My world just fell apart ( My Mam) Died 3rd Dec

[francis]

My wonderful 68 year old mother had a scan on the 2nd April 2012 which showed up liver mets. She the was sent for a CT scan on the 5th April 2012 which then showed Pancreatic cancer in the tail of her pancreas 2-3cms. Because of the bank holiday her results wasn't sent to the specialist pancreatic cancer unit ([Name removed -moderator] hospital) until 10th April 20012.

We missed the MDT Meeting that day so now have to wait until 17th April. She has gone from feeling ok and only feeling a bit nauseous to only able to eat a small amount each day and having to take 2 tramadol per night which is not quite cutting it. The GP recommended that she take paracetamol as well as the tramadol. I have rang and e mailed Mr [name removed -moderator] secretary who was really nice on the phone. She told me that we would receive a letter in a couple of weeks basically. What I am worried about is that by the time treatment starts she will be ill and not able to withstand the treatment, what ever that may be?? My question is how long do I wait before I start to ring and make a nuisance of myself???

My head is in a whirl of emotions and all I want to do is cry but I can't I have to stay positive for my dad and my children and most important of all for my mam.

I am so glad I found this site. Everyone is so strong and supportive for eachother it's really quite humbling reading your posts and I thank you for sharing some of the most heart breaking moments of your lives to help others you most certainly have helped me

Edited December 10, 2012 by francis

[ali]

Hi Francis

I would get back in contact with the secretary and ask for a meeting with consultant to be arranged

Every day counts at this stage,whether for possible treatment plan or for palliative care to alleviate symptoms which may change daily

You don't have have to come over as stroppy just me firm

From experience--if you don't keep asking you can be left in the dark,and sadly to say every day matters

Take care

Helen xx

[suef]

Dear Francis,

I am so sorry to hear your story, must be a very stressful time for you and it sounds as if you are not getting enough support with pain relief etc.

I do strongly urge you to call the Support line on this website. It is staffed by real professionals, who can give you excellent, practical advice. The number is 020 3535 7099.

Good luck - and be firm with the NHS!

SueF

[Nardobd]

Hi Francis

I'm so sorry to hear your news. The answer to your question is "Don't wait at all". My cynical view is that those who shout get seen first. Like Helen said, it's no good being stroppy or abusive but you do need to be firm and assertive.

Basically, the MDT is the meeting where your Mum's case will be discussed and the route forward planned out. The options will be put forward and all of the doctors, surgeons, radiologists and other senior clinical staff will be able to confer to see what is best. So, there's not a lot of point in having a meeting with the consultant until after the MDT but there's no reason why one can't be set up the following day.

Good luck and keep us updated.

Nicki

[rachelqt]

Hi Francis,

Sorry to read about your Mum. It is just an horrendous feeling when a loved one is diagnosed. As Helen and Nicki have said, dont wait and get back on the phone again, it cant do any harm to try and push a meeting forward! At least you know you have tried.

This forum is a great place to get your emotions out especially if you have to be strong infront of your loved ones..try not to hold it in to much though! I know from my own experience of trying to hold it together caused me to come out in a very irritating rash all over my whole body! Doctors said it was stress related even though I thought I was coping OK. Now I know it is good to pour it all out to a few good friends and on here too!

Once your Mums case is discussed at the MDT Meeting more of those questions going round in your head will be answered and you will hopfully get a more clear picture of her situation.

Please keep us posted on your Mum...Takecare Rachel x

[NICOLA]

Hi Francis, Im so sorry to read about your mam, your story sounds just like mine, my mam is also 68 and was diagnosed in Feb, she was feeling ok apart from jaundice, they fitted a stent for this after that she went down hill. She is also eating very little and taking 2 tramadol every 4 hrs, sleeping lots, I too just wanted to cry and did so when I was on my own, I will never cry in front of my mam or dad as far as they are concerned its going to be ok. 2 months on now and Im constantly pestering the professionals, I phoned once to chase up a referal letter only to be told it was sitting on a desk with a pile of other letters waiting to be signed as the secretary was on holiday, they pulled out the letter and emailed it instead. I think you should always chase things when you think they are taking too long.

My mam's pc is inoperable and she is starting chemo next week hopfully this will make her feel better in the long run.

This site is lovely for support and info, please keep us posted about your mam and stay possitive

Nicolaxx

[francis]

Thank you all for taking the time to reply you have helped so much! I did call the support line and I am making myself heard and my mother got a call from her referring doctor. They wouldn't give me any information due to data protection.

He said that they they had their MDT meeting and are not going to treat her at Morriston hospital but passing her over to ******, (we live in ****) under Dr *******. He rang on Thursday and said said we should have a letter next week so I think I'll give them a call on Tuesday.

In the meantime my mother seems and looks ok although I don't think she is eating a great deal. She still is ok with the Tramodol 2 3 times a day.

I think I am pretending she is ok and maybe they have made a mistake, well you never know??

Ive been reading some of your posts and and find it quite difficult to imagine myself going through what you all have been through and are going through, it frightens me.

