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sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Mum's diagnosis

Postby sheena » Fri Oct 23, 2015 9:15 pm

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Sat Oct 24, 2015 8:40 am

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Mon Oct 26, 2015 9:04 pm

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
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Mum's diagnosis

Postby WilliamS » Tue Oct 27, 2015 7:34 pm

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 ... -catheters

Best wishes to you and your brave Mum.

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Mum's diagnosis

Postby Marieb » Wed Oct 28, 2015 7:38 pm

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
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Mum's diagnosis

Postby sheena » Wed Oct 28, 2015 8:33 pm

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

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Wed Nov 04, 2015 9:31 am

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
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum's diagnosis

Postby sandraW » Wed Nov 04, 2015 12:48 pm

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
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Mum's diagnosis

Postby PCUK Nurse Dianne » Thu Nov 05, 2015 3:56 pm

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Fri Nov 06, 2015 2:44 pm

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
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Mum's diagnosis

Postby Minstrel1 » Fri Nov 06, 2015 3:04 pm

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

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Sun Nov 08, 2015 8:59 pm

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Wed Nov 11, 2015 7:06 pm

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
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum's diagnosis

Postby sandraW » Wed Nov 11, 2015 10:10 pm

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
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Mum's diagnosis

Postby sheena » Wed Nov 11, 2015 10:17 pm

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