Writing this to help me cope

[Corinne]

I lost my husband to this very aggressive cancer seven weeks ago so I am that raw emotion stage where tear inducing memories are everywhere and I am reminded of him all day long leading to a very deep sadness. We had been together 45 years, married for 42, and he died just too young at 66 years old, only 4 weeks after diagnosis.

He had been suffering from back pain for some months but as he had broken some bones in his foot and had to wear a cast, his consultant thought that the two were related and once the cast came off the pain would subside. Unfortunately two days after the cast was removed my husband became seriously ill, unable to sleep or eat, his blood tests showed high inflammatory markers and he was admitted to A & E with possible sepsis. They thought initially he may have had gallstones, if only. He had no jaundice at all, a bit of weight loss but he had been trying to lose weight so that didn't raise any alarm bells. So his only symptom was lower back pain.

He was diagnosed with Stage 4 pancreatic cancer with liver and spine mets on 15th August and died at home on 17th September, our 42nd wedding anniversary. He was so dignified and calm, I have no idea how he coped and what was going on in his head, but myself and our children were in such a traumatic place and still are. We were supported with carers and nurses from our local hospice who were wonderful and enabled him to remain at home. Being a widow at 64 seems a very lonely place to be and I realise that I now need some sort of counselling to try and deal with all the things whirling around in my head. I am still reliving his last 6 weeks, analysing what happened, could we have done any more.

Anyway writing this is a start for me, it is strangely therapeutic, and as I am bursting into tears when speaking to family, friends and neighbours, here I can talk about it without feeling my words and tears are going to make people feel awkward. Everyone on this forum is affected in some way by this dreadful cancer and I just hope that medical science can improve on the current prognosis for pancreatic cancer in my lifetime. Based on his experience if you or your family and friends every suffer from unexplained lower back pain for over a month then insist on having a CT scan or MRI scan and don't let the situation go on for any longer. Reading online as I have done day and night about pancreatic cancer, back pain is the one symptom that seems to affect most sufferers. If this helps one person then it will have been worth writing this.

[Changeofplan]

My dearest Corinne

I am so sorry for your loss. Your words are not ‘lost’ in the space of the internet, they are resounding with me especially today.

My husbands funeral is today at 3.30, and I feel like I am in a nightmare...and have done for 3 months. 3 months from diagnosis to his death, and I would not wish those 3 months on my worst enemy!

We were together for 48 years in September...can you believe our anniversary is the same day as yours! My husband was in hospital on our anniversary...in fact much of his last 3 months were spent there...

I haven’t time today to write all I would like, but I wanted you to know I was listening...to know that today I will be mourning my husband, but also all those like our husbands who have been taken too soon by this terrible disease, and holding in my heart all those who are left to mourn them.

I send you compassion, understanding, and wish both of us strength at this devastating time.

[PCUK Nurse Jeni]

Dear Corinne and Changeofplan,

Thank you for your courage to post on the forums, and tell your own stories of your husbands. It is difficult to imagine how you are both coping with the recent events, and the speed at which they took place. It is heartbreaking to read what you all went through, not least your husbands.

I am so sorry for your loss, and on behalf of all the nurses and wider charity members here at Pancreatic Cancer UK, I would like to send sincere condolences at this sad and difficult time.

Our thoughts go out to you.

I wonder if you are able to access any local support, or perhaps in time you might feel able to do so? Please do let us know if we can help in any way practically, in terms of signposting to services which might be available in your area.

Of course, you may still access our services if you feel they are of assistance to you at this time - we know that the impact of pancreatic cancer goes on after a loved one has passed away.

With our kindest regards,

On behalf of the nurses,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Corinne]

Change of plan - I am so sorry to hear about your husband and realise you will now be experiencing the horrible post funeral time, feeling shell shocked and wondering why this dreadful cancer struck and turned your world upside down. I went through the whole funeral on auto pilot, collapsing in a heap afterwards with my children. I had a slight panic attack when my son drove us up to the woodland burial cemetery where the service was held and I saw so many people gathered looking at us as we approached. I just wanted to run away. Friends and family were also in deep shock at the speed of my husbands death.

There is one piece of advice I was given which did help which was look after yourself, be kind to yourself, and do exactly what you want to do - whether that is seeking solitude at home just reflecting, crying all day long if that is what you need to do, and keep close the people you want to keep close. Accept only the invitations to coffee and so on that you want to accept.

I was lucky that my children came to help me in my hour of need, and their fathers hour of need, my daughter stayed with me for two and a half months to be with her father before he died and to look after me afterwards.

My husband died 8 weeks ago tomorrow, I will be watching the clock when the time of his death approaches. Unfortunately that is still happening although the raw emotions are not quite as bad as they were in the two weeks following his death when I became hysterical with grief at times.

The only solace for me was that the cancer did not have time to ravage him in any way, and when he died he still looked like him.

Anyway that is enough from me, you have enough to think about at this moment and I hope you are finding some strength from somewhere to get you through the weeks and months to come. Do keep in touch, we may be able to help each other. Over the weekend I read all the posts on this Loss forum and it did make me realise that I must count my blessings in having 45 years with such a lovely man, there are young people with families who get pancreatic cancer and don’t make it to 66 like my husband did.

[Corinne]

Jeni, thank you for your kind words, we have the most wonderful hospice here, I wish I could say their name but I know it’s not allowed. They offer bereavement counselling which I will ask for in the New Year. At the moment home is my refuge with occasional visits to family and very close friends only. Family and friends are monitoring me closely so I feel people are looking out for me which is nice. It’s early days and although a cliche, I am taking one day at a time.

