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Tina1975
Posts: 9
Joined: Sat Dec 07, 2013 9:51 pm

Re: Dad Just Diagnosed

Postby Tina1975 » Wed Dec 11, 2013 10:41 pm

Hi Marie and everyone also

Thanks so much for taking the time to get back.
I have gotta say, I read your thread last night, its so heartbreaking...you should be so proud of what you did for your mum, and Im so sorry for your loss. Its terrible having to go through all that, I did with my mum three years ago.

I am livid tonight, feeling really stressed...
Dad and family friend rung them again this morning to find out whats going on...
We were told yesterday that drs were having a meeting yesterday afternoon, and dad was on the list for them to discuss about getting him back in for them to redo this procedure(taking biopsies), so when he rang today one of the receptionists said yes we have to put it in the post but its not for a few weeks yet!!!!!
Dad explained that the consultant wanted it doing urgently..and then explained that without this he cannot get into X(edited-moderator) and how things could spread...she then realised it was urgent and said she would contact the drs.
She rang back and said the drs didnt know that it was so urgent, so one of the drs was going to go in work tomorrow morning to sort it out.
As for dads consultant...grrrr....after his secretary not getting back to us yesterday or this morning, dad re rang (edited-moderator) to try and find out if they knew anything, and they told him they only received the paperwork yesterday and the consultant he is supposed to be seeing is on annual leave all this week and next, so dad asked to speak with someone above him, and they are off too...then this woman told him, it def wont be soon, as they are fully booked and it could take weeks to sort out!!!

How the hell can this happen....

Whendad re rang his consultants secretary and played hell with her and told her he wanted too speak to him personally she said right il speak with the consultant but if he is busy then i will ring you back and tell you what he has said, and then told him, she would call either late afternnon or tomorrow morning.....guess what nothing again!

I have told dad let me deal with it, but he said im capable of doing it myself, so i explained i was just trying to help, and i knew he was capable, so he said he will wait for the call backs tomorrow but then if they dont ring back god knows....i have explained there are people we can complain too...but think he is worried of upsetting someone and it coming back on him....he was very annoyed tonight, and had waited up for the call, then said he was shattered and was going to go to bed, and then told me he just felt like throwing in the towel now, if this is what he has to put up with.

I am sooooooo furious....he should not have to be putting up with this, and certainly not have to chase and get organised his own blooming appts....i was stuck at work today and just felt so useless.

Just dont want to pressure him with regards to speaking to someone as dont want him feeling like we think he cannot cope, if you know what i mean....its just really got to me tonight as feel like he sounded so down, hes been so positive recently, and now hes even more stressed out with this. Txx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Dad Just Diagnosed

Postby J_T » Wed Dec 11, 2013 11:48 pm

I can't quite believe what is happening with your dad Tina. Its ridiculous. Even if the consultant is off on leave he should have registrars on his team, otherwise who will look after his patients while he's away?

it's not acceptable in any way shape or form and I'm surprised this is happening at a centre of renowned excellence.

If phone calls don't work I'd be tempted to rock up to x (edited-moderator) and start shouting in the corridors! (I probably wouldn't in reality but would like to!)

Hope next time you post its to say its all be sorted. Your poor dad shouldn't have to contend with shoddy care.

Julia x

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Dad Just Diagnosed

Postby marie souter » Thu Dec 12, 2013 10:54 pm

My god Tina REALLY what the hell??????????? I,m stunned and flabbergasted in fact there are no words .... Your poor poor dad ...I,m with julia on this one he MUST have registrars my mom and I didn't always see her oncologist if he wasn't available we would see one of his team ... This is not acceptable wish to god I cud come raise the roof somewhere ... Waiting wks is the difference to your dads life .... Total idiots incompetence galore ... Feel for you so much honey your frustration and worry and fear comes through in waves ... How you managed to work today with all this speaks volumes about you ... The worst thing I found dealing with was mom giving in her depression setting in ... Its not fair when they're going through so much x if u ever want to talk offline ask the moderators for my email am happy to pass u my number xxx so angry for u .... Hope u r coping a little better now ... Hope tomorrow brings better news

