Today is world cancer day. I can't seem to escape the c-word topic on the radio today, particularly with the news that this disease will likely affect 1 in 2 of us. Another stat on the table. I truly hope for you all that you remain in the healthy 50%. It's a complex debate but I do believe there is something in prevention rather than just fixing the problem once it has developed. Time will tell. For me personally, today marks the anniversary of receiving my preliminary diagnosis. In many ways it feels a heck of a lot longer than a year ago.
So a year on and there have been biopsies, radioactive dye, 3 rounds of FEC, 1 port installed, 3 round of Docetaxel, 1 boob job, 15 sessions of radiotherapy, countless jabs, scans, blood tests, baked goods, daily physio regime, counselling, lots of love and laughter, few tears, some gritted teeth, hair lost, hair gained (not in the right places!), voice lost, voice gained (bad luck DW!), songs galore (thanks LH - search Homo's hit factory for our playlist), eyebrows lost, eyebrows slowly growing back, eyelashes lost and gained (though not as long!), yummy dinners both in and out, BRCA positive and most importantly many, many wonderful people to make it a darn good year...
People often ask me how I will remember 2014. I don't have any ill feelings towards it, in fact rather bizarrely I think of it rather fondly. It was a year where I had a true life experience (corny I know). Of course there were low moments but overall 2014 was a pretty good year. Despite the treatment regime we had a lot of fun and did a lot of great things surrounded by wonderful friends and family. My BRCA positive result means that this chapter can't quite be closed yet but we're definitely nearing the end. The likely plan is another boob job at the end of this year, an early Christmas present (!) and monitoring my ovaries until it seems the right time for an oophorectomy (my risk is 4% until 40 and lifetime around 50%). But all of this is positive proactive prevention for something that may or may not be.
My 2015 project, which may not surprise you, is operation head hair growth...may the colour return!!! Sometimes when I see a hair in the sink and it's a hair from my wig I forget that I've lost my hair. I go to touch my hair and get a shock or forget that it's gone...I've heard that amputees sometimes reference feeling a pain in a limb that is no longer there, so I guess this is similar sensation. The grievance process is long on this as it affects my overall identity, plus you've heard me harp on enough about it! ; ) When I'm at the gym I feel like telling everyone this isn't how I want to look...vanity is sanity...though it's a small price to pay for having hopefully got rid of this disease.
As this is my wrap up of the year that was, here are some of my 2014 observations..some are treatment relevant but a lot are general life observations....
Do things that make you feel alive - a walk on a freezing cold winters day, a swim in the sea, laughing so hard that you stomach aches....
Kindness from strangers. I've noticed this a lot this last year, most recently from a lady in my Zumba class. One week complimenting me on my energy levels being inspiring then last week on my hair growth. These things really make us all feel good, so we should do it more often!
Gratitude diary - every day write down 3 things your grateful for - this could be a person, a sound or an experience.
Keeping a daily diary - log how you're feeling emotionally and physically. I found it really useful for going into consultant meetings...hence the endless list of questions, particularly for Dr Davis!!!
Exercise - keeping active is really important and I'm annoyed with myself that I didn't continue zumba. I also allowed myself to become pretty lazy over the autumn and thanks to a certain someone I joined the gym to get this body moving once more! It definitely helps with fatigue so keep going if you can.
Listen to your body...if my glands in my throat are puffed up it means time to stop!
Ask questions and have a notebook with you at all times (top tip from Ces!). Also take someone else to appointments with you for another pair of ears. It was amazing how often I came out thinking something slightly different to what DW heard.
Chemo checklist - list of comfort stuff to take on chemo day. Do it once and then it's done!
Pill chart - when I got back from a chemo session I would write down all the doses I needed of the relevant drugs so it became a tick exercise and I didn't have to think about it for the rest of the week. Equally I could add in any extra medicines that I had taken, such as paracetamol for reference. I kept these charts so I could compare for each round. Geek I hear you scream...it worked!
Temperature chart - ok so this was going a bit OTT but it gave me some sense of control and did come in handy a couple of times when I went into hospital and they wanted to know what my temperature had been. Admittedly I only did this week 1 of a chemo cycle...though for quite some time after I tracked my temperature just before bed to give me a gauge of what normal for me was.
