Month: May 2015

… my hair has started to fall out.  It’s not coming out in big chunks, yet.  Just if I run my fingers through it I end up with quite a lot of hair in my hand rather than just the odd couple.

I’m really quite glad that it is starting like this.  I know that I have been ’embracing the wig’ but there is no way of telling how I would actually feel until it started falling out.  I feel ok, I’m not as freaked out as those who have seen the hands full of hair are!  I feel like its giving me a chance to get used to it before I’m totally bald but I will be calling Melissa my fabulous hairdresser on Monday to arrange a visit before the end of next week to get the job finished.

Henna crown research is underway 🙂

Talk to you soon

Lots of love Mand xxx

Today I went to Ipswich with my Mum and sister to collect Sugar!  You will remember from my earlier blog Sugar Syrup that choosing a pink wig was easy, it was what I wanted to have as soon as I knew I would lose my hair as an act of defiance against the cancer but also because it was an opportunity to add a splash of colour to life, something that I would not have done in my ‘normal’ life.

In the mornings Phil, Dude and I go for our morning walk together.  It is a special time for the three of us to just ‘be’ together.  Earlier this week Phil said ‘I’ve been thinking’ (not often a good sign for me, it usually means he’s been thinking about how to tell me that he disagrees with a decision I’ve made!!).  He said; ‘some days you might want to just be normal, to blend into the crowd and be able to just go out and not be sticking two fingers up to cancer’.  He was of course right.

So today we set off with the mission of collecting ‘Sugar’ and finding another wig that was interesting enough to excite me and yet subtle enough to be inconspicuous if I want to.  Mission Accomplished!

I would like to introduce you to Raquel

I love this wig!  It is how I would always like my hair to be but never have because I can’t get the root lift!!

The team at Frobishers were great. So warm, welcoming and supportive, and they had an amazing selection of wigs and accessories, it would have been very easy to get carried away.

Jean who did my fitting at the Big-C was there (on the right in the photo above) Sophie did my fitting and trimmed up Sugar to make her a perfect fit 🙂 and here she is:

That’s it, a couple of extra headscarves two wig stands and a ‘maintenance’ kit and I’m all ready for the fall-out!

Talk to you soon

Lots of love Mand xxx

I am conscious that I have not been posting very much lately.

I have been having a lovely time with my family visiting.  It’s been a rapid turnaround with everyone wanting to ‘have a look at me’ as well as having the opportunity to see big sister Booie.  My Mum arrived yesterday.  My sister and I are now teenagers again! Step dad Richie will be joining us Friday to rescue Phil.

All this company is a great distraction and if it wasn’t for the fact that I descend into a sleepy fuzz after eating lunch and can do nothing other than nap I could forget about the issue at hand.  Phil has reminders in his phone for when I have to take and record my temperature to ensure we notice quickly if I have an infection and everyone is instructed to ask me why I’m not drinking if I am not sipping on water to keep me fully hydrated.  Other than that, I’m having a lovely time 🙂

It does however make time for reflection more scarce.  I woke early this morning, it was just before 4 (it’s all this water I’m having to drink!!) I could hear a couple of birds beginning to stretch their vocal chords so I opened the window wide and snuggled back into bed to listen to the gradual crescendo of the Dawn Chorus.  It has to be one of the most beautiful and chaotic sounds of nature, all those birds celebrating the fact that they’ve made it through the night, they’re alive and staking a claim to their territory.  It made me want to celebrate being alive along with them but the gradual crescendo of Phil and Dude snoring, joining in with the chorus reminded me that I really should be sleeping and I gradually drifted back off to sleep with them.

Talk to you again soon

Lots of love Mand xxx

 

As you all know, I have been spending time with my sisters.  Booie is still with me but Bryony went home today.  Unfortunately Booie couldn’t bring her husband Dave with her, he is back home in California keeping the home fires burning, looking after their business and their pack of dogs!  Thankfully for Phil’s sanity Bryony brought her partner Chris with her 🙂

We had a really lovely time.  It was the first time we were all together in several years and it was the first time Booie had met our niece Amelie.  We have talked a lot about how I am feeling right now, almost a week from my first chemo.  We haven’t really talked about much else to do with my diagnosis.

I have been adamant from the start of all this that we’re not doing doom and gloom and we’re taking each day as it comes rather than trying to predict or anticipate how this is going to play out by ‘living in the moment’.  Although it is of course human nature to want to know what’s going on and what will happen so that we can prepare ourselves for it.  I think it is difficult to feel comfortable  being permanently in either of these positions.  Whilst sitting here right now I could easily imagine that my life is just the same as it was two months ago, but the truth is, it isn’t.

Finding a balance will evolve as we progress through this I’m sure.  In the mean time, I’m just thankful to have such a loving and supportive network easing me into this new world.

Talk to you soon

Lots of love Mand xxx

There are so many great things about living in the sticks; I get to wake up to a view like this:

I get to go for walks like this:

Unfortunately, we also regularly drop off the information super highway and lose our broadband connection.  When I say information super highway, what I really mean is a thin copper wire and we’re 7 miles from the exchange so we’re excited when we get half a meg!!  Anyway, we appear to be back, for how long I’m not sure so I’m going to be brief.

