We Talk Brain Tumours

Hi everyone,  Just thought I would up date you seem to be having a good day today, depression seems to have subsided, feeling much brighter so hopefully hubby has worked through the very rough patch.   Reduced steriods to 2mg now.  BUT the only thing that is niggling me is that although aware Alan has non cureable brain cancer, the fact that he is not having chemo does that mean he is cancer free or is it that the cancer is there but as no re growth of tumour no chemo but he did not have all the tumour removed which has been confirmed as cancerous ...god I am confusing myself putting this on here lol - any info would be great.  Big hugs to all xxx

PEABS-- your advice is a fantastic support to me.. we have been bombarded with all sorts of advice, some totally incorrect from "well wishers" but yours is always spot on- keep it up :)

and if anyone knows of any home help available to a younger person in the south east please let me know, as all social servies have offered is to take both children away from my daughter, which as she's a fantastic mum and just needs a little bit of assistance is totally unfair 

Susie XXX

Dear SusieSue, as your daughter is only 24 she falls into the care of the TYA units. Check to see if the hospital that she is being treated has a team (Teenage and Young Adult Unit) within this team they have youth workers, a social worker and a cancer specialist nurse. I have to say that the social worker my daughter had was worth her weight in gold. You say you're in the South East. The team my daughter had covered all of Hampshire, down to Poole and Dorset, Isle of Wight and the Channel Islands. Am sure that they could sort out REAL and USEFUL support for your daughter. TCT will help young adults, as they DO also support early twenties.

Also, contact your local hospice. They have numerous volunteers that will help with: cleaning, shopping, gardening, housework and many other things...they will do this whilst people are being treated.

Hope this helps love. PEABS XXXX Take care all of you.

Dear Susie ...That cannot be right. Surely at a time like this your daughter needs her children near her and the children need their Mum. They all just need extra suppport.

I agree PEABs. You do seem to have a wealth of knowledge and it makes me realise that I have not been asking enough questions and am just accepting what I am told. I am sure you have learned the hard way....but its a huge help to all of us.

thanks 

Cathix

thank you.. yes she'll see people at Kings in a young persons group (once every 3 months I believe) but we've been trying the 2 ½ months since her diagnosis to get her some practical help in the house.. Once her DLA comes through she may be able to afford a cleaner but is on her own so social services say that if they think she's a danger to the children they'll take them! Her seizures are under control but she's losing muscle strength due to the steroids, so you can imagine how tiring it is looking after a one year old baby and a 4 year old boy.

Dear SusieSue, phone hospital tomorrow and ask to speak with her MDT, neurologist, oncologist, etc and say that do they have a TYA TEAM in place, if they say yes there is no way on this earth that you should be waiting 2 1/2 months to be seen, this is unacceptable, and tell them so. If they do have a TYA team say that you want a visit this week with social worker to sort out  DLA/and unemployment benefit. With a brain tumour you are normally put on the highest amount. This is what my daughter's social worker did for her. She also organised, Wessex cancer trust pay out £300, CLIC sargent payout £200 and macmillan payout £300, which she used to go towards new clothes, as she put weight on with the steroids. Christie's social worker also organised her having a Blue badge, as she did develop difficulty in walking any great distance. Please contact any hospice by your daughter to help with household chores, as there is no reaseon why she should have to pay...with regards to her seizures I would ask to speak to the epilepsy consultant...so that you are very clear about how they can be controlled...be frank and ask him his/her opinion if he/she feels her children are in any danger at the moment.

Love to you all. PEABS XXXX

PEABS you are so right!  Susie Sue do not allow your daughter or your family to be bullied by the system.  I know its tough but you are going to have to take control here.  Peabs is correct, follow her advice, your daughter and her children need each other, use your mac nurse, nero onc nurse, GP, consultant oncolgist,social worker and if necessary contact your local MP, even PM and demand urgent help and support.  Do not wait to hear from one group before contacting the next, jump up and down, scream, shout, whatever it takes.  Forget embarrassing, the worst you can hear is no, but in reality most people will want to help and all you need is someone to be sensible and throw the red tape in the bin.  There is help in the system but finding it can be difficult.

Good luck, I wish I lived nearer to you.  I would happily put the kettle on (or more likely get the corkscrew out) whilst you, your daughter and grandchildren took a well deserved break.  Just shared your story with Paul, should know better now off to find the tissues. 

jms

thank you both of you -- we've been trying and asking, trying and asking everyone we can think of but no one seems to want to help! Rachel went to her GP today to ask yet AGAIN about a Mac nurse-- we've asked over and over and even wrote it down lol-- now she's got a nurse from a local hospice coming Monday but still no Mac nurse.. does this mean that this nurse will sort out grants? I've been on my hands and knees tying to clean for her, bathing the kids, and so has my husband, and cooking, shopping, trips back and forth hospitals, but we're not getting any younger and he's been MY carer for 2 years as I've got M.E. not life threatening I know but it means i cant do all I want to do... the kids are hard work too-- no wonder we have em when young! We've also run out of money as we live in france and been paying out on short term lets for somewhere to stay in england, and unfortunately had to return home.. at least i can rid myself of my 4th infection in 2 months and get better to go back to her. In the meantime she's a real trooper and absolutely ADORES her 2 children, she's such a GOOD mum  XXX

Dear Susie Sue...you sound so distraught!! Mac nurses generally DO NOT sort out day to day things..they generally specialise in pain management control, not day to day nursing... It's so difficult getting things sorted and I don't think some people realise that we wouldn't ask unless we genuinely need it..as most people are very proud and want to retain their independence. Am hoping that others on this thread who've been here will offer their guidance to you, as mine is one from one experience. Take care honey XXX PEABS

Hi Susie Sue,

I'm not sure if we've conversed before? but I do empathise with your family situation.  Unfortunately I refused all help early on and I'm afraid that proved to be an error of judgement. Help did come flooding in 11 months ago when it was thought that my wife had days to live, but as she proved stubborn as usual! the help has all but disappeared.  I do get 2 x 2 hours a week sitting service from Crossroads/Macmillan. They are a service for carers and will also do cleaning and shopping if required. They visit, assess and allocate the hours they consider appropriate.  I have no idea if they have this service in whatever area your daughter is in, but if so they will be listed in the phone book, google etc.

My advice would be, build bridges early so everyone is aware of the situation. The help is out there, but some agencies try their very best to hide themselves away from view. Good luck to you all. Martyn.