We Talk Brain Tumours

Sue.  Never feel you are rambling or ranting. This is where you can let off the steam that has to be held in at other times.

I do so feel for you. No stage of this journey is easy, but at the beginning you feel so lost ,numb ,angry and confused - and any answers are not the ones you want.  Know you are not alone. Everyone on here..and we are a frighteningly large number, know what you are going through.

Do what you have been doing. Live life to the full. Never give up hope...and take each day as it comes.

Keep posting on here and you will find the love and support that has kept all of us going through the darkest of times.

Love to you, and all who still need a hug

Cathi xx

Sue - so sorry to hear about your hubby. My hubby was also initially treated for a stroke and was struck down by right sided weakness and dysphasia. This did improve with help from physios and speech therapists. We also had a great occupational therapist who helped with re-learning some of the day to day tasks. I remember feeling completely overwhelmed and imagining the future all at once. This sent me into a bit of a spin and I felt very anxious about things (2 small children to care for too). I was given some good advice which was to just deal with the here and now and don't worry too much about what's ahead. What will be will be and you will find the strength to deal with things, just try to stay calm and think of the here and now. This is such a lovely group of people, sadly some of us are now on the other side - but we will provide as much advice and support as possible. Sending hugs xx

Sam is right, try to deal with each day as it comes, and each problem as it occurs.  Trying to look at the big picture is just too much.

Someone wise told me something right at the start of my journey : "You can only do your best, but your best WILL be good enough".  I lived by those words and they gave me great comfort and confidence.

I'm sure I didn't get everything absolutely right, but I gave my wife the best life that I possibly could.

I'm contented by the fact that I could do no better.

Hi Sue

Like many on here, I am also on the other side of the journey you find yourself on and don't post often but I read your post today and my heart just broke for you my lovely. I won't repeat what everybody else has said, I will just say that they are all talking absolute sense and I hope you can take comfort from their words.

Almost exactly a year ago today my husband was in a kayak and was struggling to sit upright, when he tried to get out of the kayak he lost his balance and fell backwards into the sea! Such a small thing at the time but now when we look at the photos we see it very much as the first day of our journey - which also began in water. Your journey sounds so similar which is probably why it touched me so directly.

I often see posts on here from travellers saying 'I have been too nervous to post' or 'I've been hesitant to write what I wanted to say'. I was the same but eventually once I got going, I was posting about every aspect of my husband's condition, practically all of the time! I was worried that I might say the wrong thing or say something that may have upset somebody else. All I can say is, what an amazing crowd, I was welcomed, embraced, loved and supported and the people on here kept me sane. So if you're sitting there wanting to write something and you're hesitating for any reason, just push that button. You'll receive nothing but love and support in return. 

You may also be surprised to hear that there is plenty of laughter on here too. They're a sick bunch, they really are, but they saved me from insanity without a doubt! 

With much love to everybody old and new. Wishing strength to those that need it and much love to everyone whether you need it or not.

Special hugs for you Sue. 

Pam

x

Hi everyone, thank u all so much for your support and messages.

Sue sorry you have had to join us but welcome and don t be afraid to post rant and rave - you will see I do this group is an absolute lifeline to me, if I want to rant I do if I stay silent I do and everyone here understands and helps so so much.

Well all the misery and trouble I have with my gp and surgery if you have not read or heard in the news about the lapdancer who was called 'a dog' and ridculed by the Doctors surgery is oh yes it is our surgery if interested google Aimi Veness Little Common Surgery!!!!!!

Had a very low time, finally got the diagnosis from a stand in gp after a fight (ours on holiday for a month) that Alan is diabetic and they have prescribed oral tablets.  I had such bad attitude from the GP but at least some form of help in medication.  Saw my wonderful Mac nurse today who has suggested we get hospice consultant to assess Alan in absence of gp so that we can have some medical support.  I have pulled a muscle in my neck which apparently is a trigger point so basically I am falling apart at the seams no bloody wonder with all this going on but the positive is Alan keeps laughing at my pain in the way in which he used to so the old man is showing all but slightly through if you know what I mean.

