We Talk Brain Tumours

ty for the pain relief advice wehave had a talk with the docs and are in the process of testing new the new meds, we are holding off on the oxicotin until his resistance has built up. next step radiotherapy.

Morning all - from the slightly damp south here (must be a bank holiday w/e).

Things are progressing as we all know they will with Jan; solid and fluid intake has now ceased and the syringe driver with morphine has arrived. Other than that Jan remains comfortable.

I told James and Emily last night that Mummy was deteriorating and wouldn't be coming home and will die before too long - they were really very calm about this news, but as they have lived with this for 2 1/2 years and have had access to information and discussions at school I think it was no big surprise. Back to propper sibbling squabbles within half an hour anyway - so normal sevice resumed.

Martyn - Hope you are coping ok and the support is working as it should for you. Love to Doreen and am hoping she is as comfortable as Jan.

Dimmy - Hi. You and Adrian appear to be going through it at present. TMZ and sickness can range from 'no problem' to 'cannot tollerate'. Buried in our profile is the routine and anti-sickness drugs that worked for Jan - tollerance was really quite good and she was able to go without the Dex' which was originally prescribed as part of the cocktail - I am afraid it's trial and error, as you will have gathered. Try starting the anti-sickness meds 24 hours in advance of the TMZ.

Your boys are a little younger than James and Emily, now nearly 11 and 8. At 9/10 there will be a realisation that there is something wrong and it might not get better, at 5/6 when Daddy is ill he will take medicine and get better. At 7 this perception will start to change. Like me you will find that your boys fall into different age groups in terms of understanding and realisation; the publications (and there are many) give advice on levels of understanding and that children should be included in the process, what they don't do is tell you how to talk to different age groups; I have been advised 'at the same time' but cover the topics and information levels of both age groups - this worked yesterday. The second thing is when to tell children that mum or dad is going to die - the advice is consistent that they should be told, but none broaches the matter of when. I have left it as late as I dare purely because kids perception of time is very different to adults and I didn't want them to live with 'Mummy is going to die' for any longer than was absolutely necessary. Let us know how things go.

Best wishes to all for the bh w/e - Robin

Robin - I am so sorry to read your post today. No parent should have to tell their children that the other parent is going to die. I am so relieved that Jan is comfortable though, that at least must bring some comfort. Wishing you all the stregth in the world to cope with these final days, and looking after your 2 gorgeous children.

Sally xxxx

Hi everyone

Only come on here in response to Robin's post - I am so sorry Robin.  You are so brave, though I obviously appreciate there are no other choices in all of this, but still ... I hope the children continue to cope well - it will be Jan's absence in time that will have it's true affect don't you think, the reality is beyond their comprehension I'm sure as I don't think even as adults we can ever get to grips with what life will be like when we're without our loved ones.  I also hope Jan continues to remain comfortable and that you are able to have these remaining days together with peace and calm around you.  Take care Robin, thinking of you xx

Hi Robin,
Thankfully our 2 girls are of a different age and have been with us since the beginning of our journey, they are a great comfort to us both. The support services are performing admirably although my tolerance levels have decreased somewhat. From welcoming them in with open arms at the start of this latest chapter I now seem to be very prickly and pick up on the slightest blip. The doctors and us are finding Doreen’s condition quite baffling, she is now taking in some semi solids and a small amount of liquids, this is a vast improvement from a week ago. To be perfectly frank, from being a few days away from the terminus, she is has just passed through an amber signal, we are in limbo at the moment.  It seems as though both our loved ones are as comfortable as they can be made and are not lacking in love and care.
Love and best wishes to You all.
Martyn XXXX

Robin- thinking of you in these next few difficult days. Your love and strength as a family will surely carry you through. x

Martyn - difficult times for you and Doreen as well. We have just been in a similar situation - this time 10 days ago we all thought that the end was only days, or possibly a week away. But by starting the dexamethasone again my mum has improved dramatically. The consultant has warned us that this is, of course, only temporary. So we too are in limbo land, although at the moment my mums is physically much better, and she's now started eating and drinking again too. She went to the Cathedral on Thursday to plan her funeral and has stipulated which flower arrangements, which hymns, anthems, which particular Dean is to do the reading etc. I wasn't there, so I ahve no idea if the Cathedral will be able to meet all her requests - like many others with this horrible disease she seems to have lost all reasonableness. She is forever having a go at her poor husband who is a Saint. Last week, and again this week, she ordered the District Nurse out of the house and has now told her she never wants to see her inside her house again. I'm not quite sure what this is going to entail in the future - I'm hoping there might be another DN who may be able to come instead and maybe come on a better day?? But I suppose 10 days ago she wasn't talking, barely responding, only really sleeping so I suppose we should be thankful that we've had this little extension of time.

