Day 24 - Saturday 31st July 2010

As you know we have been away for the past week. The break had been arranged sometime ago and we spent a week in Dorset. I really didn't want to come home today. The time away has been just idyllic with full-on time with my three fellas. I have totally enjoyed the break and it wasn't until we were heading back home to reality that I realised that I had been living a kind of surreal time away from my real world where it was almost possible - just - to pretend this wasn't really happening.

Now we are back home and I have to resign myself to all that will go with it - confined to barracks - no driving - trying not to do too much (those that know me well will know that it a ridiculous thing to say to me) and just getting through the days, weeks and months ahead in the best way that I can. Hopefully when the post arrives on Monday, I will get some clues to when radiotherapy is scheduled to begin.

Hoping to get a more restful night's sleep back in my own bed tonight.


Photo: Friday 30th July 2010 at Wimborne Minster

Day 23 - Friday 30th July 2010

Maurice's birthday today.
What can I tell you? We have had more upbeat days. The only present I would like to give him and I am pretty sure the only present he would wish to receive, I am not able to give. It is at these poignant times of birthdays, anniversaries, etc that it is inevitable that thoughts move on a year - will I be around at the next one? And there are lots that I want to be around for - Toby's birthday, Christmas, New Year, Cory's birthday, Valentines day, my birthday - I could fill the whole page.

Have bought some loose clothing in anticipation of the promised weight gain that steroids will bring. Almost my whole life I have battled to keep my weight down, putting pounds on even if I look at a piece of cake or chocolate bar, so I guess it is time to forget about it and just go with the flow, what will be will be and if I am big as a house - who cares - bring on the cake !


Photo: Friday 30th July 2010 at Wimborne Minster Model Town - taken by Toby

Day 22 - Thursday 29th July 2010

Got a marginally better night's sleep last night, but still room for a lot of improvement on that score. While I believe it must be good not to have had any seizures/fits for a while, the problem with the numbness continues with almost all the left arm, up neck to just above ear and down left side including shoulder-blade to waist. It is very disconcerting not to be able to feel where your arm is and not having total control of it. I am wondering if I will get the feeling back or not.

Thought it would be a good idea for the boys to take photos, so have upgraded Cory's camera, so now both boys have super cameras to take super snaps and hopefully some will appear on here.

Have also started looking around for two keepsake boxes so they can be filled with some "things" of mine so that the boys will have something to look at in the future - not sure yet what will go in them but at least the idea has been hatched.

Been thinking of what will need to be done to get everything in order and there really is loads to do - admin mainly for the running of the house and family.

Before that I will need to handover to the new Clerks for all four Councils before I leave at the end of October and hopefully with the adverts for the vacancy being placed this week there will be some applications coming in soon. As a forward planner I am so glad I have already prepared the budget packages for all Councils that will need to be completed at the end of this year and I even prepared the end of year (31st March 2011) accounts too as far as I could, so whoever takes over should find it relatively simple to pick up and run with - at least for the first year. I really hope my Councils find someone who is competent and capable.


Photo: Wednesday 28th July 2010 at Avon Beach, Christchurch - taken by Cory

Day 21 - Wednesday 28th July 2010

Well, guess today is the first milestone, albeit small. It has been one week since I received the news of the brain tumours. One whole week ! It seems like a lifetime, but hey if all the days and weeks ahead go this slow, I will be grateful for every minute.

Have been a bit tearful today. Surely I am allowed to be like this every now and then? Just thinking about everything and looking at the family around me - it just doesn't seem possible that I won't see their faces every day sometime soon.

Going around doing normal things it really isn't possible to know what is going on in people's lives. You cannot tell just by looking can you? Seeing everything going on around me just as it normally does, I feel like I am on a different planet almost, looking in from the outside and so wanting to join in and be normal.

The unbalanced feeling was very apparent today and it's like I am on a boat and not able to stand steady. I have been worried that the feeling may be down to the tumours progressing but a call to the Doctors has revealed that sometimes with the tumours reducing that feeling can come to the fore. I may need more drugs to control it - oh yippeedooo !



Photo: Wednesday 28th July at Avon Beach, Christchurch - taken by Toby


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Day 20 - Tuesday 27th July 2010

Hope you like the new blog colour scheme - of course it had to be pink ! Planning on uploading some photos too. Well, you know I don't do anything by halves - a job worth doing ....

Well isn't this blog thing going well? As you know I have always been able to babble on for hours about next to nothing and so it's the perfect platform for me - totally self-indulgent !

Have been feeling very tired again today. Trying to avoid taking the Diazepam at night if I can help it but am waking during the night with "thoughts" so may have to give in eventually.

Today, as yesterday, have been very unbalanced when walking and dizzy too. Maybe that's down to the medication/tiredness. Might have to use a stick to keep me vertical at this rate - really don't want to be falling over in public when I'm sober !

