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I am 44 years old, Married to Sean for 19 years and have 3 lovely children Hope is 14, Jack is 10 and Joe is 5.

Sunday, 29 January 2017

The Only Way is Up

In the words of Yazz and the Plastic Population (yes it'll bring back memories for many of us 90s teenagers!) That is the mantra for this weekend. Sung many times whilst blasting out on 12" and LP, then CD and now of course via many other means not least YouTube https://youtu.be/hOMvs_1UFCk

Whilst I find writing this blog cathartic and it being a good way to keep everyone updated, it is also an opportunity to give people a true snapshot of what's it's really like to live with a cancer diagnosis and for this week the fall out from the treatment. Maybe it'll help others, as they'll know they're not alone in their feelings, experiences or needs.

Not only do we know that cancer will affect us differently as individuals but so will the drugs. Those to treat the cancer and those to try and counteract the effects aforementioned drugs....it's a minefield. So despite both having breast cancer and the same chemotherapy drugs, my Chemo Buddie Sally www.onelegoneboob.wordpress.com and I are suffering (and I have never used this word lightly or inappropriately but it is MOST apt now) the fall out now. Different parts of our bodies are being affected. She has a hideous sore throat. I don't. Despite me never wanting her to go through this EVER again I do feel it so helpful that she understands the score exactly. We can just 'be' with each other, whether it's good or bad. 

It's interesting, because despite both of us going through it before, you do forget. Not the sheer intensity of the experience, nor the feelings at the time of it being never-ending. But the specifics; for example; which day was the worst following chemo? The sheer amount of tablets to take day in day out and MUCH more. The memories had even faded as to how absolutely RUBBISH you end up feeling. I was swiftly reminded of this on Friday evening whilst sprawled on the bathroom floor not knowing whether to sit on the loo or stick my head down it. It all came flooding back. 

I know Sal won't mind me sharing this text I received from her yesterday "I'm absolutely shattered, still in PJs and cannot get off sofa. Throat is red raw hence the codeine. Achey bones. Brain fog. Had forgotten how awful this is"

Another legend who helped remind me yesterday of some specifics from 25 years ago was Ainsley. We have been friends for 37 years, since Primary School. Her and her 'Team' of Fiona, Rachel and Esther, quite simply I believe, kept me alive during my treatments in 1992 and 1993, whilst I was receiving them in Birmingham, where they were studying at University. 

I spent many days as an inpatient and there wasn't a day when one of them didn't come. Some days they came twice and Ainsley virtually never missed a day! She became an expert at sticking up the 10 000 cards that arrived (and moving them every weekend when they shut half the ward down!) not to mention fetching and disposing of grey bowls - sick ones and bed pans. Quite literally the nurses didn't have enough time to do this and there would have be MANY more spillages and accidents without #TeamVicki. They also became experts at programming the drips (well pushing numerous buttons until they stopped bleeping!). None of this is an exaggeration, all will and can confirm and those like Dad, who witnessed it too and also did the same. I'm convinced him and Mum couldn't have left me for a minute if it wasn't for #TeamVicki. Whereas it enabled them to go back to the Wirral at times to try and create some semblance of normality for my 15 year old brother in his GCSE years and to go to work and do ordinary things like sleep in their own beds and just buy and cook food. 

Ainsley was straight on the text yesterday morning reminding me (I know she won't mind me sharing) 

"Hey Vic, hang in there xxx Remember it being horrific a few days in but it does pass so hold onto that. Thinking of u lots xxx"

"Memories do fade, but you've always been stronger than u know. U kept yourself going & we just helped out - u can do this again. I always remember it being really hard on the 3rd day after any of ur chemo treatments so guess it's just part of the cycle. U were always much better the following day so today will hopefully be a bit easier. Hang in there, u can do this xxx"

I just remember the whole 6 months as a blur of constant vomiting, nausea and other symptoms. I wasn't alone then and I'm not now but the reminders do help. As a friend said yesterday when I was telling her about this exchange she said "We all need an Ainsley in our lives." We sure do!