I have talked about how lonely I am finally to the mac nurse and how all and sundry make me feel guilty on my respite hours - her advice is sod them u need it u take it and have a good old drink if you need it - that will do for me!!!!!!!

Love hugs and strength to all on whatever part of this damn train we are on.

Julie xxxxx

 

Thank you for all your kind message, it feels good to have actually joined in after following your journeys over the last couple of months.

I am certainly living in the here and now, as the future is a very scary place.  

To Julie, I can't understand how anyone would deny you a few hours respite, I take opportunities here and there when my daughters are around, you need to for your own sanity.  Our Gp and hospice nurse regularly ask if I get timeout!!

We are away again tomorrow for a few days in Harrogate, we are making the most of the here and now, thats for certain, even if it is easier to stay at home.

Once again a great big THANK YOU!!

Best wishes

Sue

Wow what a difference a day makes - my mac nurse has worked wonders - had so many calls today from different people  and this is the list

1  Having a massage on Tuesday

2. DN came in again today and will be coming in tomorrow so thats everyday since Tues

3.  Carers will come in at lunchtime to help

4.  Shopping done and dinner being made tonight (not by me)

5.  Bigger hospital bed ordered by OT

I remember someone saying and apologies for not rembering who and also more than one, shout and shout louder which I have not done I did yesterday and look what s happened!!

Check me out a happy post!!!!! :}}}

 

lots of love Julie xxxx

 

 

Julie, so good to hear that things are turning around for you and that you're getting more support.

It looks as though your Mac nurse has pulled through and is working well on your behalf.  Hopefully this will continue.

It's such a shame that you don't have good friends around who can cover for you or at least do shopping/cook more often.

If I lived closer, you'd be fat in a week!

Julie..So glad you are getting help at last. I dont post much but I think of you often.

Hugs

Cathi xx

I have just been reading through many of the recent posts and there are so many heart-rending stories. Sue/MrsSG - my dad was also initially diagnosed with a stroke, it does suggest there is insufficient awareness of brain tumours amongst doctors - surely anyone who has symptoms that *could* be tumour-related should be tested accordingly without delay, or is this unrealistic? Zanandu, it's inspiring that you and your husband are planning to go to concerts etc. It had occurred to me that at some point maybe I could get my dad to a concert - it would be nice to think that there could be some things that my dad could still do and enjoy in the time he has left, as of course there are so many things he can no longer do. If anyone else has any bright ideas, let me know!

Anyway, I am back visiting my dad again after a few weeks' absence, during which I returned to normal life, work, friends - I find it weirdly easy to shut out everything that is going on, which makes me feel guilty, especially as my mum is under so much strain.  I feel that my emotions about the situation have been sealed off in some compartment in my mind which will eventually spring open, and I fear that moment. Reading Deli's post about the sadness of wanting to phone her dad and realising he is not there...I am aware that that will be me one day.

But for the moment... well, once again my dad is not happy with having me around - my mum and I did our best to carry on  a conversation during dinner, but he just ignored me and did not attempt to join in. This is frustrating as I would like to be able to give my mum a break but cannot as he will not accept help from me. I have actually just been reading tips on communicating with someone with Alzheimer's, because there are some similarities with brain tumour patients whose mental functioning has been impaired. One thing that I think applies to my dad - don't try to argue, it will get you nowhere! Another nice thing I read was about recognising duality - very simple truths like "The person I know is both gone and still here" or "I am both a caregiver and a person with my own needs". 

Julie, having seen what my mum is experiencing I can relate a little bit to what you are going through - my mum has also been feeling isolated over these last few weeks and she is appreciating me being here, even if my dad apparently is not. I've also seen how incompetent professionals can make a carer's life more difficult when they should be doing the opposite - my mum has had to spend hours chasing around the hospital trying to get hold of medical supplies.

I live and work in Germany and several German friends have recently said to me "Ich wuensche dir viel Kraft", which translates as "I wish you much strength", a nice expression I think. So that is what I wish to everyone reading this board.

Charlotte