Friday, 3 February 2017

Busy couple of weeks... and Disney is a week away!

Well gang, It's been a busy mental couple of weeks since We told everyone the full scores on the doors, started the crowd funding and booked Disney, and in that time there have been some significant changes in my treatment plan and things and a lot of frustrating visits including appts and admissions.

So lets start at the beginning..

15th January - We enjoyed our family day our at Bletchley Park which was great but following om from the previous week when I had seen the Oncologist I notied my eyes had got worse, over the course of the next 2 days they went massively worse and a call to the Rennie Grove nurses who with my team at the hospital acted very quickly.

By Wednesday 18th I had been for my regular bloods for Chemo, My friend Gina and I had just settled down for lunch when I was told due to the swift deterioration they wanted me seen in A&E that day.. So we finished our food, and pottered back to L&D. We were fast tracked but 4 hours later (and one dishy doctor later) had a new MRI on my brain  to look forward to on Thursday morning and the new issues that my own oncologist has only ever seen in four other cases.. liesions on my retinas causing the vision to be awful and the need for my super lovely reading glasses.

Thursday 19th January MRI and a lot of waiting (4+ Hours)  around for the Chemo team to speak with the Oncologist Chemo was delayed and I was to be reviewed on the Friday...

Friday 20th January - Jo and I went for the morning appt with the oncologist again.. armed with a long list of questions we needed answers to but didn't really want to hear about too..
A new plan was hatched and I was sent to Mount Vernon for the first of 5 sessions of daily radiotheraphy that afternoon including the planning phase, another long afternoon but a plan and progress was back in place!!!

As part of radiotheraphy to the brain and eyes I had a beautiful and very claustrophobic gimp mask made for me! What a treat! It constricts you to the bed and holds you in place while you are blasted. Luckily the blast it's self takes no more than 10 minutes really.

My appointments were mainly scattered at rubbish times for having family but we got round them with various help,.. and of course the fog was terrible the days we had teatime appts!

We managed a lovely weekend cacthing up with a big group of friends for curry Friday night, a spot of parkrun including baby cuddles, chilled out Saturday, Photo walk sunday, got rid of my car sunday and went for roast dinner with family in the afternoon..

Other changes which have been keeping us busy is that due to steroid use to manage all the other side effects of my cancer by blood sugar has been very high, although I am NOT diabetic I am now being treated as such and Adam has been having to help me monitor my blood sugars.. on Tuesday night after more out of hours support from the Hospice and out of hours GP I was admitted  via A&E for 20 hours... poor Jo took me in and there was a distinct lack of any good looking Drs on duty.. very disappointing.  Eventually I got a bed and Jo left me bleary eyed at 2am,,, always grateful to my sister for taking care of me and protecting me.

On Tuesday am I had my Chest and Abdo CT scan ready for working out the treatment plan Post Disney with the Oncologist this afternoon.

The admission was not a great one, I'm always happy to shout about good service saidly this was not!
Gina and Heather came to visit, and were just in time for the insulin pen lesson.. and to see the nightmare I was having with my mad (bless her.. I was ready to ring her neck) ward neighbour and deliver me a cup of tea..

So that is where we are at. I had one thing planned in this week to look forward to and that was a trip to see 'The Girls' which is just opening in London this last couple of weeks and finishing it's previews.. that was for last night and to really make sure I was going to be up to it I left the decision on it we would be going until lunchtime, and then booked the taxi door to door.. a great way to travel and made the evening possible with my friends.

Disney is now one week away.. super excited and lots of rest next week to really make sure I can be in the right place ready and rested for it. Packing will get underway today ready, along with hoodies arriving for us all ready to remember the trip which are staying a surprise for the boys until we arrive now.

So onwards and upwards, after a rough 2 weeks, cinderella did get to the show.. food is very boring avoiding un-needed sugar so no wine and cake and goodies at the moment really, but I continue to plough on and make the most of what ever I feel well enough to do while taking enough rest on to not miss out on the super important stuff!

Wednesday, 11 January 2017

Blown Away!!!

Oh My! Adam and I have been absolutely blown away by the support, love and messages since I wrote the blog on Monday evening and even more so since the crowd funding page last night. we can not thank you all enough for your kind words and making disney happen for us. We've not told the boys's all happened so fast!

