I Will Survive......Breast Cancer!
A story about navigating - and stumbling across - the rocky terrain and unknown world of triple negative breast cancer… in my forties, with two young children in tow.
Tuesday 17 December 2013
Thursday 28 November 2013
And relax......
In her words 'Highly recommend listening to this http://www.youtube.com/watch?v=LuQrLsTUcN0 with a cup of tea'.
Enjoy xx
Wednesday 27 November 2013
Radiotherapy
Basically, I trundle off to Cheltenham each day for my appointment at the oncology centre - mostly around 11am - do my thing and trundle home - occasionally sneaking in shops or lunch! Luckily I've had lots of lovely people for company - friends, Mum and Wayne and I have driven myself a few times too. Either way it isn't too far and it’s an easy drive. On the first day, there was a slight hiccup - a waiting time of 3 hours (sigh), second day it was an hour and a half wait but, since then, I've been pretty much on time give or take 10 minutes. Once I'm through to the treatment room things actually move pretty fast: Strip from the waist up (so brrrr in this weather!), onto the bed and then the positioning – it’s this that takes the most time. 2-3 nurses (with freezing hands!) adjusting you to line up tiny ink tattoos on my body (which were done during a planning session 2 weeks ago) with the machine. Next the radiotherapy, which takes literally a few minutes and is painless. Then speedily dress to warm up, ha.
If anyone is interested in reading more, here is a link from the Macmillan website.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Radiotherapy/Externalradiotherapy/Externalbeam.aspx
Side effects so far.......well, I'm pretty exhausted but trying to rest in the afternoons - in between swimming lessons, rainbows, school Christmas fairs and plays! My skin where they blast is starting to get a little red and itchy - they explain it will feel like sunburn. Otherwise, as I said, I'm doing A-ok and have perked up lots over the last week - not nearly so tearful and generally feeling more myself. Slowly, slowly but long may that last too!
So, this is basically my life until 18th December......let’s hope it all continues to go smoothly.
Wednesday 20 November 2013
The road to recovery....
Unfortunately, this last dose fell on half term - grrrreat. It just makes it harder with two children at home. And hard it was. Me in bed, two kids and a frustrated husband trying to cope with a poorly, demanding 6-year old and a spritely baby. Not the most ideal environment for recovery. Joy of joys!
Whilst my sister was down, it was the calm before the storm and then… as expected, it knocked me sideways. Boohoo! Aching bones to the point where it hurt to even lie my head on the pillow - pain all through the jaw, cheeks and head. Horrendous nightmares coupled with night sweats and generally poor, fitful sleep for days. Pain all over the body, including teeth, eyeballs, spine - crippling at times and uncomfortable to even lie in bed. Not to mention the emotional tornado sweeping through me - irritable, tearful, angry and generally all over the place! This time round it literally took me to the brink of despair... I wondered if I'd ever feel normal again!
Now three weeks on, I still feel pretty battered and bruised. The stuffing has been well and truly knocked out of me - physically, mentally, emotionally (yet again I'm not in control of the tears!) and spiritually. My body basically feels like it’s been run over by a juggernaut. Muscles are still hurting at the slightest movement and I’m unable to climb stairs without becoming breathless. However, we plod on and I only have to look around at other peoples situations and feel thankful I'm still here, on the road to recovery.
One of the hardest things to cope with now is the realisation of what I've actually been through – it’s hit me hard since finishing this treatment. Mainly, I think, because they sweep you up at diagnosis time and you are then on this fast treadmill of appointment after appointment and it all feels so surreal. Now I've had time to stand still, breathe and soak up what has happened... and it feels very real, shocking and scary - thinking about actually having C and the future. And, of course, anxiety about the next step - radiotherapy. Back to fear of the unknown. Plus, I'm ready for my hair to come back now! I'm so fed up with having none and catching sight of myself in the mirror!
I also have an added worry about being symptomatic for the menopause. Well, hot flushes and mood swings, which could also be the chemotherapy - but the doctors have informed me that, due to my age, I'm bang on the line (50/50) as to whether my body will kick start into it. Jeeeez! I guess worse things could happen but please, body, if you're listening, maybe not just quite yet. I'm really not digging the night sweats that much!
