We Talk Brain Tumours

Hi Martyn. Would you also please send me the link to that site too. I hope you dont mind me asking.

Huge hugs to everyone and hope you rhaving a good day xxx

Hi Fiona,  of course I will, but it does tell it how it is as such!

Martyn xxx

Thank you Martin for your swift response to my query. Completely understand reasons for not publically giving details of the website I wanted info on & only too happy to request you as a friend BUT have no idea how I actually do that!!!!! I managed to get some friends on the old site (how I wish we could return to that familiar more user friendly version) but haven't a clue how to gather new friends on this more modern, new fangled version so again I seek help. Honest I am not completely useless when it comes to technology...............I can use a mobile phone to make a phone call as well as send a text message now & I've memorised the number which after about 10 years of having the same mobile is no mean feat!!!!!!!!

Hopefully some kind person will come along & give me some more assistance. It will be another string to my bow perhaps if I can master the art of picking up new friends on the internet.I'll certainly pick Martin up & hopefully Doreen will not mind. Read somewhere I have to be careful though as there are apparently some dodgy characters about!!!!!  

Evening all and welcome aboard to the Newbies.

Just a quickie to let you know that things are not so good down here in the south at present. 

Jan's end of March scan confirmed my worst suspicions that despite the latest treatment the tumour was growing again and resisting all attempts to duff it up. On 29th March treatment was withdrawn and we are now into the palliative care stage.

Levels of confusion and memory are such that we are now used to be called anything at all and well versed in providing documentary evidence to prove our relationship to Jan. However, amongst this, a bright spot this evening I was recognised as "Husband Robin"; frequent references to "Roger" and "who are you" had started to generate doubts !

Symptoms wise - appetite is all over the place, with high demand for sugary stuff; peripheral vision has waned dramatically and the guards van has been fitted with commercial sized washing machine and tumble dryer.

Coping at home is not to bad, despite the inference. Jan's sister stays from Thursday evening to Monday evening and I muddle along with Jan's brother for the rest of the time on a shift basis.

The local hospice have confirmed that they will find space for Jan over the forthcoming week starting with some respite care.

James and Emily are being real troopers through all of this and I am now in the process of making sure with their school that they know what's happening and feel included. Over the last few months I have become increasingly aware that excluding urchins from what's going on can have disastrous consequences that last a very very long time.

Not much more to say other than I do read on the hoof, so have sort of kept up with the posts, even if I am somewhat quiet at present.

Best wishes to all, as always - Robin

Robin what can I say? You and your family are an example to all of us. I don't know how you manage to cope with everything that has been thrown at you. This thing is so unfair and the inexorable path it takes makes it so much worse. You are doing such an amazing job for your family.

Our thoughts are with you

Charlie

Suetoy-I am a real dinasaur with computers but I think to request someone as a friend you just click on their name in green on their post and when their profile comes up there is a heading ' add as a friend' Click on that and they will get a request they can accept or decline. Hope that is right?

Robin-my thoughts are with you at this difficult stage. Your love as a family shines through and that will keep you going in the coming weeks and months. Love to you all. x

Thanks Y & Y I will try that now.

Robin - So sorry to read your post. I know exactly where you are right now. Sending you love & strength for this part of your journey with Jan. xx 

Robin, I am so, so sorry.  You are a trooper too my friend - juggling everything as you have is no easy task.  To see your darling wife have to endure what she has is devastating but with children we have to find a way to hide our emotions in try and protect them.  But I think you're completely right that they children need to be included and there are times when it does no harm to see your hurt and pain - I think they can easily relate to that.  Glad you have family around to assist you and to help Jan - I hope the hospice get things sorted soon so you all get that respite and it will help them ensure Jan's medications are relevant.  Love to all of you Robin, take care, keep strong and know you are doing so well - xxxxxxxxxxxx

Robin, I'm sorry to read your mail. Although we all know about this illness, you can never really be prepared. Keep on talking to the Jan you know and love Robin, who knows how superficial the confusion is.
You are always very well organized and thinking of how to do the best for everyone but don't forget yourself and be with your lovely wife and tell her often that you love her.
Sorry, random thoughts really, but sending you lots of  Dutch courage.
xx

Hi CH I have sent you a pm. I know they are not very user friendly. Hope you are ok? x