Dad has terminal Brain Tumours. ...: Cancer Research UK Forum

19 Replies Last post: 09-Feb-2010 21:04 by katedenyer1 1 2 Previous Next

Dad has terminal Brain Tumours.

26-Jan-2010 12:49

Mikef 10 posts since
26-Jan-2010

After taking my Dad into A & E on Boxing day last year suspecting a minor stroke we were given the devastating news that he has 3 secondary Brain tumours that are apparently beyond treatment. We were then in hospital with Dad until New Years eve whilst he had MRI and CT scans to look for the primary cancers however we were told that this would have any bearing on the end result.

On New Years Eve after my Dad, Mum, Brother and Sister and I had tried to come to terms with what we were told we were informed that we could take Dad home. The consultant said to make him as comfortable as possible and to try to enjoy the time that he had left (or words to that effect).

At no point since the original diagnosis have the family been told where exactly the tumours are, what to expect, how long he may have to live. We have simply been told that every case is different it could be 1 month and it could be 5 ?

My Dad was discharged from the hospital on New Years eve and (Thursday) and then visited by a District Nurse the following Monday. She had no details other than a discharge letter that said Brain Metz !! The nurse explained that he would be refered to Macmillan and St Rocco's Hospice in Warrington but I had to push this myself as we had heard nothing for a full week.

He then went to his GP on the next Monday and the GP had no notes on the Cancer (just a discharge note). The family then went to the hospice to try to get more info on his condition and still they had no notes. On Monday 25/1/10 the GP still had no notes and asked my day what the plan was and had he not been offered any treatment. IS THIS NORMAL My poor Dad's reply was that he was just waiting to die !! He is a young 68 and has always been fully active, never sitting still and always on the go. He now cannot dress himself and he shuffles around like anold man waiting to die ! Is this the drugs or the swelling in the Brain ?

We have an "Emergency" follow up appointment with the Consultant that discharged him on the 11th Feb and hopefully then I can find out exactly what parts of the Brain are affected. Is it usual that this information is not shared with families ?? Can anyone please advise me as I have even tried speaking with the Consultant himself only to be told that he had faxed of the papers to the GP on the 8th Jan ?

The Nurses had told me that the best info available was from this site but how would I know what to expect when I do not know and cannot seem to find out what sections of his Brain are affected. ?

Like many of the posts I have read I am the older of 3 kids at 41 and I have tried to be strong for the family and held my emotion in from of everyone. I did have a lapse on New Years eve in front of my wife but I feel that may explode at some point as the pressure and stress seems to be building. It may be that I am creating the stress myself but I feel that If we new what was going to happen it may be easier to deal with. I hope that someone can help ?

Thanks

Mike

Rodis 731 posts since
25-Jun-2008

1. 26-Jan-2010 15:50

in response to: Mikef

Re: Dad has terminal Brain Tumours.

Hi Mikef,

I have just lost the detailed reply I did for you so this will be brief. The treatment you have received is unacceptable. Go to the GP who should now have the information to hand or contact the consultants secretary and ask for a more urgent appointment than the 11th February or contact the cancer care nurse who should have been allocated to your Dad at diagnosis. Failing that contact the P A LS office at the hospital which your dad attended and inform them of your concerns and dissatisfaction - they should get back to you in 24 hours.

Come back to this site and let us know how you get on - your Dad and his family deserve better treatment than this. My thoughts are with you all. Rodis.

Mikef 10 posts since
26-Jan-2010

2. 26-Jan-2010 16:55

in response to: Rodis

Re: Dad has terminal Brain Tumours.

Hi Rodis,

thanks you very much for your kind reply.

It has taken me a month of discussions and phone calls all instigated by me with the consultant, the Nurse, Macmillan and The Hospice to find out that I had to do exactly what you have kindly told me to in one paragraph.

I have spoken to the Nurse - No Info, The GP has no info, The hospice St Rocco's - No info (all only had a discharge note and in some cases this was only sent because I chased it). Ok I accept that we have had the worst weather for 30 years but it lasted just over a week and still no paperwork with full diagnosis.

How can medication be prescribed without this information ????

Just before coming back to my computer and reading your words I telephoned (3rd time) the Consultants secretary and she assured me that the info had gone to the GP on the 8th Jan. The GP and the Nurse denied this only an hour ago !

I had written to PALs 2 weeks ago and I have had a reply and they asked for Dads consent by signature. I posted this today.

I requested that the "urgent appointment" be brought forward and she is coming back to me to see what can be done.

I wish that I had communicated with you 3 weeks ago.

Thanks for your help and for taking the time to write to me, I will let you know how we get on.

Mike

Rodis 731 posts since
25-Jun-2008

3. 26-Jan-2010 17:18

in response to: Mikef

Re: Dad has terminal Brain Tumours.

Hi Mike,

This goes from bad to worse. Why not try the Cancer Research UK contact a nurse on 0808 800 4040 it is worth a try as they are much more up to date with these problems than me - I am a bit rusty to say the least.

