Mum's diagnosis

[Marieb]

Wonderful news, so good to hear the positives, long may it continue X

[Slewis7313]

Wonder Woman indeed Sue. What great news and I am so glad the medical staff took the time to view the photos with you both. I certainly hope the good news continues and we all know no change is positive. Please give her my best.

Steve

X

[Sueoliver]

My girls have decided to raise money by organising a Charity Ball! This will be on Saturday 20th February 2016 at the HG Wells centre in Woking. There will be a 3 course meal, casino tables , a band , disco and raffle and auction. The Charities will be Pancreatic Cancer, Breast Cancer and Ovarian Cancer. Our family has been hit hard by cancer! My niece died last October from Breast Cancer and my sister in law (her Mum) died on 3rd October (2 weeks ago) from Ovarian Cancer and as you all know my Mum is putting up an amazing battle against Pancreatic Cancer.

I don't know where you all live or if it is even possible but if anyone would like to attend please contact me. It will be an amazing night and there are plenty of hotels in Woking.

I will be contacting all the Charities involved and we hope to raise lots of money for each of them.

My Mum is stable and still enjoying her visits to The Harvester! Long may it continue!

Love to you all.

Sue xxx

[LMD]

Your mum is an inspiration, Sue! I can see why you call her a Wonder Woman

Love to you both x

[Sueoliver]

I hope everyone is ok it is quiet on here at the moment!

My Mum is still fairly stable although my stepfather had a word with me today and said she is having accidents, not making it to the toilet on time, apparently the feeling comes on suddenly! He also thinks she has lost weight as her face is very thin! Her stomach has got bigger, she looks very pregnant! They will ring the hospital next week and get an appointment to have it all checked out. I will be relieved as we all know how sneaky this cancer is.

Mum has booked a weekend away on the 13th November and my Stepdad is worrying about it. Fingers crossed it will be ok.

Love to everyone,

Sue x

[sheena]

How lovely to have a weekend away hope they enjoy it .Steve's tummy looks big as well but unsure if it's because he has got thinner every were else that it looks bigger.hope you are coping sue and taking care of yourself I sometimes wish this nightmare was over and just b normal again.Steve is not sleeping and is up til 4/5in the morning not sure why he isn't asked if he was in pain but said no.Have noticed he does terrible belches all the time, have a lovely weekend x

[Sueoliver]

It is hard isn't it Sheena. I've been thinking how great Mum is and then "wham" it hits you again! Mum's stomach is definitely ascities as the hospital have already told her to keep an eye on it and go back if it is uncomfortable which it is now! Her sleeping is awful as well she goes to bed and only sleeps about 2 hours and then spends the rest of the night in her chair! This has been going on for months. I think her body has got used to it now! The wind seems to be a problem for all PC patients although my mum's is the other end almost every time she stands up!

Oh well let's keep going and keep supporting each other.

Love to everyone,

Sue xxx

[Sueoliver]

Does anyone on here know anything about ascities? I googled it which was the worse thing I could have done! I'm imagining all sorts of things now!

Mum was very grumpy today even swearing which is absolutely not my Mum!!

Love Sue x

[WilliamS]

My Dad had ascites and also looked pregnant. He had it drained once via an ascetic tap, done at our local hospital. He went to X-ray where they inserted a syringe into his abdomen and connected it to a drainage bag. Then he was taken up to a ward to allow the fluid to drain off. He was there from 9.30 a.m. to 6.00 p.m. and they drained 9 litres of fluid (nearly 16 pints). He came home 8 kgs lighter and 5" thinner around the waist. He said the procedure wasn't uncomfortable and he felt better for it.

A couple of weeks later he had a permanent rocket drain fitted so the ascites could be drained at home, initially by the District Nurse and then they showed Mum how to do it. The nurse drained 600 - 700 mls a day initially and after that it only had to be drained every few days. The nurses called it an IPC Peritoneal Catheter and it looked like this (the one on the right) -

http://sales.rocketmedical.com/products/indwelling-drainage-catheters

Best wishes to you and your brave Mum.