Photo: Tuesday 27th July 2010 at Museum in Christchurch

Day 19 - Monday 26th July 2010

Didn't have a particularly good night's sleep last night, so have been very tired today. Nevertheless spent a lovely day with Maurice's sister and her husband and Toby got a new mobile phone from his Grandad Maurice for passing the 11+ and getting a place at Maidstone Grammar School.

Been thinking about my Mum today. Firstly because she has been into hospital for a hysterectomy to remove cancer in the womb! Have spoken to her and all is well, she will be home tomorrow.

But secondly, as a woman, I believe one of the most precious gifts in life is having a child and becoming a mother. I certainly did not appreciate the love that you could have for your own child as before I met my husband some 15 years ago I had no desire for children. But of course that has all changed and I have been blessed with two beautiful boys. The thought of losing one of them does not bear thinking about. I can remember when my father died over twenty years ago now, my Nan saying "you don't expect your child to go before you". Well that brings me back to my Mum and I know that she must be having a hard time with my journey too.

One good point - no seizure again today. Well at this rate I may have to seriously re-consider whether I sell the little red sports car or not. I may yet be able to drive sooner than I thought. Just need to still be around in two years time and hey presto ! Positive thinking girl !


Photo: February 2010 - My boys undercover in Egypt

Day 18 - Sunday 25th July 2010

I can't really believe it is only four days since I was given the news, it feels like I have been to hell and back a million times already! A real rollercoaster of emotions, mainly centred around my beautiful boys and trying to make the most of every moment with them.

Seems in this blog I haven't said much about my wonderful husband yet. He is my rock and soulmate and I know he is struggling with it all too. The fact that his first wife died from breast cancer is just uncanny and unbelieveable that lightning has struck again - that's not supposed to happen is it? In fact when Mrs Jones at the Breast Clinic gave us the news five years ago that I would need a mastectomy, her actual words to Maurice were that she knew that his first wife had died of the disease but that this time the result would not be the same. There sure is no guarantee in life is there.

Guess what? No seizure again today and not much of a headache either. If it wasn't for the fact that my arm is still numb, I could almost kid myself I was okay and pretend this wasn't happening.

Maurice and I went to a super gathering at a friend's house a few weeks ago - had a great time and thought we might have a party ourselves but dismissed it at the time. But we are now thinking about arranging a get together to see everyone I care about - not a party exactly - well what would there to be to celebrate? But it would be lovely to see everyone. Watch this space.


Photo: June 2010 - With Sandy at Sally's Party

Day 17 - Saturday 24th July 2010

So when was the last time you looked at something and really saw it? In this fast pace world that we live in it is so easy to rush from one thing to the next and not pay much attention to what is around us. I must have been rushing around for years oblivious to everything but my eyes are wide open now and it's almost as if I am seeing everything for the first time again. Have you taken a look outside and up lately - the countryside is lovely and sky so beautiful. If you really look at something you can see how wonderful it is and that goes for everyone around you too.

We all must have had those conversations "What would you do if you only had a short time to live?" What did you say? Go round the world? Cruise? Visit some amazing place? I know I probably said something similar. Now faced with the reality - know what? I don't really feel the need to do any of those off the wall things - I am happy being right here with all the people I care about around me - that has to be the best way to spend my time.

It is very weird not having feeling in my left arm and typing this blog is not easy at all as the signals about what keys to hit do not seem to be arriving at the fingertips ! Seems those tumours on the right side of my brain are still putting pressure and restricting the signals. Hope that the steroids work a little better in reducing the swelling and I get some feeling back soon.

Well it is now 6pm and I haven't had a seizure yet today. That's two days running - at this rate I can ask for my driving licence back in 1 year and 363 days time. That's positive thinking!

Photo: February 2010 - Happy holiday time in Egypt

Day 16 - Friday 23rd July 2010

Had a better night's sleep - was exhausted! Woke up to some lovely messages from friends - thank you for your support.

Have given my resignation to the four Councils this morning and posted vacancies among the Parish Council world !

Everyone is being so lovely and willing to help, I am very lucky to have such good friends.
Main concern right now is not being able to drive anymore. Let's just see how it goes.

Well, haven't had a seizure today! That's a first so I guess the steroids might be kicking in. Fingers crossed for tomorrow.

Had a day full of visitors, it really is overwhelming to find out how much people care about little ole me.

Off to try and get another good night's sleep.


Photo: Sunday 16th May 2010 - Race for Life, Maidstone

Day 15 - Thursday 22nd July 2010

Didn't sleep at all well last night. Apart from the drugs, just couldn't stop thinking about it all.
Got to get through the day and get to the appointment with my oncologist this afternoon. Write a list of questions.

Have been told I cannot drive so Maurice took boys to school and spoke to Headteacher and explained the situation. She was brilliant I am told, but I know she is, that's not news to me.

Maurice collects boys from school and comes back to pick me up and we go to Hospital.

