Stomach tightness

[Slim Shadey]

Hi Everyone

Please forgive me if there any mistakes in this post this is my first time.

I hope you are all well in these challenging times.

My partner was diagnosed with Pancreatic cancer in December 2019 after various tests and 4 weeks in hospital were the initial diagnosis was gallstones she was then transferred to a bigger hospital in the region and had a the WHIPPLE procedure and spent 9 hours in surgery.

Thankfully she came through this traumatic procedure and after around 3 days in intensive care and 7 days on a normal ward she was discharged just before Christmas which was the best present I have ever and will ever have.

She is currently going through chemotherapy which as I am sure you are all aware is very challenging but she is a strong women and despite the fatigue, diahorrea and sickness feeling she is persevering with chemotherapy.

We are currently through 3 chemotherapy treatments with 9 more to go she is on Folfox I believe and it has been reduced from 100% to 80% which as led to her feeling a little less fatigued but still having the other symptoms

My major concern is that she constantly has stomach pain/tightness which also causes back ache the back ache is not as severe as the stomach ache but still there the best way she as found to describe this to me is it is like someone tighting a belt around her stomach this also makes her breathless at times and limits what she can do around the house we did mention this to the oncologist but he didn't seem concerned.

My concern is that nearly 4 months after surgery surely this should have decreased if not is this normal after a WHIPPLE procedure and when is it likely to stop.

I am really just looking for some guidance with this and any help would be greatly appreciated I just want my beautiful partner to have the best possible chance of recovering.

Thanks in advance for reading my post your support is very much appreciated.

[PCUK Nurse Dianne]

Good morning Slim Shadey,

Thank you for for your post, and welcome to the forum. I am sure you will find the forum family very helpful and supportive in coming time.

I am sure your story resonates with so many others Slim and appreciate all you are both coping with at present.

Slim it might be helpful to have a conversation with us on the support line about your partner's symptoms. It would be helpful to understand how She is managing her pain relief at present, and talk through some aspects. There may be several considerations as to the cause of this pain. Some back pain may be due to referred pain along nerve pathways, called 'neuropathic pain' in medical terms however I suggest a more detailed conversation might be helpful to ask a few questions and understand more about current medications.

Slim please feel free to contact myself or my colleagues on the support line, details below for a more indepth conversation.

I hope this will be helpful and you feel able to touch base.

with kind regards,

Dianne

Pancreatic Cancer specialist nurse

Pancreatic Cancer UK

Support line - 0808 801 0707

open Monday to Friday 10am - 4pm

Email: nurse@pancreaticcancer.org.uk

[Pattip]

Hi Slim

I am three and a half years post operation. I had a distal pancreatectomy which removed the body and tail of my pancreas, my spleen, 28 lymph nodes and a resection of my portal vein so a lot of replumbing was required as no doubt was the case with your partner.

I can only reply as a patient so it's important to speak to the professionals and do call the nurses they are so helpful. However what I would say is that I can still get stomach swelling and tightness. In fact I have a large permanent bulge around the scar. I tried to figure out if it was certain foods but after three and a half years the only things I don't eat are lettuce, salad leaves and avocado, but in the first year at least I do recall getting tightness and swelling more after eating. I take 40mg of omeprazle a day and creon with all meals and I don't scrimp on creon. I usually take 5 x 25000 with a main meal and more if I'm having more than one course.

It's very early days and your partners insides have been significantly impacted. At three/four months post op I wasn't doing much at all around the house much as my head was willing my body was still in the early stages of recovery. There is a lot of knitting together to do on the inside. Iwould go for a short walk most days which of course you can't do at the minute. I had a different chemo which luckily I found quite manageable.

It's difficult to stop yourself getting into a cycle of boom and bust, where on the days you're feeling well and you do too much which then can have an impact for a couple of days, so try and not let her do too much at once.

I did see the gastroenterologist about stomach issues towards the end of my first year but in fairness it's difficult for them as they don't see multiple cases so they put me on a low fibre diet but it didn't really change anything. I try and eat regularly before I get to a hungry stage where I would over eat.

Sorry I can't be more help as I know how worrying it all is.

I wish you and you partner well .

[Slim Shadey]

Hi Pattip

Fantastic news that you are 3 and half years post op and are doing well.

Thank you for sharing your experience over the last few years which me and my partner have taken on board.

We have been contacted by one of the specialist nurses on this site and she has given us a few ideas of the cause of the tightness.

We realize that every patient has a different recovery from each other it was just advice we were searching for about the cause, as scrolling through the forum no one seemed to have experienced this issue.

So Thank you once again, take care and stay safe.

[hopeandprayers]

Pattip wrote:

> Hi Slim

>

> I am three and a half years post operation. I had a distal pancreatectomy

> which removed the body and tail of my pancreas, my spleen, 28 lymph nodes

> and a resection of my portal vein so a lot of replumbing was required as no

> doubt was the case with your partner.

