New diagnosis

[Cjg]

Hi. My partner is 52. He has just been diagnosed with adenosquamous carcinoma of the tail of the pancreas that has spread to the liver. We are in turmoil. He has had his first course of Folfirinox last week. Our lives have been turned upside down in a matter of 5 weeks. I have no idea how we are going to get through this. We feel this is just one big nightmare that we are going to wake up from sometime soon. Everything is just too much at the moment, and I feel overwhelmed and am struggling to cope with the every day issues of life. We have 5 wonderful children between us and some good friends. We are terrified for the future but really trying to be positive but it's so hard. We get married in 5 days.

I've read so many of the posts on here and that helps, hearing how so many people have got through this awful situation. We are both so scared.

[Veema]

It is a really scary time, there's no getting away from that, but you have no choice but to just get on with it. My husband (also 52 on diagnosis) decided right at the beginning that he wasn't going to let it rule his life and he didn't...he too had Folfirinox and tolerated it well. We had a caravan and went away for weekends, even when he was having chemo. The chemo shrunk the tumour sufficiently for surgery and again he made a good recovery from that. Unfortunately for us, it came back and he died in September, just short of 2 years from diagnosis...they were 2 fairly good years which many don't get, so I feel thankful for that.

I think once you get into it, you will just be in that mindset of getting through each day, week, month the best you can and making the most of every moment. I don't know if the stats for tail PC are different to head PC, but I'm sure you're aware of how rubbish the overall prognosis is...but many people live a good quality life for a good few years and who knows what the future holds. No doubt others will come along with suggestions for things like nanoknife, ablations etc...I don't know enough about them to comment, but they may be an option for you.

You will also be entitled to benefits which aren't means tested...we didn't find out about these until it was too late, so look into them - PIP definitely.

Lots of love and luck...try to enjoy your wedding...take loads of photos and make those memories.

Vx

[Cjg]

Hi Velma, thank you for your reply. I'm sorry you've lost your husband but it's good to hear you can lead something like a positive life. It's important to make the most of every moment and create wonderful memories so hopefully we'll do that this week and the foreseeable future x

[Veebee]

Welcome Cig....as Veema has said, there's only one choice in this situation and that's to get on with it. Your partner will need your emotional and physical support and you'll feel drained at times but there'll be good times too and I'm certain that you'll both come to terms with the situation and face it with a positive outlook. Take Veema's advice about the benefits that you can claim. They've been a huge help to us as my husband is always cold so our heating has been on constantly for months. Enjoy your wedding and have a lovely day and then get into tackling the ups and downs that this disease will bring. Hoping for more ups than downs for you both. Wishing you both well.

Vee xx

[Didge]

Hi Cig, my partner was 48 on diagnosis and it was also in the tail. He did not get folfirinox until it spread to the liver but when he did it almost eradicated the tumours before he couldn't tolerate the chemo any more. I do hope your husband gets a good response. It is a terrible shock but you adjust to taking the good days one at a time and not looking too far into the future. For a start you have your wedding to look forward to. Xx

[Cjg]

Morning, with our wedding sadly behind us we can try to deal with this awful situation head on now. The pain is back this morning and night sweats are really bad, changing pyjamas several times a night.....why is this? Second chemo is tomorrow. Seems we've gone a bit backwards as the pain had got under control a bit. We've been offered a nerve block.....so may try that too.

I'm still off work and can't decide what to do about that.

Any advice appreciated, we're still so early on in this process and I know the journey is going to be a long one.

[PCUK Nurse Rachel C]

Dear Cjg,

I do hope that you had a truly special wedding day and that both you and your partner were able to enjoy this very special celebration.

Cjg, my name is Rachel and I am one of the nurses that works alongside my nursing colleagues Dianne, Jeni and Chris on the support service.

I am sorry to hear, however, that today things are not quite as positive and that your husbands pain (and night sweats) are more problematic, this I am sure is not easy for him (or you).

If you dont mind, I will email you separately in relation to the above.

Kindest regards,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Cjg]

It's strange that I first posted under a heading of "new diagnosis" and now all this after only a few months seems routine and too familiar. We have had devastating news that the Folfirinox has not worked, the tumours have grown and as if that wasn't enough ,there has been some spread elsewhere. So we feel we are right back at the beginning and everything has been for nothing. We have been offered Gemcitabine as another option possibly with Abraxane if funding could be sourced. This was due to start this week but unfortunately my husband has been admitted to hospital with a possible liver abcess around one of his Secondary lesions. This is his fourth hospital admission in the last 5 weeks. We were due in London today for a second opinion, but can't go there either. I'm not even sure why I'm posting to be honest, unless anyone out there has a miracle suggestion or any words that can make this nightmare more bearable.

[Veebee]

Hello cjg....I would dearly love to send you a miracle or a magic wand. I don't have advice on chemo either as Allan had just the one round of it. I'm not much use to you in those respects but I'm willing you both on and sending you love and strength at this time....Vee xxx

[Quickasyoucan]

Sending you strength and support. We all know how you feel with this relentless roller coaster. I hope your hubby gets some relief from his abscess. We are all with you.

[Proud Wife]

Hello Cjg

I am very sad to read the latest update on your husband's condition. You've barely had time to come to terms with the diagnosis, let alone the news that treatment has not worked.

Please continue to post. Feel free to rant, moan, sob, laugh (if you possibly can) or just reach out for some virtual hugs from people who have been exactly where you are now. We understand just how mind blowing this can all be and how hard it is to accept what's going on. My hubby died just over a year ago now and I still can't believe he died. It still doesn't seem possible that someone who'd never really had a day's illness could suddenly be a dead man walking.

