Thanks for sharing your experiences . . .

[Veema]

It's a rubbish reality for anyone to face. I hate being a widow (the first time I had to tick THAT box on a form made me cry) and I hate being a single mum. I worry about me getting poorly and there being no one to look after me the way I looked after Nige and I really worry about me dying and Phoebe having no one.

You do come to accept this new reality and there is a lot to be said for being able to please yourself....but it doesn't make up for all the other stuff you've got to get used to...its a road we just don't want to travel.

Loads of love,

Vx

[Veebee]

Mo your post says it all and I'm still trying to find my new normal. I've been going through the motions for 9 months but can't find a point in anything, yet. I'm sure we will all have happier days to come and find real enthusiasm for life in the future.

Love Vee xx

[sandraW]

Oh Mo, I have been through all those feelings, its just so shit being on your own.

I always seem to cry when I do the garden, it was very much Trevor's domain, I did the planning and choosing he did the planting and sorting, he loved it not too sure what he was doing and quite often left a nice healthy weed because he thought it was a plant. So when I'm out there doing, I feel just as you do, even still.

I went to put some washing out this morning, and heard a noise from our very small triangular pond,

on investigation it is full of toads there were 3 having what appeared to be an orgy! as they were welded together, as I looked closer the pond was full (well there was about 12 that I could see) of toads of varying colours and all quite large, if they breed the pond will be full of spawn as as I say its very small, and we now only have one gold fish to eat it. We had 3 and they seemed to devour most of the spawn in one sitting, but the other 2 sadly died, we will be awash with toads but at least they should keep the slugs and snails at bay. My daughter in law is terrified of them, the toads, and last summer they seemed to wait while she was putting the washing out and then leap past her, it was quite amusing to watch.

We love your posts, even if it is about going to Tesco and we need to hear about how Boris is doing too, wish I was nearer then I could give you that much needed hug, as I'm not it will have to be a cyber ((( hug))) instead. sending much love sandrax xx

[Dandygal76]

My lovely Mo... the reality is that this is normal. The wordsmith in all of us (and we know I was a mighty one) just seems to dull over time with our great losses. I never managed to post on my dads thread again and I never realised that would happen... in fact I thought I would carry on with my worldly wisdom (or not) on last hours, lessons learned, funerals, the afterlife (whether there is one for him and the one that exists currently for us). Someone on here once mentioned the 'other side of the divide' and you just don't get that until you are here. And it is a hundred fold worse being your long time love and partner than for me.

Anyway, now I have chirped you up (sorry!)... post or don't post... change your mind as often as you like if you want to. No has your answers or knows your path... I can recommend a soup maker though for the veg front. I always thought 'soup maker' why not just do it in a pot but they are bloody brilliant and really easy. Soup is also really easy to eat just like an egg (and it freezes). Trust me.. my mother is souped out.

Much love. x

[Justamo]

I scattered Peter's ashes today on the ski slopes where he spent some of the best days of his life.

It was a glorious day, bright and sunny, and you could - quite literally - see for miles. And now, when I 'lift up my eyes to the hills', I won't just see mountains - I'll see my Proud Highlander's final resting place.

Love, Mo

[patrigib]

"Courage" Mo!!!! Great place for Peter to rest! You're still caring for him, don't you? Hugs

[sandraW]

Glad it was such a wonderful day Mo, and I'm glad the Proud Highlander has such a special resting place love sandrax xx

[Justamo]

12 months ago today I was sitting beside my husband’s bed watching the final stages of this evil illness take an increasingly firm and final grip on his life.

The details are as real to me now as they were then: I didn’t know whether I wanted to keep him alive at all cost or if I wanted to him slip peacefully away. The decision wasn’t mine, thank God, and in due course nature took its inevitable course in the compassionate care of our Hospice.

The anniversary of Peter’s death is 10th January, but in my mind he really ‘died’ on 5th January, because that’s when the Hospice put him under heavy sedation, and to all intents and purposes Peter left me as soon as the drugs took effect. His poor tired body stayed working for as long as his heart kept pumping, but Peter wasn’t really ‘there’. I think he was in a better place.

