£3,325 raised for Breast Cancer Care to support people affected by breast cancer

On 14thOctober, I organised a Big Pink Friday event at my work (Nviro in Portsmouth) for Breast Cancer Care – the only UK-wide specialist breast cancer support charity.

bccbigpink1-alliemoonjourney-copyWe were delighted to be able to raise over £325 from our dress down, cake sale and raffle prize draw. My colleagues really got into the spirit of the day by baking cakes and paying  money to dress in pink – adorning themselves with sparkly crowns, deely boppers, wigs and cowboy hats. There was also an award for the ‘Best Dressed in Pink’ which went to our regional director with his fetching pink golf trousers, shirt and tie combo!

I know that a lot of cancer patients and survivors absolutely detest the pink season of breast cancer awareness month. Greedy companies getting on the band wagon making money out of pink branded products. Downplaying the subject and not really raising awareness. I do completely understand how these people feel about the ‘fluffy pink brigade’. However, having been through my own cancer experience, Breast Cancer Care were a massive support to me through a very distressing period of my life and I was very keen to fundraise for them and be able to give something back to this amazing charity.

Breast Cancer Care were there for me in so many ways and I cannot thank them enough. Through the many calls I made to their supportive helpline (0808 800 6000), the myriad of useful and easy to digest information booklets and their forum that enabled me to connect with, and gain support from, other cancer patients at all times of the day and night. Their Someone Like Me service put in touch with two vey kind volunteers – people who had been given a similar diagnosis and treatment plan – who let me talk through my fears and worries and who completely understood my personal concerns. I also used their Ask the Nurse service which is useful if you’d rather not speak to someone on the phone. You can email questions to their specialist nurses and quickly receive information back in writing.

As I’ve written about in a previous post, I also attended a free two-day Younger Women Together event in Bristol which is aimed specifically at women aged 20-45 who have been diagnosed with primary breast cancer. I learnt a lot from the sessions they hosted and benefited from connecting with other women of my age who had similar experiences. Because I lived more than two hours away from the venue, Breast Cancer Care also kindly covered the cost of my hotel stay for the night before the event and the following night.

I also attended their Moving Forward course as I was approaching the end of my treatment. This free four-week programme covered topics such as healthy eating, exercise, managing menopausal symptoms, lymphoedema, cancer fatigue, intimacy and relationships and adjusting and adapting after a diagnosis of breast cancer. It was also good to connect with other ladies and relate to all the side effects and issues we faced.

Back in January time, the BBC journalist, Victoria Derbyshire, was undergoing chemotherapy treatment and through her diaries she detailed her account of losing her hair. A couple of months prior to this I had signed up to be a Media Volunteer for Breast Cancer Care and was approached through them by the Daily Mirror. In support of Victoria’s diaries, they were running a piece on ladies who had lost their hair from breast cancer treatment and asked if I would be interested in sharing my own experience about losing my hair.

At this point in time I was just reaching the end of radiotherapy and my active treatment and combined with starting my Zolodex injections, I was emotionally all over the place and it was a very distressing point for me. In hindsight, I’m not sure I would have agreed to do it had I have been in a better frame of mind. I felt hesitant at first, but really wanted to be able to help other women who were going through a similar situation and also help promote the charity, so I agreed to be interviewed.

Other than my hubby and my best mate, I didn’t tell anyone about the article, after all I clearly wasn’t doing it for fame purposes and I don’t really like the photos of myself in it with little or no hair. As it turned out the Daily Mail ran the article too and a few people from work then contacted me to say that they’d read the article and congratulated me on doing it as well as passing on their well wishes. Whilst this was clearly going in a national newspaper, for some reason I didn’t really consider that people I knew might see it (yes, I know how silly that sounds now!).

Now, as I have finished my more active treatment and life has returned to ‘normal’, I use Breast Cancer Care’s services much less. I do now receive their free regular Vita magazine which I’d recommend to other breast cancer patients/survivors to subscribe to.

One in eight women will be diagnosed with breast cancer during their lifetime. Unfortunately it is a disease that has touched many of our lives in some way, whether it’s through a friend or loved one being diagnosed, or through our own personal encounter. As October is now coming to a close and breast cancer awareness month ends for another year, despite all the pink fan fare, ultimately every penny raised through events like this will help Breast Cancer Care and other charities to continue to support anyone affected by breast cancer.

