

On 14th January I had my very first chemo of FEC-T combination. 3-weekly FEC followed by 3-weekly tax. My final chemo was on 29th April. It's all a bit hazy now. I think I went through the whole thing in a daze.

Chemo comes with a list of side effects as long as your arm. I hope this picture illustrates just some of those side effects (I realise some of these are doubles and aren't all specifically Chemo related but they are all cancer related)

It's tough but it's doable. I couldn't taste a thing from around 4 days after my first chemo right through till about 3 weeks after my last, although my appetite was insatiable. Couple that with the steroids and I ballooned. I had some weird side effects like losing all the skin under my arms after my first Tax. We discovered that I'm intolerant to GCSF- an injection that you give yourself in the tummy to boost your white blood cell count. Luckily my counts did really well until my very final chemo when I became neutropenic and spent a couple of days in hospital on IV antibiotics until my levels started to rise again. The result of this though was a pretty nasty case of thrush in my gut but after about a week all was well again. Most were all pretty standard rubbish effects. It's exhausting and the effects of it are still very present in day to day life. My Achilles tendons are still sore. I get worn out really quickly. My nails are still falling off in bits and pieces and I still have numb fingers.

My radiation therapy started on 9th June for 19 sessions. 15 local therapies including my clavicle and 4 targeted therapies at the tumour site. Radiotherapy is a walk in the park compared to chemo. It's very tiring and unfortunately I suffered with horrible burns which I had to dress for about 3 weeks after I'd finished.

My active treatment finished on 29th June. I'd developed rib pain and some symptoms in my bad boob before radiotherapy started so I had to undergo a bone scan during radiotherapy. They inject radioactive dye and this should flash up cancer in your bones. They also wanted to take a biopsy of my boob as an ultrasound scan had shown thickening in my breast but it was deemed to risky to do during radiotherapy as rads can (and did) break the skin down which can cause infections and delay treatment. It was at the appointment on 3rd July for my biopsy that I was told my bone scan was clear and the pain was likely surgery related. Big bloomin' phew! About a week later when I was back at the radiotherapy department to get my burns seen to, I bumped into my oncologist who had just signed off my biopsy results. With a big beaming smile he told me it had also come back clear, I do however have lymphedema in my breast but I'll take that over a relapse any day. I'm free of cancer, and I hope with every fibre of my being it stays that way.

It hasn't all been bad. I've met some amazing like minded women along the way. I was honoured to be able to take part in the launch of a new charity "breast cancer now" and their the last one advert which launched in June.
And I was able to record a couple of brief bio's to help the campaign. (Here and here)

It was an amazing experience and as I write this there may be more of my face to be found on their website and Facebook page for breast cancer awareness month. I also got to have a special day thanks to the Willow Foundation, an amazing charity for 16-40 year olds with life threatening illnesses. It was amazing. I ate amazing food at Tom Kerridge's The Hand and Flowers with an overnight stay at the Complete Angler. I'll never forget it.

It's been a rollercoaster year. It's been hard on everyone, not just me. My family have been an amazing pillar of support and my children have got me out of bed in the morning. I fought for all of them. We embrace every day. We don't put anything off now. We take lots of photographs and we make lots of memories. I can't be certain what the future holds but for now I'm just happy to be moving forward. To try to rediscover some old parts of me and make the best I can out of what has happened xx

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:
Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.
Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.
Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.
The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments
Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Storm in a teacup: The end? Haha yeah right

Author: Danielle

 

So the end of my active treatment officially finished on 29th June, that was my last radiotherapy treatment. I went on my own. In hindsight not such a good idea! I cried big fat blobby tears on the table and I continued to cry the whole drive home. I still don't know what started the onslaught of emotion, was I upset? Was I happy? Was I relieved? I've no idea. The cancer "endurance test" as one of my YBCN sisters so eloquently put it, sucks you up, spins you around, chews you up & then spits you straight back out again. And then you are left bereft, I think that's the right word, I think what I felt laying there having my last fraction of radiotherapy was complete and utter shock!!!!! What the hell just happened?.

The end of treatment isn't the end of the story though...I so wish it were. I wish as soon as that last little bit is done you can just go back to whatever it was you were blissfully doing before.......oh how I wish it was exactly how people who haven't had to endure cancer treatment themselves or who haven't watched a loved one suffer the effects think it is. That the last day of active treatment is the end, book closed, case solved, finished, done!............ hummmm!

My celebrations were delayed due to the fact that I was awaiting a biopsy of bad boob which couldn't be done until radiotherapy was complete. Before rads had started my bad boob started to change. It became red, hot, felt weird & had taken on an orange peel look. I was scanned midway thro radio and the area was thickened but no obvious lumps showed on ultrasound, they wanted to do a biopsy but as I have triple negative breast cancer radio was the last weapon in my armoury. So it was decided to wait until rads had finished so as not to risk any delays due to infections or breaking down of the biopsy site. So a few days after I had it done. Also before rads had started I was suffering really badly with pain in one of my ribs, painkillers weren't shifting it but the ribs are sensitive creatures as they are constantly on the move so it was understandable but never the less a worry. I'm sure every woman who gets a referral to breast clinic thinks a primary breast cancer diagnosis could be the worst thing that could happen to them, I did, and it isn't a barrel of laughs let me tell you. But you get the diagnosis and you don't fall apart, you carry on through treatment but you come to a realisation that a secondary breast cancer diagnosis is the worst thing that could happen to you! Bones, liver, lungs or brain are the 4 most common places for any possible rouge BC cells to roam around and decide to set up camp. Secondary doesn't mean it's not as bad or its second to primary. Secondary breast cancer kills! It is incurable, it has killed beautiful, vibrant young women and mothers that I have had the pleasure to talk to and get to know online. It's the diagnosis that anyone with breast cancer doesn't want to get. So the boob biopsy was a drop in the ocean at worst a possible local recurrence, I'd just have to do the endurance test all over again and hope that the chemo while not wholly effective was effective enough not to let any hikers make camp. The bone scan was a whole other pile of crap - at worst secondary breast cancer, metastasis to my bones..........thankfully the boob is lymphedema and the rib is surgical pain..........phew!!! I'm over the bloody moon. I literally can't put into words how happy this makes me. I feel like I can mentally and physically begin to readjust, recoup and rebuild.

