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).

Starting Herceptin, Zolodex and radiotherapy treatment

I can’t quite believe we’re nearly half way through December already. Here we are with just under two weeks to go until Christmas and I’ve now started the next stage of my treatment. Last Tuesday morning I had the first of my Herceptin (Trastuzumab) injections which will continue for the next year. 

As it was being administered into my thigh, I squeezed hold of Pats’ hand and whilst it did sting a little, luckily it wasn’t too painful. It was quite unlike any injection I’ve had before as it took the nurse a good few minutes to inject it. I wasn’t looking, but Pats told me the nurse was gently and slowly injecting the fluid into my leg. We then had to wait for two hours afterwards to ensure that I didn’t suffer any adverse side effects (which I didn’t).

After applying a local anaesthetic cream onto my tummy, just to the left of my belly button, I was given the second treat of the day. This was an early Christmas present from my oncologist – the Zolodex injection. I’d recently heard from other ladies that this can be a really painful injection (hence the numbing cream) so I was really quite nervous about it. The nurse suggested that I didn’t look at the needle, just as well as Pats said it was rather large! It actually implants a small pellet into the skin area. My eyes diverted to every possible location in the room other than the needle going in. To my surprise it wasn’t as painful as I anticipated!

I’d  discussed hormone treatment with my oncologist the day before and he was still undecided whether to prescribe me Tamoxifen or to use an alternative aromatise inhibitor in conjunction with Zolodex. ‘Let’s switch your ovaries off for Christmas and start the hormone treatment in the New Year,’ he said. And a merry Christmas to you too!

Goserelin, or Zolodex as it is also known, is a hormonal therapy used to treat breast cancer. It works by interfering with the way hormones are made or how they work in the body. The breast cancer I had was strongly oestrogen receptor-positive (ER positive) and therefore relies on this hormone to grow. Zolodex is used to treat women who have ER positive breast cancer who have not yet gone through the menopause. It can be used after surgery to reduce the chance of the cancer coming back (typically over a two-year period). Before menopause, almost all oestrogen is made by the ovaries – Zolodex stops the ovaries from making oestrogen.

I am slightly concerned about what effect this is going to have on me. Because the Zolodex will prevent my body from producing oestrogen it will technically put me into a medically induced menopause. Woo hoo, another lovely side effect to add to the list and cope with. Having said that I am glad that my body won’t be producing the hormone which will reduce the risk of the cancer coming back. But what will this do to me? Will I grow a beard?! Will I become moody? I do hope for my hubby’s sake that neither of these are the case.

After a quick lunch break we returned for the third and triple whammy appointment of the day, my first radiotherapy treatment. There was a delay with the machine so we had a bit of a wait. After an initial meeting to discuss the treatment, side effects and do’s and don’ts, I was given a rather lovely gown to change into that I will keep for the duration of my treatment. We then sat in a smaller sub waiting room until I was called in.

clinacI walked into the room and was greeted by two nurses and could see a very large ‘Clinac’ machine. As I laid out on the bed, the nurses drew on me, lined me up with the machinery and were calling out various numbers around me. There was music playing along in the background. Although whilst this initial part was happening, a particularly dramatic and apocalyptic piece was playing which made it all feel rather intense. Luckily the nurse asked to skip on the song as it was supposed to be festive Christmas music!

I lay there looking up at the ceiling above me which was emblazoned with an image of bright blue sky and the branches of a tree sprinkled with white spring blossom, whilst Christmas songs were playing over the speaker – a very strange and surreal experience indeed.

The team explained what would happen and that they would leave the room whilst the treatment was in progress, but that I would be monitored on a camera at all times. If I needed to alert them at all I just needed to raise my arm. I laid there very still, thinking back to what the nurse had said earlier about trying to relax and to breathe as normally as possible. Quite difficult when you’re laying in a position trying not to make any movements at all!

As I write this now I have completed five radiotherapy treatments so far. I’m pleased to say that it’s not painful at all, but I am very aware of a feeling or sensation of something ‘happening’ in that area. I can’t really explain it, more like a tightness, or almost going back to a period post surgery where I was very aware of that area/my scar. I have definitely started to feel more tired, but they did say this was to be expected, especially following chemotherapy treatment.

I received some recommendations of products to use on the skin from other ladies who have had radiotherapy, so I have an arsenal of creams and gels at my disposal.

Have you had any of these treatments described in this post? Have you suffered any side effects? If so, do you have any tips you can share to help  deal with these?

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.