Saturday, 29 October 2011

Milestone, Sally and the journey

Well another birthday enjoyed and a another target met! We went to E.Sussex for a couple of days away. We visited Bodiam Castle – beautiful, Battle Abbey – a pleasant surprise, and Sedlescombe Vineyard where we purchased a few bottles of organic English wine. We also bought some famous Battle bangers!
We now have Sally the Sat Nav to guide us on our journeys. She speaks very gently and makes a happy sound to inform Alan when he needs to slow down. This works so much better than me shouting ‘Alan slow down’! But Sally does sometimes get it wrong like ‘continue forward’ when all you can see is a brick wall! The best bit is ‘Make a U-turn when convenient’. We had a couple of those instructions on our way home from Sussex to Kent and we found ourselves on a long, narrow country lanes which twisted and turned and we appeared to be in the middle of nowhere but we caught up with ourselves after  a few miles and back on the route we recognised.
That made me think that life is a bit like that journey. You are tootling along quite nicely doing OK then suddenly out of the blue something happens that knocks you off course and that can be very confusing and frightening. But given time and corrective treatment you can eventually get back on track. Well I am about to embark on one of those ‘not quite sure where this will lead’ kind of journeys as I prepare myself for the next round of chemo and the drug trial. I feel positive that Alan and I will get to end of that particular journey safely albeit with a few wobbles along the way.
As much as I love Sally I wish she would say ‘roundabout’ properly – she says it as if it is two words with the emphasis on ‘about’ .
Thanks for popping by today. Tess x

Thursday, 20 October 2011

T is for .....

Target met
I was so happy to celebrate my grandson's 1st birthday yesterday. When I was diagnosed in September 2010 I didn't think I would be around to see my darling Ethan at all. So this really was a brilliant day for me.

He enjoyed opening pressies, going to a farm and eating birthday cake.
Love you lots little man - here's to us both meeting more targets together along with your beautiful little cousin Lilah. . NanaTess xx

Sunday, 16 October 2011


 I had a lovely phone call last night from my son in Canada to say he had booked air tickets for him, my daughter-in-law and lovely granddaughter to come to the UK for Christmas. It seems a bit more real now and something to keep me focussed to the future.

This got me thinking about my wonderful family and friends who have tirelessly supported me over the last year. How hard it must be for them too. Keeping up with their jolly chat and jokes and trying to be ‘normal’ when maybe they are feeling so sad and broken inside too.  My husband Alan has become my full-time carer so his life now totally revolves around me and my needs – it is so unfair. We are all in need of support from someone.

I often wonder how people cope if they don’t have a loving support network around them. This is why self-help and support groups are so important. 

I have found friendship and understanding on Facebook too with other Mesowarriors. It is often good to have such a group to ask about things that you don’t necessarily want to ask those close to you. They are not medical professionals  but just ordinary people who once had ordinary lives that have now been turned upside down by this cancer. They do not judge and are there for anyone needing help or support. 

For others counselling is a good way to talk through issues that are important to you. Alan & I had one counselling session when I was first diagnosed – to be honest I was so shell-shocked I cannot remember much about it. But for many it is a life line.


So I hope anyone in need has someone they can talk to or if not then they know where to find help.

Hope the links  help. Tess x

Meso and Me ( a carers blog)

‘It is not enough to help the feeble up, but to support him after.’