Then, would you believe it (quite clearly luck is not on our side at the moment!), I spent the afternoon in A&E on Sunday with little Lilabelle after five days of fevers = a sleep pattern like a newborn = broken parents......again!! Thankfully, it’s all resolving itself now after we detected a urine infection. So, she be on the mend - Hoorah!
Naively, at the time of diagnosis you just think: ‘ok, big deal, I've been diagnosed so I'll just have the treatment and I'll be fine.’ I honestly had no idea what was in store. Chemotherapy (with two young children) has caused so much havoc in our lives – it’s made the simplest things stressful and has turned me into a completely different person, stripped of patience and day to day coping abilities. Not to mention the pressure on our marriage - arguments, misunderstandings and irrational behaviours. All because we have been so sleep deprived and blinded by the enormity of the C world. Humph! I have realised that people will never truly understand what the journey is like unless they have lived it themselves. How could they? (especially when people ask how I am, most of the time I reply 'doing ok' so as not to bore them with a list of ailments again). For that reason, I now know why, when I told my friend who has been through a similar journey about my diagnosis, she burst into tears and said: 'I just don't want anyone I know to have to go through this experience.’
So now, as I thankfully turn my back on the chemotherapy chapter of my life, I came across this quote. I have seen it several times and it has never really touched me but this time it has real meaning in my life. I feel like I'm falling apart... and it’s now time for me to focus on the rebuilding... step by step, brick by brick... which feels like it could be a long process, especially emotionally and physically. But, hey... I've got the time. Time to put plans in place, decide how to shape the future and think about what, if any, changes I want to make. Time to find my spirit again, my path in life and a balance between mother and wife whilst giving myself time to heal from this awful experience. First though, it’s on to the radiotherapy chapter, which I'm praying is nowhere near as ghastly as the trials and tribulations of chemotherapy.
Monday 18 November 2013
Breaking the silence - Friday 15th November
Sunday 27 October 2013
The next stage.......
Weirdly, it's not without mixed emotions though. There's been constant highs and lows since my diagnosis but the end of chemotherapy brings the biggest high yet. However, it seems as soon as the last dose is in sight everyone wants to speak to you about the future. Yep, THE FUTURE. The future of living with cancer. How to move forward. The chemotherapy nurse, the breast cancer care nurse, the oncologist, the radiologist and so it goes on. They've all had their say over the last couple of weeks which naturally provokes anxieties, tap tapping on my mind, pestering my peace and quiet and dampening the sense of happiness I had at the end of the chemo. It brings with it sadness as I wonder what the future has in store for me. I just want to live a normal life and pray I am able to do this by controlling the inevitable anxieties and finding the courage. Mmmmm, somehow, I need to find this balance to be able to move forward.
Meanwhile though, the PICC line has been removed. Hooray! I can now have a shower without driving Wayne mad, asking him to wrap my arm in clingfilm. The skin can feel fresh air again and I can have a bath. After all the worries about getting it inserted though, I am super glad I did. It has been a good friend, easing the pain of the toxic drugs.
Then, before I know it I'm onto the next stage of this mountain climb.....it's at this point we part hands with chemotherapy and I allow radiotherapy to take over the lead role. With that in mind, I met with the radiologist consultant last week and it's looking like 4.5 weeks of radiotherapy for me. My dreams of getting it done before Christmas could be slowly vanishing as, yet again, I hear the words......'because of your age and type of cancer, we want to give you the maximum dose'. The story of my journey! So, they are going to give me 3ish weeks grace and then start treatment at the end of November, Monday to Friday – every weekday. Bah! They assure me it's going to be an easier ride then chemotherapy so here's hoping that’s the case! It's just the logistics that are tougher. A daily trip to Cheltenham for 15 mins of treatment. Oh well, I guess I could squeeze in a little Christmas shopping at the same time, right?
Let's hope the next couple of weeks bring a smooth ride and I recover from this last dose without any traumas! So far, so good. My lovely sister, Emma, has been down all weekend to care for Lila. Wayne was given an exit ticket and has had fun out with friends (in fact he's still out!!) and Tilly is off with Granny doing.......Granny things of course! It's half term so I'm hoping to get stronger as the days go by to take part in fun Halloween and fireworks adventures but, meanwhile, I'm tucked up in bed, planning on hiding from the storm I can hear brewing outside my window! Ttfn xxxx