[Marieb]

Hi Sue,

I hope you and your mum are keeping well. Ascites sound very painful and uncomfortable and I can understand your mums normal personality changing slightly whilst dealing with it. I hope she is far more comfortable now.

I also hope you are ok, you sound a tower of strength to your mum, but sometimes it can all take its tole. Please remember to look after yourself too X

Marie

[sheena]

Hi sue hope this message finds your mum feeling better ,take care of yourself love and hugs x

[Sueoliver]

Just a quick update! Mum phoned the oncologist who said she has to go to her GP ? The appointment is next week! I find this irritating as the GP will refer to the hospital what a lot of time wasted! All this and the fluid is building up!

She is still her normal positive self only talks about the future and has brought herself a pair of trousers for next summer! She is "Wonder Woman" !

Her bladder control is very weak and she says she urgently has to go to the toilet else she has an accident. She is also getting up about 3 times a night to open her bowels! She said she gets a sudden stomach ache!

I am wondering if the ascities is playing a part in all this and pressing on her organs. Does anyone have any experience of any of this?

Mum's booked a weekend away next weekend and my stepfather told me yesterday he is dreading it! He is 86 and I suppose it is easier for him at home as everything is in place!

This is such a cruel disease I wish there was a cure!

Love to everyone.

Sue xxx

[sandraW]

Sue,

Your Mum is a wonder woman for sure, remaining positive through all this, she really is, I know Trevor would not have coped at all.

How frustrating could think of a better word not really printable though, that she is having all this messing about waiting for GP appointments, don't they have any on the day appointments, think I would try ringing and explaining the situation if I were you. We were lucky in the respect that we could just go to the treatment room and be seen straight away, at our hospital unit, they were really great.

I hope mum, and your stepfather too enjoy their weekend away and that mum stays as well as she can be. love to you all sandrax xx

[PCUK Nurse Dianne]

Hi Sue,

Sorry to hear Mum is struggling with the ascites. You are correct in that you mention the ascites may be causing the 'urgency' for the toilet and also the bowel problems. With all the additional fluid in her abdomen, it will press on all the 'organs' in the abdomen, and cause these issues and others. Often patients will find that they cannot eat as well as normally as the fluid will also push up under the stomach, can 'cramp' the kidneys/bladder so they do not have their normal 'storage' capacity and also push up under the base of the lungs. Is Mum getting short of breath when she is up and about or when she lays down? This may also be due to the extra fluid.

From a perspective of taking this forward, there are some options. Sadly with the 2 day wait for access to a GP, it will be then Friday afternoon, and as we know this is not the best time to get assistance. I would suggest it is time to 'call a friend'. Do you have a specialist nurse anywhere through this journey, either at the hospital, at the oncology unit? Do you have a Macmillan nurse who has been involved in Mum's Care? If you have any of these contacts i would contact them, and ideally before lunch time on Friday as it can be difficult to get things done late on a friday afternoon. If you do not have either of these, do you have a Hospice nearby to Mum?

Please do not be upset at me mentioning a Hospice, this is a great service, and often they will assess the patient and help you to get a plan of care sorted, it may be that they can organise a direct referral to the hospital too. If all else fails, a trip to A & E would be the option.

I am sorry for you and any others that are given these '2 days before you can be seen' targets, as this really is not satisfactory when you have a condition and symptoms such as this. Please do feel free to be in touch if you wish to discuss further or if we can help you with this at all.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Team

[Sueoliver]

Thankyou Dianne for your advice. I managed to get Mum an appointment today at 5.40p.m! Not ideal on a Friday afternoon! It is with a really good GP though and I'm hoping she will see how urgent it all is!

When Mum got up from her chair today she was wet so the bladder problem is obviously getting worse. What an awful situation!