Fiona West, Fundraising Officer at Breast Cancer Care, added: “We’re so grateful to Nviro for holding a Big Pink event in aid of Breast Cancer Care. With the help of supporters like Nviro we can provide care, support and information to anyone affected by breast cancer. An estimated 691,000 people in the UK are currently living with a breast cancer diagnosis so there has never been such an urgent need for our support services.”

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I was very touched by some of the kind donations I received for our raffle and would like to personally thank everyone who bought tickets and to the following supporters for their generosity and great prizes: Lucy Alderton (Cable-Talk UK), Deborah Queen (Estee Lauder), Jeff Whiley (JM2 Support Services), Kirsten Lewry (K’s Wooden Crafts), Karen Font-Garcia (Golden Light Reiki School), Jacqueline Snow (Love Snowberry), Monica Kelleway and Elanor Clarke. Also huge thanks goes to my very dear friend (who wishes to remain anonymous) for the very generous and kind donation to this charity helping us raise a whopping total of over £3,325.

It’s not too late to make a donation! Click here to donate online, or alternatively you can text  ‘BIGP95’ and the amount you wish to donate to 70070 (e.g. ‘BIGP95 £95).

Click here to find out more about Breast Cancer Care and the care, support and information they provide.

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Cancerversary

I received the letter last week for my mammogram screening appointment. The one-year anniversary, or “cancerversary”, is approaching since I was diagnosed with breast cancer last year.

April has always been quite a significant month in terms of anniversaries for my hubby and I. It was the month that we first met each other, when we got engaged, when we first moved in together and when we arrived back home from travelling around the world together. Now the month holds a much less joyful anniversary and brings back disturbing memories from a traumatic period in my life.

The 24mm sized lump in my left breast did not show up on the mammogram I had last year. This is because breast tissue is dense in younger women so I had to have an additional MRI scan in order for it to be visible. At my last oncology appointment I requested to have an MRI as I was already feeling anxious about whether I would only have a mammogram. As soon as the letter arrived, a horrible feeling arrived in the pit of my stomach and my eyes filled with tears. I immediately rang the hospital to check whether the appointment I’d received was for an MRI. The nurse said the appointment is for a mammogram and explained that they always do a mammogram first and that I was also scheduled to have an MRI too.

I’m not sure if the terror and fear of the cancer coming back will ever leave me, but I know that at that hospital appointment I’m going to be transported back to the scary place from last year. The innocent and somewhat naïve approach I took to attending that screening appointment with my dear friend. The day that unfolded into having an ultrasound, laying on that hospital bed in tears having a needle biopsy and the ensuing trauma from the worrying look on the doctor’s face who sat and told me that “we are concerned”. The day my life and the plans I had for it changed, the days of being care-free ended.

Luckily my breast care nurse happened to call me this week to see how I was getting on. I told her about the mammogram and I asked how long it would take to get the results. She said I could ring her if I hadn’t heard within 7 days and she would then follow up and get them for me.

I’ve also just started my Tamoxifen medication. I had been waiting for my oncologist to let me know whether I’d be taking Tamoxifen or an aromotese inhibitor, Letrozole. He was conferring with his colleagues as to which I should take. In the meantime I’d been doing my own research and had used Breast Cancer Care’s Ask the Nurse service. This was particularly helpful as they sent me information on results from trials that have been carried out on both drugs.

I’d come to my own conclusion that as I was pre menopausal at the end of chemo and was having ovarian suppression, that an aromotese inhibitor proved slightly more effective than Tamoxifen. At my last oncology appointment I was slightly miffed at the fact that I was seen by a locum, who had to go next door to check with my oncologist which medication I would be put on. This meant I didn’t have the opportunity to understand the reasoning behind his decision. I will speak with him again at my next appointment, but I must have faith in his knowledge and experience that it’s the right choice for me.

Life, and work in particular, continues to be challenging. I’m sure I can get past this significant anniversary and continue to look forward with the positive and strong mind set I already have and gradually put this whole experience behind me. They do say that as one door closes, another opens and I have a feeling that life has plenty more positive and rewarding opportunities in store in the coming months ahead.