The irony is certainly not lost on us that today is the anniversary of my 1st Chemo selfie with Jo... how long ago that all feels.

So all we can say from the bottom of our hearts is thank you!

We have also been blessed with lots of kind offers of all sorts of things that will make amazing memories..

Obviously we have already done the build a bear which has been a big hit with Luke and he is taking Mummy bear (mine to bed with him) and traded one of his old bears to sleep with me!

But some amazingly kind offers of practical help and making memories and momentos which is just amazing.

SO thanks go to the following for:

Everyone who has given and shared the crowd giving page... amazing.. lots of your messages on that have caused leakage in a nice way

- Kath who is coming to help the boys with making memory boxes.
- Carli at Mac&Maddy who already made a beautiful present for Adam for Christmas after the order books closed and is doing the finger print keepsakes for the boys for me.
-Glenda at GC Craft Cabin who we are visiting next week to make pottery as a family.
- Noemi Dorgu who is taking a walk with us all and her camera to capture some family time at the weekend.
- Carl who I am yet to fully chat to but we have a plan that may come together.
- Adam B who has put feelers out re Disney..

so things I have booked up already are:

Sunday family time walk and a trip with Nana and Pops to Bletchley Park
Tuesday - Spa day with Jo! then Jake and I are off to a Parkrun celebration evening with Kate and Ash
Friday - Date lunch at Luton Hoo for Adam and I
Sunday - Girlie Take That Evening while Adam is out at a gig too.
Feb Half term - Disney Paris!!
18th Feb - Family canal boat trip with my brothers and families and Pappy and Grandma with fish and chip delivery!

So already lots of nice plans that are in the making.. and so many more in the pipeline...

Oh and Adam made another lush meal from our fresh tasty box last night too... so the skills are improving!

Monday, 9 January 2017

Bit of a shocker..

So on the whole I've not been completely honest with you all! Todays blog is brought to you by the power of alcohol and chocolate..

All my nearest and dearest know that on the 2nd of December we got more information that I let on. It's taken time to get our heads around this and certainly knowing where to start with certain things!

On 2nd December I was told that my persistent cough is actually secondary  cancer in my lungs and liver,

All the staging tests (MRI's and CT's along with bone scans) were redone the same as last year and on the 13th December the news ramped up again and it was indicated to me that time is going to be very precious with my beautiful family and friends,

All the results are in that matter now and my care is long term.. again not a concept to want to deal with 12 days before Christmas. We kept the whole picture quiet from the boys until after Christmas so that we could all make the most of the family time, and we certainly had a wonderful relaxing one catching up with so many special people over the festive period it was really magical.

Cancer has once again given me quite some insomnia so I've been up in the middle of the night, organising and planning, tidying and doing all the things you never round to doing!

As a bit of a spoilt brat and diva this doesn't sit well with me as I just want more.. More hugs, More time, More everything!

I continue to be blessed with having amazing people caring for me and the boys, thank you!
We are also being supported by Rennie Grove Hospice who have already been to see us and will continue to look after me and us as a family.

Over time Adam will need cookery and ironing lessons and a bit of help learning to be a domestic god! (He's been a bit spoilt it's fair to say!) So I trust you my friends to keep an eye on my beautiful boys.

My Chemo this time round is Gem-Carbo which is being much kinder to me on side effects so far and the aim is to keep me as well as possible for as long as possible. A concept that just seems fairly odd at the moment because I DO feel mostly well. I am on daily steroids to control my cough and backpain. if I get in a kitchen cupboard I struggle to get off the floor which is doing my head in, as is going up the stairs as it is more effort than I think is acceptable!

So you may have seen I made bears with the boys at the weekend, It was about making memories with them and each of the bears has some of my hair inside so that they are all linked and unique.
For Luke especially I think that has been a big part in understanding some of what is happening as Jake is much more aware of what we have told them and what it means down the line.. the hardest conversation I have ever had to have for sure!

So our aim is to try do as many nice things as possible to really create lasting memories together while I am feeling fit and well.. so if you have suggestions let me know.. I need to hear them! 