My husband and I have both had involvement with P C T'S for cancer his is on going ,I am a survivor and have not experienced anything like what you are going through. I hope other members will come on board with solutions for you. Keep me posted. Rodis.

Roseanna 20 posts since
21-Jan-2010

4. 26-Jan-2010 17:24

in response to: Mikef

Re: Dad has terminal Brain Tumours.

A few years ago my mother was diagnosed with a massive aneurysm and the GP told us she was faxing all the scans and paperwork to the local consultant - she said he would almost certainly ring that afternoon. We heard nothing and by the time I had gone back to the surgery, got the consultant's number etc. etc. the office was closed! After a protracted "chasing around" I eventually established that the fax had been sent the wrong way round - the secretary remembered blank sheets coming through!

The papers may have been sent - but the main point is that they weren't received! Surely they can be sent again!

Hope this is all sorted out for you very soon. The hospices are generally fantastic at advice and help - they often know more than the GP when it comes to palliative care and Macmillan is said to be wonderful too.

Mikef 10 posts since
26-Jan-2010

5. 26-Jan-2010 19:08

in response to: Rodis

Re: Dad has terminal Brain Tumours.

Hi Rodis,

thanks again for coming back, it is great that you are a survivor of this awful illness.

I worked with a lady last year who had major surgery following a major issue with cancer that was surgically removed from her abdomen.

She looks great and is a real inspiration, she now has a job at a Doctors medical centre as a receptionist dealing with patients and she loves it.

We will as a family get through this but I really feel that answers are due to us.

Its good to speak to you again and also inspiring that you are speaking to others to help them.

Thanks

Mike

Mikef 10 posts since
26-Jan-2010

6. 26-Jan-2010 19:28

in response to: Roseanna

Re: Dad has terminal Brain Tumours.

thank you for your message it is really good to communicate with people who have gone through similar things as you do sometimes feel that its just you.

You are right Macmillan and the hospice have been fantastic.

I will keep updating as this is helping me personally already.

Thank you.

Mikef

katedenyer1 40 posts since
18-Jan-2010

7. 27-Jan-2010 23:17

in response to: Mikef

Re: Dad has terminal Brain Tumours.

Hi Mike,

I just wanted to write a wee message to you and ask you how things are for you today, and if you have heard anything further? I am so sorry to read how awful your experience of this has been. It is enough to try to come to terms with your dad dying without having to chase information and do other people's jobs. We had a similar experience, my dad was diagnosed with cancer 9 weeks ago, we were told the prognosis was good, then last week we were told it has spread everywhere, including his brain membrane, and his deterioration since last week has been immense and he is now in a hospice, i don't want to go on about my situation, but in response to you saying your dad is shuffling around and not himself, it is so similar to my dad. His confusion has got much worse and sadly he can't be left alone now and he can't understand a normal conversation. It is terribly hard to see your dad go through that, like your dad mine is young, he is 56 and was the most intelligent man i have ever known, so this is a massive shock. i found it comforting to read on this forum other people experiencing something similar, so i hope this may help even a little. I think the advice you have been given about finding out crucial information has been very good, and i hope you have found more out by the time you read this. i will keep thinking of you and your dad, you sound like a rock in your family and that is amazing, but you need something to lean on too so please let us know how you are...kate x

Mikef 10 posts since
26-Jan-2010

8. 29-Jan-2010 15:40

in response to: katedenyer1

Re: Dad has terminal Brain Tumours.

Hi Kate,

thank you for your kind message, I read it this morning but had to go out to work so I could not reply straight away.

I am really sorry to hear that you are going through a similar situation with your Dad ,it is an awful thing and something that it so stressful to deal with.

My Dad is now a day patient at the local hospice and they are great people, I don't think that it will be long before he is an In-patient as he has gone downhill very quickly. He has been given a wheelchair this week as well as other aids by Macmillan to try to make him more comfortable and we are taking each day as it comes.

The hardest thing is not knowing what will happen as you want to be positive and make the most of the time that you have left together but it is so difficult to be upbeat.

We still have good conversations with Dad but he is a shadow of the man he was and it breaks our hearts to see him like this. He always had a great sense of humour and was a mickey taker like me but he has unfortuntaely lost that spark. Its like a light has gone out but it flickers on occasionally.

He gets confused and has no concept of time and seems to sleep frequently in the day and then be awake at night.

At 6pm he has his "happy hour" as he calls it when he has a few whiskies and watches telly with my Mum who has been very strong through this despite having some of her own problems. I am really proud of how she has coped and we all support her as much as possible.

We all know that it will get worse but it has really helped me speaking with others like yourself and Rodis as I have tried to keep my emotion away from my family.

It sort helps in a way knowing that we are not the only family going, through it and it makes me realise that despite everything life around you has to go on.

Thanks again for getting in touch and I hope that you cope ok with the difficult times ahead.

My thougts go out to you and your family and I hope that like us it brings you closer together.

Try to be as strong as you can and take care of yourself as well as your family.