Ps ... My thread and mom ... Hoping time will dull everything it has for my dads passing but to me it was last night not last mth ... Still numb ... Xx

Love and hugs
Marie
Xx

Tina1975
Posts: 9
Joined: Sat Dec 07, 2013 9:51 pm

Re: Dad Just Diagnosed

Postby Tina1975 » Thu Dec 12, 2013 11:06 pm

Hi there

Hope your all well...

Well Ive just got in from work and totally shattered.

Was over at dads first thing this morning, woke at 6am and couldnt sleep, so got ready and thought stuff it im just going to go over, and even if he doesnt want me making calls at least I can be there too support him...anyway soooo glad I did now...as he actually asked me to do the calls.

So when I got there one of the hospitals had already rang him to say they had spoke to docs and the first urgent appt they could offer dad to have this procedure was 23rd dec.....(I still dont find this acceptable-but what can we do?) although they have stressed should they get a cancellation dad would be priority...cannot have enough nice words said about this woman who was on the phone...she had really pushed for the earliest.

Now...wish I could say the same for dads consultant secretary, my god i was shocked..I rang her and explained I was the daughter, and that she had spoke to dad yesterday, and told him she would get back last night, and that she didnt....her reply

"Youll have to explain whats going on, as I have had 20,000 calls since last night"

I said to her, OK, can I express to you how serious/urgent this call is today, my dad has been diagnosed with PC, and has been told he needs treatment asap, as there is a risk of spreading, and every appt that was supposed to have been booked hasnt happened, plus from what I believe a referral to X (edited-moderator) that should have happened approx 4weeks ago...hasnt been done and was only done yesterday.....well she panicked, all she kept saying was er, er,

I then said my dad requested an urgent call from the consultant and as of yet has not received one...did you ask the cons to call my dad??

She just panicked, then told me that the cons was going to get this oncologist to see dad privately...i said well i thought he was on annual leave, she said, well cons was going to ring him last night and ask him to come in off his annual leave??

so i said well we did not receive a call yesterday explaining anything, do you realise how distressing it is in these circumstances, having to wait for a call, and not get it...she said well the cons didnt text me to tell me until late whilst i was at home, and i dont mean too sound rude, but i am not going to be phoning patients from home!! I sai well i can understand that but it is now 1030am the following day, you could of rang this morning....

She had nothing to say...furious is not the word, how i kept my cool i dont know...
Anyway i then requested yet another call from the cons as i wanted to speak personally to him, and she said she would tell him, i even rang half an hour later to ask had she done it, and she said she had..

Then family member took dad out this afternoon, as he has been stuck in all day for the past few days waiting for calls, and when he returned he had an answerphone message from the oncologist sec so he rang back but no luck, so we will just have to wait now to speak with her in the morning....but hopefully she will have some good news and tell us an appt has been made....we will see

I just cant believe this week, every single appt, dad has chased up himself, pushed and pushed and in the end got it made himself, surely this is not right, this should of been done already, im livid.....anway now we will just see what happens tomorrow....but believe me, this has all been logged and im certainly going to speak with dads consultant, as i now think /wonder if its the secretary that hasnt done/sent referrals.

And guess what....still no call from dads consultant.

Does anyone know if your paying private,(dad is paying private for the consultations, but the drs have said treatment will be on nhs) are you entitled to request a call from the consultant??

I was private myself last year as had three operations...and I requested a few calls with my consultant and they did get bk to me, so wonder if they have to?? As now this is the 2nd request in 2days, and still nothing.....im furious, and actually wondering if this secretary is actually passing my messages on...