>

> I can only reply as a patient so it's important to speak to the

> professionals and do call the nurses they are so helpful. However what I

> would say is that I can still get stomach swelling and tightness. In fact I

> have a large permanent bulge around the scar. I tried to figure out if it

> was certain foods but after three and a half years the only things I don't

> eat are lettuce, salad leaves and avocado, but in the first year at least I

> do recall getting tightness and swelling more after eating. I take 40mg of

> omeprazle a day and creon with all meals and I don't scrimp on creon. I

> usually take 5 x 25000 with a main meal and more if I'm having more than

> one course.

>

> It's very early days and your partners insides have been significantly

> impacted. At three/four months post op I wasn't doing much at all around

> the house much as my head was willing my body was still in the early stages

> of recovery. There is a lot of knitting together to do on the inside.

> Iwould go for a short walk most days which of course you can't do at the

> minute. I had a different chemo which luckily I found quite manageable.

>

> It's difficult to stop yourself getting into a cycle of boom and bust,

> where on the days you're feeling well and you do too much which then can

> have an impact for a couple of days, so try and not let her do too much at

> once.

>

> I did see the gastroenterologist about stomach issues towards the end of my

> first year but in fairness it's difficult for them as they don't see

> multiple cases so they put me on a low fibre diet but it didn't really

> change anything. I try and eat regularly before I get to a hungry stage

> where I would over eat.

>

> Sorry I can't be more help as I know how worrying it all is.

>

> I wish you and you partner well .

Hi Pattip

I’m sorry to jump in, but can I ask how long it took for you to get your whipple surgery? From the point of referral for your first scan to being operated on? And how long between appointments you waited? And if you truly don’t mind me asking if it was NHS or private?? I’m seriously considering trying to get the money together for private surgery for my dad because I’m terrified of how long things are taking. They haven’t said whether they will operate or not yet

[Slim Shadey]

Hi All

 

My fiancée after going through the Whipple procedure in December 2019 and 12 bouts of chemotherapy was doing very well and starting to get on with her and our life and then on her last CT scan we were told that the cancer had returned and they had found spots in her abdomen and lungs.

 

As you can imagine this was devastating news for us both and after the initial shock we discussed the options my fiancée was very reluctant to go through chemotherapy again after what it did to her last time but agreed to do this for me more than anything whilst we were awaiting the appointment she became ill and was eventually admitted to hospital meaning she missed her first chemotherapy appointment.

 

She was in hospital with pneumonia were we could not visit due to hospital rules post pandemic as I am sure this will appreciate this was an horrendous time after nearly 3 weeks of no improvement she called me on a Friday afternoon to say that she was coming home I was ecstatic but not for long as she spoke to me I could tell something was wrong it turned out that they no longer thought the pneumonia was causing the issues with the breathing but it was the cancer being so aggressive and she stated that she wanted to come home we were both aware of what this meant but at least for me it didn't seem real.

 

She came out on the Friday by ambulance and with oxygen she was a shadow of the women I knew, but she wanted to be with me and family as this would make her happy we put beds in the dining room and spent as much time together as possible with her just sleeping and me asking her to eat and drink these were very difficult times for us both as I knew she was in pain.

 

Sadly she was to weak for any treatment and passed away 7 days later surrounded by family.

 

I will never understand why this as happened she was only 52 and the love of my life and we had so much we still wanted to do right now only the boys are giving me the strength to continue.

 

My sexy was an amazing women that I was privileged to be with, the best part of me is no longer here and that is breaking my heart but I know she fought this every step of the way and she is still the strongest, loveliest, sexiest women I will ever know.

 

I don't know what is ahead I just know it will never be the same without you and I wish I could have saved you as I promised.

 

RIP Sexy you will forever be in my heart and the love of my lifexxxxxxxxx 

 

 

[LisaC]

Sorry to hear this, my thoughts are with you

I am 9 months into this journey alone without my Lewis, just take one day at a time that’s all I can do for now 

[Slim Shadey]

Hi Lisa 

 

Sorry to hear of your loss likewise by thoughts are with you and your family at what must be an horrendous time.

 

It is a very cruel world that we live in.

[Borobi]

So sorry for your loss Slim. It’s such a cruel cancer and you must have had so much hope after the Whipple. My husband died last year during lockdown and he spent 5 weeks in hospital when I only got to visit him 3 times. He declined so quickly he was unrecognisable when I visited him. He died at home with the family there. All you can do is be grateful for the time that you had and know you did your very best for your Sexy. The awfulness fades a bit over time, and I’ve challenged myself to go to lots of places we used to go to so I can make new memories. Take care and be kind to yourself. 

[Slim Shadey]

Hi Borobi

 

Firstly thanks for the heartfelt post and i am also saddened to hear of your loss this must have been especially hard during the pandemic which has not helped either of us in this awful experience.

