You've had the operation, you've got through the treatment and hopefully your Consultant gives you the all-clear. But what now? You may be free of Cancer but will you ever be Cancer free?
Fatigue – Ok, I was never an athlete before, but the battle with tiredness is real. Nearly two years after finishing my treatment I can honestly say that I don’t have the energy I used to have. Maybe it’s partly due to getting older, but I’ve certainly noticed a difference. I just need to get my brain to accept it. They warn you about it during chemotherapy but even then, after 6 cycles, I still wasn’t prepared for the total wipe out it caused. Now, mornings are a nightmare. I sleep through alarms, I press snooze and can not function until after my second cup of coffee. Once I’m back in the land of the living I’m ok, but I never get through my to do list. Anyone that knows me will know I’m a night owl and can happily work until late, but whereas I could fight sleep, there now comes a point where I just can not keep my eyes open. I’ve fallen asleep fully clothed many times or with a lap top on my knee. I’m still hopeful it will improve and I know exercise is meant to help but when you’re just so bloody tired all the time it’s a vicious circle.
Chemo Brain – Ok, so it’s not as bad as it was during the actual chemo but it’s still there at times. During chemo, your mind is in a fog but it doesn’t end there. Many women report experiencing it years after treatment has ended. Lack of concentration is one factor. Ever tried to read a book and read the same line over and over again because its just not registering? I get that regularly. Show me a large document and I’ll hate you. Short term memory can also be an issue. I’ve even been accused of being uninterested and uncaring – harsh – I know – simply because I’ve forgotten what day somebody is doing something or where. It’s not that I don’t care – it just goes out of my head – I’ll often have some memory of somebody telling me they’re going somewhere but date and where is vague. Sorry. I keep a diary to try and remind me of things - which seems to help.
Mental Health –Firstly - You’ve faced your own mortality. Ok, we all know it’s gonna happen one day but when you get that diagnosis, a million things go through your mind. Your initial reaction is most likely to think the worst and the time in which you are waiting for results is awful. You reflect on life, was I happy? Would I do anything differently? You survive cancer, it’s like you’ve been given a second chance. You want to do all the things you’ve never done, change your life – those closest to you may or may not understand that, either way, it changes your life, from small things such as noticing the colours of the leaves changing (things you took for granted) to major decisions such as quitting your job and following a dream
Secondly, the realisation that you’ve had cancer will never leave you. Sure, you have to get on with life but not a day will go by when you don’t think about it. Anything can trigger it off, a memory, a conversation. I know it sounds cliché but everyday is a blessing. It’s hard to get your head round sometimes. The hospital deal with the medical side of it - get rid of it patch them up and off they go, but they don’t deal with the phycological side of it. Should we expect them to? In an ideal world it would be nice and I think some hospitals do refer for counselling but mine didn’t. Thankfully in Nottingham we have the Maggie's Centre where I would strongly advise anyone with cancer to visit. They offer free support with classes, counselling and activities. I would have been lost without them. I admit, I still struggle today – even two years on, anxiety, depression and fear are still very real. It's hard to explain to someone who hasn’t been through it, but it brings me on to my next point.
The fear of it coming back – This has to be the worst thing. Every ache, every pain, every time I'm tired – I instantly worry that it’s back. This is another thing that is on your mind daily. Going back to Maggie’s. The founder Maggie Kewsick Jencks said ‘Do not lose the joy of living in the fear of dying’, and that is so so important to remember, but also so hard.
Your outlook on life – This completely changed for me. The ‘life is too short’ motto definitely applies. Of course life will still throw you a curve-ball now and then but you definitely work harder to follow your dreams. I could use cliché after cliché - but you do only get one shot at this life – make it count – and yes – don’t save things for best – wear the perfume, buy the shoes…..
Medication – For 5 years at least I have to take Tamoxifen daily, there is talk of it being 10 years. I don’t care as long as it keeps the cancer away. My cancer was hormone receptive. Tamoxifen is the oldest and most-prescribed selective estrogen receptor modulator (SERM). Women and men diagnosed with hormone-receptor-positive, early-stage breast cancer after surgery (or possibly chemotherapy and radiation) are given Tamoxifen to reduce the risk of the cancer coming back. There are however several side effects listed - increased tumor or bone pain, hot flushes, nausea, fatigue, mood swings, depression. headache, hair thinning, constipation, dry skin...the list goes on...
Hot flushes or night sweats from taking tamoxifen are real and can be worrying. But a 2008 British study suggests that women who experienced hot flashes and night sweats while taking hormonal therapy medicine were less likely to have the breast cancer come back. Knowing that this side effect might indicate a reduced risk of the cancer coming back may help some people stick with treatment despite the side effects. I believe it has also caused weight gain, along with the attitude that I won't sit on my death bed regretting having a pudding
Some women on tamoxifen have reported memory problems while taking the medicine. While no definitive results are available yet, the ongoing Co-STAR (Cognition in the Study of Tamoxifen and Raloxifene) trial is looking at the effects tamoxifen has on memory and thinking.
I am also on an anti-depressant due to the anxiety caused by the illness and low mood caused by the illness.
Clothes – Having breast cancer will usually mean that you will have an operation. There may be options to have the lump removed, the whole breast removed or both removed. Some women don’t want reconstruction but there are options to rebuild with your own fat/tissue or have the breast tissue replaced with silicone.
I personally went with silicone. I felt I was too young to be left with an indentation from the removal of a lump or be lopsided. I’d always had small boobs anyway so I made my decision to have a full mastectomy and reconstruction based on a lot of different factors, both cosmetic and preventative, and If there is any silver lining to cancer, my ‘Cram as much in as your can’ instructions to my consultant were followed and the result was larger breasts. Now the difference between a normal boob job and a reconstruction following a mastectomy are not generally known. The difference with a mastectomy is that the silicone is put under the chest muscle as opposed to on top. The result is really firm breasts, and as one nurse said to me – you don’t actually need to wear a bra for support. They don’t sag and won’t. Sometimes I will go braless - depends on the outfit – always check if it’s see through. That’s the plus side - the down side is that a lot of pretty under wear is underwired. You can’t wear this at first because of the operation, and it can actually be quite painful. A lot of bras offer support you don’t need and try to lift and pull your cleavage – well, your new babies aren’t going anywhere. I recently spoke to Theo Paphitis, owner of lingerie business, Boux Avenue, their staff are the only ones who are City & Guilds accredited, so definitely worth a visit.
It's everywhere - You become more conscious of the disease - suddenly it's everywhere, celebrities die from it, it's a storyline in a film or a soap, it's in the news or there's an advert on the telly. Maybe it was there before, maybe it's always been there, but suddenly you're more aware of it and unfortunately it's always the bad news stories that stick.
But at the end of the day, I'm here, and I've been taught another of life's valuable lessons. I don't have cancer, I survived but I have to accept that it will always be part of my life.
Love Txx