In all honesty Waterbabe and Max I do not feel worthy at being here, I wish I could say to you both that I am better but I can't. Before Carrie's illness I would say that I was a fairly fit confident and full of life person but now I am a shadow of myself and I know that I will never ever be the same.In order for me to function I have to try and put what is happening to my daughter out of my mind how can I do that it is not possible.Like my friends on the forum we have all lost family in the past and friends but this has broken me and I am frightened for the first time for my sanity and yet my G.P.is telling me that he admires how I am dealing with what I can only call trauma and in is opinion I do not need any what I will call mental services, like others I thought I would try and get my mind on other matters and decided to cut and prune my hedges but as I am doing the job I noticed that my hands were shaking which I assume is my nerves and I kept breaking down crying.My wife Sandra is a godsend and fully understands what I am going through and understands that I be allowed to grieve in any way that relieves my pain. I feel somedays like going to hospital and asking them to keep me in but I don't want that but I do not know what the answer is because their is none.I keep thinking about when she was a baby and having her on my knee or in bath with the rubber ducks etc and with the sparklers on bonfire night doing the figire eight in the dark, taking her to have her ears pierced the list is endless you know what I mean ladies you have been their.I just can't and I am sorry for keep repeating myself except a world without Carrie in it God help me please. BillX

P.S. Max and Waterbabe I pray that what you seek you shall receive and more.X

You are definitely worthy of being here Bill - we are all the same boat in different ways - and I think here at least people understand the turmoil this disease brings to our lives. And your support and help to others is much needed too! You have said many things to me that have made great sense of things I worry about. Seeking your GPs opinion was a good thing but I totally understand when you say that no-one can really help at the moment and it seems your dear wife is a godsend - no-one except you and her can possibly understand the difficulties of losing your daughter, so keep talking and crying and supporting each other.

I too often feel like booking myself into a hospital - just to escape it all for a while and let someone else take control. I did that once and went and stayed at The PennyBraun Centre in Bristol - it was 5days of sheer bliss - do look it up on the internet. Its a cancer centre and boy do they understand!!!!!

I understand Bill cos I am going thru a similar journey but the other way around - I am distraught at the prospect of leaving my family,especialy my daughter. She is 27 and has many many traumas to deal with in her short life - she talks to only me about them and sees me as her best friend and confidente as she has no partner. She cried the other night that she didnt want me to die and it was heartwrenching - I am truly worried about how she will cope with that on top of all the other things she has had to go through. She also is having a coloscopy this week after a positive smear test and has a biopsy and treatment to face - another worry for her (and us of course). Its a neverending turmoil isnt it and will continue for some time for all of us. All we can do is go along with it all, stay strong, and know at some point life will change again and there will be more challenges ahead but maybe some sunshine too in the future for those left behind. Hard to imagine - but lets just hang on to that and hope. Thinking of you       Max x

Hi Beryl,

Yes I am ok thank you, Carries mum has given up her career to look after her full time so yes she is being looked after and is as you say comfortable. Children wise two go to private nursery and third at junior school their father who has been off work on extended leave since Christmas to look after them and has been taking them here and their so to speak, so everything possible is being done that can be done for Carrie.

Best wishes to you and family BillX

Hi Bill,

Thanks for asking after hubby.  He is doing ok but still in hospital.  At least they can really deal with his pain control there until it settles down a bit.  I'm really surprised they don't have many support services in your area to help you deal with this terrible situation.  Does Carrie have an allocated Macmillan nurse?  She should be able to arrange something for you to get support or at least give you some more information on what support is available to you.xxx

Hi Beaker,

Yes Carrie goes to hospice once a week and seeing various sorts of care also. I could ring the hospice over my grief and make an appointment to go and see them beaker but I dont know if you will or can understand what I am going to say but I cant go to the hospice because it will bring it home further to me what is happening does that sound strange.?  My doctor gave me a list of counciling services and I rang a couple of them and found that it was not helpfull in my case, I just have the feeling they do not fully understand or what to say that will eleviate the grief of what people are going through all cases are different but the technique I feel is the same.  Hope your husbands home soon and things improve for him and you take care also. BillX

Hello Bill,

I have been following your threads along the way and can only imagine how you are feeling. Watching a loved one doing battle with The Big C monster is the most terrible thing. Losing a partner is very, very hard (yep, I know that one) but the threat of losing your child - even a grown up child -  seems to hold added cruelty of fate. Your love for Carrie shines out like a beacon and it is easy to understand ,especially when in the throes of grief one's self, the depths of despair you find yourself in.