So this Christmas has been yet another ‘first’. I’ve done the first wedding anniversary, and the first birthdays, and the anniversary of the date that we first met (2nd May 1972 – more important than any other date), the anniversary of our son’s death. And now the first Christmas. I refused lots of festive invitations, I just wanted to be quiet and alone, and reflect on this turbulent year.

I sold both the cars and bought one new one; sold the house and bought a smaller one; (leaving my beloved garden was hard), taken up and dropped several new hobbies (“You must try something NEW dear” Why, exactly ?), learned to reject well-meant help and suggestions, and tackled a new garden. I shed half my books, (like giving away old friends) and donated most of the house contents to different charity shops.

The garden I inherited had been planted, fairly randomly, some 40 years ago and then abandoned to nature. So I hired three strong men and a JCB to lay it to waste, which they did within two days. I had thought I was getting the Chippendales, but I seemed to have got the barely house-trained Dingles; no matter. The job was completed by laying a heavy membrane and covering the whole damn lot with gravel. I drew up a carefully considered plan of shrubs, they have all been planted through the gravel, and so far so good. Think Beth Chatto. Or maybe not.

I hit my personal wall in July, when I had nobody to argue with in shops about the colour of the curtains and carpets. I actually didn’t want to continue with anything. I got through it with my beloved cat (now my next-of-kin), pills, and friends and support of various kinds. A special friend flew up from London specifically so that I could argue with her in the curtain shop. Thanks Lulu.

I have stuck with the art classes, and sewing, I’ve written a book, I have rediscovered my love of photography, my (almost) daily swims, and things are on a more even keel. Boris the Cat has settled in well, he continues to be a joy to me and is almost the only thing I really love.

So the first year is nearly over. It has been tough, and I sometimes think that if I didn’t have my lovely cat to look after I could have just drifted away completely. There are days when I wish I had. But I catch up with the Forum from time to time and am glad that it still offers succour and help and love to people affected by this evil disease.

I’m sorry we need it at all, but so thankful that it’s here.

Take care, love Mo

[Marmalade]

Dearest Mo,

I'm ridiculously happy to see this post. These firsts are hell and the seconds not much better but we are all still here and very slowly, adjusting to life alone by whatever means works for us. The things you have done are not small or insignificant they are massive and involve so many complex, sometimes completely draining, feelings and emotions. You've achieved so much, physically and mentally and I hope that Boris, the art, the writing and the new garden will continue to sustain you.

Much love, and good wishes for 2019

Marmalade xxx

[Sandiemac]

Hi Mo

I too am happy to hear how you are. I have often thought about you during this past year. I think we have all been fortunate having the support of friends and relations and it has certainly helped me immensely (it's been 15 months for me) but unless someone has been through bereavement in these circumstances themselves they cannot really understand.

It's a cliché, but it really does help to keep busy. I have started doing voluntary work and have also discovered cruising. My next hurdle is to get my tax return in before the end of the month!

Keep on keeping on. Take life in little bites rather than thinking too far ahead.

Love, Sandie xx

[Justamo]

Well, it’s been quite a year. On Christmas Day last year I re-read my thread on the forum and felt that I had made progress over 12 months. This year I couldn’t be bothered to read it again, but a few random thoughts have come to mind.

I have discovered that it’s not necessarily the ‘firsts’ – be they birthday, Christmas, various anniversaries – which really hurt; it’s the unexpected and apparently random things which hit you hard. Peter and I lived fairly separate lives, but if we went to London he stayed glued by my side in case he got lost. This year I attended a friend’s OU Graduation at the Barbican and then it occurred to me that the last time I was at the Barbican it was with Peter, to see a concert. That hurt, but had to be covered up because it was my friend’s celebration day.

Walking down Bond Street hurt because I went past Applebaum’s where we used to have coffee. St Pauls, Holland Park, High Street Ken - every perishing place I went to caused a problem, so I started going to different places like the Tate (he refused to go there) and other spots remembered from my dim and distant career days. In short, I couldn’t wait to get back home to my cat and my garden.

