My husband died in my arms on the 2nd May (2009) - what happens now?

Hi Pam, as always I wish I was able to be there and give you a hug and sit and share a cup of tea.  I'm glad you have managed to write your report I think it will help in a small way, I wrote to the consultant who referred Steve and originally diagnosed his cancer and also to his oncologist.  I knew that whatever they had done the outcome wouldn't have been different but I felt that both of them needed to know where they could have improved what they had done, not just for my Steve but for future patients as well, after all if we don't have our say it just gets overlooked.  The consultant replied by return of post and it was a lovely, handwritten and personal letter, he agreed that the outcome wouldn't have been any different (and we had private heatlh insurance so can't blame the NHS there) and he took on board my comments regarding certain things that he had been responsible for.  The oncologist I never heard from, there was never any follow up before or after my letter and I'm glad I wrote to him, I feel better that I had my say as Steve would never have let me whilst he was here and I know for a fact that things could have been better for him if this man had not just done his job but actually taken care of my man properly - and that is all in the private sector, maybe for us the NHS would have been better, except for the fact Steve had a private room throughout his treatment which made a lot of difference to him, he was a very private man.  So I hope that you will find comfort in having written and sending your report, I hope you also get a reply which will help ease some of the pain inside, whatever happens from here please remember you did do EVERYTHING you could, above everything you loved Martin and he knew that from beginning to the very end and beyond, you have nothing to feel guilty for (although we all do and we all wish we could change things)

These dark evenings and mornings do make things harder and scarier, but just gather Martin close, ask the angels to protect you (Archangel Michael is a good one for that) and as you say spring will follow in due course.  Lots of love to you - and all the other penguins of course - take care xxxxxxx

This evening i wish that I could gather you all in my arms and give you all a big ((hug)).....but as we're spread all around the country that's not possible so will offer each of you a comforting cyber ((hug)) instead.

Your talk of writing reports and letters brings to mind my own way of dealing with all that happened to us and how we fought for Alan's survival.........Three years ago - when Alan was in so much pain and undergoing surgery I kept a diary of all that was happening - not sure if I understood everything that was done - but all my anxiety and pain was recorded - often in big bold type and underlined for the worst of it.  I was writing it one day when Alan's Community Mac-nurse called.  She expressed an interest and in due course she read it......then suggested I pass it on to the hospital Mac-nurse.  Which I did......and apparently it has been read by the staff - and doctors - that cared for Alan.  I have been told that it is not often they get to hear the patient/carer's side of things and that they have learned some lessons from reading it!!!  Not sure what - or whether any of the 'lessons' have actually been put into practice....but if recording my experiences has helped another patient (or carer) have better care or better explanations then I feel justified in what I did.  But I do find writing down my worries very therapeutic and at that time it was the only way I knew to keep myself from going under!!!! 

Dot xxxxx

Hello penguins,

Pam, I think thats great that you wrote a report.  Sometimes just writing gets things off our chest and you never know it may help.  Even writing on here when I have a moan helps me a great deal.  I think thats fantastic that your writings were passed to the doctors, etc Dot.  There is too much that is overlooked by NHS & private when dealing with cancer patients as we had a mixture of both.  The only people that cared for my husband, that were faultless were the hospice.  They were like angels sent to look after us when I had my back against a wall.  I was desperate and getting nowhere and Wully had been admitted to hospital and by chance met a consultant from the hospice and it went from there and there care and help for the whole family was tremendous.  I have just had an invite to their rememberance service in December which I will go to although not particularly looking forward to it.  It set me back last year but I am hoping I am stronger this year.  I think this time of year isn't helping us Pam.  I keep thinking back to my emotions this time last year and I am really dreading Christmas and New Year and fed up already of people asking me what I am doing and am I looking forward to it. 

Ailsa, glad you are feeling better and had a good, relaxing weekend where you were able to recharge and take stock.