Thank you for being there XXX

Edited April 26, 2012 by francis

[louiepc]

Hi Francis

Glad you contacted your mum's docs, and that she is being seen soon. Definately call them early next week, like everyone before has said, you need to keep on top of these docs/secretaries.

Good luck, and thinking of you.

louie xxx

[francis]

Today has been the first bad day. She was up practically up all night with nausea and diarrhoea. She couldn't eat all day and was actually sick green stuff as well as the Chinese she had eaten ?! She also has a dry mouth and pain in the tummy.

I'm not sure it's due to the Chinese she ate or if it was the change of anti sickness medication? She said that she felt better once she was sick.

I went to the chemist and asked their advice. They said that she should try and persevere with the medication change if possible. I explained that I was worried about how this would effect her chemo next week and they advised me to contact our oncologist (easier said than done! Should we have a first point of call for these worries ???)

IHATE THIS BLOODY CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!

[Barbara2]

Francis,

So sorry to hear about the difficulties you have been facing. I too HATE THIS BLOODY DISEASE, no doubt along with everyone else on these forums, but I know I have found support here over the last few weeks since my husband was disgnosed. You have been given good advice, you do need to be assertive and speak up for your mum and I'm glad you feel able to do that. You might have a few more bad days ahead but hopefully they will be interspersed with good days where you can enjoy your time with your mum. I hope the chemo goes well. Sucking an ice cube can help the dry mouth if she doesn't feel like drinking but it is important to stay hydrated as I'm sure you'll know.

Please let us know how things go.

Barbara xx

[louiepc]

Hi Francis

sorry your mum has been poorly, I think it could possibly be part and parcel of this disease, my mum suffered terribly with a bad tummy, she would take immodium, and these did help, although they do tire you out.

You should definately have a point of contact from your oncologist team. You should have a specialist nurse assigned to you, and be able to call at any time, as when your mum starts chemo, you need to know that you can get in touch any time day or night.

Yep completely agree with you, since losing mum to this hideous disease I can safely say I hate this cancer with a vengence. My anger is solely on the cancer and how nasty it is.

Take care

louie xxx

[NICOLA]

Hi Francis

I Francis how are you ? Its awful to see your mum in so much pain isnt it ? Whenever my mam has a bad day I feel like getting onto the phone to the professionals and asking for help and I do, most of thetime they have helped.

My mam has just started her chemo, a nurse comes out to do it at home which my mam is pleased about, the first one wasnt to good but she's just had her 3rd and Im seeing a small difference already, she's got no pain at all now and hopfully as time goes on she'll be able to start eating.

Keep your hopes up and hope all goes well with your mum's chemo.

Nicola

[rachelqt]

Hi Francis,

Hope your mum is doing better from your last post. I hope her treatment goes well for her. We seen a great improvement with my dad once he got started. You should have a point of contact once your mum starts treatment and given a list of numbers to contact day or night.

Takecare Rachel x

[francis]

I thought I would update on how things are going but first of all I would like to thank you all for your replies they have been a great support to me. Even though I don't often post I spend a lot of time on here reading your stories and trying to compare. Nicola my mothers name is also Eileen.

Well here's the update. She went in to a hospice last friday after being sick all week. She was put on an IV and given a syringe driver for sickness and pain (the sickness is the what is the worst!!). She was getting tired but coped well. She wasn't sick monday and then went for a liver biopsy on Tuesday this was an ordeal, everything that could go wrong did, but thats another story! After the liver biopsy the surgeon said that there were a few spots on her liver but they were very small. She wasn't sick that day but didn't eat till 5pm! And was very tired and so was I so how she must of been feeling must have been awful!!

She was then sick last night and feeling very tired this morning.

Ive asked about Creon and have been told that being as her stools are not loose or tary it wouldn't be suitable. Ive also asked about a stent being fitted and was told that they warn't sure where the blockage was or if there was more than one. They also said that stents bring about other problems and the point of the liver biopsy was to determine what chemo to give as chemo was the prefered treatment to shrink the cancer and that would put less pressure on the tubes that are blocked.

Oh and the nurses at the hospice told me that they wern't sure if the pancreatic cancer was the primary cancer??? Doctors haven't said a word??!! Im baffled!

We now have to wait 1 - 2 weeks for the results of liver biopsy to start chemo... I'm going to give the oncologist ring now!

Once again thank you all and I really hope that I can help with my waffle. X

[PCUK Nurse Jeni]

Hi Francis,

Unfortunately, tarry stools are not a symptom of pancreatic cancer. Pale, oily (or greasy) stools are the norm, and they are also very offensive. They are often difficult to flush. It might be that your mum doesn't have these either, which is good!

But, tarry stools is not an indicator of whether to give creon or not.

Kind regards,

Jeni.

[francis]

Where do I start on updating?? Well she'a been more in than out of hospital since i last posted. She doesn't need creon as she hasn't got the symptoms for it, as Jeni says this is good but nobody seems to be able to get the sickness under control. There is far more coming out than there is going in!! She eats hardly any thing and is sick such alot and it all bile! She is getting weaker and tired.