And it's raining!

Hi Sally,  raining here as well now. At least I don't feel guilty at not being out sorting the garden!  The one thing I am grateful for is that Doreen has not had that personality change, if anything she is more subservient. I suppose that is due to the tumour's type and position?  Whatever, this must be one of the cruelest bloody diseases!  Like you say we should be thankful for whatever extension we get as long as there is some quality with it.

The very best wishes to you, Mum and the family. XXXX

Hi Robin & Martyn

I am sorry to hear about Jan and Doreen but pleased to hear that they are both comfortable and being well looked after.

You both sound so brave, not sure how I will be if the worst should happen.

The more I read everyone's journey are we all just destined for the same outcome.  I often question what is it all about putting our loved ones through this horrendous treatment.

We are a year in now and it doesn't get any easier.  I suppose what keeps us all going is that we have to remain positive and hope that our loved one will be the one to beats all the odds.

Take care both of you and lots of love to your families aswell

Ann x

Hi All & in particular to Robin, Martyn & Sally.

Each of your posts echo the situation in our household.  A few weeks ago Pete was not eating or drinking anything as was sleeping most of the day & night. I truely believed like you Martyn that we were reaching the end terminus but then the train slowed down considerably and Pete requested small items from the buffet car again. He had a syringe driver fitted  in April to deliver his dexamethasone and a few days ago they added diamorphine because he was having muscle spasms particularily in his neck which was seizing up due to the position he was lying in in bed. He hasn't felt well enough to be hoisted out of bed and so he has remained there for more than a week now. Today however he is more awake although still very very confused so we too are in limbo. His food intake is zero again and has been for the last 4 days but when awake he is still managing a small amount of fluids.  

Like your Mum , Sally,  Pete's personality has changed and sometimes he can be very unreasonable. It is incredibly hard especially when you are tired to cope with the harshness. I can only sympathise  It is good that your Mum has improved a little, I hope that it continues & that you can enjoy some more happy times with her . It made me smile when I read how she was making her plans at the Cathedral but at least you have some idea what she wants now. I haven't been able to get Pete to share his thoughts on that one so will have to do what I think he might want when the time comes .......... but after nearly 35 years of marriage I think I might be in with a chance of arranging something suitable that would meet with his approval!

 Robin I know how difficult it must have been for you to talk to your children about Jan's immenent death. With our girls I am still struggling over the timing of THAT  talk. We have of course discussed Pete's illness and they know that his BT cannot be cured but we decided not to labour the point when he was first diagnosed in July 08 because no one could accurately tell us the timescales. As we all know the very nature of the illness is unpredictable and everyone's experience is different although there are also many, many similarities along the way too. I know we made the right decision when we spoke to our girls initially and since about Pete's tumour and given their ages ( now 17 just & soon to be 20 on 7th June) they appreciate the deterioration in Pete's condition BUT still I cannot bring myself to broach the subject of his death as I was close to doing this a few weeks ago and then he rallied. No time is a good time I know but our youngest daughter is in the middle of her AS level exams with the last being on 9th June and as mentioned our eldest is due to celebrate her birthday on 7th June and is not yet home fom Uni. I am desperatly hoping for their sakes that Pete will make it beyond these dates although equally it is getting harder & harder for Pete and I don't want him to suffer any more.

This bloody illness puts each and everyone of us through a mental and physical torture every day and it is so very, very cruel . At times it is unbearable and yet somehow we still carry on. I hope Jan & Doreen  remain as comfortable as possible. All we can wish for is that our loved ones are comfortable and at peace when they near the end of their journey and that those that are at the start or in the middle of their difficult journey manage to make the most of their precious time with their loving families. 

Sending love and strength to you all.

Sue xxxxx