What the FEC

Hello there ❤️

I thought I’d check in with you all to let you know that I’m still doing really well.  Yesterday I had my three weekly visit to the hospital for my bone treatment and to get the next cycle of capecitabine tablets; my liver and kidneys are performing beautifully and the markers continue to rest comfortably in the normal zone 😁

The last time I wrote, I told you that I was having a break from the capecitabine for our holiday to Spain.  Having that break of one cycle was really fantastic!  Within a couple of weeks I could tell that it was really getting out of my system (my usual cycle is 10 days on, 11 days off).  My energy levels improved and my mood lifted.  I’m not saying I was in a really bad place but I was struggling to motivate myself to do anything; even things I wanted to do.  It had become very easy for me to watch the day pass by from the sofa.  The week before we went to Spain I think I did more than I had in the previous 6 weeks combined.  I even made myself a new tote bag for the beach!  You can see it in this glamour photo of me ‘sunbathing’ in the shade wearing factor 50!

We had a fabulous holiday and that holiday feeling continued for weeks with lovely visits at home from many friends and family and the amazing weather we have been having ☀️

The best news though is that the break from capecitabine did not impact the marker levels and so far I have been able to manage the hands and feet syndrome and other side effects well.  I am delighted at the prospect of being able to take another break at some point of time in the future!

I hope you’ve all had an opportunity to enjoy our fabulous summer too ❤️

Talk to you soon

Lots of love, Mand ❤️

I feel a bit like a naughty catholic school girl who has missed confession too many times!!  I am really sorry if any of you saw my absence as a sign that something was very wrong, I have agreed with Phil that if anything really bad is going on and for some reason I can’t get to my iPad (and things would have to be really bad for that😜) he will log in and let you know.  From now; the old “no news is good news” saying holds true ❤️ But whilst I’m here I may as well give you some news!

I can hardly believe that we’re half way through the year already.  The barley in the field behind our house is already taking on a golden hue and we’re eating freshly picked strawberries every day 🍓  I have to admit I think I went into myself a bit for a while.  I had a subconscious awareness that the statistics for my diagnosis say that the average life expectancy is 3 years and I ‘celebrated’ that anniversary in April.  Now if I’m honest; outwardly, I have never thought that would apply to me because the patient has to have actually died to be included and more of us are living longer and fortunately we are yet to become statistics.  Also, I have great faith in my medical team, family and friendships and couldn’t see how it could be over, not so soon.  And it really does feel ‘soon’, the time since my diagnosis has simply flown by; so much so that sometimes I feel like it is running away from me.  I always have more things to do than I have time or energy for which can be frustrating.  I do not allow it to get to me though, mostly, but then I have times where I feel like I’m wasting time relaxing and sleeping when I could be doing something more constructive but I have to accept that my body needs time out and right now that is the best way to love myself ❤️

I have had my oral chemo dosage reduced again and my markers remain ensconced in the ‘normal zone’. I now take it for 10 days and have 11 days off which is a psychological boost, a personal mini win along the way.

We were at the hospital today to see Dr Alexander and to have my bone treatment.  My marker sits at 21 this week which is great (anything below 35 is considered normal) and all the other things they measure are in the normal zone including my liver and kidney functions.  We’re going on holiday in July and I asked if I could have a ‘holiday’ from the Capecitabine and she said yes! So I don’t have to take any more until we get back which will hopefully result in me having a bit more energy and less of a chance of a flare up of my feet and hands can I hear a whoop whoop?!!  The nurse who administered my bone treatment today was Helen, she is relatively new to the department and doesn’t work Fridays (my usual treatment day) so I hadn’t met her before.  When I asked her about my bloods she took a double take because she wasn’t expecting them to be that good!!!

