What the FEC

I can hardly believe that it’s been three weeks since my first chemo session.  Tomorrow I’m going in to receive the second deployment of reinforcements to kick this cancer into touch!

I am as hydrated as a particularly hydrated thing and totally ‘nutritioned’ up.  The only thing that could be better is my sleep; I haven’t slept too well the last couple of nights, I think it’s my subconscious going into overdrive and preventing me from feeling fully rested but that’s to be expected I’m sure.

Even though I know I’m in a great starting position there is still a little part of me that has heard that having chemo can get harder as it builds up in your system and that this one won’t be as easy as the first and that’s a bit scary.  The thing is, I don’t know how it will be, no-body does as everyone keeps telling me, all patients respond differently and all I can continue to do is assume that I will be the one of the lucky ones that continues to sail through and just deal with any issues if and when they arise.

On a lighter note, I had a lovely day today.  My fabulous husband Phil took me into the city today (that’s how we refer to Norwich in these parts!).  I needed some summer tops with long sleeves – not as easy as you might think!  Chemo leaves you very vulnerable to sunburn so as well as the factor 50 sun screen, I also need to keep out of the sun so long sleeves are essential.  He hates shopping but was brilliant, not only being super patient with me but also finding me some great buys!  My hero 🙂

Talk to you soon

Lots of love Mand xxx

After we left the hairdresser on Thursday, we had to go to the garage to drop my car off for a service.  It was a beautiful sunny afternoon and as we pulled up we saw a dark grey DS3 Cabrio courtesy car and joked that it might be what we’d get.

James, who took our details etc. was great.  He was not even slightly phased by me in my pink wig!  When he told us that we were having the DS3 as our courtesy car Phil and I looked at each other and laughed.  James said it was a perfect day to have the roof down.  I explained to James that I had just had my hair cut and this was the first time I was wearing my wig.  We were worried that it might blow off with the roof down! He told us that he had lymphoma 8 years ago and the worst part for him was losing his hair.  He asked me if I had had any chemo yet.  I think that because I look (and am) so well he thought I hadn’t had treatment and had just decided to cut my hair before it fell out 🙂

We had the roof open part way like a sun roof for a while but the sun was shining in on us and I’m not supposed to expose my skin to the sun so we closed it but it was still a pretty cool ride home.

Yesterday morning I went to the doctors to get my bloods done.  I have to have my blood tested to be sure that all the levels have bounced back up enough for the next deployment of reinforcements.  I am confident that they have, I’m feeling as good as I was before I started (as long as I have my afternoon nap 😉 )

Anyway, the point is, the phlebotomist had a trainee with her and they both loved my hair and complimented me (and sugar!) and the receptionist even smiled at me!

I think Sugar and I are going to have a lot of fun!

Talk to you soon

Lots of love Mand xxx

Melissa did a fabulous job, she cut my hair rather than using clippers for safety as well as dignity 🙂

I quite like this look – trust me, it is a vast improvement on how I looked this morning.

 Thank you Melissa -you’re a superstar!

Sugar won the vote, I only got a few strange looks as we walked to the car park. I don’t suppose it will take me long to get used to that!

Talk to you soon

Lots of love Mand xxx

In my post Sugar Syrup I mentioned that Phil got a better offer.

At the Big-C as well as hosting various seminars and events, offering a quiet place for reflection and support and having a great library of resources and much more, they offer complimentary therapies.

Every patient and their ‘carer’ is entitled to 6 massages each.  When we went to have my head measured for my wig, the therapist Rachael was there (she’s in the photo).  She’d had a cancelation and had a gap before her next appointment so asked if Phil would like a sample massage while I was being measured for my wig!  Of course, we couldn’t say no 🙂 the timing was great.

No matter how you look at it, for me the worst thing about having cancer is the impact it has on the people around me.  Phil is my rock, my protector and my everything (we celebrated our 18th wedding anniversary in May), carer was never part of the job spec but he has taken it on like a pro.  He does inject Munch the cat with insulin twice a day for his diabetes and give Dude his medication three times a day for his arthritis so he has just added my nutrition, hydration, fitness and general wellbeing into the mix!!  The Friday of the wig fitting was a difficult day for us both, my chemo was going to start on the Monday and we really didn’t know what to expect.  An escape into relaxation was just what Phil needed, just when he needed it – Perfect.

Back to today, I have been wearing a head wrap for the last two days, I don’t like the way I look at the moment, it’s like an old man with thinning hair.  Tomorrow the hair loss will be over and I’ll be happy about that.  Once when I had a perm (ok, give me a break… it was the 80s!) my Mum was at the hairdressers with me.  She commented that I had a lovely shaped head with the tight rollers in.  We will find out tomorrow if that was just a mother’s blind love or if it’s true!  This is the look I was rocking today!

I have uploaded a couple of videos of my hair loss – you can access them here if you’d like to have a look – I will warn you that some people may find them a bit freaky!

Thank you again for all your love and support

Talk to you soon

Lots of love Mand xxx

Our last visitors left this morning.  Mum and Richie took Booie to Gatwick airport before driving home to Derbyshire.

It has been lovely to spend time with everyone in different combinations, I feel so lucky to have such incredibly supportive family and friends.

This week is now about focussing on ensuring that I am in tip-top condition so that my blood test on Friday is good and I’m fighting fit for the next deployment of reinforcements next Monday. Phil is in charge of nutrition and hydration and takes his responsibilities very seriously so there will be no opportunity for slacking!

I have an appointment with Melissa to tidy up any leftovers of hair on Thursday afternoon this week although at the rate it’s falling out there may not be much left.  It really is quite extraordinary – so much has fallen out but as I write, if I look in the mirror I don’t look any different.  It is driving me crazy though.  My clothes quickly get covered in it and I am leaving a trail behind me wherever I go, Phil is following me around with the hoover!  It is tickly and itchy but there is no pain or discomfort so I can’t complain.  The big decision is which wig to take to the hairdresser’s to come home in…

Talk to you soon

Lots of love Mand xxx

 

… 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