Oncologist shows the scan results - there are three tumours, so no chance of surgery.
Without performing a biopsy there is no way of knowing for sure if it is secondary breast cancer or secondary melanoma, so Kings are going to be asked if they will perform a biopsy. There is no treatment for secondary melanoma brain tumours. Radiotherapy course to treat secondary breast cancer will be arranged to start as soon as possible - 10 days of treatment to zap the brain tumours which will reduce the swelling and hopefully the tumours.

More scans too to check other organs for secondary cancer.

The rogue cancer cells probably travelled and rested in the brain before I had the mastectomy and chemo does not touch blood in the brain, so they wouldn't have been zapped then. Nor does the supposed wonderdrug Herceptin that I had a year of following chemo and radiotherapy. Damn and blast - double and even triple blast !

There is a new drug that does get to blood in the brain, it has been registered but not yet approved by NICE and if we can get confirmation that it is secondary breast cancer there may be a case to get special approval to use the drug. Looking on line it appears to give 2-4 months longer.

Asked the oncologist about best and worst case scenario. He said it was likely that it would take my life - worst case - any day - best case - up to two years.

Got to get everything sorted out admin wise - must make sure all is in order soon.

Photo: July 2009 - The boys on holiday in France

Day 14 - Wednesday 21st July 2010

The day has arrived, hopefully I will get some answers from physio and the breast clinic will confirm there is no problem with lymphodema.

On way back from dropping the boys at school, felt the spasm starting so had to stop the car and wait for it to pass. Very violent and for the first time whole of the left arm was twitching and visible this time. Difficulty changing gears but have to get home.

Another spasm of the same intensity at lunchtime. That's four times in less than 24 hours !
Oh well, the physio will probably be able to tell me what's going on.

1pm - At Physio - got an assessment and it was felt an MRi was definitely required and it would be arranged.

Pick up boys from school and head to Maidstone Hospital for the 4pm appointment.
Saw Doctor in Mr and Mrs Jones Breast Centre team, explained problems with arm and spasms. Dr. was concerned about what was happening and arranged a CT scan to rule out the possibility of cancer in the brain that could be affecting signals to left side of body.

Go for scan and - wait for it - brain tumours in situ ! Not in a million years did I expect that blow! Thought I'd done my time and almost made it past the magical 5 years - but not.
Asked what would happen and was told steroids to reduce swelling but that weight gain was the main side affect - so now I can eat as much chocolate as I like and blame it on the drugs!
When i asked how long - was told: days, weeks, months but not years.

WHAT? NOT YEARS? What about my beautiful boys? They are too young to be without their Mummy. They need me! How am I going to come to terms with not seeing them grow up.

How can this be happening?

Prescription given for steroids and Diazepam and must start steroids tonight.

Had a talk to my brave boys. Told them what was going to happen. Are very upset. Lots of hugs and kisses.


Photo: July 2007 - My three fellas

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Day 13 - Tuesday 20th July 2010

Well had a call from Physio and made appointment for tomorrow. Doctor managed to get my annual breast clinic appointment brought forward from September to tomorrow too, so will hopefully get it sorted out then.

Had a spasm at around 7pm and another during the night. They are definitely getting worse as the spasm now travels down to my left foot, into my bottom and groin and up my neck and across throat. Very uncomfortable and lasts a little longer - about 3 minutes. Once finished the numbness seems not to subside either and having trouble typing with left hand as signals do not appear to be getting through to my fingertips.


Photo: Summer 2007 - brotherly love

Day Six - Tuesday 13th July 2010

Doctor's appointment. Have had spasms every day and appear to be getting slightly longer. Explain my concern about the spasms affecting lymphodema in my arm. Doctor referred to Physio with a view to getting an MRI to find out what is going on. Possibly something to do with spine or neck - nerves.




Photo: March 2008 - 50th Birthday - London Eye

Day Four - Sunday 11th July 2010

Spend a normal day at home and just sitting in the kitchen and get the spasm again. Not so scary this time as I know what is happening. Lasted about the same time but went a little further down my arm, across my chest and up my neck. Weird - will have to make a doctor's appointment tomorrow.



Photo: April 2010 - taking Auntie out for lunch in my pride and joy

Day Three - Saturday 10th July 2010

Erm. Still have numb arm from elbow to shoulder. Not causing any pain so okay.
Decide to go out for the day and while passenger in car notice "something happening to my numb arm". Frightening sensation - a sort of spasm - but although it felt very violent, it was not visible, nor could it be felt under the skin. Weird and scary but only lasted a couple of minutes and stopped suddenly.





Photo: February 2010 on holiday in Egypt

Day One - Thursday 8th July 2010

Find myself with a numb left arm from elbow to shoulder and worried about lymphodema. That's good, there is no swelling, so probably not lymphodema. Let's see if it goes away on its own.






Photo: February 2010 on holiday in Egypt


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