We Talk Brain Tumours

Sworthy sorry to hear about mum's detrioration thoughts and prayers are with you at this devastating time.

Naomi ((((((((hugs))))))))

Want to write something constructive but failing.  To all on this f in train (debs see if this is allowed chief rebel) strength and love to you all keep posting don t know what I would do without our wtbt family Julie xxx

To my rebels & rebellettes, I hereby grant you carte blanche to say what you feel on this thread ( 'effs' and all).

I don't think any of us on here are insensitive or rude enough to use hardcore language....but there are times when only an eff will do!

Am hoping the sunshine is lifting your spirits.

Love & Strength to all who want or need it :) xx

jmd - thank you. I am not particularly close to my sister either. You can't choose your family, right?!xx

Beedarsh - thank you for your kind words. I am so sorry to read of the loss of your husband. Thinking of you.xx

SWorthey - if the end is rapidly approaching for your mum then please try and take some comfort from the fact that it is quick. There is nothing nice about this disease but if it can be rapid, then please God let it be. My thoughts are with you for the difficult days ahead, thinking of you.xx

Majic - I am so sorry to read you so recently lost your dad but my heart was gladdened to read that he passed quickly.xx

_Debs - thank you - you are so wonderful and so inspirational. Sometimes when I write I forget that BT sufferers read my posts. I'm so sorry if anyting I have written has alarmed/frightened you. Keep going.xxx

Naomi.x

Well, here we are. Dad is still with us, even after 8 days with no hydration whatsoever!

After 48 hours of fitting, the hospice sent an emergency courier to the nearest big hospital last night to change his meds. He is now the proud owner of not one but THREE drivers! As is usual when I get there, I checked  his catheter bag on arrival today - no blood today but instead what looks like black coffee!

Today he has slept pretty much peacefully.

Back there tomorrow and still hoping dad gives up his fight soon, sadly.

Love to all.

Naomi.xxx

Just a real flying visit to say firstly to Naomi, I am thinking of you and your family so much these days. You take care there.

Debs you make I laff! I love your posts.

Take care everyone. Hope everything is okay with Peter and Martyn, plus haven't seen Mrs SG for a long time. There are others too. To everyone take care.

Naomi,

There are times when I get a little scared when I read how it will eventually be for myself but that's just how it is and I am a big girl now (not tall just big!) and most of the time I don't join the dots from the patients on here to me.  I just try to be a little ray of sunshine or class clown, it helps me to remember how lucky I am at the moment and just try to help support the folks that are further down the line.  Its also helped me make decisions about the future and that I've already told my husband I don't want to die at home (if at all possible) as I don't want him or the kids having that association with the house.

I went to bed with a cracking headache last night & yep........the bugger is still there this morning.  I have my eldest son off school with a horrible cold (you wont need three guesses who will get it next!) and my other two will be home at lunchtime as its their school open evening for prospective pupils, no peace/rest for the wicked eh!

Hope we hear from our absent passengers soon, still thinking along the lines of "no news is good news".

Love & Strength to all who want or need it.

Thank you Debs, if I cross the line, please point it out to me.xx

Zanandu - I have often wondered about Mrs SG, especially as she last posted when her husband was nearing the end of his battle. Hope she's ready to come back on here soon. Pete and Martyn - show yourselves soon please!

Been to the hospice today - dad still fighting although his breathing was laboured and shallow today. We talked to the consultant about why dad is still here and she said that when someone is starved (dad is now on day 9 or 10 without food and fluid) their body starts to eats itself. Before it starts to breakdown its own organs it breaks down lean muscle mass. Given that my dad was an incredibly fit and active man before his illness, it stands to reason that he has more muscle than most to breakdown first. She said it should be over before he gets to 14 days with no hydration .....

Love to all. Keep going everyone.

Naomi.xxx

Naomi...Every morning I look on here and hope that your Dad has found peace.

As I said..Mark lasted 11 days without fluid and its true...the body takes it from wherever it can. Finally you will have your Dad back..because that bloated steroid face disappears and the face that you love returns and that is the one that you will remember. Dont worry about your sister and your Mum..because you know what you have done for your Dad and he knows it too...which is all you should care about. That and your children....who have to be your main priority. Your sister has come with a full tank..yours is seriously depleted. Even though you dont know it you will have been running on extra all these months and it is only afterwards that you realise this. I have not slept for so many hours in my life as i do now. It is a catch up for a body that has been to the edge. 

Love to all...and especially those who are absent. I wish you love and strength for whatever trials you are facing...and know that we are all with you.

cathi xx

Debs....Keep being class clown ...and I hope that the cold passes you by. I dreaded getting sick while Mark was ill, and I did not. The first cold I got was two weeks ago after I had been on holiday last week. Obviously after I had let my guard down. Do not let your guard down Debs! You are our Reblette. We just need to find our Shepherd Martyn  and we will be fine. I suspect he is cooking sardines.

cathi x 

Continued strength to you Naomi, I really can't think of what you're going through, but you know that all of us are with you in spirit.

Ali is still pretty much the same, but this afternoon while her mother was here she got confused about a few things.  Her sister called in and I told Ali that it was her sister on the phone.  Ali then asked "which one?".  But she only has the one sister.

She also got a bit agitated when her mother and I were trying to changer her on the bed (too many things going on at once).  It also took quite a long time to get her off to sleep tonight, so obviously there's something not happy in her head.  I hope for a better day tomorrow.  Dealing with confusion like this is going to be difficult.

I told the oncologist about Ali's headaches and they're suggesting giving her 4 codiene tablets a day on top of the paracetamol she's being given.  We'll try this for a trial period, but I have the feeling it'll act like a sedative and she'll sleep even more.

Peace to all.