Mixed emotions after finishing breast cancer treatment

I did it, I’m done, I’m through, I’m finished! I’ve not posted here for a while because I really wanted to write something positive and upbeat about finally reaching the end of my treatment (well, kind of). I know loved ones would like to hear this and are eager to help celebrate my victory over cancer….but I just don’t feel like partying.

Quite surprisingly to me I actually feel the opposite to how I think I should right now. I thought I’d be overjoyed at this point, relieved that the treatment is over – hands punching in the air, lots of high fives and feeling fantastic. Don’t get me wrong, I’m pleased I’m still here and alive, obviously, but I really hadn’t anticipated feeling this way at all.

I’m having difficulty sleeping, my head is a whirlwind of worries hurtling round my mind and I wake up feeling stressed and anxious with my heart pounding. I feel pretty flat and waves of tears just appear out of nowhere. How can there possibly be any more bloody tears left in me? There are times when I can’t stop crying, uncontrollably, and in the most inappropriate places – it’s really quite embarrassing. My fabulously supportive friends are wanting to see me, which is so lovely, but I feel overwhelmed by it all and just want to hide away from the world. And then I feel guilty for feeling this way. My poor hubby probably wonders where his wife gone.

Oh I wish had more energy, more motivation and more life in me… I so desperately wish I could go back to being the old me. But of course I can’t. I will never be the same person I was before, I need to readjust and adapt to this ‘new normal’, this brave new world. I must be patient, my body (and my mind) needs time to heal. I’ve heard from others that it takes as long as the total duration of treatment to feel fully physically and emotionally well. There is a continual and constant fear playing in the back of my mind. I wonder whether the treatment was successful, I’m frightened by every ache and pain and I worry if the big C will reappear its ugly head again in the future. I’m sure at this point anxiety is at its highest for all cancer survivors and it will undoubtedly lessen over time.

As soon as you’ve finished treatment, I think there can be an expectation to just pick up and get back to ‘normal’. I’ve been told by nurses, health professionals and other people who have been through the same experience that the way I’m feeling is perfectly normal – and is actually more the typical behaviour displayed by someone rather than the jumping for joy feeling. I’ve been in contact with others who have transitioned through the end of their treatment phase and back into ‘normal’ life again. I’ve heard how people have struggled at this point and also felt similar emotions so at least I know I’m not alone and it is common to feel this way. After months of hospital visits, surgeries, nasty chemical infusions, being nuked and poked, prodded and punctured with needles my body and mind has taken a battering. It’s hardly surprising that, as much as I’d like to, I’m not quite ready to bounce back into life as it was before.

I guess you use all of your strength and courage keeping it together to get yourself through all of the treatment and then when the finish line appears you’re left thinking ‘what the feck just happened?’ You go from feeling relatively strong, positive and ‘brave’ to this person whose confidence is on the floor, who has difficulty keeping it together at times and has these debilitating melt downs. I was recently told that your brain purposely shuts down excess feelings until you’re ready to handle them which makes good sense.

These feelings are also being magnified by the start of my Zolodex injections. Women usually approach the menopause much more naturally with their oestrogen levels dropping off at a gradual and natural rate. Mine however have been pretty much been switched off overnight, chemically, and very unnaturally so I guess the feelings/side effects are more severe. I am told that this will level out over approximately 3 months as my body gets used to the Zolodex.

I am starting back at work at the beginning of February and am dreading having one of these melt downs in the office. My employers have been absolutely fantastic and my colleagues and friends at work so supportive, I know they will look after me when I return. I’m still petrified and worried if I’ll be able to keep up with everything. Fortunately I’m doing a gradual phased return which will help me back into working life gently. I’m also worried about seeing people in my wig who I haven’t seen since I was diagnosed. It feels like going out in my wig for the first time all over again.

My treatment isn’t technically finished as I’ll continue to have my 3-weekly Herceptin injections until November as well as my monthly Zolodex injections. As my cancer was oestrogen receptor positive I will also go onto long-term medication – either Tamoxifen (for up to 10 years) or Letrozole. I’ll continue to be in contact with my oncologist and healthcare professionals for a little longer which does provide a safety net of some sort.

I’ve been having some counselling sessions at the Haven to help me process everything and provide me with some coping strategies and I’ve also started a ‘Moving Forward’ course run by Breast Cancer Care.

