Month: December 2015

So here I am, sitting in the hospital having my zolderonic acid bone strengthening treatment soaking up the luxury of a few minutes with my own thoughts. We have had a lovely week of visitors for Christmas, I have been embarrassingly spoilt and pampered… I am definitely not complaining ? My energy levels are at last starting to improve and I am feeling much more positive.

Here in the hospital today I am surrounded by other people in different stages of cancer treatment. Some are at the beginning of their treatment, others are veterans, all have an energy that combines determination with a little fear. It may be because of the time of year or just my lifted mood but today the energy is particularly positive!

Our next visitors arrive tomorrow so we have a day to ourselves, replenishing stores and energy ready for the next dose of festive fun.

I hope that you are all having a peaceful yet fun time and I look forward to catching up with you in the new year.

Talk to you soon

Lots of love Mand xxx

 

Hello!

I spoke to my Mum today and she said ‘Darling, I don’t mean to put pressure on you but my friends are starting to ask if you’re ok…’

I am sorry for not posting for so long.  The love and support I get from all you blog readers is so important to me, I won’t take that for granted.

The main reason I haven’t blogged is because I have been struggling with my energy levels, which in turn lowers my mood, I struggle to get motivated and then it becomes a vicious circle (which, thankfully, I feel as if I may have broken now).

I think that we all feel extra pressure to be all things to all people at this time of year.  Our family and friends have been such a huge support this year that I feel as if I owe them more than ever but my energy levels do not live up to my intent and I am left frustrated.  I have accepted that Christmas will come whether I am ready for it or not so now I’m going with the flow 🙂 and that’s not to say that I haven’t had any fun!

We had a lovely time with Dad and Chris.  Chris helped me to put up the Christmas decorations which made me feel as if we were at least starting to be ready for the festivities!  I also had a lovely meal out with my group of ‘birthday girls’ to celebrate Kerry’s birthday last week.  As always, it was great to catch up with them all.

I have been visited by some of my cousins that I hadn’t seen for years which brought back lots of lovely memories of my youth and rekindled friendships that I know will last.

I have also started talking to my boss et al about a phased return to work so that’s something really exciting albeit a little scary for the New Year.  I think it will help me to get some structure and responsibility back into my life.  This situation has taken so much out of our control as I have talked about before however, along with that control is responsibility.  If you can’t control something, you can’t be responsible for it; that can result in feeling a lack of purpose and I think that could also have been contributing to my low mood.

On the medical front, I have had no more issues to report which it brilliant 🙂 and my Doctor and Oncologist have agreed to switch me to an oral medication for the prevention of future blood clots so no more injections – Whoop Whoop!  That was a lovely Christmas present!

We have a very busy 10 days starting tomorrow as I am sure many of you have too, but I will post again soon.

All that remains is to thank you all, from the bottom of my heart for your love and support this year, we really do appreciate it and I hope that you all have a fabulous Christmas or at least enjoy the party spirit if Christmas isn’t your thing 😉

Talk to you soon

Lots of love, Mand xxx

 

On Wednesday I had a big adventure!  I told very few people about it in advance because I wasn’t 100% sure I wouldn’t chicken out and I didn’t want to look like a wimp (although I am quite aware that I am a bit of a wimp at the moment… I’m working on it!)  It’s another on of those ‘in my old life I wouldn’t have thought twice about doing it, pull yourself together Mand!’ moments.

I went to London, on the train, on my own!

A while ago I was having a look at the Macmillan website, as you do, and came across the ‘Cancer Voices’ section.  Cancer Voices are people from across the UK who have all been affected by cancer in some way. They share their experiences to help shape cancer services and improve cancer care.  As a volunteer, you get to see lots of different opportunities from completing surveys to reviewing booklets/information documents and attending focus groups.  I signed up and the first few opportunities were in other parts of the country or not for people with my experience (wrong type of cancer 😉 ).  Anyway, one came up for a focus group on some preliminary concept ideas for rebranding of the Macmillan Information and Support centres.  When I saw it on the list I was really excited so I checked out the location, it was close to Liverpool St Station (which is where the trains from Norwich arrive in London), big tick.  Then I looked at the timing of the session; 14:00 to 16:00 avoiding the rush hours of travel, another big tick so I decided to register an interest.  You’re not guaranteed to be accepted so I had nothing to lose by registering 😉

Then I couple of weeks later I got a response, ‘we’d like you to participate!’ Cue the spooky music!!!!