Throughout everything I have always managed to do a Laughter Yoga session in Hempnall on a Friday morning even when I haven’t found time to write a plan and we play a game of lucky dip selecting the laughter exercises randomly from my Tibetan bowl!!  The ladies who come are another crucial part of my defences, the love and laughter we generate in that room is magical 😁

Please be happy and remember to love yourselves

lots of love

Mand ❤️

Unfortunately, my body doesn’t get it!  Don’t get me wrong, I’m much better with this reduced dose, but I’m still struggling with my energy levels.  My hands have finished shedding skin and although they are still very sensitive, the lashings of cream I have been applying is definitely holding back the next peel (for now 😁). My feet have been peeling; I would have shared a picture but my Mum said it didn’t look very festive!!!! Having no fingerprints has its issues (I’ve had to switch of the fingerprint recognition on my tech!) but having shiny new skin on my feet means that we have had to invest in a shower mat to stop me sliding around on the smooth surface when I’m in the shower, not something that had crossed my mind!!!

This week I have been to the hospital twice.  On Tuesday afternoon I literally had air blown up my bottom!!  I won’t go into too much detail but everything is fine; I am going back on January 7th for them to have another look, for which I have been prescribed a diy enema (I know – people pay for that, especially just after Christmas!!!) and does anybody know how old you have to be before farts stop making you giggle?  The second visit was Thursday afternoon for my bone treatment and the issue of my next cycle of oral chemo.  My bloods were good, my markers have dropped again and now sit at 29! Whoop whoop 😁  Pip my oncology nurse was however not happy with the look of my feet and has given me an extra week off to give them a chance to recover and I wasn’t going to argue 😉

I have managed to make some Christmas cards and presents (Black’s bag and box emporium is still trading… just!) and where in previous years I would have been stressed out, I know that I will be surrounded by love regardless of the number of gifts I’ve made ❤️.  I’ve put a photo below that Phil took of me sewing… I only sewed my gloves into my work twice 😂

And finally, I would like to wish you all a peaceful Christmas surrounded by love, and hope you can find time to do something that fills your heart with joy 😘

Talk to you soon

Lots of love Mand xxx

 

I have now completed 3 rounds of the Capecitabine (also known as Xeloda)

I should be into my 4th round but I had to take an extra week off because the side effects really got hold of me. The Hands and Feet Syndrome (HAFS) got quite bad when we were on holiday in the ‘off’ week of cycle. My feet and hands were really sore making it difficult to walk but fortunately it wasn’t too far to the restaurant and it provided a great excuse to buy new shoes! It also got to my digestive system and my mouth, so no spicy food ☹️ and no trips too far from the conveniences! Swimming in the pool and sea was a fabulous release from the soreness and of course, being cosseted by my fabulous family (we went with Dad,Chris, Bryony, Christopher and Amelie) made for a really relaxing and restorative week.

I began the third cycle of treatment on the last day of our holiday and braced myself for the onslaught!

At the end of the first cycle my markers had remained the same as the previous blood test, at 58.2. That was the first time they hadn’t increased since February so although it was too early to really tell, I knew it was having an impact on the tumour activity. I had the next blood test on Monday November 6th. I spoke to Pip my oncology nurse on the Thursday, one week into cycle 3, she told me that my liver and kidney functions were still good and that my markers had dropped! After 2 cycles it had dropped to 41.2 – amazing!

Mum and Richie had come to house sit and look after Dude while we were away and they stayed on with us for a few days so that we could spend some time together which was lovely. Mum found some amazing and cheap insoles that are just a thin piece of memory foam.  They are perfect as they don’t have a layer of fabric and my feet have been so sensitive that the threads of even the softest socks were irritating me.  Needless to say, I now have a stash of said insoles – I even have them in my slippers and I only wear socks after I’ve put lashings of cream on my feet. I have also invested in a multi pack of cotton gloves to do the same for my hands.  It’s a great look!   I’m doing it three times a day now, after my morning shower, when I have my afternoon nap and when I go to bed and it’s really helping.