I have also discovered Dr Peter Harvey, a psychologist who has specialised in supporting cancer patients and he has written an in-depth article (After the Treatment Finishes – Then What?) which accurately describes and completely makes sense of the way I’m feeling.

Just when you think you’ve come to the end of one road, it feels like another has started. I’m absolutely sure things will get better and that each day that passes life will get easier as I get stronger and my body and mind have time to recover. My apologies to my darling husband, friends and family if you’re wondering why I’m miserable or withdrawn – I promise I’ll be back soon!

Image by Power of Positivity (powerofpositivity.com).

Supporting younger women with breast cancer

I recently attended a ‘Younger Women Together‘ event in Bristol run by Breast Cancer Care, a charity that provides a range of services to support those affected by breast cancer, their friends and family. The event is aimed at women aged 20-45 who have been diagnosed with primary breast cancer in the last 3 years. I’d heard about the event earlier on this year at the beginning of my diagnosis and had pencilled it in my diary for November thinking I’d like to go. After a call with the charity’s support line one day, the lady I spoke to emphasised how good the event is for younger women and urged me to go so I registered to attend.

At that time, my treatment plan consisted of radiotherapy after surgery and I thought that by November I’d be back in the swing of work and getting back on with life. Little did I know I’d just be completing my final chemotherapy session shortly before the event.

As the timing was so close to my final treatment I questioned whether attending was the right thing to do. It was a fair distance away, I knew I’d feel tired and would also be around lots of people. I’ve barely been further than about a 15 miles these last few months and I was quite nervous about driving there. This event is run all over the country in locations such as Edinburgh, Manchester, Leeds and Birmingham, but I couldn’t be sure when the next one would be that was relatively close to me. I really wanted to go and knew I’d learn a lot and was hoping to connect with other women my age who had similar experiences.

Because I live more than 2 hours away from the venue, Breast Cancer Care kindly covered the cost of my hotel stay for the night before the event and the following night. It took me nearly 2.5 hours to get there in the end after taking a couple of wrong turnings!

Breast Cancer Care helpfully posted an item on their forum which enabled the ladies who were attending to connect with each other before the event. They also organised a dinner for those of us who had travelled the night before.

I was apprehensive to say the least to be going for dinner with a group of strangers. As soon as we all joined each other on the table we began chatting away with ease about where we were in our stages of treatment and how we were all getting on. There were 9 of us on that first evening, and whilst I wished we hadn’t been meeting under such circumstances, they were all really lovely. I felt relief and comfort being amongst other women who knew exactly what I had been experiencing and feeling. We were all really tired that evening and retired early to our rooms to get some much needed rest.

I was glad to have met the group of ladies I did the night before as we’d formed an initial bond that stayed for the duration of the weekend. The following day all the remaining women arrived at the hotel – there must have been well over 50 in total. I was surprised there were so many, and began chatting to some new arrivals over the morning refreshment break. It was hard listening to others’ stories and experiences, but with our shared connection in common it was easy to open up and talk.

The event was run across 2 days and the programme consisted of various information sessions including: a medical update – management of breast cancer in younger women, healthy eating, diet myths and wellbeing sessions (laugher yoga and mindfulness). There were separate break out groups to choose from on both days covering breast surgery and reconstruction, coping with menopausal symptoms, relationships and communication, fertility after treatment, lymphoedema and intimacy and sexuality.

There were plenty of breaks throughout giving us all the opportunity to chat over a cup of tea. The event closed with a talk from a lady called Kelly who spoke of her own personal experience of breast cancer and the path that it has taken her on. It was very painful to listen to her tell her story and of how it made her feel about herself. She appeared on Gok Wan’s ‘How to Look Good Naked’ programme when she felt at her lowest and I was astounded by her courage and bravery to do such a thing – she looked absolutely stunning. She has since become a post surgery lingerie model and is a public speaker for Breast Cancer Care. Her spirit and attitude was truly inspirational and there wasn’t a single dry eye in the room after she’d finished her session. I felt uplifted and motivated by her talk and encouraged to know that there can be so much to life following a breast cancer diagnosis.