I have always been interested in how focus groups can work and as a FastWorks coach at GE it was something I had learned and heard quite a lot about but I had never been directly involved in one from any perspective – how exciting – however I still had doubts about my ability to get there and do it…

I accepted the invitation, it took me a couple of weeks to actually book the train but once I did I knew I was committed and had to make it work somehow 🙂

And I did!  I caught the 11:45 train from Diss.  I agreed with Phil that even though it was only 5 minutes from the station, I would take a cab to the venue so I didn’t look like a tourist!  Fortunately, the taxi driver was very honest and told me exactly how to get there walking, it was literally 5 minutes with only two turns, both at T-Junctions! So I set off walking.

He said ‘look for the TEA sign’  I did get a bit worried when I thought I should be able to see the sign and couldn’t see it amongst all the other signs then I looked up a bit!!

The focus group didn’t disappoint – especially as I made a new friend Anita who I’ll tell you more about another time… I have rambled too much today already

Anita walked me back to the station and I got home safely, of course 😉

Dad and Chris will arrive any minute for the weekend which will be delicious (they’re picking up a curry on the way)!

Talk to you soon

Lots of love Mand xxx

 

 

It is 5 days since my last blog and I have had 3 lunch events in that time!

You must all know by now that I love my food.  Somebody once asked me (when I had had a few drinks (in my defence!)) if I would have been attracted to Phil if he wasn’t a Chef… I had to think about how I would answer 😉  One of my favourite thing to do is go out for lunch.  It always feels so decadent and to be honest, at the moment I’m much better in the daytime than the evening, I am still running out of energy too quickly.  That said we decided to go out for lunch on Thursday with Mum and Richie, we went to Yo Sushi (sorry Zora I feel like I have cheated on you but I’ve missed it so much!!).  It was Phil’s first time (he’s not a fan of fish…) but the teriyaki beef was right up his street – I am ridiculously excited about that because I think he’ll probably let me drag there again some time!!

Friday morning Mum and Richie left for home and we had a gentle day of relaxation.  I made a birthday card for my friend Yvonne.  Just as I tidied away the compulsory glitter I realised that I had spent all that time making a sparkly ’70’ when Yvonne was about to turn 80! Who said the drugs don’t work?!!

Saturday we joined Yvonne and her family and friends for a lovely lunch.  It was a fabulous celebration of Yvonne’s life so far and we felt honoured to be a part of it.  The fish pie was delicious 🙂 and it was good to see some faces I hadn’t seen for a long time.

Today was the third lunch, our friends Rachel and Andy came to us for a bowl of Phil’s finest leek and potato soup made from our home grown leeks yummy.

Three very different lunches, all hugely enjoyable.

I am feeling good at the moment, I don’t think I’ll ever get used to it but the tummy injections are becoming less of an event now and I have written my Christmas cards so I can breathe for a couple of days!

Talk to you soon

Lots of love Mand xxx

 

I have been thinking about how best to explain our meeting with Dr Alexander the oncologist today and my sister in law Ellen has summed it up beautifully.

‘It’s not black/white or good/bad news, there is a lot of grey and as long as it is a paler shade of grey then we can all breathe a little easier’

The tumour markers are creeping back up but Dr Alexander is not worried about it.  She has requested a CT scan so that we can keep an eye on the tumours but nothing demands a change in approach 🙂

Of course, we would have loved for her to say that the markers had continued to go down since the chemo finished however, I am feeling good at the moment and I’m not in pain so the situation could be much worse.

On a lighter note, I had a lovely morning with mum, we went to the local garden centre to get a ring to make a Christmas wreath.  They didn’t have any but we managed to find a few tacky festive trinkets to buy! We had a quick lunch at home before Phil and I headed off to the city.

We had a massage booked at the Big C before the hospital appointment.  As always we received a warm welcome and Rachael looked after us – I had gentle reflexology and Phil had a back massage… lovely 🙂

There is so much to be thankful for.

Talk to you soon

Lot of love Mand xxx