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr..........xx

Tina1975
Posts: 9
Joined: Sat Dec 07, 2013 9:51 pm

Re: Dad Just Diagnosed

Postby Tina1975 » Thu Dec 12, 2013 11:11 pm

Hi Marie....hope your ok hun...thx for your msg....yeah I really dont know how I worked today, as my head is all over the place...cannot think straight and certainly cannot concentrate much...but hey ho....and yes i know what you mean hun I am still numb with mums passing three years ago...it would be 3years on the 16th this month, and still very raw, it hurts.....xx

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Dad Just Diagnosed

Postby cestrian » Fri Dec 13, 2013 4:43 am

Hi Tina

So frustrating for you but at least you've rattled a few cages and set the birds fluttering. As I think from selecting staff in business what's in the heart is often more important than anything else when dealing with "clients". When I was first being diagnosed my lead nurse in the Gastro team actually replied to me while on holiday in the Caribbean!

Anyway it looks as though things are at least moving forward for your Dad so please don't get too hung up about minor delays. I know with time being of the essence every minute seems vital but I really don't think PC quite works like that. The most distressing thing is this failure in communication you and your Dad are being subjected to and for which there is no excuse. Once I'd got the lovely Nurse Kate on my case then everyone jumped to it and tests, biopsies and scans all took place at a rate of knots but you do need that one person who takes full responsibility for making sure stuff gets done.

Hope things improve for you all but do make sure you, yourself, get some respite from all the stress - it's a long long road and you don't want holes in your shoes if you're carrying your Dad some of the time!

Love and Peace

Mike x

Love and

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Dad Just Diagnosed

Postby marie souter » Fri Dec 13, 2013 12:50 pm

Hello Tina,

Well that was a good call deciding to go over to your dads, you certainly got some stuff done, now that you have achieved what you have achieved your dad will feel like he can start relying on you to do some stuff for him...its amazing no matter how old we get our parents still think of us as little kids lol.
I think Mike is right, the miscommunication has been horrendous but things are starting to move now and thats the main thing, his procedure being the start (thank god). Now its time to focus on this and everything should start rollercoastering from there.
I think the secretary was extremely rude by saying 'and i dont mean too sound rude, but i am not going to be phoning patients from home!'
I worked for Virgin media, and I had one particular person who was almost full term pregnant moving to a rural area, I had problems getting her phone installed she had no mobile phone signal, I was about to go on holiday and had several things I had to follow through with to make sure this happened from getting the road dug up (council permission) to making sure the technician had it down on his list that day...I rang these people, my colleague at work to make sure my work order was closed down properly to ensure the phone went live AND my customer on my holiday to make sure everything went down as it should because I wanted to go that extra mile as I was worried about her pregnancy and being without a phone...if I can do that just for a phoneline...really? This is someones life..a quick hi am at home but I just wanted you to know ... BUT I guess she could be doing that everyday and thats just me .. prollies best I aint in that job I probably would never be off the phone .. being one of those extra mile people lol.
My mom not only got calls from her consultant (on the nhs) but also had home visits when she was too ill to come out to appointments. But I think that may depend on your consultant and catchment area..I would like to think that this would go across the board for all in these circumstances. As this was yesterday am truly hoping to see your dad or yourself managed to get through to the secretary today. Believe me you ARE going to soon have that very special Macmillan Nurse who will make people jump through hoops for you and chase many things up .. appointments .. treatments .. they're like little miracle workers .. things are starting to move now though .. so take heart honey and remember to take care of you too .. hard I know when you are so worried but really you need to be in one piece to be any good to your dad in the long run xxx I think you need a few stiff drinks and to exhale my love ...

looking forward to hearing some good news today from you

Love and hugz
Marie
xx

Tina1975
Posts: 9
Joined: Sat Dec 07, 2013 9:51 pm

Re: Dad Just Diagnosed

Postby Tina1975 » Sat Dec 14, 2013 7:05 pm

Hi Guys

Hope your all well today...

Just got in, I cant believe went to bed last night and didnt wake til 0910hrs this morning, which is not like me....lately I have been up from 430/530....