 

Yes it is a very cruel cancer indeed and yes we were very hopeful after she came through the extensive Whipple procedure and i know my sexy tried so very hard to win the fight but was in the end was just to weak.

 

I am very grateful for the time we had together and truly privileged to have been part of her life i just dwell on the all the things we still wanted to do and i did promise i would save her and that hurts deep now.

 

I am trying to stay strong for the boys which really should read men now but it is very difficult.

 

I hope that you are getting the support you need from your family and friends and i wish you health and happiness.

 

 

[Slim Shadey]

Hi 

 

On Wednesday 6th October my beautiful fiancee was finally laid to rest surrounded by more people than i have ever seen at any funeral if she was here now she would say that is because i am a lovely woman and she truly was and will forever remain an inspiration to me and everyone who met her.

 

I cannot express the pain that i feel at the loss of my beautiful sexy fiancee the days are bad but the nights are a lot worst and i don't think the pain will ever subside bearing in mind i am a big strong man that cries at the slightest things lately usually whilst talking to pictures of me and her.

 

Today i donated a significant amount of money to pancreatic cancer UK which was raised at the funeral from family and friends i hope it helps a little to find a cure for this savage and soul destroying disease.

 

Family and friends are trying there best to be helpful but right now but i don't want to be around people and am happier in my own space with my own thoughts hopefully this will change over time as i know they all doing there best and are only worried for me.

 

I know i no longer view the world the same and view people differently than i did before (They say it is a wicked world but the world makes you wicked).

 

I pray for anyone that is going through what myself and my fiancee have been through the last few years it is an horrendous journey but cherish every moment you get together as i would give all i have for one minute more or to hold her again.

 

I hope you are now at peace sexy and pain free and make sure you wait for me.

 

Love you forever and a dayxxxxxxx

 

 

[PCUK Ellie]

Slim, I'm so sorry for your loss. You speak so fondly of her and she sounds an amazing woman - it sounds like you were a wonderful support for her through what I'm sure were really difficult times. Our thoughts are with you and your boys. We're so very grateful for your donation and the part it will play in transforming the future for people affected by pancreatic cancer, as well as supporting those going through it now. 

 

Very best wishes to you and your family from everyone at Pancreatic Cancer UK.

[Slim Shadey]

Hi All

I never envisaged i would write on this site again but i do regularly look at posts and look for any moments of hope and there is a reason behind the post.

Today is my beautiful sexy fiancee 53rd birthday (I know just 53) and 4 months on from the darkest day i will ever experience and i felt compelled to put something down in words.

After what i am sure will be the hardest Christmas i or the family will ever face it is her birthday i will admit today as been a very emotional and tearful day from visiting the cemetery with a wreath to my phone showing my memories from only a year ago were she looked so healthy.

This cancer is so soul destroying and the ending is so quick please make sure that if you are going through this with your loved ones right now that you cherish every moment.

I still have regrets and think of her everyday trying to look back at all the amazing things we did and achieved but these memories are darkened by all the dreams we still had to make together i know i was truly privileged to have someone as wonderful as she was in my life, not only was she the love of my life but also my soul mate and best friend.

I know my life will never be the same again and that the experience has changed me forever and they was i view the world she is simply irreplaceable i would love to tell you all that it gets easier and in some ways it does but the heartbreak and pain never subside, thankfully our boys have been amazing and probably talk to me now more than ever before and they are the only reason that i keep going.

Although not a religious person i pray that i will be with her again one day as she once said to me i will hold you in my heart forever until i can hold you  in my arms in heaven.

I hope this post is not to downbeat i am just trying to express how i feel and how devastating the loss of my fiancee as been.

Finally you are the bravest, strongest and sexiest women i will ever know i will love you forever and a day until we meet again sexy happy birthday.

MWAH 

 

 

[Slim Shadey]

Hi Everyone

 

Apologies in advance for any poor grammar.

 

Well today is the one year anniversary of the passing of the most amazing, beautiful, strongest and sexiest woman i have ever known.

I would love to say that time is a great healer and everything becomes so much better and to some extent it is, you do learn to get through the days and the tears do become less frequent but the heartbreak never ends.

The only way i can describe the feeling with my limited vocabulary is the best part of you not being there.

Over the last year there have been so many dark days and some that i didn't think i would make it through.

Going back to work initially helped as i wasn't thinking so much but the main reason i have made it through this year is down to our amazing boys who have kept me going everyday predominantly as i don't want them to go through anymore pain so soon after there mom/stepmom.

I have received lots of advice over the last year some i have chosen to ignore some has made me angry and some i have taken on board but i thank most of you for this advice.

I know i was privileged to fall in love with someone as wonderful as my sexy fiancee i only wish we could have made it to that alter for our special day.

I know i never want another in my life when you have met the your soul mate, best friend and love of your life there simply is no moving on.

Finally i just want you to know Sharron that i miss you everyday and i will love you till my last breath you just make sure you are waiting for me with open arms and a massive squeedge.

Love you forever sexy MWAH