We Talk Brain Tumours

MrSG's funeral went ahead yesterday and turned out just as I had hoped.  We were about 10 minutes late due to a broken down car blocking the road, but other than that everything was just lovely.

I was overwhelmed by the generosity of the donations and the number of people who turned up, genuinly touched by the support shown.

Decided that it would be for the best if our 3 year old went to nursery as planned, this felt like the right thing.  Our daughter went and although got really emotional during the servicve, she said to me afterwards how nice she thought the day had been (bless! - she's only 7).  I found it an exhausting day, very emotional but incredibly jovial in parts too.  It ws lovely to wander around the room afterwards and hear all the different stories and memories people held. 

Today I've started looking at some of the formalities, there's quite alot to start dealing with, but I'm very methodical and will just plough through it all in my own sweet time.

I bought a beautiful spray of flowers which travelled on the top of the coffin and unconventionally brought it home with me afterwards.  The red grand prix roses have filled two vases full and I've pressed some of the others for posterity.  

Life is a bit weird just now - so many adjustments to make, but luckily the children appear to be 'ok'.  I've some great friends around me who are making sure we're OK and have plans for the weekend etc.  I guess this is where our new chapter begins.  I've just booked a short break away for the week after next with the children and my parents, it will be so nice to have a change of scenery and an opportunity to recharge - it will be the first time of being away from home in 16 months!

Love to all

xxx

Sam, glad to hear that the service went well and that you've got to the end of it.

The paperwork isn't too bad.  I basically put things into piles of what needed probate and what I could do without it.  You'll find that phoning all of the various companies to notify them will be fairly painless - I certainly had a lot of tact and compassion from the people I talked to on the phone.

Please, let us know if you need any help or advice.

Pete - as I am a technophobe I can't work out how to message you on here?!! I would be interested in meeting the people that have helped me so much, it's a grand idea. Please could you message me on here or Facebook so that I can reply and give you my email address? Thank you!

Naomi x

Sam,

I was pleased to read the final part of your husband's journey went as you had wished. Although a terribly sad day, it does bring some comfort when you see how many people loved and respected him.

I think you made the right decision sending your 3yo to nursery, there will be time in the future for him to understand. For now, he just needs you and the security of his normal routine. Your daughter sounds like a lovely young lady, how proud you must be of her.

I hope you enjoy your break away, it is truly needed for you all. You have devoted yourself to your husband over the last 16 months and now it is time to start healing and restoring. Fingers crossed the sun shines for you.

With love,

Naomi xx

Dear Deli,

Many thanks for your comments/reply.

As always best wishes to all.

Elaine B.K.

Hi everyone

This morning start of new infection, wheezing and anitbiotics on there way.  Alan not had a very good week, feet, ankles legs all swollen, rash on left arm, our GP visits 3rd time since stroke, to offer the only advice of oh well its the steriods - very pleased this morning as when phoned on call doc he prescribed antibiotics over the phone so did not have to endure a tireless visit and have to go through the complete medical history again and again and again.

Mrs SG so sorry to hear your sad news and my thoughts are with you and your family, I hope the funeral went as well as you wanted huge hugs my lovely.

Pam ((((((((mwah)))))))

Naomi, lots of love

To all and everyone hugs and strength all round.

Today is the anniversary of my dear mother in laws passing, three years ago, she was more of a mother to me than my biological mum, Alan was so so close to his mum, he does not remember what day it is and I found it so difficult going to the churchyard with flowers this morning whilst the carers were in, so many emotions, driving past the farmhouse we all lived in, brought my children up happy happy memories and then the family gravestone cried for ever but in some weird way feel more able to face things today which have not been able too for a long while.  I m so glad that mum s not here to watch her beloved son go through this hell.

Sat in the frontroom at the moment with my granddaughter and godson, they are on the wii me on laptop and i actually have some normality - Alan fast asleep upstairs, fed and watered, he is sleeping more, not making much sense when talking, very angry and moody, my heart breaks for my beloved man -RIGHT stop wallowing in this and now for Mario

Love to you all

Julie xxxx

PS Pete you have my email address and please count me in on the meet up x

Julie, good to see you posting and thanks for keeping us up to date.  I hope that this recent episode gets resolved soon.

I also hope that you've not managed to batter someone with the Wii stick yet!!

As for the social event, I've added you into theWTBT Facebook group, s if you're active on Facebook, you can keep track of the oganisation of it.  It'll be so good to see you there.

I've just had a bit of a mother's day with my mother.  Taken her out to lunch and a bit of a walk.  She's taken a few of Ali's clothes and seemed quite happy to have them.  It's awfully weird to see someone else wear Ali's clothes, but I'm glad that good use is being made out of them.

Hello,

I wondered if anyone has any advice - my dad has a GBM grade 4 (diagnosed in January) and due to the mental and physical impairments caused by the tumour - and probably the high does of steroids too - he is no longer really capable of functioning on his own or thinking rationally. My mum doesn't live with him but has taken on the role of primary carer and has been spending a lot of time at the house (she is responsible for administering IV antibiotics 3x daily for the infection he developed in the biopsy wound  - she's not a nurse but was told that the only way my dad could leave hospital was if she volunteered to learn how to give the antibiotics, which she was able to do over the course of a few training sessions before he was discharged - rather unbelievable that somebody with no background in nursing is allowed to do this!) . I have also been staying for the past week and will be there for another week but then have to return to work. But of course, it is very hard for an independent, self-sufficient man to accept that he losing his independence, and he has been claiming that he can cope on his own and that he wants to be left alone in the house - which is clearly something that we cannot risk, so we have to find a way of persuading him that this is impossible. He has been particularly resistant to having help from his children and has said some quite hurtful things to me over the past week (claiming I am doing nothing and have given him no support), which I am trying not to take personally - there are such a huge number of factors coming together to affect the way a brain tumour patient behaves - the clinical symptoms and medications in combination with shock, confusion, fear etc. My dad has already been through a huge amount of stress - the above-mentioned wound infection resulted in a 2-week hospital stay meant he was told he was no longer able to receive the 6-week radio plus chemo and will now only be able to have the 2-week radio, which was a huge blow to him.

I wonder if anyone else has any thoughts about how best to deal with the mental/emotional state of brain tumour patients.

Thank you so much - and my sympathies to everybody on these boards who has lost a loved one to a tumour.

Charlotte

Hi Charlotte...Sorry you have joined our group but you will find good  support on here.

Well done for not taking the hurtful things personally..it is very difficult but unfortunately par for the course in the life of the BT carer. Try to remember this is not your Dad, its the BT talking and it is not something he can help. You are so right that he cannot cope on his own but it is very hard to reason with this illness. Perhaps you should suggest that you are all only helping in the short term and remind him that the RT is going  to make him very tired. While this is going on..start shouting to Mac Nurse if you have one , Social services, District Nurses and GP.  The wheels turn very slowly so get things in place now.

It is likely that your Dad will become progressively more tired so he will accept more help as time goes on...it is just difficult for previously fit active people to give up control in such a short space of time.

There will be lots of my fellow travellers around later to give you all their hard won advice. Take care and keep posting.

Love Cathi x

Julie. We may not be posting much but your are never far from our thoughts.

Cathi x