We Talk Brain Tumours

Dear Martyn

I am so sorry to hear that Doreen has taken a turn for the worse as you have both done so well for so long.

Also my thoughts for Robin and his family aswell,

I am sorry to hear that Jan is now in the hospice but I am sure she is being well looked after.  I can't begin to imagine how it is for you and your children.  Hopefully you are all getting some good support from family and friends.

As we all know, it doesn't seem to matter what part of the journey were are on it all stinks.

Thinking off you both at this extremely difficult time.

Take care

Ann x

dearest and martin and skeete

So sorry to hear that things have taken a turn for the worst, thinking of you as always.

jo

Hi Ann

Initially I think he should have been under Dr Matt Griffin but for some reason he ended up with Dr Mills.  Another example of their disorganisation - today he was due at City for his radio at 4pm (he had requested AM appointments but never mind) at 10am he gets a phone call asking him where is he.  it just makes me angry, things like this really stress him out!

The pets are good stress busters I find.  Molly (lab) and Squeaky (cat) always seem to know when I need distracting.

Thanks again Ann, sorry to be leaning on you so much - do tell me to buzz off when you get fed up!!!

Hope you have some sunshine up North, its quite pleasant down here today in Southampton.

Helen
XXXX

Martyn and Robin, I've not been on here for a week or so and was having a little catch up tonight.. My thoughts are with you both, wishing you every strength and Doreen and Jan evry comfort.

Martin.

Hi Helen

Sorry to hear about your Dad being messed around  Usually with radiotherapy he would have been given a schedule for all of his appointments showing the dates/times and it would also include the date/times when he sees the oncologist.

I don't know who Dr Mills is, perhaps your Dad could be referred back to Matt Griffin - worth asking.

I don't mind you leaning on me - that is how we help one another.

When we were on the same regime as your Dad, all went well.

We seem to get messed around with chemo because they have alot of people to deal with and they don't order the chemo until they have checked the bloods.

It then can take 2 hours before the chemo arrives then you can wait another hour or so and sometimes it can take upto 5 hours - 7 hours with travelling!

This makes us stressed as it is difficult for my husband due to lack of mobility.  They do not seem to take into account someone with extra needs and he ends up sitting in the wheelchair for all this time as there are no seats suitable to transfer him to.

Other then a couple of other people with mobility problems, everyone else just walks in gets their treatment and walks out.

It's been sunny today so makes you feel better.

It was Steve's 57th birthday yesterday so a milestone for us - we never thought we would get to see another birthday together after being diagnosed last may/june.

Anyway, you keep 'leaning' and I will try to help the best I can

Take care

Ann X

Hi Ann, Helen and all,

The City and the QMC hospitals have some of the finest clinical skills available, we have been receiving them for over 7 years now. I do however have to agree with you both, in that for much of the time the right hand is conducting a different orchestra to the left.  Doreen has been attending the Oncology clinic for the past couple of years in a wheelchair and I can only agree with your comments.  It was actually suggested last week by our ns, Mr Paul Byrne that Doreen attend the clinic in her bed!!  Anyway it won't affect us anymore now, but my advice to you both is, stand your ground, speak out and make sure you're heard and responded to.  I did, they probably thought me a right bloody nuisance, but I made sure my mate got the very best available delivered with respect and consideration.  We are very, very near to the end of our journey now, we see the terminus in the distance through the haze. I hope whoever is driving this train in my absence comes to rest at the platform very smoothly.

Love to you all,  Doreen and Me. XXXX

Dear Martyn

Thank you as always for your words of wisdom. You are a truely remarkable human being.  If I can have 25% of your strength then I know I am doing a good job.

Love you to you and Doreen.

XXXX

Happy belated birthday to Steve, thats wonderful I am so pleased for you both. It must be very difficult with the moility problems.  makes me feel lucky that at the moment (touch wood) dad can still manage fairly well.  I spoke to dad a few minutes go and he mentioned Matt Griffin so fingers crossed.  he did also mention another doc whose name I can't remember, will get it and post later.  Dad seemed to think that he might be entitled to a lower tariff for his energy bills?  do you have any knowledge of this?

Thanks again for all your help.  I am off to Aqua Areobics, going to take my frustration out doing some exercise.  I am off to Mexico next Sat so am trying to lose a couple of pounds!!

Take care and talk soon.

Lots of love and cyber hugs for all my other mac mates.

Helen XXXX

Martyn-if the love and dedication you have shown Doreen in the past 7 years-lines the tracks that this train travels on-then the journey at your final platform will be the smoothest ever. Its not the end of the journey more like a railway connection where you arrive at a platform,get off and get on another train heading in another direction. Whichever train life decides for you to travel on rest assured what you gave Doreen was 'First Class' and she will travel beside you forever. x

Lovely words Y&Y - I take comfort from them xx

Martyn, as always love to Doreen and yourself.  I hope Doreen is comfortable still.  Take care of yourselves xxxx

Ann - I hope you and Steve celebrated accordingly, I'm sure you did! 

LDW - I think the best way to check out what your dad is saying about the energy bills is to contact them direct and ask the question as I don't think this is right.  As a disabled person you can receive cold weather payments - since my husband was under retirement age this amounted to £25 per full week of cold weather - but assuming your dad is of retirement age then he will no doubt already be registered for this but gets more - however this really only (obviously) applies to winter time.  To check out what your dad is entitled to contact the social services or ring the benefits helpline so you can explain his personal circumstances then they can advise you.  Hope this is helpful.

Take care everyone x