I hope they can help her get this sorted quickly.

Love to everyone,

Sue x

[Minstrel1]

Good luck! I hope your mum gets a the attention she needs and deserves. Lisa x

[Sueoliver]

Mum went to see her GP on Friday and she is referring her! Mum didn't know any details or when it would be! I spoke to Mum's community hospice nurse as well and she said she has to go to the hospital to have it done not the hospice.

She is going away for her weekend on Friday and I'm not sure how she is going to get on. Her expectations are very high!

Fingers crossed she hears from the hospital tomorrow.

Sue x

[Sueoliver]

Still haven't heard from anyone! Pretty poor really! Mum is away for her weekend on Friday so she won't cancel that anyway! She had a fall on Monday and cut her head! I am so worried but I can't stop her from going away and I can't chase the Dr's any more than I have!

I am very stressed and very sad!

Love Sue xxx

[sandraW]

Oh Sue,

I know those feelings so well, the frustration is almost too much to bare, you just feel as if no one cares.

I do hope Mum enjoys her weekend away, good on her for wanting to go. love sandrax xx

[sheena]

Hope your mum has a lovely weekend away ,good for her she certainly has stamina .x

[PCUK Nurse Jeni]

Hi Sue,

Sorry to hear all this about your mum.

Was your mum seen after the fall and cut head? As she probably should have at least been assessed.

Did she lose consciousness at all? Is the cut on her head deep at all, or superficial? Did it bleed for long?

Its probably not an issue now if she has been OK since, and don't want to add something else to this for you Sue, but just in case.

Hopefully, she has a nice weekend away. Is she going somewhere where there will be help for her should she need it?

Kind regards,

Jeni.

[Sueoliver]

Mum managed to have her weekend away and she said she had a lovely time. My stepfather came back worn out and didn't say he had a lovely time! She was happy that is the main thing!

Before she went there was no word from the Dr! I went round today and still nothing! Mum' s stomach was even bigger and her leg was leaking fluid! She also said she could feel it in her throat and she feels exhausted.

I decided to ring the G P myself which I did and he rang me back to have a chat. I told him everything and he promised to call me back which he did and he also arranged for the acute oncology team to ring me from the hospital ! They have now arranged for Mum to go in at 8 a.m tomorrow and hopefully if bloods and everything are ok they will drain the fluid. They said she will be in for a day as long as there are no complications. I am so relieved they are seeing her! I can't believe she has just been left for 10 days since her emergency GP appointment!

I must admit I am dreading the next few weeks as the deterioration is obvious now. I have read on the internet that ascities is "the beginning of the end" in pancreatic cancer and that scares me!

Throughout this whole journey Mum has remained positive and determined and she still is.

Love to everyone,

Sue xxx

[sandraW]

Sue,

Hope they get Mum feeling a little more comfortable today, I am so glad that she enjoyed her weekend, but your poor stepfather, he would have been so worried that something might go wrong.

It is terrible that your Mum has been left as you say, but then I know all about that.

Its good that your Mum can remain positive, and lets hope she continues to kick its ass as she has managed to do so far. Sending you a hug, love sandrax xxx

[Sueoliver]

Thankyou Sandra I really appreciate you keeping in touch on here. A Quick update on Mum her blood sugar levels were 27.9 + and the nurse said her reader doesn't go higher so goodness knows what the real reading is! She is anaemic and her blood is thin! They are keeping her in and she is having a blood transfusion tonight and insulin . Hopefully they will drain the fluid tomorrow. They will keep her in until her blood sugar levels stabalise!

Let's see if tomorrow is a better day.

Love to everyone,

Sue x

[Sueoliver]

Quick update... Mum has had about 7 litres of fluid drained and her blood sugars are stabilising. She has to inject herself twice a day and check her readings! She was tucking into her dinner last night and has been told she can eat whatever she likes! She still has a smile on her face!

Love to everyone,

Sue x