One of the ladies I met recommended joining the Younger Breast Cancer Network UK Facebook group. If you are a younger woman facing breast cancer I would definitely recommend joining – it’s a secret group so posts and comments won’t show up on your feed – you just need to send a message asking to be added to the group. There are also sub groups you can request to join such as fertility, pregnancy, research, end of life, moving on as well as 10 regional groups.

By the end of the two days I was maxed out on hearing about breast cancer. Whilst all the sessions were really useful and informative they were quite hard going and emotional at times. All the Breast Cancer Care staff were absolutely brilliant, they really couldn’t do enough for us and I would like to thank them and the charity for putting on such a great event and enabling me to attend. I would also like to thank the ladies I connected with that weekend – Kerry, Nicky, Sara, Cate, Criona, Amanda, Jo, Yvonne and Kerry – I look forward to staying in touch.

 

Chemotherapy and scalp cooling – to cap or not to cap: that is the question

My first chemotherapy cycle is due to start in a few weeks’ time and I still can’t decide whether to try the cold cap to try and prevent losing my hair.  The prospect of any woman losing her hair is certainly very frightening – another giant signpost of this dastardly disease.

I have been in touch with some lovely ladies who have tried the cap and it has been successful for them and with those who decided not to.

I had reservations before I met my oncologist as to the safety of using a cold cap as I’d heard that by using it the scalp wouldn’t be protected if the cancer cells were to spread to this area (metastasis). Metastatic breast cancer is cancer that has spread from the breast to another part of the body or has come back in another distant location.

I raised my concerns with my oncologist and he said they simply wouldn’t recommend using the cold cap if it would cause the patient any harm.  He handed me some printed information from Macmillan on scalp cooling to read. In it there is a section titled “Concerns about scalp cooling” where it says:

“Some doctors worry about using scalp cooling with treatment that aims to cure the cancer. They are concerned that cancer cells that may have spread to the scalp may be more likely to survive chemotherapy if scalp cooling is used. However, cancer spreading to the scalp is very uncommon. Clinical trials have shown that the risk of this occurring as a result of scalp cooling is very small, except in haematological cancers. Some people may prefer not to have scalp cooling because of this, but others are happy to try it.”

He put me down to try it. Whilst chatting to my breast care nurse I also voiced my concerns again, and she echoed the same sentiment of my oncologist, they wouldn’t recommend or use it if it were to put the patient at risk.

I’d also been in touch with another lady who is currently undergoing chemotherapy and who has successfully used the cold cap. Now on her fourth cycle of treatment she has kept her hair and is pleased with the result.

I really don’t want to lose my hair. I think that’s a given for any women diagnosed with cancer. I have shoulder length hair and if I have more than an inch cut off at the hairdressers I feel like I’ve been scalped. I hate to wear my hair up, I feel exposed, and it’s nice to “hide” behind if that makes sense. However for the sake of keeping my hair, that will ultimately grow back, do I take this very minuscule risk?! Of course, the cold cap doesn’t work for everyone, so I may end up losing my hair anyway.

I decided to call the breast cancer care helpline (0808 800 6000) to ask what their thoughts were. The lady explained that evidence suggests that it is safe for people with breast cancer to use and that the risk is only for people who have a haematological cancer such as leukaemia. She also pointed me to an article that ASCO (the American Society of Clinical Oncology) had recently published in which she said that this risk was understood to be the case 30 years ago, however they understand the biology of cancer far better today.

The article reads: “We understand a lot more about the biology of cancer and metastatic disease now; it turns out that the risk of metastases to the scalp is extremely low, and as a first event for advanced disease, it is even lower. Mostly, scalp metatases are seen after people have already had metastases to other places in the body, and in total, only about 1.2% of all metastases are found in the scalp.

Scalp metastasis would have to be the first site of metastatic disease to postulate that is has anything to do with scalp cooling, and that is very uncommon in the studies that are available. I’ve reviewed over 4,000 patients reported in clinical trials, and it is just exceedingly rare and doesn’t seem to be any higher in risk, from what we can tell, in patients who are using the cold cap.”

The lady on the helpline said it really was down to personal choice. I need to do what is best for me, what sits most comfortably in my mind and will give me the least amount of worry.

More choices, and more difficult decisions. I’m a natural born worrier and not the most of decisive of people let’s say! I have a few more weeks yet to decide. I’m just wondering if anyone else has been in this quandary and what helped you to decide?