When I went to the hospital last Thursday I had my bone treatment and then I met with Dr Alexander. She wanted me to get better before I start the next round and I have to admit I was really relieved.  What made it even better was that my markers had dropped again and I’m already back in the normal zone at 33.8 😁 she has also reduced the dose going forward.  That has really helped me mentally; I know that this drug has the potential to be a long-term defence against my cancer but I honestly could not imagine living with these side effects for any amount of time.  At the end of cycle 3 I basically spent 3 days on the sofa with my feet up, for almost two weeks I was unable to do any craft or cooking, having to get Phil to cut up my food and the most surprising  thing was my loss of appetite (shock horror!!).  I have lost half a stone since starting this drug and although I have plenty to go, it’s not really part of the plan at the moment.

I did need the extra week for recovery though, the swelling in my hands has gone down and my feet feel almost normal! My hands are still quite sensitive; the dead, dried skin is peeling off but it looks worse than it really is!  I’ll pop some pics below! I have now got my appetite back so nothing is safe in the fridge!

I did manage to do a couple of special Laughter Yoga sessions.  The first was at the big C – they had an open day and 40 people joined me in a short session which was amazing and then to crown it all, I got to do a session with the nurses on the Weybourne unit (where all the chemo and bone treatments are administered).  It was just amazing to be able to give something back ❤️

As always, thank you all for your unerring love and support

Talk to you soon

Lots of love Mand xxx

Fat fingers!

Peeling skin…. no fingerprints again!

Happy graph!

Last Thursday I went back to the hospital for my bone treatment followed by a check-up with Pip my oncology nurse. You may remember that she was nominated as my nurse right back at my first meeting with Dr Alexander. I have luckily not had much at all to do with her because I have been so well but now I will be seeing her every three weeks to have my chemo pill issued. I’m sure we will soon build rapport!!

Pip asked me how I had been getting on; I had a bit of a burning sensation in the soles of my feet but have continued to apply the udder cream morning and evening topping up with an organic blend of coconut oil and beeswax (which was made by my friend Hajira) during the day. I did have some tummy gripes but had to continue with the laxatives throughout 😂😂 she said get some Imodium, you will need it! challenge accepted!!! I have got some but I’m not expecting to have to use it 😉. I did get some sores inside my lip towards the end of the first two week cycle. It seemed to be antagonised by chillies so I may have to abstain from spicy foods one week in three. You know that will be hard for me however, it’s a small price to pay in the grand scheme of things.

The good news is that my amazing liver is still functioning perfectly and everything else looks good so I got my next package of chemo pills to take for the next two weeks.

It’s now Tuesday so I have been taking it again for 4 days and so far so good on the side effects. Hydration is key, I have been drinking water with fresh ginger and lemon in it which really helps with the nausea and my feet are feeling good so far.

Unsurprisingly, I have been taking a nap in the afternoon more often than not. It seems my body’s key coping mechanism is sleep and I don’t feel the need to fight it. If I don’t nap, I feel it in the evening – I can push through but I pay for it the following day. It is what it is, and as long as I keep it in mind when making plans it’s totally manageable and let’s face it, I have always loved a nap 😴

Last weekend I travelled up to Leeds on the train with Dad and Chris to stay at Bryony and Chris’s and go to Amelie’s 3rd birthday party. It was a ‘princess’ themed party and we all dressed up! I love fancy dress! I made a Princess Poppy (from the trolls movie) costume with the help of my mother in law Joan who was visiting us the week before. We had such fun!!

And here I am now on the train again but this time to Chesterfield to spend a couple of days with my Mum and Richie, I will be doing a Laughter Yoga Session tomorrow afternoon with the teachers at a local primary school – it will be interesting… it’s the first time I’ve done a session with people who have been told rather than chosen to attend!!! I know I’ll love it whatever happens 😜

I can’t end this post without saying another huge thank you for all your love and support. As you know, I am quite needy. I like positive reinforcement, it inspires and energises me. I wasn’t at all prepared for the amount of love I received after my last post, by way of comments, cards and personal messages I was totally awash with love and for that I am truly grateful. There was a niggle in my mind that I’d left it too long and that you would all be bored with me but you have stomped all over that niggle and I am buoyant in my bubble of love, planning to last longer with this treatment than I did with the tamoxifen! Thank you, you fabulous people.