I, too rejected all offers of anti depression meds, professional support etc believing that grief is a natural phenomena and somehow I would find a way through - I can report it is just about possible. 17 weeks, 6 days and 14 hours on I am still here in the land of the living (a dubious priviledge at times) surviving - just.

Trying to get to grips with the actual agony of waiting for the axe to fall does allow - indeed forces - the grieving process to begin before there is a actually any final event. Almost as if one is grieving on account . I am guessing that one of your biggest fears is just how you feel feel "later" - there is almost a sense of panic in the anticipation - in many ways it feels just the same as you do now. The pain of losing someone starts in some form or another at the point their prognosis becomes short term. Most find this period to be bittersweet with everyone urging "Make the most of your time left " which is often as near as damn it impossible. How can one have any quality of life in those circumstances? I often wondered in awe at my Ray's strength and fortitude in getting to grips with his certain imminent exit. I have gathered every last ounce of resource to try and let me copy his bravery during these last few months. Feelings of desperation to escape the planet and the pain that is inevitable when you are the one left behind drive you to distraction.

I am , slowly, learning  that my focus must be on celebrating his life and our time together and not railing to the gods at the unfairness of it all. My daughter, who unfortunately contracted a potentially life threatening illness two years ago gave me the best advice of anyone when Ray was approaching his time. Just cuddle him, just let him know you are there - he will know and that is all he need's from you. She was right - and it gives me much comfort now to know I was there for him right to the last second. OK , I couldn't stop fate having it's wicked way - but he was not alone.

I am sure you feel that you would willingly take Carrie's pain for her and swap places, I certainly did - but I have started to realise that is exactly what I am doing now - Ray is safe and I bear the pain. What more can one ultimately wish for the ones we love?

With best regards

sueps

ps  the only way I managed for months to get any sleep was to make sure I was physically (not just mentally) exhausted. Digging the garden or running or anything that uses physical energy can be better than any drugs. (but of course a bit of medicinal help can also be most useful sometimes).

Thanks sueps,

In truth I have been following your posts also, and their is not a lot I can say in answer to your words because you have kindly said everything precisely. I like you hate taking any form of anti depressant but after not taking three types the doctor prescribed I have relented and said I would at least give these a go just so it does not seem I am not taking the help he is trying to give me because grief can cause other problems to a persons health if not monitered. Sorry to hear of your daughters illness and hope she gets well, anticipatory grief as you know is the worst form and I know that you have gone through a terrible time and I could and can tell by your posts you loved your husband deeply and I am sorry for your loss and wish their was something I could say or do to help but I know its not possible in either my case or yours sueps and I am truly sorry for that. BillX

Hi Bill,

Sorry to hear that you are really struggling.  I do understand your point about not wanting to talk to anyone as that will really bring the harsh reality of your situation into focus.  I really wish I could give you some advice that would help ease things for you a little but I'm at a loss.  My hubby and I never had any children (part of our future plans) so I can only imagine the pain of losing your child to this horrible disease.  Maybe if Carrie is able, you could try and focus your energy into planning little treats for you all to do as a family?  Going for a nice lunch, trips to interesting places that are nearby.......  I'm sorry if these are stupid suggestions but when you see someone in such pain the instinct is to try and help with anything you can no matter how useless!  Could the hospice not arrange for you to try some complementary therapies as well?  I have been going along to our local day hospice and they offer massages/relaxation techniques etc.  I know this would not change anything but I do find having a little time to myself and being relaxed by a massage really gives me the energy to keep going.  Hope you and your family have had some positives this week so far.xxx

Hi Beaker so sorry for my late reply.

Sadly Carrie is imobile, we had booked Disney Land Paris for herself and her family but Carrie became to ill to travel. I really wish we could do all the things as you suggest and more but the type of illness Carrie has we cannot sadly do those things which on top of everything else makes the hurt even moreso. I had until her illness just bought Carrie a car for herself and she had to give her licence up early on so she has lost that bit of independance also, its so sad Beaker as you know when all your future dreams are shattered by this terible disease.