One of the chemotherapy drugs Docetaxel is renowned for causing bone and joint pains. In order to try and stop your white blood cell count dropping too low post chemo you have 5 days of G-CSF injections to try and counteract this
http://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html 
Thankfully another friend, Nicola, who is a nurse has been a star and coming Daily to do this. She has seen me from Day 1 quite chirpy having been to work, to being on the couch and today in bed. We will recognise this cycle next time I have no doubt. Having someone do these important tasks for you without fuss and doing so with good grace is absolutely invaluable. 

I haven't managed to get on top of the bone pain very well (stupidly trying to avoid the codeine for the first 2 days!) then being so sick I couldn't keep meds down. I won't make that mistake again! No medals for bravery in this situation!! 

Nor was the nausea and vomiting kept in check, as I didn't have what I needed at home. When a medic suggests going into hospital, as happened last year with my ankle, and it feels a relief, you know the time's right to do as you're told!

I was correct again and Hickman is proving my new best mate! Bloods from and fluids and drugs into him were easy. Had injections in both arms and oral drugs too. I'm thankful that we have the 24hr service where they'll throw everything they have at you to help get on top of things. Usual niggles with delays, paperwork, nothing gf in sight and pharmacy but my Sister in Law kept them in check and on track, tip top treatment yet again Chez Bexley. Shame it was 8 hours on a trolley but makes me appreciate my big comfy bed all the more :-) 

The fabulous meals, gifts, flowers, taxiing and sleep overs, ginger tea and various other supplies are still flooding in and we couldn't be more appreciative or grateful. It REALLY is making life easier and more manageable for all of us. 

After a shocking 48 hours I now feel better prepared to deal with the fall out from Cycle 2. It won't be easier, it may even be worse but forewarned is forearmed. I now have 3 different lots of anti sickness meds in my possession which I can space out through the day and night after I finish treatment next time. 

I have hit rock bottom and the only way from onwards from here is to begin the ascent. 







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Thursday, 26 January 2017

Firsts....

Monday 23rd January was the first day of my lectureship in Physical Education and Sports Pedagogy at Leeds Beckett University.

Tuesday 24th January was the first day of my chemotherapy treatment for aggressive locally advanced triple negative breast cancer.

Sooooo you could say not only a week of firsts but pretty big ones! 

On Monday it was lovely to just be 'normal' to go to work and sort out timetables, chat to colleagues and do a research interview. It kept me busy with less time to think about what was to come. After work I collected all three children, took the boys to the barbers and had a regular hectic Gilbert evening! 

I have no idea really how you prepare yourself for chemo anyway? What was lovely was, on my return, to find a package from someone, ironically who has recently become a good friend....through breast cancer. Not mine, hers. 

Having previously been through chemo myself and experienced how hard it was I wanted to help. She called them Care Packages...on chemo days....food to feed the family, comfort food and treats and distractions like magazines or DVDs. I now find myself on the receiving end of the self same deliveries and it really does mean so much....I can't put it into words. 

But the package that this particular friend left was full of things I just hadn't known or thought about. A spray bottle to wet my hair before the cold cap, gentle conditioner and a comb. All these things listed here in fact 😀 (Can't figure out how to add pics yet oops!)

Chemo day dawned with the all too familiar recent lack of sleep. But we were up and at it; picking up from diving, dropping at Joe at before-school care, Hope at school and Jack at a friend's...all by 8.30am Then my Bestie, Lorna, arrived, as she had done 25 years earlier, to support me through another hideous diagnosis and treatment for cancer.  I don't really think either of us can believe that this is really happening. 

She duly drove me to hospital, taken aback by the awful Leeds traffic! 

I can't explain how wonderful the staff are at St James' Hospital. Nothing is too much trouble, they never rush you and are always kind and caring. A REAL refreshing change in the current climate where staff and services are completely overstretched and literally there are no empty beds to be found! 

We experienced this when I was having urgent surgery on January 6th. On arrival at 7am on the ward we were told my consultant's list had been cancelled but she had fought to get two of us back on. Another consultant's list had been completely cancelled and patients were sent home one by one. Not because there was no theatre space or surgeons, just no beds. 