Talk to you soon
Lots of love Mand xxx

This was my costume!

Firstly, thank you for being so patient during my silence since May.

I had started to write a post several times but was struggling to put into words what I was thinking without sounding like a wimp. Of course, you probably wouldn’t have thought that but; that thought was powering my procrastination. As always, not doing something usually leads to bigger issues and now I have to write a blog that I really don’t want to do but here goes.

One of the drafts was entitled ‘the pressure is real – even when it’s generated internally”. This was to talk about the fact that I was struggling with work. I felt really bad about this because everyone at work, without exception was so supportive but still I found my self confidence and energy sailing off into the sunset. Long story short; I was re-assessed in mid June by the occupational health representative for the income protection insurance company and instantly signed off. This was a huge relief, in fact it was the relief that made me realise how much it had been getting me down.  At the same time, it felt as if I had failed and I think that’s what made it difficult for me to talk about

Since then I have been finding things to keep me busy particularly with other people because the solitude being at home all the time was one of my key issues. When I’m engaged in an activity with other people I become more energised instantly!

Then at the end of June I went for my routine visit to see Dr Alexander my oncologist. My markers had been slowly creeping up since February. She wasn’t worried because they were still in the normal zone but scheduled a CT scan as it was a while since my last one. I had the scan on August 31st and went to get the results last Tuesday.

Although it could be much worse, it’s still not great. I have tumours growing in my liver again. I’m sorry, I didn’t ask the right questions so I don’t know how big they are or if they’re new ones or the original ones growing again but I will find out in 2 weeks! We have kicked the tamoxifen into touch as it’s obviously no-longer working for me and I am taking a tablet form of chemotherapy called Capecitabine. It is essentially the F of FEC. It turns into F once it has dissolved in my stomach. I have to take it twice a day on a full stomach and will take it in three week cycles, two weeks on and one week off. My bone treatment has been drawn back into a three weekly cycle to line up with it so that I’ll go in for that and be assessed and re-issued the chemo pills for the next two weeks. This will continue for as long as it works.

I’ve been taking it for a week now and although the side effects are pretty much the same as all chemo but less powerful so for instance, my hair is likely to thin rather than fall out completely, I’m feeling good ?  Dr Alexander said the side effects I’m unlikely to be able to avoid are dry, cracked palms and soles of the feet and “loose bowels”! She recommended Udderly Smooth – a moisturiser based on udder cream (which has been used in my family for years since my grandparents were dairy farmers!) and that I stop taking my regular laxatives.  I have been slapping on the cream but I have had to start taking the laxative again!  Chris asked me if I had concrete in my bowels ??? what can I say – my cast iron constitution is looking after me!

I’ll keep you posted on progress – in the mean time: here’s a photo of me and Phil taken when we were up in Derbyshire for Mum’s 70 at the beginning of August… look at all my hair!!!  We had a really fabulous time and managed to catch up with lots of friends and family which was lovely ❤️

Talk to you soon, lots of love Mand xxx

Throughout my working life I have used the phrase ‘ignorance is not an excuse’. Many times when a process has failed the answer to the investigation has been “I didn’t know I was meant to/not meant to do x,y or z”.  This sounded the alarm for lack of ownership and could quickly descend into judgment “you are responsible for the process, you should have ensured you understood it” “communication is a two way street” etc etc etc.

I’d like to think that I would react differently in the same situation now.  I learned whilst in India last year that the word ‘should’ is very damaging.  The instant that word is used it says you did something wrong, I am judging you (that ‘you’ is the person you are talking to which includes you when you’re talking to yourself! (My proof-reader Phil will hate all those ‘you’s!!)).  I’m sure I’ve mentioned how important I think it is to use positive language when we speak to ourselves with our inner voice before so I won’t go on about it!