BillX

Hi Bill,

I'm sorry to hear that your daughter is so immobile and that you had to cancel your holiday to Disneyland Paris.  I definately understand the dissapointment of cancelling holidays (we had two weeks in Cuba booked in 2011 and had to cancel when hubby was diagnosed and had a New Year trip to Paris cancelled this year as well).

In these circumstances I suppose all you can do as a family is give Carrie the most precious gift you can - your love.  And spend as much time with her as you can.  As we all know it is so precious and you don't really realise this till you are affected by cancer. Hope you are having a peaceful week.xxx

Thanks Beaker and best wishes to you, husband, and family.

BillX

Hi Bill - how's you and the family doing? I'm home and a little tender but doing okay so far. Speak soon and hope you are coping xxx

Hi Bill - how's you and the family doing? I'm home and a little tender but doing okay so far. Speak soon and hope you are coping xxx

Hi Max,

In your mesage to me I fully understand that their is nothing any one can say or do to put things back to how I want them Max and that is the devastation this terible illness causes to everyone who has been touched by it and most people have through family members past and present.It is all consuming emotionally and physically in mind and body to watch the most precious in your life deteriate and in my case it is my daughter Carrie who has never harmed a fly and has brought home all types of injured animals in her life to see if she could get them better and not suffer has to now suffer herself and as much as I pray and as much as I plead for God to take my life instead of Carries it is all to no avail as yet.I tell her at every oppurtunity how much I love her but Carrie has always known that I love her more than life itself and that will continue for eternity.

BillXX

P.S. Thank you Max for your kind words to me and family and without question Max I wish and pray that you yourself will beat the illness you have, and best wishes to your family.

Thank you so much and my thoughts are constantly with all of you. Carrie is a unique and brave lady and it is obvious you both have such a special bond. I cant imagine how helpless you all feel - this illness has no morals, its heartbreaking. Take care dear Bill xx

Thank you Max for your kind words, I am lost for words to say now Max and do not know which way to turn.

BillXX

Thats no problem - you just concentrate on being with your family and looking after yourself as much as you can. We are all here for you but expect nothing more from you than being in touch when you feel you need us. You are in my thoughts Bill. Max x

Thanks Max.XXX

Hi Bill

Just want to say thinking of you and carrie.

How are things? X x your friends are here

When ever you feel like talking x x

Hi,

Sorry for not replying sooner not been on site for a while, I am sorry to say I am no better emotionaly and wish  I was but as you know it is all consuming and so heartbreaking everyhour of every day for me anyway.Carrie is being looked after very well but is bedridden and has no communication as such but Carrie is still with me and pray that will last as long as their is no pain for her.I cannot explain but I am crying unconrtolaby more now even when shaving showering etc when just thinking of her which is permanent.Thouht at one point I was getting better which I was but for whatever reason I am back to square one, anyway how are you and your husband doing I hope everything is as good as can be sunshine and I do think of you also in my thoughts and will continue to be so and thanks for caring. BillXXX

Hello Bill, I am new on this site, but just now read some of your posts. I am so sorry for the pain you feel about your daughter, Carrie's illness. There are no words to console you in your sorrow. Feeling the grief and pain can be healing if you can give yourself permission to go there as hard as that is. I lost my only son and I also thought I would never recover from that, and I didn't really, its' an ongoing process that never really ends. Learning to live with the pain while trying to treasure the other loved ones we have in our life does help. Parents are not supposed to bury their children. That is not the natural order of life, but tragically, it happens. Our children, as old as they may be, will always be our children. As parents, we are supposed to keep them well and safe from harm, but unfortunately, we can't always do that because some of those situations are out of our control. I know if it was possible, you would trade places with Carrie and relieve her of her illness, but you can't, and that is so hard for a parent to accept. Love her and comfort her for as long as you have her and try to find some comfort in knowing that you did all you could for her. My heart goes out to you. I hope you find some peace from the very compassionate people who have responded to your post.

Take care of yourself'

Lorraine   

Hi bill

Been thinking of you and carrie, how are you both

Doing? You and family are always in my thoughts .

Takecare

Sadly my daughter Carrie passed away on Jan 6th 2014, thank you to my friends for your kind words to me in this very dark and heartbreaking period in my life which like so many others is ongoing and will never cease until the day I die. X