New member.

Hello Pitman1961! I’ve been here on and off while dealing with grade 4 astrocytoma, and I always find it helpful. How are things for you?

Hi Leeluu , thanks for the reply . I have just updated my profile to my current situation so it's all on there . Feel free to read it .

I have been on this site for a while but not really posted much but I am now thinking that I should be more actively involved .

Peter , my real name ;-)

Hi Peter, just read your profile - that’s a lot to deal with in the last year. It’s so odd to read people’s stories - they can sound so calm and yet expressing yourself online takes out so much of the real fear and stress. It must have been an awful year. I think I was in a daze for a while after my diagnosis, but tbh I can’t remember it very well, it was all so intense. Also my craniotomy left me with a lot of memory issues which are actually improving with time.

its just good to hear from people who are having similar experiences. I don’t know if I’m actively involved, but I like the thought of that. Are you looking for help, questions, or just conversation, I wonder? (I’m now asking myself that too!) 

Alex 

Hi Alex , thanks for your reply . 

It has been a tough year but I genuinely feel it is harder for my family than it is for me as they feel so helpless at times . But as patients all we ask is that they are there for us .

I think over the years of  having 3 monthly scans I have learned to prepare myself for bad news when I go back for the results . It's almost like waiting for a day that you don't want to come but know deep down it will happen sometime . My wife always says that on our journey to the hospital for results I am very quiet and she doesn't . know what to say . I always say to her that she is with me and that is all that I need . 

I have mentioned elsewhere that going to the Christie can be a good kick up the backside if I was feeling a little sorry for myself as I regularly see people there who are having a far worse time than me. 

Regarding the forums I think it is good to speak to people who fully understand what you are going through and I really wish I had got involved sooner but I'm here now for any of the reasons you mentioned . 

Thanks again,

Take care ,

Peter

HI Peter

a warm welcome to the group. I had a read at your profile. Thanks for sharing. What a lot you have had going on.

I replied on your other post before I realised that this one was here.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

love n hugs

Wee Me xx

Hi again Wee Me ,

I just replied to you on the other post .

You will have to be patient with me as I am new to this but I have to say that I am thoroughly enjoying the interaction already although I sincerely wish none of us has any reason to be here .

But as the song says Que' Sera' Sera'

love n hugs ,

Peter xx

Hi Peter, I totally agree that it’s harder for our families - mine have been amazing and I dread the time when I need to put even more pressure on them. My mum is in her 80s and has already lost my brother during COVID, so I worry that losing me as well is going to break her. Luckily I’m doing well for now, and can enjoy my life without help.

it sounds like you and your wife can talk openly about things which is great. Do you try to be more upbeat than you feel, for her sake? I do with my family, but I think it helps me too, and I have friends I can tell my darker thoughts to…

glad you’re here at the forum - this is a different level of sharing though, and feels helpful.

hugs from Alex x

Hi Alex , apologies for the delay in replying . 

Yes its definitely worse for the families . One of my daughters lives in York ( I am in Wigan ) so she feels quite isolated at times but is always checking up on me and visits quite regularly  as I can't drive due to my brain tumor . My other daughter is back at home having split from her partner and I love having her here . Well , except when Everton play Liverpool as I am a Blue for my sins .

I don't really talk about stuff that much to be honest . It's not that I'm trying to be more upbeat it's more of a case of I tell them we will just carry on with our lives as normal as possible .

When I first got my brain tumor diagnosis my daughter brought her wedding forward by 12 months because she was worried about me and at first I questioned why but realized it was her love for me and wanting me to be well enough to walk her down the aisle that was the reason . I was so glad she did and in November I had one of the happiest and proudest days of my life !!

I think my philosophy throughout all of this journey is that I have always said to my family that we will worry when we REALLY have something to worry about . 

Whenever they tell me that they are worried about me I ask them what is bothering them and they say that they don't really know I say well why worry then ?

None of this is bravado or even ignorance on my part . It's just that I don't want them to spend all their time thinking about what might happen and be missing out on their own lives .

I too am so glad to have got involved with the forums and even though it's only been a few days I feel really comfortable here . 

Thanks again for your reply , have a lovely weekend .

hugs from Peter xx

Hi Pitmag

Thank you for your message.

We good have brought forward our plans for year this.

I have made have been to make lots of decisions 

Although, taking it day by day we try to up some things 

My daughter is coming  home for the weekend with her husband at the weekend. We are probably  out for lunchsome 

• This assumes the stables are removed .I am under  a week since surgery Seems longer  

Next week a close friend is coming to visit. Lunch again!!

Agreed, although not easy i have found the hold experience very interesting and positive. The surgery was amazing.