Thank you penguins for the flowers.  They tried to deliver on Friday but I have only been popping into the house for a short while each day and hadn't noticed the card and my neighbour had them.  I have dehumidifiers and fans still going in the house and the noise is deafening so I avoid it at the moment.  I have the insurance assessor coming on Wednesday so hopefully get back into the house from then as I can start throwing out stuff and clearing up once they have been (I'm not allowed to touch anything until then).  I am still pretty low but keep trying to get my fight back but everwhere I turn I hit a brick wall and its getting me down.  I suffered from depression before and can feel it lurking in the background and don't want to go down that road again and have to go on medication.  Nothing is happening with my new house although she is supposed to be out by Friday coming (I won't hold my breath) plus I had seen another house which would have been perfect but I discovered on Friday it has the same problem as the house I am waiting for.  What is wrong with people these days!  And there is still nothing else.  I am seriously considering moving back to Falkirk but it is so far from friends and family that I don't think it would be the best move in the long run but I am fast running out of options.  I am really missing the kids.  Even though I am with them loads I just want the 3 of us sleeping under the same roof.  I feel like I am having visitation rights at the moment lol.  Anyway rant over.  This week has to see some improvements so fingers (and flippers) crossed. 

Take care penguins and thinking of you all.

Gayle xxx

I cannot comment on other people's experiences during their loved one's illnesses. I can only comment on mine and to be truthful I feel that we had the best possible care. The consultant, specialist nurses and ward staff were brilliant.  Ray was a force to be reconed with and he seemed to command respect and truthfulness every step of the way. The macmillan services were second to none and the hospice (apart from the hushed tones) was amazing. Tho only issues I had were witht the OT and the complimentary therapists who I felt did not listen (but that is an entirely different issue). It is very difficult to deal with what has happened and I hope that those who are struggling soon find some peace.

Love and angel hugs to you all. x x x Patricia x x x

Hi guys

I have just read back a few pages because I realise that there is no chance of me catching up with everyone and what has been happening.  And also as I have a LAPTOP ..... and wireless braodband, so am now in my sitting room doing this!!!   You guys could have let me know that this 'fingery pad mouse' thing is just NOT easy to use.  I have just been moving the tv remote control around on the sofa and wondering why the cursor wasn't moving!!  Oh Judes!

Gayle hun, you know I am thinking of you so much, I genuinely have no idea how you are managing to keep going - but there is no doubt in my mind that keep going you will, and we will give the biggest cheer ever heard when we know that you guys are all reunited under one roof. 

Pammie, you are an amazing person, I can tell.  Well done for writing down your thoughts and disappointment in Martin's care.  I know that I had misgivings about the last few days and how things were handled, and as others have said, it may not have made a definitive difference to the outcome, but letting it out can help a little, it is if you are saying "no, it wasn't good enough and you need to know that I am aware of that".  Keep going hun, and keep posting and telling of the things that upset and do that horrible "take your breath away" thing, huge hugs coming your way from Aberdeen.

Lynne and Patricia, look after yourselves while you are looking after the dads - please.

Rosemary ...... tap, tap, tap .... wake up and put the Bailiey's down!  I am here, I am back online!!  Miss you hun! Yes, my wonderful hounds are FINALLY back home with me.  And right now are lying in front of the wood burning stove.  They were SO happy to see me and skipping around like puppies, I brought them into the house and initially they were charging about and saying hello to mum adn dad and the two workmen that had 'popped in for coffee' ..... I think I have some new friends for life here ...... and then suddenly it was as if they were just completely overwhelmed by it all and retreated to their beds for the rest of the day.  So Saturday I made sure that it was just me and them and we had a quiet day in the house and I think they are beginning to 'get it'.  Joey's one brain cell has accepted this is his new home, in fact I don't think there is enough room in his head for memories of the last house! 

Ailsa, Fiona, Teri, Helen, Sue, Dot, Lynda, Becky,Dave (where are you Dave - hope the boys are fine?) and everyone else ... cos you just know I have forgotten at least one or two people, but I am so happy to be back with you I just wanted to say hi to everyone. 

Am going to copy before I try and post this ..... this 'no wires' thing is good isn't it!!!

I will tell you about mum and dad's stay next time .... oh my!  i didn't realise that I am, in fact, still only seven years old!!

Loads and loads and loads of love, Judes xxxxxxx

Wahay... welcomne back Judes x x  Big hugs to you and 'the hounds'.