Nothing can make this nightmare bearable really but I would just like you to know you have a whole forum family behind you who are willing you and your hubby well xx

[Veema]

Hi Cjg...unfortunately, no miracle suggestions here either, it's such a shame the folfirinox didn't work. I hope your husband gets some relief from his current symptoms and gets to try a different regime if that's what he wants. Sometimes, the bravest decision is stopping treatment and making the most of the time you have left together. I suggest you read Marmalade's thread on their journey without chemo. I appreciate that all us partners have the instinct to keep 'fighting', keep trying different things, but there does come a time when even we have to say enough is enough.

Much love...we're all here with you.

Vx

[Didge]

It's possible that gemcitabine and abraxane could work better if the folfirinox hasn't worked. Different chemos work for different people. It's not quite so fierce in terms of side effects although again that is an individual thing. My partner tolerated folfirinox quite well but couldn't tolerate gemcitabine at all. It really depends on what he wants to do. Thinking of you both. We've all been through this nightmare or are still going through it so do post whenever you feel the need. My partner died nearly 2 years ago and I still come on here from time to time x

[Cjg]

Thank you all for your kind words. It's good knowing there are people out there who have experienced similar. 5 months ago my husband was the fittest he has ever been, never a days illness. I cannot believe where we are now, I just cannot believe it. Once he gets over this infection and gets home from hospital, we have some tough decisions to make I guess. I have never felt so out of control. Thank you all x

[Didge]

One thing many of us have learnt is that you can go from believing it is your partner's last days or even hours to a relative period of ok lasting weeks or months. So many things can affect how they are apart from the cancer. Infections, blood sugar levels, ascites etc etc. There are constant unpredictable ups and downs. Good luck with the decisions x

[Dandygal76]

I think any and every decision around this cancer is brave... one of the bravest is to stop treatment. However, it depends on the person and I am proud that the two days before my dad died that he was planning more activities with my son and putting a bathroom in downstairs. That was absolutely the right decision for him and it had to be that way. You need to listen to your inner voice and to him. I believe, if he wants to fight, your next best option is GemCap and this is available on the NHS. Whether it is not having treatment or requesting more treatment the only thing I will strongly suggest is that you advocate for their choices and make people accountable. x

[JaneTravers]

Hi Cjg

I'm so sorry to hear you have reason to be on this forum. I completely understand your shock and despair at your husband's sudden diagnosis. I hope I can help by sharing my experience so far.

My name is Jane, I'm a young 63 and was diagnosed with PC in March this year, completely out of the blue, having always been very fit and healthy, a keen runner and swimmer. Have had some major setbacks, including having to have 2 stents inserted and hospitalisation with neuropenic sepsis after 1st chemo session of Folfirinox. Today I am in hospital having my 2nd chemo. However, I want to tell you about the positives! Like you, my husband and I were looking forward to our retirement together, after a lifetime of work and bringing up a family. I particularly wanted to travel, especially to India and other far away places which we never had the time or money for before. We went through a period of grief that these plans were now in doubt. However, our family and friends have been incredible! We lived in Spain for 9 years, and friends we made there have 'popped over' to visit and we've had so many lovely family days, lots of fun and laughter. I have obviously given up my part time job and on the good days, of which there are many, love being at home, pottering in the garden, reading loads, seeing friends. Lots of people don't have this opportunity. My husband and I recently went away to Norfolk and had a wonderful time, I now value every minute of every day. Our daughter had planned her wedding for July next year (2018) but in light of my illness, and my recent 'near miss!' has brought it forward to this September 9th to make sure I'm there and on top form! So we are planning a wedding for 100 guests in 9 weeks, great fun. So I can honestly say, after you get over the grieving for what could have been, you can be happy again and see life as a precious gift, to be enjoyed a day at a time.

I hope this helps, and I wish you both all the luck in the world xxx

[Cjg]

On the 9th August, at the age of 52, my strong brave husband lost his fight, after just 5 months. Yesterday we said goodbye. I cannot put in to words how I feel, how unbelievable this awful journey has been. We asked for donations at the service yesterday and have so far raised over £800 for Pancreatic Cancer UK. We thought we'd have 2 years minimum. Life has been so cruel. I hope all of you out there with this terrible disease make the most of every minute like we did.

[WifeampMum]

Dear Cjg

I am struggling to respond to your post as it is so heartbreaking but I want you to know that I am thinking of you and sending you my sincerest condolences. I hope the memories of your April wedding and the other good moments that you managed to share with your strong brave husband - despite the horrible diagnosis - bring you some comfort.

Love, W&M xx

[Didge]

Cjg, I am so sorry to hear your news. In fact very few people get 2 years. My partner who was operable managed 22 months. I know there are some who manage more but understandably they often don't come to the forum so much but just get on with their lives. But I completely understand how you hold on to that timescale and then to get so little is heartbreaking. Sending you lots of love for the times ahead. Didge xx

[patrigib]

I'm so sorry ......... condoleances, just don't know what to say........

[Quickasyoucan]

I am so sorry for your loss. We all understand what you have gone through. The bad news and the hits seem relentless. If there is one good thing, it reminds us to tell our loved ones we love them and not sweat the small stuff. And remember you are not alone x

[AndAde]

I'm so so sorry. There are no words xx

[MaxineR]

I am so sorry to read of your sad and devastating news and I wish you my sincerest condolences.

[PCUK Nurse Jeni]

Dear CJG,

I am so sorry to learn of your loss.

Please accept our condolences at this heartbreaking time.

I would like also to express our sincere thanks for your kindness towards the charity in the collection which you took up. It is greatly appreciated.

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707