Hairloss - this had it pros and cons. The con we're all familiar with and the legacy lives on for me currently. The pro was no body hair for a good 5 months, so ladies get your legs waxed before starting to have smooth pins for months!
Be prepared for head hairloss - get your armour in place before your first chemo session if possible. Although nothing will prepare you for the hair coming out, at least having a survival kit in place you can feel ready to face the world. I found it good to gain confidence wearing my wig whilst I still had hair underneath. I never had the strength to shave my hair off but I suspect for many people this gives them some control over a truly horrible situation.
Gut instinct - this will tell you a lot so listen to yourself. It may sound strange but ask your inner self how you are...you never know you might get a response back!
Be positive - this is far easier said than done, particularly depending on the diagnosis. I found not feeling anger or upset towards the situation allowed me to focus on fixing the problem rather than dwelling in the problem. Ironically at the end of treatment some of these feelings have surfaced as I guess I suppressed them during treatment.
Post treatment depression/ fatigue - feeling that nothing really delights. I want to hit myself for saying this as I should be so grateful for the position that I find myself in but I felt quite blue in the couple of months after radiotherapy. I wonder if by being on the positivity express for so long that this was destined to catch up with me at some point...it will go and is starting to....So my plan is to focus on the future and not dwell on past positives...in this instance I'm mainly referring to hair pre loss!
Focus on the future and having things to live for. I didn't feel it was 'my time' so instead I made sure that I had the time of my life when I was feeling up to it, which thankfully was more often than not. Planning fun things at the right time of a chemo cycle gives you something to look forward to and focus on.
Ask for help! I hate asking for help but I realised for those around you it's their chance to feel as if they're doing something in helping you get better. This went from asking DW being with me a nighttime when I was combing my hair and it was coming out in handfuls, friends bringing juice to a team of researchers so I could avoid looking at the online medical world.
Consider which friends and family you'd like at different treatments. I knew for chemo I needed calm people who would chat away and make the time fly...Kim was my chemo distraction queen, particularly in the first 10 minutes of round 3!
Live for the moment and notice the small things. I was lucky to be having chemo during spring and summer, so it was wonderful to notice the blossom coming out in the spring.
Reflection time. This can often be the hardest thing to do as you often you don't want relieve treatment scenarios but I think there is something in taking the time to accept what's happened.
The mind. It's a clever thing and has crafty knack of helping to forget how traumatic certain scenarios were. I remember the afternoon of having the port installed into my arm. It was probably one of the worst moments from last year but an hour after it happened I had perked back up again and thought ok keeping going.
It's a marathon...depending on the treatment plan, it's a marathon. My order definitely started hard and got easier but my reserves definitely dwindled, partly as I was playing hard as I could! So I don't think radiotherapy itself makes people tired, it's more the cumulate treatment effects.
Keep going and focus on the finish line...my finish line is not quite in sight but it will be soon enough.
It's ok to have a wobble...a phrase that Jane instilled in me fairly early on so I rolled with the punches (Debbie coined phrase!), eventually.
Counselling - I had only had brief experience of this before last year. One of the main benefits is being able to impart all of your fears and feelings to someone who isn't emotionally connected to the situation. Davinder was an absolute angel by listening to my early thoughts. An hour's cry later, I felt remarkably better! You may feel that you're sharing things with your nearest and dearest but there are bound to be things that you're holding in...having that independent party really makes a difference. You may need to try a couple of counsellors out as it's important to click with that person. I'd also recommend this for your partner so that they also have an outlet for their thoughts and worries.
Radiotherapy - lord knows if this is why I was lucky enough to have minimal skin reaction to radiotherapy but request Xclair from your GP instead of using aqueous cream.
Don't have a fear of dying. It's the only certain thing that we all know will ultimately happen to us...just think it not being your time just yet. I've now focussed on a number that I'm aiming to live to. Apparently many centenarians have always believed that they would live to at least one hundred so perhaps there's something in this! Plus even with today's cancer stats being revealed there is a good chance that cancer survivors will hit 100 as treatments get better and better.
Reassurance - sometimes just asking the question that is floating in your mind helps to make you feel a million times better. My post surgery Friday boob checks with Gwynedd were key to my recovery. Just having someone who can reassure you that everything is as it should be makes a whole heap of difference. Even now I'll pop in to see the Janes or Gwynedd for a quick check over. They tell me it's their job but often I feel I'm taking time from someone who needs it more...but there again my number one task is looking after my health...and feeding DW!
