The Facts and the Plan

4 minute read time.

Well, here I am.  Sitting in my kitchen with a cup of tea.  It’s cold, grey and misty outside which is a strangely comforting reflection of my mood.  I’m peering through the haze, trying to make sense of the vaguely deformed shapes looming out there.  Like trying to make sense of the shadowy grey thoughts flitting through my mind.  

I’ve decided I’m going to get some of the noise in my head down on paper.  There is so much of it that it feels like birds trying to get out, fluttering and flapping against my skull.

Let’s start with the facts:

I’m S, a 38 year old woman.  I have a full time, very busy and fairly stressful job.  I have a 3 year old son (Q).  I am single and share custody with Q’s daddy (C).  We have a dog who we also share custody of (P).  Things haven’t been great over the last couple of years….but, just over a month ago, being a single mum juggling a career has suddenly taken a stage exit out of the production of S’s Stupid Sideshow.  CANCER is now the glamorous lead role.

The train has been diverted…sorry folks.

Grade III IDC ER+ve HER-2 +ve with axillary node involvement.

Treatment plan is:

Chemotherapy - 4 cycles of EC90 followed by 12 cycles of paclitaxel plus trastuzumab and pertuzumab.

Zoladex ovarian suppression during chemotherapy.

Likely mastectomy and axillary surgery with reconstruction.

Radiotherapy.

Tamoxifn for 10 years and ovarian suppression for minimum of 2 years with concurrent biphosphonates over 3 years.

Phew…..sounds a lot.  And, also, sounds like it’s happening to someone else.  Poor them.

I’m now staring at the screen.  I thought writing it down would make it feel more real but it hasn’t.

Maybe because I am one of the lucky ones who hasn’t been run over by side effects?  I still feel like “me”.  Still the same constant bl**dy chatter and shadowy, grey, sinister thoughts in my head - worse now as I’m not at work so too much time to dwell on things.

I had my first session of chemo on December 1st.  I had shingles and low blood count and there was some question as to whether to go ahead but in the end it did.  I did the cold cap which wasn’t too bad.  First 15 minutes was chilly but then your head just goes numb - I had it on for 4 hours so if I can do it, pretty much anyone can as I’m a bit of a wimp with cold.

Next session is December 22nd.

Anyway, all that’s pretty boring.  I feel I should try and find something positive in all this.  Maybe if I can find something, it won’t be a bad thing that’s happened to me.  And if I find something, maybe I can help someone else in the process…  

Lots of things have been running through my head but I think it is important to be realistic about what is actually achievable.

So far this is my plan:

Embrace yoga, meditation and a more accepting way of life (MIND)

Progress to date: 

  • attend a yoga class every Wednesday morning.  Going well!
  • mindful meditation once a day (I had started practising mindfulness before).  Going fairly well and most days I manage to meditate.  I do think this helps me so must keep at it.
  • reading about buddhism (I’m not religious in the slightest).  Read 3/4 of the book but haven’t picked it up for a few days now.  Lost interest?  Will keep trying…
  • failing dismally at being more accepting

Keep fit and healthy (BODY)

Progress to date:

  • wake up at 7am latest every day…hmmmm…need to work on this
  • go for a minimum 15 minute jog or 30 minute walk every day…errr…had some ups and downs here too
  • eat healthy meals…tricky one for me as I’m no Domestic Goddess but I have now discovered the joys of “Gousto”.  Amazing.  Have never cooked so much in my life and I would recommend it to anyone like me who finds cooking a struggle.
  • drink at least 2 litres of water a day.  This is really hard.  Am currently trying one of those fruit infusion water bottles which has helped a bit but I am still not hitting the 2 litre target.

Try and do something I’ve never had time to do before.  Who knows, might even find a new career that inspires me?!? (SPIRIT)

Progress to date:

  • am an amazing artist….in my head.  Done a bit of colouring in with some oil pastels.  Shameful really…..
  • creating my dream garden.  Raked a few leaves and insulated the garden tap.  Forked 1/5 of a garden bed and cut back some dead vegetation.  Hmmm….this isn’t going well.
  • try some baking a la GBBO….well, I’ve thought about it but that’s as far as it’s gone.

Ok, so spirit needs the most work it seems.  And I suspect the flapping wings in my head are a symptom of the neglect in this area.

I wish I had a nice distraction…

Anonymous
  • FormerMember
    FormerMember

    Hello Quietrose

    Pretty full schedule you have going on there ma dear. Let me introduce myself, I'm Doddsy and I was only diagnosed on the 29th December and so I don't know exactly what kind of joys I will have to look forward to. Probably lumpectomy followed by radiotherapy, followed by tamoxifen but "my book is unfolding" so I'm told. I have some experience of Buddhism and that's a good way to go. It helps you form a philosophy of sorts. The philosophy is actually common to most religions including Christianity. There is another book called F##K It therapy. Personally I like it. I suggest you read it. Firstly, no one is going to cope well with what's been thrown at you. It's pretty crap! However, having read what you wrote, I think you yourself are your biggest asset. Girl you have mojo going on! This disease is gonna have to run pretty hard to catch up with you!