Over the past year I have acquired a Gentleman Friend. We go to the opera, musicals, films, a Queen tribute night in a trendy club (thought I’d need to cut holes in my jeans and get some tattoos, but nobody paid any attention to me), and we have lots of lovely Sundays out in our magnificent country. I didn’t used to be able to walk more than 20 yards, but have discovered that I can walk on sand without too much difficulty so that’s a revelation. Our beaches here are stunning. And he is exactly that: a Gentleman, (he makes me feel like Hyacinth Bucket because he won't let me open doors), and a very good Friend. Although last week he got all alpha-male because I fell off a ladder while putting up decorations. He confiscated the ladder and took it to the Council dump and made me buy a step-stool of the type usually seen in adverts for disability equipment and gadgets to cut your toe-nails with. He is spending Christmas with his sister who lives 100 miles away and although he asked me to join them (I think it was out of politeness really), we were both quite contented to do our own thing. No ties.

This is a hard time of year and I prefer to be alone. I keep remembering those last couple of weeks with Peter. In truth, I don’t really want to forget them: they were part of our story and can’t – and shouldn’t – be erased from memory.

Most of the minutiae of this year has been wiped out by Raymond, aged 57, (Peter’s son) being found dead last week, with every indication that he had been dead for some time. I last spoke to him on 8th November, but I have been texting ever since to find out what he wanted for Christmas. Raymond would swoop down, spend several days with you, and then vanish off the face of the earth for 6 months, so it was hard to keep tabs on him and long silences were normal. Last week I became quite concerned about the lack of response so went to his house (50 miles away) and spoke to some of his neighbours, all of whom gave me a different opinion as to his whereabouts. Since most of them were either drunk or smoking joints this didn’t fill me with confidence and the following day the Police broke in and discovered his body.

His mother and her current husband (the third or fourth – can’t remember) are taking responsibility for matters but I am grieving for the bright and clever little boy of whom we had custody when he was 8 until he was 21 and then did his own thing. Raymond has lived a very unsuitable lifestyle with some very odd people; didn’t visit his dad when he was ill, refused to attend the church service for his funeral but did offer to move to my town to, quote, “Look after me”. Unquote. I think not.

So last Friday saw me going to the local paper office to insert an In Memorium notice for Peter’s 2nd Anniversary on 10th January and a death notice for his son, who died God only knows when. I daresay the post mortem will give an estimate of the date of death, but the date is not important to me. I’m just very angry at the waste of a life.

And thank God Peter wasn’t here to see the finale.

Hope all of you are doing just as well as you can. 2020 will be my fundraising year for PC Research.

Take care,

Love Mo

[sandraW]

Hi Mo,

lovely to hear how you are doing, sad to hear of Peter's son and the fact that you had to find him so to speak. I pop on here every now and then for a catch up, but its getting less and less now. I am glad you are enjoying life with your new gentleman friend, wishing you best wishes for the new year take care, sandrax

[sandraW]

Sorry forgot, how is your beloved Boris, I do hope he is okay, and keeping you on your toes x

[Justamo]

Thank you Sandra; Boris is thriving but he is overweight, and since I moved to a bungalow we can't play games which involve galloping up and down the stairs. So we spend 20 minutes or so once or twice a day playing with his laser pointer (which I call Dot Com) and he chases the dot all over the place which must be the equivalent of an vigorous workout. Now I'm calorie counting for both of us.

I don't look at the forum very much these days; at first I had to wean myself off it because my big release from stress is writing. But it's good to remind yourself occasionally just what things were like in the bad days. I find that I now remember all the good parts of our marriage more readily than the end times, so I suppose that's progress of a sort.

Peter was my soulmate and I think you only get one of those in a lifetime so I am thankful for the 46 years that we had together. It's very sad that my stepson has died, but I think I always knew that he would never make old bones. Dependence on various substances and a chaotic lifestyle are not conducive to long life and happiness.

You take care my love.

Mo

[PCUK Nurse Jeni]

Hello Mo!

How lovely to hear from you with your wonderfully written forum post, as always.

