Month: June 2015

My life is currently organised into three week segments which conveniently start on Mondays.  Week 1 is the treatment week, week 3 is the preparation week and week 2 is all mine to do whatever I want with 🙂

Truth is, this week 2 can’t be about nothing.  This latest week 1 has been tough and I need to work on preparing myself both physically and mentally for the next one.  The fact is when my bloods were low and I had to be re-tested on Monday before I could have the Chemo, it was a shock and I think it made me take my eye off the ball with the anti-sickness medication and hydration resulting in issues with the nausea continuing for longer, struggling to drink enough and my digestive system almost grinding to a halt with painful consequences.  (You don’t need to know any more than that 😉 )

So, I’m bouncing back up into week 2 with a renewed vigour to discover the differences between and the relative benefits of soluble and non-soluble fibre, looking at taking a little exercise directly after meals rather than just the two walks with Phil and Dude morning and afternoon and generally becoming better educated… I’ll keep you posted!

Talk to you soon

Lots of love Mand xxx

PS – Thought you might like to see this picture of Phil and me from Wells last Friday xx

 

Yesterday was my little sister Bryony’s birthday. Her favourite place is Wells-next-the-Sea so where else would we go?! We were planning to go on Saturday but had a last minute change of plan because of the weather forecast.  We ate seafood and fish and chips on the harbour wall and had ice cream at the beach café!

I think one of the good things to come out of this situation is the necessity to be more spontaneous. It is always nice to have things to look forward to of course, but it can’t be detailed plans at the moment. There are too many unknowns. Plans at the moment are more about a commitment of time than a commitment to any particular activity.  We plan that we will spend time with people but that time may be spent walking on the beach or sitting in a café or sitting on the sofa at home.  The one thing I hate is the caveat that if you’re not well, I can’t be with you.  I really hate that.  It feels like saying ‘I’m the only one allowed to be unwell’.

Luckily our friends and family are totally understanding and relaxed with it all, the level of unconditional support is totally humbling and I am grateful for it every day.  We have loads of visitors lined up to come and do whatever we feel like doing when we’re together and that network of support is what will bring us through this.

Again, I thank you 🙂

Talk to you soon

Lots of love Mand xxx

 

 

OK so I know this was only the second dose of chemotherapy and that I was lucky to have sailed through so easily on the first one but I’m not very good at this ‘patient’ thing. In fact I have already run out of patience.

I know how important it is to keep my hydration levels up to keep the chemo flowing and to aid my digestive system and I’m sure there are loads more benefits that I don’t even know about. The thing is at the moment, drinking adds to the nausea.  I feel ‘slooshy’ I can’t think of a better word.  Eating helps but there is only so much even I can eat!!

My mum’s remedy for any illness when we were younger was always a banana milkshake.  This was made with a banana, a scoop of vanilla ice cream and milk whizzed up in the liquidiser – perfect.  I recently saw something on the TV about hydration and they found that milk was the most effective re-hydrator after exercise.  Bananas aren’t great at the moment because they can ‘slow the digestive transit’ and with all the anti sickness drugs, I really don’t need any of that so a different approach was required.  After a brief discussion, we plumped for strawberries and mango… a triumph!

Big sis Booie recommended grating some root ginger into my water which is what I’m sipping on at the moment and that is going down quite well so hopefully we have some progress!

It is little sister Bryony’s birthday and I am so glad that we’re going to spend the day with her and Chris, Amelie, Dad and Chris so really want to be feeling fabulous, and I’m sure I will 🙂

Talk to you soon

Lots of love Mand xxx

I just have a really quick update to today to let you all know that I have been feeling much better today.  The anti nausea drugs have kicked in and with the aid of my trusty nap after lunch I have been for two walks with Phil and Dude and eaten probably more than I should have!

My knights in shining armour last night were armed with swords rather than jousting lances and were more determined than ever, excited to be revitalised.. let the battle re-commence!

Talk to you again soon

Lots of love Mand xxx

Today I had my second session of chemotherapy.

It didn’t start well, my white blood cell levels were a bit low in the test I had on Friday and I had to have a second blood test this morning before I could have the chemo.  The three week cycle has obviously been fine tuned over time.  Sam my nurse today said that the count often bounces back up in the last couple of days and it had so we were good to go.

The routine was much the same as the first time interspersed with people telling me they loved sugar!!  As I said, Sam was my nurse this time.  We had a bizarre small world connection, well several actually…

• Sam is from Chesterfield originally – near where Mum and Richie live
• She knows Matlock well (her parents walked around the beautiful park when they were courting) and the Strand restaurant – Where Phil was head chef when I met him
• Sam went to Leeds university and lived in Headingly – the same as my little sister Bryony
• She worked at Addenbrooke’s hospital, Cambridge – where my first two full-time jobs were
• and she lived in Ely – the city near where I grew up and where I went to sixth form

Needless to say, we didn’t run out of things to talk about 🙂

When we got home I felt really tired.  Phil made us a lovely lunch and I went for a nap.  Then I made a mistake.  I knew that last time, the nausea came on a bit like motion sickness when I was moving around so I decided to sit still.  The trouble is that when I then got up to do something, the nausea kicked in hard.  I took the second nausea drug straight away but the nausea had already taken hold.

I sat outside like an old lady (Phil says I looked more like a caterpillar!) with a blanket wrapped around me to get some fresh air while Phil took Dude for a walk then he made us a delicious chicken curry (still no issue with my appetite!) and I am now feeling a lot better.

I think an early night is on the cards and I’ll feel much better tomorrow.

Talk to you soon

Lots of love Mand xxx

 

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