Sunday, 11 December 2016

We were ready to say goodbye to the year from hell.. and then...

It's amazing how quickly the last few months have passed. and what an incredible few months they have been. We have enjoyed getting back to normal, the boys have settled really well into their new school. They have gone from strength to strength, Jake has recently worked hard with his running and clocked up 2 PB's, currently stands at 24:18 for Luton parkrun.

In September we found ourselves settling into a new routine moving swimming and piano lessons to fit everything into our week. and during September and October until we went on our holiday I clocked up a 50 day run streak. It was liberating to get out running everyday even if just for a mile, but when we went away I had had a cough for a few weeks so decided to take a break and just enjoy our holiday.

We all took part in the Willow race on the 2nd October. Jake and Luke did the 1k race,
Adam did the 5k and I was escorted around the 10k with Pete and Sam to tell me off for going off to fast, pacing myself went completely out the window, I was pleased to have finished the race but for 20 pesky seconds... if only I hadn't taken quite so many walk breaks to get my breath back! I completed in 1hour and 19 Seconds.

As a team the amazing purple parkrunners raised over £1500 for Willow, so thank you all for donating to such a fabulous charity.

I also completed a tough 5 mile race in the pouring rain before we went away, and was chuffed with my time of under 50 minutes. Adam was on photography duty to capture everyone's pleasure and pain!

We went to Majorca for 10 days in half term, enjoyed all that all inclusive had to offer, the weather could have been a touch warmer but it was amazing and just what we needed to really relax and put our feet up. The boys enjoyed lots of swimming; Jake learnt to dive, Luke set himself a daily challenge to see how many trips to the ice cream machine he could manage by lunchtime!
November has passed in a blur, so much so, other than fire works night and catching up with some family I really don't know what there is to report from November.

And so here we are in December!!! How did that happen already?

It's already shaped up to be a busy month, with speaking at the Willow foundation Carol Concert on Tuesday night, a late night leaving the boys very tired! But such a beautiful evening tinged with emotion, from the last year and for what is to come
Willow Carol Concert 

I've made a donation to Willow instead of spending hours writing Christmas cards this year... all our friends near and far are in our thoughts at this time of year as always.

This weekend has been busy as ever, volunteering at Gadebridge Parkrun, catching up with friends and today as a family we completed the Keech Santa run at Wardown Park. A nice stroll round just under 5k with Luke while Jake zoomed off into the distance!

However the final part of this update sees the year finishing off as it started.. Cancer really is the gift that keeps giving. Just as we had found our new normal Adam and I discovered on the 2nd December that I will need to restart treatment before Christmas.

The last week has been lots of tests and appointments to establish the whole story again and what happens when. Last year they were able to give me a clearly defined treatment plan where as this time it's a bit different and we're still waiting on results.

The bat signal has already been used and we are already feeling the love and support from those we have already shared the news with. Challenges ahead again..

Tuesday, 20 September 2016

5 weeks after Active Treatment

It's been just over a month since I finished Radiotherapy now gang, and it feels a bit odd, as I've not had a big magical sparkly moment where I'm declared "cancer free" where everyone bursts into song with the backing track that's euphoric and uplifting like when they get all yes' on X factor or Britains Got Talent!

So in essence I've just been doing what I do best and plodding on in the meantime. There is no end of treatment scan, but I did see my oncologist this week and the surgeon for review the week after. They will be checking and making sure Cilla (my silicon implant) is still happy after Radiotherapy and that any reaction is as they expect etc. I am waiting for a referral to the Lympadema nurse as there seems to be a bit of swelling and without lymph nodes under my arm my body can't deal with draining excess fluid as it should. Something I will always have to be cautious of now. 

So what's been occurring in the last 5 weeks where I've been appointment free..?

In September I pledged to run at least a mile a day each day, partly for a personal challenge not based on times and speed, but at the moment my Mojo is still a little awol, probably because every run is still making me a completely sweaty mess and feels hard. I am looking forward to the time when a 10k is my standard twice a week run and I don't feel like it's been a complete effort! Just a couple of days to go in this challenge.. Followed swiftly by the Willow 10k at Hatfield house where I'll be joined by lots of friends including some who hadn't classed themselves as a runner but have raisen to the challenge for me! Well done Heather! Adam is also doing the 5k and the boys are taking part in the 1k race so we're all supporting.