Many of you will have seen these photos on my earlier posts but I wanted to capture the year that was in pictures...so here goes!
FEBRUARY 2014
My Wonderland profile photo...it captured how I was feeling in the early days post diagnosis.
Happy Lisbon days!
Last zumba session before treatment kicked off!
Riverside walks
First general anaesthetic in 30 years...plus meeting Little Miss S!
MARCH 2014
Sorry Kim!!! This had to be included....wig shopping!
First proper wig wear before chemo kicked off
The beloved cold cap...round 1
The finest baker and medical researcher in the land!
My final haircut with Monsieur Dupouy
Ding, ding - round 2!
APRIL 2014
Words can't begin to describe this....
Happy bandana days!
The After Eight challenge...
Henley river walks with DW
Three lovely ladies at the top of The Shard...yikes!
Easter walkers along the Thames fuelled by Simnel cake
Ding, ding - round 3...the last outing of the cold cap
Hospital gown chic!
MAY 2014
May day walking
Ding, ding - round 4!
Hello Rudolph!
DW's Birthday BBQ!
The ladies who afternoon tea!
Green juice!
True love!
JUNE 2014
Ding, ding - round 5!
Birthday bubbles!
Race for Life - Team V!
One man, his steak and red, red wine.
Introducing Mr Elton John!
Daniel my brother...
JULY 2014
Little Miss S tries a new hairstyle
Ding, ding - round 6 finally done....these are very special ladies who I will remember forever. Regina even checks in now to see how I am. An amazing lady.
Battered by chemo....
Happy homeland holidays
Sunny summer's evening...a crabbing good time!
End of chemo party! YMCA....
AUGUST 2014
Sunday strolls...
One of my favourite photos of the year...tranquility
Someone who has kept me smiling this year...Maddie Regan!
Ice cream days on Guinea Pig Island
Surgery time...human notepad!
Home James (aka nurse Lars)!
Grandma style shopping trolley!
Celebratory cookie on the great post surgery pathology results!
Cruising along the Thames with the Hamiltons on a chilly summer's afternoon
Look, no hands!
SEPTEMBER 2014
Crayfish party @ Ivy Crescent
First flight since Feb!
DW and his favourite Swedish pony!
Haverdal strand!
All dressed up for Stuart and Jasmin's wedding
Love is....
OCTOBER 2014
Hopeful...
May I introduce the Potatoheads...Mr & Mrs
This year's reading list!
An evening with Ray Gelato and his biggest fans!
Hit me baby, one more time....
The silhouette of the year.
Finished - 22nd October @ 16.33!
End of treatment bubbles
Birthday celebrations
NOVEMBER 2014
Silver coast beach walking
Waterproofs and sunnies...typical beach attire! ; )
Cycling by the sea
End of treatment party!!!
DECEMBER 2014
Wreath makers!
From the person who sends the best cards....
Winter woods walking
Christmas mustard making
Merry Christmas!
Walking in a winter wonderland...
JANUARY 2015
Free falling...
From the bottom of my heart I want to say thank you to each and everyone who has helped me along the journey of the last year. I may seem like a tough cookie at times but I definitely couldn't have done it without all of the love and support that I received. Texts, cards, flowers, muffins, phone calls, folks running half marathons to name but a few...I was completely overwhelmed with the showering of love. Now it's my turn to start thinking about helping others and making a difference...
There's one person who has been on the daily journey with me, who has endured the lows with such pragmatism and enjoyed with highs with much love. DW, you are amazing. Thank you, thank you so much for sticking with me this year.
My original quote from Eleanor Roosevelt has definitely been tested this last year. I think I have faired pretty well in the hot water I've been dunked in. No doubt life has got more challenges to throw my way but hopefully this tea bag will float to the top and survive!
Next week I kick off my annual check up scans and mammograms (thank god it's only 1 boob this time!!!). Positive visualisation will most definitely be used to get through these and the belief that the thing that never made me feel ill has gone.
So today feels like my new year. New year, new me...we'll see! ; )
Time to celebrate the year that was and for what is to come!
To coin a phrase from one of my favourite people - Live, Love, Laugh!
Roger that. Over and out.