Gayle, keep smiling hun. Things will eventually work out for you and the boys I am sure x x

Love and angel hugs x x x Patricia x x x

hi guys

its been a few days since i have posted but i have been reading all of your entries daily.

Gayle my heart goes out to you hun, its about time those insurance guys got round there, so you can at least feel like you are doing something, its just horrible having to sit on your hands whilst your separated from you boys. good luck with the clearup later in the week.

Pam i can't beleive how strong you are, i am still a badly organised mush alot of the time, so keep going you are proving it can be done, like the rest of the penguins.

I thought i was making some progress but its that rollercoaster thing isn't it, just when you feel you are climbing a little or managing to at least stay on a level along comes a drop without notice. It been a tearful weekend and i seem to have acheived nothing, not sure there is a specific reason, saturdays always mark another week but does not always affect me that way. oh well we'll see what today brings.

I saw the occupational health at work on friday who thinks that it will be at least a couple of months before i should conside going back to work. I am glad in some ways as i don't think my head is in the right place for my job, but it is a double edged sword as i have no daily structure which i think is giving me too much time to do nothing. But when i asked before they didn't think there was a paperwork type role i could do so need to wait till i am stronger before i return to work. I think no matter how long i wait its going to be really hard.

i need to find something to do with myself today so far no plans, which makes it bad, i will often tend not to do anything if nothing is planned. i have finally booked a haircut for tomorrow, haven't had it done since april, been avoiding them because of the enevitable small talk. But have decided the hair is too long, i can't be bothered with the care it takes at this length, i have to do it sometime and bite the bullet. I am sure it is worse because i have always been a little anxious about hairdressers. childhood story, i won't bore you with.

I was wanting to ask about the facebook thing, many people on this site say they talk to each other on facebook, is it through a group you join or do you just find each other individually as friends? no one would find me, myface book is still under my maiden name, can't figure out how to change my name. Have any of you tried to change you status from married to widowed? I was going to but when I tried it wanted to remove my connection to Mark, so i have left it as married thankyou very much, feels like wiping him out! insensitive facebook .

think i'll text a couple of friends and see what they are doing this week, maybe make some plans to keep busy.

hugs to all of you

becky

Dear becky

if you go on to FB, you can request one of us as a friend and we'll point the way to the others. I'll try to pm you my fb page details, then if you wish you can request me as a friend

Sue  xx

Hi Rosemary, thank you so much for your kind words.  It really helped me. 

I know that there are lots of people who where treated with care and dignity throughout their treatment in hosptial.  But there are so many that did not get this care and that is unforgivable.  I think if I had not had the stress of their lack of care and dishonesty I might not be quite so distraught now.  I spent so much energy fighting for Martin over the last few months I don't have much left to fight for myself now Martin is not here.

But when there are times, of which there are many, that  you feel so alone and then you sign on here and there are so many lovely penguins at your fingertips giving so much love and many many hugs.

And thank you, all you other penguins.  Even when some of you are going through such traumas, you still find time to give me comfort and help give me peace.

I know this is not a good time for any one of you with the winter coming and the time is fast approaching that we all loved and made plans for and now it is a big black hole of dread on the horizon. That time called Christmas.  I have told my daughter that I am not even going to think any more about it until 1st December and then see how strong I am then.

So many many ((((((((((((((((((((((BIG HUGS)))))))))))))))))))))))))))) to every one of you

Pam xx

Heeeeeellllloooooooo!!!!!!!!!!!!!

I am back on line after nearly 4 weeks!! Missed you all sooo much xxx

Had a quick read of posts, welcome Pam, so sorry you need to be here but hope we can all help xx

Gayle not read all properly so not sure exactly what happened but big hugs to you. What a mess xxx

Nat has been away for 2 weeks and Liam is now settled into his stay with my brother so the house has been really quiet, managed well but tonight I have come back from a lovely weekend in Edinburgh with G and feel very sorry for myself!!! Back down to earth with a bump, Edinburgh was lovely, the weather was great and G and I got on so well.. Oh well, look forward to Nat home on Wednesday xx

Work is still great, really throwing myself into it.

Bug higs to everyone!!! Just keep swimming! Not always easy I know and have to keep reminding myself too but we ll do it xxx

Helen xxx