I am amazed, I have taken the anti-sickness drugs and had a couple of afternoon naps but generally I am feeling good.  All helped by the pampering from my big sister Booie – check out my bling nails!!

I now have both my sisters here along with my niece, Amelie so we’re going out for a girls lunch before my nap 🙂

Talk to you again soon

Lots of love Mand xxx

 

    

 

So when I first got my diagnosis my fabulous friend Teens told me about the power of visualisation.

Teens has Dolly the Dolphin who swims around her veins eating up any infected cells helping her to feel better whenever she’s poorly.  She had heard of a boy with cancer who played a video game every morning shooting up the cancer cells who had great results alongside his treatment 🙂

Now I am a huge believer in the power of positive thought but not a lover of guns!  I gave it a little thought and decide upon a unicorn who would gallop around my veins bursting the cancer cells like bubbles with his horn.  I know this isn’t everyone’s thing but I’m not apologising for it because I really believe this is helping!

That night when I went to bed I began visualising my unicorn galloping around my body, frolicking around bursting any cells floating around in my blood stream with his horn after only a couple of minutes Dolly the Dolphin swam past on her way to my liver to munch on the tumours there, doing her bit to help out, amazing!  But it didn’t end there.  Our old white cat Ziggy who is sadly no-longer with us appeared next, she was lying on a bridge over the stream that is my blood in my visualisation.  When she was with us, she would lie on the sofa and if Dude (the dog) or Munch (the cat) walked past she would bat them on the head, just because she could.  If she wasn’t doing that, she was sunbathing.  So here she is, lying on the bridge in the sunshine and every time a cancer cell drifted by she would bat it just like she used to with the boys!

Remember, I only created the unicorn for my visualisation, the others just joined in!

The next time, my sprit guide (according to a FB quiz so it must be real) is a white wolf and he had joined in the party tearing chunks out of the tumour in my breast and then moving onto the tumours in my liver.  I told my little sister Bryony about this and she said that she could see Mrs Pac-Man munching her way around my body… next time, there she is minding her own business munching along.

Last weekend my gorgeous friend Gabs came to visit, I told her all about my visualisation and last week I received this beautiful charm bracelet to help with the fight!  Another unicorn, turns out, he’s a she and they are in love <3.

I had been asking a lot of my team, they were starting to look tired and I promised them reinforcements with the chemo yesterday but I could not have imagined how the visualisation was going to go last night…

As I said yesterday, they injected the chemicals one at a time.  In my visualisation, as the first drug went in a team of horses came galloping into my veins, with the second, their knights and with the third their lances.  The reinforcements have definitely arrived.  They do however behave just like chemo hunting down any fast moving object they can find… not just cancer cells.  Then the most amazing thing happened.  The unicorns herded the knights to my liver and breast to concentrate their battle where it was most needed… awesome!

Today I have felt pretty good, I’m still taking the anti-sickness drugs (prevention is easier than cure) just a little nap this afternoon….

I’m really looking forward to seeing my big sister Booie tomorrow 🙂 and Dad and Chris.  I am surrounded by love and all your kind messages of encouragement and support are what is making me cope so well – I know it – Thank You

Talk to you soon

Lots of love Mand xxx

 

 

 

 

This morning at 09:00 I had my first chemotherapy session.

I am deliriously happy to report that it was pain free 🙂

As I am having the FEC combination of drugs, it is also quite social, which of course pleases me!  This combination has to be manually injected into the cannula alongside the 1ltr saline drip.  Whilst others are set up, plugged into a pump and left to get on with it, I had the full time attention of my nurse for the session, Jackie.  She had to administer all 6 giant syringes of drugs (2 Fluorouracil, 2 Epirubicin and 2 Cyclophosphamide (that’s why they call it FEC!)) slowly so we sat and chatted the whole way through.

All that volume of fluid going in made my hand and my lower arm ache a bit.  When I touched it, it was very cold so Jackie got me a heat pad which she plugged in and wrapped it around my arm which felt lovely.

There is also an army of volunteers in the chemotherapy unit making tea and coffee and bringing biscuits – these people giving up their own time with a smile and all deserve a mention but I am still rubbish with names and don’t expect that to get better any time soon… on that note, I have to apologise to Daphne of the Big C for calling her Brenda in my earlier post  “Sugar Syrup” sorry Daphne!

As soon as it had finished, my face felt kind of fuzzy, a little bit numb, a bit like I’d had a couple of drinks.  I still feel a bit numb now (19:50) but it is lifting slowly.  I have had some waves of nausea.  They gave me an anti-sickness drug at the hospital but they gave me another to bring home in case that one didn’t work so I have taken that too – as they have all said, prevention is easier than cure and who am I to question their judgement.  It will be no surprise to most of you that it hasn’t stopped me eating 🙂

I am feeling tired now though so going to call it a day.  Thank you all for the love and support, I know it is powering me through this.

