We Talk Brain Tumours

Hi llowe,

First of all let me congratulate you on your niece's achievement. She must be pretty good to be performing at that level.

I am not at all surprised that your sister was sick after her treatment. I think her husband is right about it probably being stress/worry/anxiety but make sure that the hospital staff are told what happened - they were very kind with me when I was having RT and they know what a trial it can be. I can only speak from my own experience but I do not think that the chemo on itself will have done it. It tends to have a cumulative effect rather than an immediate one. Be prepared for her to become more and more tired (and feeling a bit sick - but not all the time) as the weeks go on.

The blood testing is usual so do not worry. Keep eating as well as she possibly can (I normally eat like a horse but I find it difficult to face much when the chemo kicks in). If she can't fancy much to eat try taking Complan (or similar  non-branded item!) as well as, to keep vitamins etc. Some of the flavours aren't too bad - banana for me! My oncologist recommended cutting out/down on alcohol and caffeine to help with the bloods.

Hope that helps a bit. Loads of people on here will have better suggestions than mine.

Cheers,

Richard

 

Ilowe,

My dad has all his treatment at Essex County Hosp in Colchester and he too had to take his chemo an hour before his RT. He was sick by lunchtime the first day and struggled with nausea throughout. She may need different anti-sickness meds, a more suitable one is usually found through trial and error.

Pete, I'm sorry to hear you're feeling so low (stupid thing to say - only to be expected after all). Is anyone with you? Or do you need some space? I hope Ali's day on the 25th is everything you hope it can be.

My eldest son's birthday is 25th April, I will think of Ali when he turns 16 next year.

Ah, a shared birthday, that's nice.

I'm feeling ok, I think I need to start being by myself.  I could have had someone stay over, or I could have gone somewhere, but I would have had to face being alone at some point.

I went to Ali's nursery school today and talked to the headmistress.  We're going to try and get a story put into the paper (Ali looked after many children during her years of working there).  We're also going to have a bench installed at the school with a plaque on so that parents have somewhere to sit and chat while picking up their children.

Hello Pete, I have been a silent observer on here as I didn't feel able to contribute anything positive. I have followed yours and Ali's journey in particular as you started posting around the same time as my close friend was diagnosed, full info on my profile. I am so saddened to hear that Ali has passed away from this dreadful disease. I feel your pain, I lost my friend 3 weeks ago, although it's not the same pain as losing your wife. Pete, you were such a wonderful husband and your care and commitment no matter what really showed in your posts. You must take time now to grieve, to remember the good times, be angry even at times and eventually the happy memories will keep you going through the sad times. I wish you all the best Pete and thank you for your inspirational words throughout. My sincere condolences are with you and may Ali rest in peace. J x x

Out of the hundreds of messages that I've been sent through Facebook, I wanted to share one with you guys that particularly touched me.

This is from someone that I only know on the internet, through a forum for one of the xbox games that I play.

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To those of you who do not know Pete he is and always has been the real deal. A genuinely caring and giving man that sets the standard for what a "good" man should be. I have known him only through this game and our little garage that he has been a key member of, but I know this : Pete, the measure of your character surely reflects the goodness of the woman you chose to share your life with. Knowing you I could only imagine that your wife was virtuous and gracious, caring and giving. It is not a stretch to say that you both are and will always be the true "salt of the earth". May your memories remain fond and forever as her spirit will endure by your side. May she rest in peace. God Bless you,her, and your friends and family.

I cant speak for everybody but I am certain if you ever need someone to talk to or chat with there will be a line longer than your eyes can see my friend.

Peace to you and yours

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The capacity for the compassion of strangers constantly amazes me.

Pete, that's a wonderful and fair reflection of what pretty much all your online friends have and are saying about you & Ali.  I hope you get to see the registrar and arrange things for the 25th.  Pace yourself with all the form filling and notifying banks etc, my friend lost her husband to throat cancer two weeks ago and she feels like she is slipping under the amount of paperwork she has to get through.

Illowe, I was told to increase my fluid intake during RT and after when I had chemo (I didn't have them at the same time, I had a six week respite), plenty of water and as she is doing the combined RT/Chemo ..... lots of fresh juices and fruit.  I found the worst part about the chemo - constipation ........ boy oh boy that creeps up on you and made me feel worse than the actual chemo.  It lasted for days after the chemo cycle finished, even though I used Senna, lactulose solution, eat licorice, fruit, veggies etc.  Richard is right, it is culmulative and I dreaded my last two cycles but you get through it and it's worth it.  How amazing your Neice must be and great that your sister got to enjoy this precious moment with her family.  I wish her well with the rest of her treatment.  As for telling them about the sickness,  at Queens we had 'RT ushers' probably not their correct title, but basically people who took you from the main waiting room to the small waiting area's by each machine.  On the way each day they asked "any headaches, nausea, vomiting?" and wrote down everything you said.  Meds can be adjusted and it will be trial and error but hopefully they will sort it PDQ for her.

Love & strength to all who want or need it xxx

 

Pete, 

This is the first time I've visited for a few days, and  am so, so sorry to read of the loss of your dearest Ali.  I am beginning to feel rather guilty when I learn of a new 'departure' from our train. We are still on board, while others have travelled much shorter journey's than us, but having paid the same 'price' for their ticket! I do hope that makes sense? Please accept our sincere condolences.  Doreen and Martyn.

Dear Pete,

My condolences for your sad loss.  Will be thinking of you on the 25th.

Charles.

Dear Debs Sorry to hear of your problem of constipation, the only thing that helped me is called movicol, It wasnt painful and works slowly and naturally. You can get them on subscription , the Hospital should supply it. Just a thought. Love Jonny