Anyhoo… I’ll get back to the point which is; it can be good to not know some things.   Like when you receive the news of a cancer diagnosis, the general advice is to stay away from google and every parent I’m sure at some time has wondered what their teenagers are up to and then thought better not to know all of it!  I was thinking about how we all know that anything could happen tomorrow, we don’t know what or when, people often remind me of that if I’m feeling a bit sorry for myself but there is a fundamental difference for someone who has received a terminal diagnosis of any kind.  I have struggled to express it in the past and this week I had a lightbulb moment ? It’s like there is a dingy corner in the bathroom that could have a spider in it, it doesn’t mean there is one, just that there could be.  That is the pre diagnosis situation.  Then one day, a giant poisonous man eating spider creeps out and looks you up and down.  Now we know there actually is a spider!  The thing is, the spider can go back into the corner, hidden from sight but we now know that it’s there, whether we can see it or not, it’s there just planning its next move.

The great news is that I am no-longer afraid of spiders I just have a healthy respect for them ?

Talk to you soon

Lots of love Mand xxx

April the 7th marked 2 years since my diagnosis. I only remember those early days as a fog. I don’t think it really sank in for a few weeks which was a good thing , it gave me time to come to terms with it more gradually.  What I do remember about that time is that I was instantly aware how precious every minute is and vowed to appreciate every one.

I have been on the most amazing roller coaster ride for the last two years full of highs and lows.  I am grateful that with the support of all you fabulous people and a great, caring medical at the hospital and the big C there have been many more highs than lows.  I’m closer than ever to living in a mindful state, focussing on the present and not allowing my thoughts to unsettle me.

I had a conversation with a new friend from my Hempnall Laughter Yoga Club.  She has volunteered to let me train her so that she can run the club when I’m away and I thought I should tell her about my diagnosis.  I said to her that sometimes I almost forget that I have cancer.  Almost is the key word… I never really forget, it is always there but I think that’s a good thing and I’ll tell you why (of course!).

First, let me clarify something.  In the early days, when the reality of my diagnosis snuck up on me it was terrifying.  A wave of anxiety would sweep through my body leaving me feeling as if I was just about to fall off a cliff, holding on by my sore fingernails, not knowing if I would ever feel stable again.

Now when it sneaks up on me, I’m not afraid.  It just reminds me to appreciate every minute (and to stop eating sugar and junk! Some habits are harder to break than others ?).  It also reminds me to fight slipping back into a blur of busyness allowing the days to disappear without making any conscious connection with anything or anyone – even myself – it still happens way too often for my liking but I am working on it ?

I have a new nurse today, her name is Becky – she commented that it’s difficult not to smile when talking to me; she said my smile is infectious!  When I told her that it’s because I do Laughter Yoga she said ‘well I thought I’d heard everything!’  ? I really do consider myself so lucky.  I’m having my bone treatment this morning and the team are great.  It’s my first time in the newly renovated treatment ward – it’s so bright and welcoming and I’m glad for the nurses, this is a really tough job and they deserve to have an uplifting environment to do it in.  But mostly I feel lucky that I feel so well.  Through that cloud two years ago, I couldn’t have imagined feeling this well two years down the line; and in particular enjoying life as much as I am.

Thank you for being there and listening to my ramblings; I really do appreciate your support.

Talk to you soon

Lots of love Mand xxx

 

Some of the lovely artwork on the newly refurbished wall!

Continue reading Update from the sun!

This afternoon we have been to see Dr Alexander my oncologist for a routine appointment.  It was reassuringly uninteresting and brief ?

My markers continue to sit well within the ‘normal’ zone and the detailed report on my latest blood test shows calcium levels and liver function sitting within the normal range in all cases.  So after an examination (read as feel) of all the relevant areas and an examination (read as listen) to my chest and lungs we were out of there!  So quickly in fact, that the car park was free!!

I did just stop to pick up my graph ? and make my next appointment for 4 months time.

I don’t think things could be any better.

Talk to you soon

Love and laughter Mand xxx