I am so sorry to hear of Raymond's death and the nature in which this occurred - as you say, a waste of a life is the saddest part.

Its good to hear that you have a gentleman friend - and that you are going to various places together, and enjoying the countryside. You are right, its a beautiful place, and great to discover new parts and "take it all in", so to speak.

Wishing you a prosperous New year Mo.

Kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Corinne]

I just wanted to thank Justamo and all the other contributors on this long and valuable post which I have read from the beginning to the end over the Christmas period. It has been so helpful to me to hear everyone's experiences which I can relate to, and give me some pointers as to how lives carry on, although at the moment I am still struggling. It is only three and a half months since my husband died, I had wanted to cancel Christmas but I have a son to consider and his life must go on. Anyway a big thank you to you all, and what a wonderful organisation PCUK is.

[Justamo]

Wow, Corinne, you deserve a medal for ploughing through all that.

I simply don't know how I would have been able to cope with any of it without the support of the forum family. As far as dealing with grief goes I'm still struggling. I spent Christmas day alone, eating fish & chips with the cat. Peter loved our Christmas Days so it's a poignant time for me, and of course it's even harder for people with families who don't have the luxury of ignoring the whole thing the way I do.

You'll get through it. Stay on the forum until you feel ready to let go. Your observations and comments will help others and we all owe a debt to PCUK for providing this platform.

As we say in this part of the world, A Guid New Year to you.

[Justamo]

I thought that this would have been my third solitary Christmas, but Covid scuttled my Gentleman Friend's festive plans for Christmas with his sister, so he fell back on Plan B which was lunch and the Queen's Speech (Gawd bless yer Marm) with me and my cat. It made quite a nice change to cook the turkey and all the twiddly bits, and GF asked for seconds and cleared his plate, so it must have been ok. We missed Her Madge because a third glass of wine meant that I couldn't find the remote control for the TV. It turned up in the fridge this morning. The remote, not the TV.

Covid must have had a catastrophic effect on those suffering from PC and their loved ones. Thank God you can't catch Covid online; the forum was the only thing that got me through the16 or 17 months of Peter's ordeal. There's always someone with the right words of comfort or a solution for a pressing problem, and our marvellous nurses are a constant support.

This past year should have been my fundraising year for PCUK. I knitted and sewed my way through January and February, anticipating a sumptuous strawberry tea and record-breaking sale in June, but of course life went on hold and I have storage boxes crammed with goodies for a Christmas sale in 2021. I hope.

It is the anniversary of Peter's death on 10 January, so I've submitted an In Memorium notice to the local paper for the appropriate date. Three names this year: Peter and his two sons. My stepson Raymond who took his own life last year, and our baby Padraig, who died at birth in 1974.

I really miss swimming (thanks, Covid), but we are blessed with magnificent and mostly deserted beaches in this part of the world. While I can't cope with hard surfaces I can manage 5K or so on sand which cushions my steps and makes walking pleasurable again. I sometimes borrow a friend's dog, (don't tell my cat) and Jerry and I make doddery and slightly geriatric progress on the beach to our enormous enjoyment. Otherwise I keep moderately busy with gardening, painting, sewing and photography. Keeping on keeping on, as they say.

I hope everybody is as well as they can be. Thankyou forum members, past and current, for love and support and I offer you my kind wishes for 2021.

[Justamo]

Well, things happen in threes, as they say.  I got cervical cancer in 2003 and went into remission after a year of horrendous treatment which I would have abandoned after 6 months if Peter hadn't persuaded me to continue. Then Peter got PC, which was a nightmare,  and would have been even harder without forum support and the help of our lovely nurses. And now I've got cancer again, only lung cancer this time. It's stage T4, N2;  immunotherapy testing did not show an encouraging result, so it's really untreatable, and certainly not curable.

 

The worst bit is crippling headaches which make me vomit, so they've done a brain scan. With some effort they found my brain, but there was no spread. Yet. Last week they did a bone scan, in case it's working its way up my spine - no result yet. Pain is addressed by MST, with Oromorph as a back up.