The link to the purple parkrun team is Here if anyone still wants to sponsor us, and thanks to all of you who already have! 

We raised £228 on purple parkrun day and I admit I got overwhelmed seeing that many people supporting Willow for me! 

Our Special day and promotion of  Willow has also been in the local paper.. Let's hope it inspires a few more people to run for this fab charity. 

I've also taken back control of a parkrun and stepped back up for a go at run directing as well as clocking up a sub 30 minute 5km.. It'll be a while before I will ring the PB bell, but I'll get there eventually! 

The boys and I took a train adventure to Stafford at the end of the school holidays for a belated birthday trip to Cadbury world with Nana and Pops. It was a great day out, but I confess I may have stolen some of the boys chocolate that is still in the fridge calling my name every time I go in there!

The boys are settling in well to their new school which is huge relief! We've rejigged after school activities and have now found our new routine, and we're all looking forward to our holiday in half term. 

The last few weeks have confirmed yet again how nasty cancer is and it's having an impact on several friends and their families at the moment with some tough times in the coming months.. I promise to work my socks off to run a half marathon before the end of the year to stick two fingers up to this year for us all! 

To show how much the hair is growing (and I had a little trim in August!) Here's a little collage!

My nails are also now looking more healthy (and less like something from one of Adam's zombie programs!), so I have booked an appointment to get them looking pretty for our Holiday. 

So with a birthday at the weekend, our big race, parents evening and a holiday on the horizon as usual there is a lot to look forward to over the next few weeks so time to get organised! 

Bye for now

Thursday, 18 August 2016

Phase 3 - DONE!

That's it folks! 'Active treatment' is over! They have thrown all the normal resources at my Cancer and I'm still here to tell the tale! 

So how do I feel?! 

Relieved, knackered, excited to move on and start putting all this behind me but apprehensive for my future health, and a little bit lost..

Having spent the last 248 days being bombarded with appointments.. Always knowing what is next on my treatment plan it feels a bit off odd to be at the end! Don't get me wrong, I'm delighted to be at the end of my treatment.. But I really have a 'what now'?! feeling.. Life HAS changed through this, and coming back out the other side I do still have some appointments to go to, I will see the oncologist again in about a month I think, and the surgeon in 6 weeks to see what reactions have been to radiotherapy and how 'Cilla' is after being zapped by radiation!

There is the possibility that I may need more surgery down the line to get a better result for 'Cilla' but at least this is all surgery I have more of a say in, and I would have more control over when that happens rather than being on an escalator of treatment that I just have to get to the end of, I am at least back in control over if I have the surgery and when.

As I was self employed I don't have a job and a salary to walk back into, and due to changes through the treatment we have decided that the childminding is no longer appropriate so it's time for a rethink, and while I do that I will enjoy a bit of time getting back to doing the things I love and should have been able to do this year. 

I now need the fuel my body again and get back into shape, rather than letting my 'sod it, I've been through a lot recently, I want cake/ice cream/chocolate' attitude continue, as we have a holiday to finally look forward to! Adam, the boys and I are off to Majorca for October half term for some sun, swimming, and relaxation as a family, so there is the matter of being able to get into swimwear and not getting harpooned when I am mistaken for a whale!

In the last 3 weeks I've travelled over 750 miles to and from treatment, normally getting home by about 10am. 

For the next couple of weeks the radiotherapy continues to work, my skin can continue getting more sore but at the moment it's not too bad! 

I dread to think how much money we've spent in hospital car parking and how many appointments I have attended..

I have certainly learnt not to take things for granted and to live life for now a bit more! In July and August I've been lucky enough to have some precious catch ups with my lovely friends I just quite frankly don't get to see enough of due the the distance.. Hayley and I enjoyed a child free dinner while she was in London doing some training.. Jo, mum and I celebrated Jo's birthday at the theatre and Jojo and I popped into town this week to catch up for lunch after my treatment.. We enjoyed getting together for the 1st time in 9.5 years where no one has needed a drink, escorting to the loo, moaned about whatever the others are doing.. We had a lovely glass of wine chatting and enjoying Covent Garden and a mooch around the shops before deciding to see if there were tickets to a show as we walked past a ticket booth! 