Tuesday, 11 October 2011

Moving targets, a shopping list and a joke

I had an appointment with my consultant yesterday. The cancer is rearing its ugly head once more so I have to make a few changes to my targets. Some will have to be postponed, others brought forward. I will be starting a new chemo regime in the next week or two so I need to get geared up for that. Chemo is crap but the alternative is worse! This time I am being prescribed Vinorelbine and have been told it is better tolerated than the cisplatin group of drugs that I had first time round. I am hoping this is true but will let you know. 
In addition I am being referred to Maidstone hospital to see if I am a suitable candidate for a drug trial that is being researched there. 
In preparation I am making a long shopping list of foods to buy based on my previous chemo experience – hoping this will also help my personal chef as it will stop him tearing his hair out on the days when I refuse food. Those who know Alan may smile (or even laugh) at that as he is somewhat hirsutely challenged!  So on my list will include:
Ice cream (Haagen Dazs or Ben & Jerrys)
Tinned tomatoes
Heinz baked beans
Ambrosia creamed rice
Tinned tuna
Streaky bacon
Innocent fruit smoothies
Tins of CocaCola
Mixed nuts and raisins
Creme caramels
Chocolate mousse
Not many of these items are part of our usual shopping but needs must and the idea is to get calories in to me in a way I can tolerate.
So the holiday somewhere warm planned for October/November will now be postponed until February. I will add in a few days away in UK or France before the chemo starts. I will also add in a long weekend to London early in December.

Today I will leave you with a joke – courtesy of my very good friend Raymond who has sent me a joke-a-day since my diagnosis in September 2010. Any groans are therefore not my fault!

A turkey was chatting with a bull.

'I would love to be able to get to the top of that tree' sighed the turkey, 'but I haven't got the energy.'
'Well, why don't you nibble on some of my droppings?' replied the bull. They're packed with nutrients.'

The turkey pecked at a lump of dung, and found it actually gave him enough strength to reach the lowest branch of the tree.

The next day, after eating some more dung, he reached the second branch.

Finally after a fourth night, the turkey was proudly perched at the top of the tree.

He was promptly spotted by a farmer, who shot him out of the tree.

Moral of the story:
Bull Sh*t might get you to the top, but it won't keep you there..

My thanks also to friend and fellow warrior Mavis (who is already accepted for this trial) for the web links. Good luck Mavis.

Tess x

Saturday, 8 October 2011

Use It or Lose It

None of us need telling how important exercise is whether you are able bodied or not.
The benefits of regular exercise are well documented. However, even with all this knowledge I have found exercising quite difficult. During my chemotherapy regime I lost a lot of weight due in part to the nausea, loss of appetite and fatigue. In my opinion I was almost skeletal in appearance which zapped my confidence no end. However due the culinary expertise of my wonderful husband I did get my appetite back and regained some weight. The problem now is the weight gain is mainly fat and flab and not muscle. I did try to get some advice post-chemo from my hospital and supportive therapy team about getting some kind of physiotherapy – all I wanted was someone to give me a few pointers in terms of exercise to strengthen my muscles. Physios are there in the hospitals and do an amazing job to get people moving again after surgery or long term bed confinement but I could not get any help in this area. I do not have the confidence or stamina to attend regular ‘keep fit’ classes. I do try and walk as much as possible – living by the seaside I do have the benefit of a flat prom. I use a pedometer just to keep myself on target. I am able to go up and down stairs at home without getting breathless but walking up inclines are difficult.
At the Mesothelioma UK day one of speakers was Julie Robinson who gave us taster of her ‘Move It or Lose It’  DVDs. Great fun and something I could do. I have just purchased these.

Have been sat here too long now and need to get moving! Tess x

Wednesday, 5 October 2011

A school is an institution designed for the teaching of students (or "pupils") under the direction of teachers. Most countries have systems of formal education, ...

You certainly would expect to go there and return home safely wouldn't you?

Please take a look at this short video.

If you have any connection with schools in whatever capacity or know someone who has here are some questions you may like to get answers to:

Ask your school

·        Ask for asbestos Survey, Register and Management Plan
·        Is asbestos Vulnerable to children?
·        Is the school a System built school?
·        Have columns, walls, skirting and ceilings been Sealed?
·        Have all staff been Trained
·        What action following an asbestos Incident?
·        Are staff and parents always Informed?
·        Will asbestos be Progressively Removed?

Lobby your MP:
·        Openness
·        Environmental level for schools
·        Progressive removal

Look at this link to see the reasons behind these questions.

Thank you to Michael Lees for letting me use this information which is from one of the slides he presented last Saturday.  See MesotheliomaUK

Tess x

Monday, 3 October 2011

Uncertainty continues in fate of Quebec asbestos mine Provided by The Canadian Press

A bit of good news - one more to go.