She had chemo on wednesday and was given ani sickness via IV on top of 100mg metrocloromide (spelling) but she was still sick just after. Then on thursday she was sick in the morning and again in the afternoon so rang chemo team as the said if she was sick twice in 24 hours to contact them. Doctor said to go in. She didn't want to go in and seems to be worse today and still being sick, 3 large vomits of bile! Despite having an anti sickness jab in the tummy, this just made her very nauseas until eventually sick a few hours later was able to be sick! I dont know what to think or do 3 different nurses said today it's just a matter of tinkering with the medication until they get it right... I want to scream "youve not managed it so far!" I would never do that of course because all the nurses are ALL so caring and do their best. I just wish she could have a break from the sickness and have some quality of life, which she hasn't had since a couple of weeks of being diagnosed. Has anyone else experienced this much sickness??

[NICOLA]

Hi Francis, sounds like my mum and yours are two Eileens from the same pod ! My mam has suffered alot with sickness from just before the diagnosis, it was just bile as she was hardly eating she's only just got it under control now, but I fear it will come back, I feel the chemo really helped as they gave her anti sickness through iv before hand and gave her stronger tablets to take home, the chemo also took away her pain which has been great, she now eating alot more too, stay strong even though your living through a nightmare, its such a rollercoaster of good days and bad... my mam's having a really bad day today even though she's got no pain/sickness she's just so down and crying alot

[francis]

Update... After suffering horrendous sickness they fitted my mother with a bile bag after upping sickness meds and administering through IV before chemo and injections in tummy none of them worked! The bile bag helped a little and she still had to have it aspirated (syringed off) every couple of hours. After they done this I felt I had to tell the doctor how upset and angry I was that we had been told while she was at the hospice (she was now in hospital) that there was no more they could do as far as the sickness was concerned. I asked the doctor why they hadn't done this before. The doctor was really nice but I cant really recall how she got around that question (I am aware that sometimes I only hear what I want to hear) The doctor proceeded to tell us that they were confident that her stomach was still working as it constantly gurgled so loud you could hear it over the other side if the room and said they would do a test which consisted of my mother drinking a dye and doing another scan to see where and how much of a blockage there was. The scan showed that it was almost completely blocked! There happened to be a meeting the next day and they discussed my mothers case. Her oncologist wasn't optimistic that a stent could be fitted (what I had asked about weeks ago!) but another doctor said he would be able to do it... She had it done the very next day, last thursday and has hasnt looked back! They discharged her friday!! What a difference... she has gone from very, very weak and not being able to walk and constantly being sick and on a syringe driver and IV drips of potassium to taking a few tablets a day and walking around shopping and cooking! Why on earth did she have to go through all that?! I really don't understand it!!! It seems all I read about palliative care focuses on quality of life... My mother didn't have any quality of life from 2 weeks after she was diagnosed up until last thursday.

[NICOLA]

Hi Francis, What an ordeal your poor mum has been through, if only they had listened to you about the stent, the whole thing is such a rollercoaster, I remember a couple of weeks ago you posted to me that both of our mum's are called Eillen and both 68 yrs young both due to have chemo on the same day. If Ive learnt one thing on this terrible journey things change so quickly. My mam was due to have chemo for 6 months and it was all going so well until a scan showed its not working, now we are playing the waiting game again. So happy your mum is up and about and shopping ! Fantastic, long may it last

Nicola

[rachelqt]

Hi Francis,

What a time you have had trying to get your poor mum sorted. Im glad that she is now feeling alot better! Just hope things can be more positive for her now. Rachel x

[ali]

To Nicola and Francis

Take care and keep positive for your families

Helen. Xxx

[NICOLA]

Hi Francis

Just wondering how your Mum Eileen is doing. Ive just updated on my mum Eileen xx

[francis]

Hi Nicola, I haven't been on here for a while, can't seem to look. I'm so sorry that the chemo isn't working, but I'm pleased to hear that youve had some quality time with her. I hope her bad couple of day's are over and she's stopped being sick and is comfortable. It's heart breaking not being able to do anything.

We are going in to see oncologist tomorrow, I'm dreading it! She has just finished 3 weeks of Gemcidabine with a week off. They only gave her 80% as I think the thought she was quite weak? I can't see that it's made any difference she seems to be getting weaker and more tired. She's also just finished another course of steroids. On a good note she still hasn't been sick since she has had the stent and is not in any pain. Take care Nicola Xxx

[NICOLA]

Francis, hope all went well today with the Oncologist today. Sending Love and prayers your way xxx

[francis]

Hi Nicola, went to see oncologist and they put her on another 3 weeks of gemcidabine with 1 week off at 80% again. She is still very weak and hasn't got much energy most days. We have asked about another course of steroids but they seem reluctant to put her on another course. I don't really understand why. She has only had 2 courses 1 of 2 weeks and another a 1 week, both low doses. They have told told us that they don't really want to put her on another because of the long term side effects??? I could understand this if the cancer wasn't terminal. Can anyone explain this to me???