We Talk Brain Tumours

poor Dutchcloggie, I'm so sad for you.. it must be a relief to have doctors to help you to make the decisions you've been making alone all this time.. how so very difficult it has been for you.. bon courage XXX

Olivia,

I remember when Steve was admitted, and I came home, and the house felt like a shell- the heart beat was missing....thats how it must feel each day....?thinking of you very much at this time  as you undertake a very different journey. I know when I lost my parents, I had days when I was okay and then I had days when all I did was cry, and then I had days when I wanted to shout at everyone. Grief and loss is so different for every single person. I don't think the pain ever goes, but I think I've learned  to adjust and live with the pain. You take care.

Pete,

I too loved hearing about Ali's unique drinking utensil! She sounds like a lady who knows her own mind!. I also can identify with the guilt you felt when you went out for the day on your own. The fact that you prefer to be with her no matter what. I know I felt like that in the early part of our journey.

Mrs SG

Hope that Mr SG is settlling and that they are able to find out the cause of his infection. Let us know how things are going there.

Dutch

Thinking of you at this moment and time. Very much. The fact that Jane is in a hospice means that you can just focus on the most difficult part of her journey. You take care.

To the rest of you that are undergoing different stages of journeys, thinking of you all very much indeed.

We have reached a milestone today. It is the 1st anniversary of the day that Steve was diagnoised. It has gone so very quickly. He's still word muddling at times and looses his trail of thought at times, and there are days when he could sleep for England and also he gets a slight weakness in his right arm and leg from time to time- but thats it! He is still independant and has a good quality of life. We take each day at a time.

You all take care

Julie

Thanks loads to you all. You can have all the support going from family and friends but at times it means so much to hear from other people who have been exactly where you are and feel what you are feeling.

God bless and thanks again to you all.

Olivia

Whilst at the hospital, saw the Dr today, MrSG had a CT scan last night as they were concerned he was continuing to be unresponsive,  it appears the tumour is showing signs of re-growth as there's alot of swelling going on.  They've upped his dex to 16mg to try to help.  The full medical team (neurosurgeon, oncologist etc) will be meeting on Wednesday  to discuss his case and agree next plan of action.  Dr I saw today mentioned possibly chemo, radiotherapy.  However I was under the impression once you've had your full 6 week quota of radio (which MrSG has and only finished around 4 weeks ago) that was it? - I didn't think the body could tolerate more exposure to radiation?

Will have to wait and see what happens on Wed, poor MrSG was complaining of a headache when I went to visit today (not surprising) and I could clearly see his eyes looked swollen.

They're keeping him on HDU, there's only 4 beds on the unit so at least he's being carefully monitored which I'm pleased about.

Seems the cellulitus infection is under control and it is just a co-incidence that this has happened whilst he's been there.

Feeling very anxious and worried today.

x

MrsSG.  Sorry to hear of the latest developments.  I wonder if talking to the medical team about the possibility of a shunt may alleviate some of the pressure inside the brain.

It's only a question to raise though, as the operation in itself causes swelling which the med team may feel would overload the situation.

Ali is also on 16mg per day and has been for about 2 months now.

I feel guilty today for feeling somewhat resentful at having to spend all day indoors with Ali (she's too fatigued to go outside and was happy snoozing on the sofa).  It's been a glorious weekend, the kind of weekend that we really used to enjoy being outside for.

Sigh.  It's going to be a long, frustrating summer for us.

That being said, however, caring for Ali in these past few months has been the most fullfilling experience of my life.

Hello and lots of love to everyone on here. Sorry I've not been on for so long. Prepare yourselves, this is going to be a long post (apologies in advance).

Dad is still with us, in body if not in spirit. He is 7 1/2 months post diagnosis at which time he was given a maximum of six months. He had the standard six weeks combined RT/chemo then two courses of 23 days off/five days on TMZ. After the second course it made him so poorly, he made the decision not to have any more treatment and signed his DNR at the hospice. At that time (February) we were told he had possibly four weeks left to live.

Ironically, since he made the decision to stop treatment he is remarkably well physically. His steroids have been reduced dramatically and his seizures are well controlled with medication. He has no headaches and minimal nausea. He leans to one side and needs two sticks to get around but still manages a daily stroll around the block. He continues to lose weight and every morning has four hours of continous diaorrhea but still feels "better" than he did pre-collapse and diagnosis.

However, mentally it's a whole other ball game. His confusion (the hospital call it dementia) has become increasingly distressing to the point that I don't know how my mum copes/lives with it on a daily basis. He is obsessive to the extreme about time keeping. Mum is taking him back to the Isle of Wight next week where he was born and raised and has written down and explained to him on numerous occasions their itinerary. He is already worrying unecessarily and needlessly about missing the ferry on the way back. Today he was in tears about it. He cries a lot and this is a man I had never seen cry before. He stops in the supermarket (when mum manages to get him out) and cries in the aisles.

I have found his oncology team to be amazing at dealing with his physical decline but not so good at the mental decline. They put it down to the whole brain radiation he had at the start of his treatment but it's progressive so stinks of tumour activity to me.

Anyway, I have rambled on enough. I'm not in a good place right now and feel like I'm waiting for my dad to die which isn't fair on him or any of us.

Thinking of you all on here, keep going.

ZoeTeen - I've just caught up quickly with the news on here and may I pass on my deepest sympathies to you regarding your mum's passing. I'm so sorry I am so late in doing so.

I remember you joining here soon after your mum was diagnosed and it shocks and saddens me how little time she had. This is a cruel and nasty disease and I hope your mum is somewhere with a smile on her face, watching her family and eternally happy and at peace.

With love,

Naomi.x

Naomi.  Sounds like you're in for a rough ride.  Dealing with physical disability is one thing, but mental disability is something entirely different to work through.

All I can really suggest is to be patient and remain calm.  It could well be that your Dad knows what he wants to convey, but the messages are confused coming out (Ali told me today quite distinctly that she wanted me to get her a betting shop!).  I'm sure that the tears are those of regret and frustration.

On a personal note, Ali is still fatigued, but today started wanting to stand up, just for the sake of standing up.  So whenever she wants to, I support her in standing and give her a good hug and a back-rub while supporting her.  She desparately wants to stand unassisted, but she'll just topple over sideways (balancing on her good leg is a difficult action right now).  Getting a physio soon, we hope.

Naomi,

Thank you for your lovely message, in a way I am glad mum had so little time regarding the effect of her suffering, but also feel that  we were robbed of such a lovely beautifull person in more ways than one, I talk to her every day and give her a big kiss every morning and night,  but miss her like no words can describe, I suddenly feel extremely lonely. xx

So now have booked a hol going Friday hopefully if the ash cloud goes away and am going to try to be tear free for the sake of my girls and my wonderfull supportive hubby.

It is a long and heard journey especially as you are watching your dad decline, as for the memory I agree I think it is the tumour playing up a bit, we had much the same one day really good, the next like a child and couldn't remember things, mum had lots of tears and said it was because she didn't think it was her going through this and it just made her frustrated and sad, and she basically was fed up!! but the next minute she would be smiling and calm again and my mum.

She also got fanatical about time keeping and tidying everything in straight lines, a bit ocd sometimes, weird as she was never like that, again "Alfred" playing her up.

But I found we all rallied toghether and were there 24/7 with her and even though I lost her the day she was diagnosed I still smile at the times in the hospice and the time we had left.

Keep strong and just be there, you do feel like you are playing a waiting game, but make the most of your precious time together, and just love him xxx

Sorry if I have rambled or upset anyone xx

Thinking of you all

Teen xxxxx