Talk to you soon

Lots of love Mand xxx

Right – here we are, one more sleep and it all begins.

I feel a bit as if I am about to take my healthy body and put it through hell so that it gets to the same place as my head has been for the past 6 weeks.  Just so that I can then bring them both out of the other end in a much better state!

As you may remember from my post ‘How the FEC did we get here?‘, it was a tummy ache that triggered an ultrasound that found the lesions in my liver that turned out to be stage 4 breast cancer.  I have had 3 of those episodes, all lasting about 4 days.  That’s it.  I do get a heavy feeling in my upper abdomen, just under my rib cage but no pain.

Mentally, I have struggled with coming to terms with the diagnosis – the manifestation of which is a total lack of concentration and focus.  Phil recently described it as having the attention span of a gnat!

However, physically I feel fine.  Phil, who is my chief researcher (he does an excellent job of filtering out the scary bits) as well as my fabulous husband told me it’s important to keep exercising, to keep fit (obviously not as fit as an athlete!) so I have been walking with Dude every day and going to Zumba twice a week.  I feel good.

Despite that, tomorrow I am going to have poison injected into my bloodstream to kill the cancer.  The trouble is, the poison will also kill healthy cells in my body, primarily the fast growing ones that behave in a similar way to cancer.  The main ones are hair follicles, intestines and the mouth.  These cause the hair loss, nausea and ‘dry mouth’, the common side effects of chemotherapy.

A colleague of mine who has been through chemo said to me; “the good thing is cancer is much less likely to kill you these days, the bad thing is, you have to go through a really horrible time before you get better!”.

The thing is, some people do go through chemotherapy without having too horrible a time and I have therefore decided that I will be one of these people 🙂  I had a conversation with an old friend earlier and we decided that we should assume that I will be absolutely fine.

So we have a plan, I will sail through the treatment and if I do start to feel poorly, then we’ll deal with it and do what we have to do to get through it… but the money is on sailing through 🙂

I favour my odds!

Talk to you again soon

Lots of love Mand xxx

What a beautiful day…again!  We have had so much sunshine in the last few weeks we must be close to a sunshine record 🙂

Today has been a treasured day of normality.  No appointments, nothing in particular that had to be done or shopped for or prepared. Just like Saturdays should be.

We did a little in the veg garden, walked Dude (our gorgeous dog), had a bonfire and I even did a bit of ironing!

Talk to you soon

Lots of love Mand xxx

Today was exciting – it was wig day!

The fitting session was at ‘Big C‘ which is right next door to the Colney centre where the oncology and chemo appointments happen at the Norfolk and Norwich University Hospital where I’m being treated (hmmm, treated, that sounds like it should be something much more fun than the reality…)  Big C is Norfolk’s cancer charity since 1980.  They provide loads of support for cancer patients in a non-clinical environment.  They have a band of volunteers who welcome all-comers with tea, biscuits and a warm smile.  Complementary therapy sessions and various workshops and seminars are also held there. In short, they are amazing 🙂

Here’s who was there today!

Bear with me for a moment, I’m going to take you back a bit.

When the consultant first mentioned cancer, my natural reaction was, if we have to deal with this, how we could turn this into an adventure and find the positive experiences to take from it?…. whatever little bit of fun can be found in this has to be exploited.  If I’m going to lose my hair, I’ll get to try out some different styles and colours… I’m going to have a pink wig!

When I met the oncologist and she told me that they would organise a free wig for me I told her I’d like a pink one.  She said brilliant!  When I went into Big C to meet some of the team the response was a little different…

Me: Yes, I have my appointment for the wig fitting, I’d like to have a pink one.
Anne: Oh, I’m not sure if Jean does pink wigs; Bridget, does Jean do pink wigs?
Bridget: Oh, I’m not sure
Anne: She usually trys to match the wig to your current style
Me: Oh, I just thought it would be fun to try something different.

I began to think maybe I’d got this wrong.  Maybe you can’t ‘make the most of’ something like cancer.  Maybe this really is the point at which you have to stop trying to make this into something that could be fun in any way shape or form.

And then I thought; there is no way I can give up on this or give in to this or approach this any differently from the way I have ever approached anything before and I will have a PINK wig.

Right, back to today

I met with Jean from Frobishers in a private room to talk about wigs and get my head measured.  Phil and I had spent quite a lot of time surfing wig shops on line so we had an idea of what is available and he had come with me to help me choose.  However, while we were having our coffee he got a better offer which I’ll write about another day 🙂

Jean was great.  When I went in she looked at my hair and said “oh, I think we can do something like that” with a lovely warm smile.  I said “I’d really like a pink one” and braced myself for the response.
“Ooh that’s great! We have a lovely bob, I don’t have one with me but I do have a picture, let me find it!”
Oh my goodness – what a relief – I must have been smiling like a Cheshire cat!!

So here is Sugar!

Just to learn how to put a wig on I tried Shannon!

Sugar will be ready for me in a couple of weeks, hopefully before I need her but I did buy a head scarf just in case!!

Talk to you again soon

Lots of love Mand xxx