Kind wishes

Mike

katedenyer1 40 posts since
18-Jan-2010

9. 31-Jan-2010 16:03

in response to: Mikef

Re: Dad has terminal Brain Tumours.

Hi Mike,

Thank you so much for you message, it was really great to hear a bit more about your dad and it was very kind of you to ask after mine...like your dad, my dad has always has a wicked sense of humour and that is probably one of the hardest things to accept that it has gone because he seems different now. I am about to go go to visit my dad but i wanted to write you a wee reply to let you know i am thinking of you, and your mum and dad, and i send you all strength and hope for the week ahead, it sounds like you are giving your dad a great deal of support, he will be very proud of you i am sure. kate x

Mikef 10 posts since
26-Jan-2010

10. 31-Jan-2010 19:28

in response to: katedenyer1

Re: Dad has terminal Brain Tumours.

Hi Kate,

its nice to hear from you again !

I am going to see my Dad's consultant tomorrow with Mum & Dad, I am not sure what it will achieve though.

Over the last few days I have sort of changed the way that I am personally dealing with the situation.

I have as you will have read I have been very annoyed with the lack of info and compassion that we received before Dad was discharged and this has not changed.

However I have decided that if I continue to be this way in front of Mum, Dad my Sister and Brother and also My Wife and kids I will only make what time we have left a miserable affair. I will also make life worse for my wife who has been unbelievable, keeping our household as normal as possible.

My Dad gets more and more confused and he has fell out of bed this weekend and hurt his knees so I do not intend to show my frustrations in front of them again.

It is really hard to be truthful but I feel that it is the right thing to do !

I hope that you and your family are coping as best you can.

I will update you with how we all get on.

Thanks again for caring, its does help !!

Mike

katedenyer1 40 posts since
18-Jan-2010

11. 02-Feb-2010 21:03

in response to: Mikef

Re: Dad has terminal Brain Tumours.

dear mike, how are things for you today? I'm so sorry to hear your dad fell out of bed and is confused, it is impossibly hard to watch. i think you are being incredibly brave trying to not show all your anger and frustration (which i think are completely justified given the way he has been treated) and i understand why you want to try to not do this to make your dad's time and your family's time as stress free as possible. i have found being able to come on here and tell the truth when i can't tell it to my family has helped me so much. look after yourself, love kate x

Mikef 10 posts since
26-Jan-2010

12. 05-Feb-2010 18:29

in response to: katedenyer1

Re: Dad has terminal Brain Tumours.

Hello Kate,

sorry that I have not replied and thanks for your message.

I am afraid that we have suffered further heartbreak as a family.

On Wednesday morning I had driven 70 miles to the office where I work in the Midlands.

My Dad called me at about 9am to ask if I was at home (We live in the North West) I asked if everything was OK but he said that he could not wake my Mum and had been trying all night.

I contacted my Brother who also works away but was just about to leave home and he went to Dad's straight away.

Mum had died (I won't go into details as I am still in total shock!) .

We have not been able to comprehend what has happened as we have been looking after Dad since.

I don't think that life can throw anything else at our family but I won't tempt fate.

I am not religious and would never blaspheme but if there is a god I don't understand how he works and I hope that he is looking after our Mum !

It has helped me on this forum, as the only person that I can really confide in is my wife who is my total rock but I cannot expect her to hold everything together.

The words seem to come out really easy when you type them to people that you do not know, I don't know why.

We are all totally devastated by this but I must be still in shock as I just feel numb right now.

My poor Mum was doing her best to look after Dad when we were working but the strain must have been too much.

We are still waiting for the actual cause of her death but we think that she had a major stroke or heart attack.

I am sorry to burden everyone who reads this message but it is good to hear from others.

Face to face compassion feels so awkward at the moment as we are so raw and I don't think that anyone knows what to say.

My Mums funeral is next Friday, something that my poor Dad never expected.

Wherever she is now I know that she will be waiting for him.

Sorry and thanks again.

Mike

Rodis 731 posts since
25-Jun-2008

13. 05-Feb-2010 19:21

in response to: Mikef

Re: Dad has terminal Brain Tumours.

Hi Mike,

So sorry to read your sad news, how much more can one family take? No words can help you through this but I know there is a light at the end of the tunnel - believe me - I had a devastating loss a few years ago and while I still grieve and ask why it is bearable. My thoughts are with you all. Rodis.

Roseanna 20 posts since
21-Jan-2010

14. 06-Feb-2010 13:05

in response to: Mikef

Re: Dad has terminal Brain Tumours.

Oh Mike

I am so sorry! That is horrific - truly dreadful for you all.

Concentrate on getting by one day at a time for the moment. Take all the help from anyone that offers and try to be kind to yourself without trying to look after others too much.

It sounds as though your father may not be entirely aware of what has happened. If that is the case, it may be a mercy in disguise.

Not much can help at the moment, but people I know who have lost both parents close together say that although it is obviously doubly distressing at the time, they have found it a comfort later that neither had to spend long grieving for the other.

Thinking of you X

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Dad has terminal Brain Tumours.

26-Jan-2010 12:49

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