We Talk Brain Tumours

Hi I haven't posted for a while but following all of you and love to all.

We are trucking along ups and downs -  Clive has finished his 6 weeks chemo and radio and in the month gap before starting 6 months chemo. Good days and bad days but generally pretty good compared to lots of you on here so I guess we are pretty lucky but certainly doesn't feel that way most of the time!

Angry days very difficult and sad days also.

Looking for some help on a couple of things:

I'd like to take Clive to Venice for a couple of days and can anyone recommend an insurance company that will insure him?

Also any tips on helping with muscle wasting and bloating ( I believe these are side effects of the dexamethasone). These are really depressing Clive as he was very fit and active before all of this. Can't believe he was just about to run a half marathon this time last year!

Wendy X

Dear Wendy,

I know exactly what you mean about angry/sad days, and how they can threaten to overwhelm you, but somehow we dig deep and find the reserves from somewhere to carry on.

With regard to your queries, I cannot comment on the insurance, but I am sure someone on the forum will know something about it. We are hoping to go to Ireland in a couple of weeks time, and your query has set me wondering too...

In relation to the steroids, they are very much a mixed blessing, they have helped Dave in some respects, but when we have tried to reduce them down from 2 mgs, this has resulted in him having  prolonged seizures, requiring hospitalisation. This has happened 4 times since April, so we do seem to be stuck at 2 mgs and all the difficulties the side effects bring at the moment... The best thing is if the dose can gradually be reduced and can cease.

The physio who has seen Dave has recommended gentle exercise and to keep moving to try and counteract atrophy/weakness in muscles. It is worth looking at a reduction programme with the steroids, running alongside some gentle exercise...

Reading and keeping up with everyone's progress. Although I haven't been posting lately, I find myself thinking of you all through the course of the day...sending my love and best wishes.

Elaine B.K.

pete u r a star ..... the love and care u have for ali is so special.

spent all day in a & e as suspect reciurrence dvt    oh not that important might have another one to the brain then ..... but good old nhs terminally ill patient sat i n a &  e alan not very good keeps wanting to diagnose everyone ie o my god he looks illl not got long (yes the inapproriate behaviour) dc dont know what a glioblastoma is have to spell it to the nurse beggars belief but am i  being harsh NOT surely the condition speaks for itself f offed with the way my man being treated in his last dayw.

hugs to all xxxxxx

Welcome back Wendy.

When I took Mark to Italy in May ( 8 weeks before he died) I got insurance from Goodtogoinsurance.com 0844 7742 986.

They were recommended by our Oncologist and although not cheap, they were not fazed by either the words Brain Tumour nor Terminal.

On another note...and I did not think I would ever say this in this life or the next-  Ryannair were brilliant.

Love to all on the train tonight. 

cathi x

Hi Wendy,

I took mum to Portugal for a week, used Sunworld travel insurance, the brokers were sladdins tel number 01371 878578, was £364 for a week but full condition was covered.  To be honest once I put those words into some sites online they refused cover so didn't think was bad and again went with Jet 2 and came back with Monarch and both were fantastic and managing the wheelchair, getting mum off and on the plane, putting us at the front of all queues etc.

x

Hi All,  Sad to say that my very brave and beautiful mum passed away last week very peacfully at home with all her family at her side 8 months after being diagnosed with GMB 4.  We were advised back in July that the radiotherapy hadn't worked and the tumour was growing and that she had only months left.  Mum was never told this and her courage and positivity is something I shall always remember and take great comfort from.  Over 350 attended her funeral which I am very proud of as that shows to us as a family that, not only we as a family loved her but alot of other people did too. 

 My sisters, dad and I cared for mum at home with the help of wonderful District Nurses, Macmillan Nurses and we finally had to ask for help from the Marie Curie Nurses for overnight care.  It isn't until you have someone with cancer do you fully understand and appreciate the help they provide.

I'd better go now as I'm bubbling away here and don't want to blow up my laptop! lol.

Good Luck to you all on this journey and shall keep you all in my thoughts and prayers x  

So sorry Roses. Your Mum is now free of this awful disease and at last has peace. You have now joined us on another part of the train.... Love and hugs to you and your family.

Cathi x

Sorry to hear your news Roses (((((  hugs))))))) to you xx

Roses, sorry to hear your news.  Ihope you find comfort that mum had you all with her when she died and the huge turnout to celebrate her life also.

JM7 - if you suspect a DVT in the future (too late this time) then contact the DVT clinic directly.  If your husband is already on anticoagulants they probably wont do anything else except observe him and you can do that at home with your GP and DNs. 

Joanna xx

Hi Joanna, contacted GP who said he should go to A & E ?  how do I find out if we have a DVT Clinic please, thanks for your advise Julie xx