I know I sound ungrateful. Believe me I couldn't be happier that I no longer have to endure the medicines and treatments that make me feel so god damn awful. I was happy to have finished treatment but call me superstitious I don't care I wasn't about to go shouting from the rooftops that I'm cured, that I've beaten it and won because in all honesty I'm on a precipice right now treatment is done all I can hope is that it was successful but until years start to pass I can't believe that it has gone, because if I do and it comes back................. well................I just can't think about it. So for now be happy that I'm no longer being made to feel like shite. Please don't tell me well done on beating cancer because the little superstitious person in me cowers at these words. Just inwardly know that this stage is complete but continue to support me and ask how I'm doing. Don't expect me to bound around saying I'm cured, I won't, I can't. But I am happy that I've finished treatment I'm ecstatic in fact and I hope beyond all hope that I never have to have any of it ever again. Please don't mistake my caution for sadness or grief or depression. I don't expect you to understand I just ask for compassion.

Every day I can feel a little bit of me coming back. Every week I loose a little more chemo bloat. Every few days I set to task at getting another part of my house back in order. I'm wearing mascara again, I missed being able to just slap on a little bit of mascara, it's the little things. My brows are growing. I have to consider hair removal for the rest of my body for the first time since January. I no longer wear my wig, there are a few reasons. Firstly it's been bloody roasting and that is not conducive to a comfortable wig wearing environment. Secondly it rubs on my new baby hair and gives me bald spots. Thirdly and most importantly I feel well enough to not care what people think about my baldy bits. My rads burns are finally on the turn around 3 weeks after finishing and look like they are beginning to heal. Yes guys and girls radiotherapy takes 2-3 weeks to become inactive so although we were done, we weren't done done! A little bit at a time.......bit by bit........I'm tired, I ache, bits of me hurt, I don't feel the same as I used to but I feel better than I did last week and I feel twice as well as I felt the week before. I may never be rid of the tingling in my fingers and toes. I may never get the full use of my arm back, I almost definitely won't get the sensation back in the top of my arm but I don't feel unwell!!!

Unbelievably people have challenged me on how I've felt over the course of my treatment and compared me to people they may know who have seemingly "coped" with it all better than I have. To those people I say this; there are no Olympic cancer treatment games, there are no gold medals for coming out on top. Everyone's treatments are different and everyone reacts differently to those treatments. No one is the same. No one is battling against each other and if they knew you were comparing me to them they would be devastated that you were doing such a thing. There will be people out there who may also use me as an example of someone who has coped through all of this, please don't, just support them, it is not conducive to their well being or recovery to hear that someone else sailed through chemo or had no side effects to radiation treatment. The people who are closest to me, my husband, my parents, my eldest brother, my children, my cousin and my 2 closest friends have seen me at my lowest lows, they've looked after me when I couldn't, they've taken me to appointments, they've looked after my children, I couldn't have done it without them. They have had to be the brave ones to watch me at time suffer and know there is nothing they could do to help me. But they have helped me in so many other ways. They've also seen my at my highs they've laughed and cried with me. They are the only people who can make a judgement on how well I have coped. Because the reality of it is for everyone else it's just been easier for me to say I'm doing ok. It's tiring enough enduring the effects of treatment without having to relive it to everyone who asks, I'm sorry. I would love to give you a blow by blow account but the reality of it is the people who seemingly "cope" through it all are just shielding you from how utterly awful it is. So chemo might only slow one person slightly or it might completely wipe someone else of their white blood cell & neutrophils count each round that they end up hospitalised on IV antibiotics because any form of infection could make them so poorly they could die. Nobody knows how it will effect each individual so do not compare. I can almost categorically say that anyone who has gone through treatment will live with the fear, the fear that one day your cancer will come back and worst still it will be terminal, how people cope with that is also different but no one should judge. It's not a competition.

Someone on the YBCN said just this morning that they were fed up of people saying how brave they are when she doesn't feel brave at all and actually it just makes her feel like she should be. Put yourself in a situation, on top of a cliff, in a pit of snakes, in shark infested waters, covered in spiders and someone tells you, you can do this you are brave! So it's fight or flight you either submerge yourself in your biggest fear with a smile on your face or you run away kicking and screaming. Or consider facing your biggest phobia with someone holding your hand, someone saying we can do it together, I'll help you, I'll support you and I'll fight along side you. Which would you rather?

So for now my treatment is finished. I'm getting better it's slow don't expect miracles, but know I want me back on my feet as much as you do. I will have to live with the fear. Sometimes I may want to talk about my fears and that's ok, it doesn't mean I'm giving up it just means it's got so much it's spilling over and I don't want to drown in it. I won't be who I was before it would be silly to presume I will be. But I'll keep going till I get near as damn it and actually I'd like to think I'll be a better version of the old me x x