[PCUK Nurse Jeni]

Hi Corinne,

That is really good to hear that you feel supported and that you might have the option of bereavement counselling at at later stage.

It is a good strategy to handle one day at a time, because no two days turn out to be the same during grief.

You know where we are should you need us.

Kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Winnieweg]

Hello, I just wanted you to know, I hear you x

I lost my mum on September 14th, like your husband, she was four weeks from diagnosis (August 17th). The shock waves are still reverberating through our family and will do for sometime yet. The speed with which this disease takes lives is unbelievable, we were not prepared at all. I miss her so much, I feel that deep deep sadness and it just won't give me any peace. I talk to her constantly, it helps me cope. I can offer no advice other than be kind to yourself, if you want to do it and it feels right, do it.

Take care and don't rush, grief is a journey and we all travel it at our own pace, stopping along the way now and again. Xx

[Corinne]

Thank you Winnieweg, I don’t know what to say but hope things are easing slightly for you, I am trying hard to concentrate on the many good memories now and not dwelling on the horrible ones. Am trying not to keep endlessly analysing my husbands last 6 weeks, although first thing in the morning it all keeps flooding back. I want the children to move on with their lives now, and not for me to be constantly sad. So I try to be upbeat with them and keep my sadness for my quiet moments when I am alone. Anyway am sending you my very best wishes in this truly terrible time.

[applinappers1]

Hello i just wanted you to know your not the only one who needs to write to cope but i just dont know what to write, My Mum was diagnosed in July depsite being told in May there was no cancer, and passed on November 23rd, but i am so confused i dont really know why she died the cancer never changed from day 1 but she had a clot in her liver which caused ascities, but they drained that so i am struggling to understand why she actually passed and dont know who to talk to. I find it odd that i am ok for a few days and then like tonight break into uncontollable sobbing, i am so lonely and miss her so much and get the feleling people are bored off listening so now i dont bother talking about it and wait till i am on my own to cry

does it ever get any better?

[PCUK Nurse Nicola]

Hi Applinappers1,

Its Nicci here,one of the nurses from the support line.

I am so sorry to hear that you lost your Mum, and so quickly after she was diagnosed. its devastating and as well as greiving I'm sure you will still be in shock, as things happened so quickly. I do hope you have some support around you.

Did you contact the hospital where your Mum was treated to ask about what happened? They should be able to go through the notes and talk this through with you, and this may help, its so awful to be going through this with so many unanswered questions.

Please know we are here for you if you do want to talk applinappers1. I am sure you will also receive some replies soon from our forum members which I hope will bring you comfort.

You are in our thoughts.

Nicci

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Corinne]

Applinappers it is only 6 weeks since your Mum died and that is no time at all, plus you have had all the hoopla of Christmas and New Year to get through. As Winnieweg says on this post, grief is a journey and we all travel along it at our own pace, stopping now and again. It is so true and when I get really sad days I remember those words. Don't worry about what other people say or do, grieve at your own pace, be selfish, take care of yourself and avoid people who tell you what they think you should be doing, or are negative because you are still very upset and grieving. I don't think there is a time frame for when you will feel less sad and alone because your Mum isn't here any more, you just have to read the posts on all the forums to see that it is sometimes years …. just try and hold on to the nice memories you have and let go of the horrible ones. And for some closure yes as Nurse Nicola has said it might be a good idea to ask your Mum's medical team exactly what did happen, I found that unless I asked specifically in hospital what was going on with my husband and his palliative treatment, I was not told much. Best wishes to you going forward.

[NewBrideNearly60]

Hello Corrine, it seems we are in a very similar situation. My partner, Tony, was diagnosed in February of last year with pancreatic cancer which had metarsized into his abdomen - having had all sorts of mis-diagnoses which included 'supposed IBS, anal fissure, wheat intolerance' - you name it - over a 2 year period ...

I feel so guilty that we did not pursue investigation into this as at the age of 57 as he died on 28th October after 6 months of chemo. However, until you are in this situation, you may agree, you have literally no idea what the awful pain and new symptoms could mean, and at your husband and Tony's young age you dread even to think of cancer ....

Anyway, Tony's death and final end were very traumatic and it all happened in 4 days - but we were marvelously supported by St xx (name removed - moderator) Hospice in XX .

We hadn't been together that long, and married in August of last year in our garden in XX, where Tony was positive and cheerful but sadly we both knew the end was near ...

I hear what you say, being a widow at 59 seems so wrong, but I only wish I had had such a long and wonderful marriage as you evidently did x

If it helps in any way, our local vicar (I am not religious) who married us in the garden in July, told me at his funeral in November - be thankful for the pain of losing as it means you loved him so much x

Might not help but made me feel slightly better xx I may have been of no comfort but just wanted to reach out and say I understand x Jules

[Corinne]

Thanks for that Jules, and though no-one can bring our husbands back, I find some comfort in reading the posts on this forum, hearing how other people are coping (or not coping) whether carers or patients.

Your husband was too young to be taken by this cancer, it must have been heartbreaking for you both. When I read of people in their 40s and 50s having to deal with such a horrible, aggressive cancer it just doesn't seem fair or right.

It will be 4 months on 17th January since my husband died. It is getting slightly better but not much. I very much miss the companionship we had, the nice retirement we had made for ourselves after many years of very hard work running a business, to have it all taken away in such a brutal fashion seems so cruel. He was diagnosed on 15th August and died on 17th September so we had no time really, all I have is a WhatsApp trail of messages between us which make for very sad reading. He was so brave saying we will face this together but the moment the nurse said he was not well enough to tolerate chemotherapy that was it really. Tears are coming so I will leave it there.

[Lulla bye bye]

Bless you Corinne

I am so so sorry xxx