It felt very naughty going off to a show without the husbands and children, and even more odd not having to rush home as the house was empty.  

Aladdin was fab, colourful, vibrant and blingy and we both left the theatre wishing the Genie could sort a magical portal to just transport us home without the trog back! 

With the boys packed off to the Inlaws for traditional the camping in the garden sleepover (which I think they will spend the weekend recovering from๐Ÿ˜‚)  I booked onto an evening Pilates class, I met a few new people down the gym.. One lady commented 'Wow, I thought my hair was short but yours is even shorter than mine!' 
I felt a bit bad for what happened next.. 
Poor lady didn't know where to look when I explained this wasn't my choice of hairstyle and that I'd been having treatment..๐Ÿ˜‚

So with 2 of my most trusting drinking pals Gina and Ruth away on holidays drinking celebrations will need to wait for now! Instead tonight the hairdresser is coming and going to tidy up my hair (as well as sorting out the boys!) It marks the end of treatment quite nicely. 

So now to enjoy the last 2 weeks of the summer holidays hospital free๐Ÿ˜Ž 
A trip to Cadbury world with nana and pops next week.. And just not having to rush out of the house in the mornings will be lovely for the rest of the holidays! 

I'm so blessed to have had great support through all this, but particularly Jo who has hugged me, held my hand, shaved my head, taken me to see Dr Matt late at night and most importantly made me laugh along the way.. I couldn't have done it without you! ๐Ÿ’—

Monday, 8 August 2016

Birthday meets Phase 3!

So the summer holidays are underway and started with a bang..

DRR Friendship mile with cake (and a cheeky couple of ciders) and laughter on a sunny Friday evening.

The next day Adam got the chance of last minute tickets to the anniversary games, Mo Farah and Jess Ennis-Hills were competing, an absolutely fantastic day, made all the more memorable by meeting up with DRR buddies which filled the day with giggles! 

A slightly calmer week followed as we prepared for my birthday and our Willow Special day, which was amazing.. More about that in a moment. 

For my birthday I had arranged an afternoon tea which I baked for and my In Laws hosted in their lovely garden, friends, family, Pimms on the lawn and plenty of cake on a wonderful sunny afternoon was just fantastic!

Just before the holidays I started taking Gina out for some runs and am enjoying making her work hard whilst rebuilding my own fitness, I've also started my return to parkrun and am looking forward to building my distance again over the coming weeks ready for the Willow 10k in October. 

So with talk of parkrun and Willow we are having a parkrun purple team for the Willow race which you can enter here, there is also a purple parkrun at Wardown Park, Luton on 10th September with cakes afterwards to raise money for a fantastic local charity who gave us as  a family a wonderful special day at the end of July. 

For our special day we decided on a theatre trip to see the Lion King with the boys as it's something we hadn't done before, and the boys (5 and 9) are at an age where we could all enjoy the show, followed by dinner at the rainforest cafe. Our tickets arrived and our excitement started to grow! 

Once the day arrived and we caught the train into London early to visit Hamleys before the show. We visited the queen and ate sticky buns listening to buskers in the sunshine in Leicester Square. We enjoyed a little walk along the Ride London route to the theatre. 

The show was magical and the children were spellbound during the opening as the animals made their way onto the stage. I'll never forget the looks on the boys faces as they really didn't know where to look first! 

Afterwards we went to The Rainforest Cafe for a lovely meal, with the gorillas and tropical storms. 

The whole day superb and one we will certainly treasure, it's helped put a spring in my step ready to face my radiotherapy, and marks a turning point in the year where we are able to start planning things. We've had to be so patient regarding booking a much needed holiday and we now have that to look forward to in October half term. 

So I've done a week of radiotherapy now, and thankfully my Inlaws have come to my aid with helping with the boys, my early appointments have meant that the traffic and parking getting to Mount Vernon each day so far hasn't been too bad, and I've been able to get back and still had time to enjoy the day. I'm nearly half way through stage 3 of my treatment.. The end is in sight๐Ÿพ๐Ÿพ