    Take one step at a time. You have to go through all this crap because in a way the treatment has to be as "bad ass" as the disease. I think that's one of the many reasons people fear breast cancer - the treatment is going to take over your life for at least a few months and it's pretty hard by itself. And even I think we will come out traumatized. Changed. Finding it hard to let the fear go. A few months. Then, as one of the ladies on here put it "life will find you again". Be practical. Put in the safety nets. Call on others to help. Make sure you're confident your wee one is cared for while you take care of yourself. Your a mum so I know this isn't easy but - put yourself first just now. Make room to have a wail. This is bloody unfair and you know it!! Find a place, stop screaming in your head and just scream. When you're done, pick yourself up and take a step, then another and another. Eventually you will find you step out the other side and believe me your spirit is so big life WILL find you again. Good luck Quietrose. Keep in touch x

  • FormerMember
    FormerMember

    Hi Doddsy, thank you for your comments and very grounded and wise advice.  I will definitely find that book you suggested...sounds just up my street, haha!  Will keep in touch - when do you next find out some answers as to what's in store for you? Good luck x

  • FormerMember
    FormerMember

    Hello Quietrose

    I get my lumpectomy next Thursday. The plan (at the moment) is lumpectomy, radiotherapy and tamoxifen for up to ten years. Never looked forward to a hospital procedure before, but I'm looking forward to getting this little Bugger out. I haven't been diagnosed for long so I'm still getting my head round things. It's not easy is it? The worst thing I find is telling people. The sad look on their faces, the worry, it really pisses me off lol. I want to shake them and say "don't feel sorry for me because I don't need it, I need practical help, advice, laughter and normality" I'm in the real world and I refuse to make that world all about my illness. Yes, I'm sick, yes I would rather it was something else, but a friend of mine had a fatal heart attack this time last year and died the day before he was planning to go on holiday. WHATEVER makes you sick is a bad thing. Cancer is just one of a whole range of things that can do that. It's also on the back foot because treatments are getting better and better. Quietrose, in a year's time you will look back on this and it will be behind you and not in front of you. I want it to be the same for me. Let's get this year in, clamp our eyes on the horizon, square our shoulders and go through it. 2017 here we come.....

  • FormerMember
    FormerMember

    Ok, so Thursday is a biggie for both of us...my next chemo session is Thursday too.  I know what you mean about telling people...I went to my company Christmas do last night.  Week 3 so I'm feeling pretty human, yay!  Thankfully, the bosses have already broken the news so they all knew already, but I hadn't seen a lot of people since my diagnosis so I was quite nervous about making people feel awkward etc etc.  But, it was great being out doing something "normal" and I work with lovely people so not many awkward moments thankfully.  Most of them were absolutely fine but I did get a lot of comments about how well I looked (someone even told me I was glowing...was tempted to say it was from all the radiation from MRI and CT scans, haha!!)...I think everyone has a stereotypical cancer patient image in their head of how you should look - I know I did.

    Anyway, glad I went.  Have felt pretty tired all day today though...even though I didn't stay late and didn't drink.  Guess I'm not quite back to normal energy levels.  BODY plan went out the window today - most energetic activity was hoovering the sitting room!  Oh well, tomorrow's another day...

    Good luck for Thursday - will be thinking of you x

  • FormerMember
    FormerMember

    Hello Quietrose, so, finally, the lump is gone. I expected elation but that never materialised and I settled for Resignation. At least I've had my operation now. I'm not too sore which is good but two days later I feel a bit "bluesy". I suspect I've overdone it in a bid to keep things as normal as possible. This all sucks. Anyway, enough of me, how's you? Is the chemo bearable? It must be hard just before Christmas. Yes, I imagine you will be tired. No surprise there my dear when you think what you're having to do. Just remember to rest when you need to. It's important to look after yourself as much as you possibly can. One day this will be nothing more disturbing than a memory, and you can put it to the back of your mind instead of the front. Hard times but each passing day takes you a step forward to the other side. Imagine a future day when you get through twenty four hours without thinking about it. I really want a day like that. Let's promise ourselves it Will happen sometime in 2017.

    Anyway, it's Christmas eve and I'm bushed, I'm in bed with a hot water bottle which is a simple but enjoyable pleasure. I hope this chemo session treats you gently and catapults you forward in your recovery. Talk again soon sweetie, xxx