 

Surgery is impossible because it's so close to my aorta and, obviously, my heart. Radiotherapy is out for the same reason. Chemo is with the platinum drugs, and I've still got the side effects from Cisplatin administered nearly 20 years ago. Immunotherapy not likely to be successful, and in any case is not a cure.

 

The thing about dying is the people you leave behind,  and as I have no family or dependents I am not prepared to try to prolong my life. My consultant fully understands, and I rather get the feeling she is on my side. Peter is in a better place, my baby Patrick is with him, and although I have the loveliest friends their lives will not be devastated by my absence.

 

I still haven't entirely rejected treatment,  and there are still a couple of MRIs to be reported as well as the bone scan. I am assured that I will get lots of support, but the key for me is that there is nobody to get better for, if you know what I mean. 

 

There is, of course, my beloved Boris  -my cat - and my best plan is to find a foster home which he can gradually get used to with playdates and sleepovers. But that subject hurts too much to make rational decisions yet.

 

Yes, I know this forum is for PC, not lungs, but is anybody facing my set of circumstances too ? I'm aware that the mods may not allow this post to be posted, but we'll see . . . 

[Lornacath]

Hi Mo, I have been reading the ups and downs of your husband’s journey towards some treatment. My mum has been going through something similar, she was diagnosed with Pancreatic cancer back in July and told a Whipple operation was her only hope of a cure. We spent the next 3 months going back and forwards to a hospital a hundred miles from home and was finally told in October she was not fit enough for surgery. She was upset but understood her heart issues, age (77), and general fitness were not in her favour. Myself and other siblings were a mixture of relief that she was not going to be put through the ordeal of this huge operation and very emotional about what lays ahead.

We we’re advised to look into Chemo options but an endoscopic procedure was unsuccessful in getting any cells for a biopsy. The oncologist has said he is unable to treat her without this. The surgeon has said it it is too difficult to get, they could repeat endoscopy and still not get cells.

She is currently doing quite well with the help of the Stent that was fitted back in July to help her jaundice and Creon to help her digest food. I think we are being steered away from any intervention of Chemo and guided to a path of quality of time with our mum over quantity. She is perplexed that they are unable to tell her what cancer she has or what stage she is at. Sometimes even questioning her cancer diagnosis that how they can be sure. We are still waiting to find out if they will rescan mum to see if/how much it has grown since July, apparently they only normally rescan when patients are receiving treatment. 
I took mum out yesterday, she was able to walk around a few shops for about an hour and general seems quite perky. She does have days when her stomach hurts after eating and her bowels are not always comfortable either but the dietitian has proscribed some new Hyfibre sachets that have been helping a lot. 
I will be speaking to our Cancer nurse tomorrow, wanted to give them a couple days after the holidays to get back up to speed. Not confident that there is any options now left on the table, but I really hope my mum gets some clarity on the stage her cancer is at if at all possible. My dad says he feels depressed thinking she only has a couple of months when it may be a couple of years. It’s that massive dilemma is it better to know or not.

I hope me telling you about my mums story has not worried you anymore than you already are about your husband. You both seem full of life and probably so much fun under normal circumstances, this awful disease hanging over us robs us long before it takes you. I found your posts gave me some comfort, that around this awful time you are still trying to keep motivated and upbeat. We are ourselves talking about a holiday in the Scottish highlands when the weather improves, fingers crossed.

Sending you and your husband lots of love xxx

[Corinne]

Oh Mo I was so very sorry to read your latest post.  I felt like I had got to know you a little when reading this entire post, all 31 pages of it when I was in a very dark place indeed 3 months after my husband died of pancreatic cancer in 2019.  Life is just so cruel and I can understand all that you are saying.  You lost your soulmate of 46 years, as did I, and nothing but nothing will ever heal that, grief follows you around and that's that.  Whichever route you choose with treatment/no treatment then I wish you all the best, think of yourself only and am sure you will get a lot of support from the NHS, from personal experience (breast cancer scare) and that of a friend they are performing miracles on cancer treatment despite Covid and all the other issues they face.  I wish I could give you a big hug xx