And I wasn't disappointed on Tuesday. Firstly I was lucky enough to see some friendly faces straight away. One of the Mum's from the Coeliac Group I help run is a nurse on Ward 80 and was the first welcoming face to greet us. She had amazingly arranged for me and my chemo buddy Sally to sit side by side. Sally's husband Pete kept us amused disappearing to cock up his shopping visits! Nappy sacks instead of wipes and salads and no forks!! 

Seriously though, it made the whole thing less scary. More calm, lovely nurses attended to us and offered tea and sandwiches (sadly not gluten free! Not had much success on that front so far!) 

Whoever said to me the Hickman Line I'd had inserted last week would become 'my new best friend' couldn't have been closer to the truth. No needles pour moi! Psychologically that made a difference. The Cold Cap was exactly that, freezing in fact, -5 degrees. And quite frankly almost unbearable at first. The strap was so tight, the 'brain freeze' agonising. It started a pounding headache and even stopped me talking for a good while!! It has been found to work for about 50% of users to retain about 50% of their hair. I have decided to see how much I lose before my next round as to whether I'll subject myself to that torture again! It really is the least of my worries in the whole scheme of things. 

I didn't feel anything with all the drugs going in and was glad to get the cap off (only when it had been disconnected a good while were they able to remove it, when the ice that had formed had melted!) I was glad of my new cotton beanie to help warm my head up afterwards! 

I was of course lulled into a false sense of security that I merely felt 'ropey' on the day after. I actually managed to go to a 3 hour meeting at work. Which was great, again, not thinking of cancer just research and future plans and see colleagues. 

Dealing last night and today with the familiar symptoms has been tough. Overwhelming nausea, diarrhoea and excruciating joint pains (especially in the joints that I've had problems with in recent years - hip, ankle and elbow) is not pleasant. The only hope and way to bear it is the hope then that it's doing it's job, destroying those bad cells that will see me lose my left breast, maybe all the lymph nodes under my left arm BUT I hope enable me to live to see my children grow up. Which right now, in my darker moments, is my biggest fear. This is the reality of cancer. 


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Sunday, 22 January 2017

Welcome to the reality of 2017

Well for once (I know you won't believe it ;-) I really am lost for words and don't quite know where to start.

These are the words that I have heard numerous times in recent days and weeks. That is since our world as we knew it began to fall apart just before Christmas. Words which I never thought we'd have to use as part of our everyday vocabulary have sadly once again become standard and will be for the foreseeable. Words such as Hickman line and neutrophils to Oncology and lymph nodes.

We were given a very unexpected Christmas present 5 days before the guy in the big red suit was due to put in an appearance. We were told in no uncertain terms that it was highly likely I have breast cancer and would need radical treatment to try and rid me of it. We then had an agonising 2 week wait until the New Year until they could give us 'the formal diagnosis'. Limbo land hell, sleepless nights and disbelief don't quite cut it.

We gradually told family and close friends and the children. I can't even bring myself to put into words at the moment how difficult that was. Sadly cancer isn't a stranger to our family, having lost my Godfather to secondary kidney cancer a few years ago and Mother in Law to the most agonising death from vulval cancer more recently, none of us, the children included, were ready (is one ever?) to enter this world of uncertainty again.

Since then we have gradually told more friends and family, colleagues, school mums and dads, teachers. On the whole we have received nothing but support, offers of help in so many different ways (we have accepted as many as possible with open arms and gratitude). Colleagues especially, couldn't be more accommodating, which really does make a HUGE difference!

So as I embark on a monumental week; firstly starting my role as a full-time lecturer in Physical Education and Sport Pedagogy at Leeds Beckett University and the following day my IV chemotherapy to try and rid myself of this dreadful disease, I have not got much head space for a great deal else as you may imagine!

Although, I will mention my friend Sally's blog; through another bizarre twist of fate, I will be seeing far more of her than either of us had planned. She has written a recent post about me here https://onelegoneboob.wordpress.com/

In posts over the coming weeks I'll upload the thoughts and experiences I've recorded over these last 5 bizarre weeks, as well no doubt, as the experiences as I face what is to come.