Anyway spoke to dad this morning, the secretary(of the oncologist) called first thing, to say that he has a appointment weds at 345pm at christie, and its the private block were he has to attend.

I know things are moving, but yet I cannot help but feel they are not moving fast enough??

Or is this just me...panicking..

Can I ask...if you dont mind...how fast is this sort of cancer??

Also even after the call with the consultants secretary, twice now we have asked for this call from him, and yet still nothing!!!

Dad has also cancelled the clinic appt we booked with him for tomorrow, he said now that the appt was booked with x (edited-moderator), he didnt want to take up that appt when someone else could use it, plus he said he felt like he would just be going in there to complain, and that he was worried about upsetting someone. I sort of understands what he is saying, but still feel like we should of gone, to basically let the consultant know whats happened, and ask why we havent had the calls, and why has dad had to organise everything himself...

But dad has said No...so I cannot push him into doing it, its his decision I know, but considering the consulant told us last sat, the procedure would be either this week, or beginning of next...then i still think the 23rd is ridiculous.

I am panicking I know, I just couldnt think straight today, as everyday goes by I am worried this could spread.

Grrrr I just so wanted to speak directly to the consultant and ask him point blank why all this has happened...my blood is boiling....

Anyway I do hope your all well, again thanks so much for your replies, it really does help...

Gotta be up at 5am to work...grrrr

Love T.xx

Tina1975
Posts: 9
Joined: Sat Dec 07, 2013 9:51 pm

Re: Dad Just Diagnosed

Postby Tina1975 » Sat Dec 14, 2013 7:06 pm

Sorry for the above post, that was done last night...but for some reason it didnt post.....anyway had a long shift was up at 5am.....so chilling, music on loud, with a few drinkypoos tonight....................hope your all ok....xxx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Dad Just Diagnosed

Postby marie souter » Sat Dec 14, 2013 8:31 pm

Hey Tina,

Do you have a facebook account???
If so feel free to add me ... I am an insomniac so am reachable most of the time x
anyone else as well .. my pic on there is an old black and white pic of my family so you can't get me confused with another marie souter lol.
The question about how fast this cancer is .. is a question no one can answer really as everyone is different, people have different symptoms for eg depending on where the tumor is representing itself ... my mom was at stage 4 but she had been going to and from the docs for 2 years pre diagnosis with every single symptom of Pancreatic Cancer ... from her stage 4 diagnosis she had lasted 8 mths 7 days but she was diagnosed far far far too late, she was offered palliative chemo which may have helped her greatly but refused it ARGH could scream with that one she could still be here ... I know you feel like time is running away from you AND i understand the panic (I was there)... its frustrating your dad didnt go but like you say what can you do when he says no...its 9 days to the procedure (well almost 8) believe me my moms procedure was put off for 6 wks initially I was furious beyond belief... its not so long honey before you know it .. it will be here xxx
WANTS TO JOIN YOU FOR A DRINKYPOOS .... XX

thinking of you honey
Love and Hugz
Marie
xx

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Dad Just Diagnosed

Postby belgrade » Sat Dec 14, 2013 9:49 pm

Hello Tina,
So sorry to hear about your Dad, I know only too well that stomach churning feeling of worry, fear and frustration. You asked about time scales and I can only tell you about my husband's journey. He first showed major symptoms in April this year when he became jaundiced whilst we were on holiday. Hindsight is a great thing, and later on, we realised that previous symptoms of greatly fluctuating sugar levels, abdominal cramps and diarrhoea, going back to summer 2012 were probably PC and not related to his type 2 diabetes or Crohn's disease, that he had since he was 21 years old. An initial diagnosis of probable gallstones, proved to be unfounded, when an attemt at an ERCP to relieve the jaundice, failed. He was very unfortunate, that his liver and kidneys failed at that point, causing a further delay and he ws finally diagnosed on July 19th. with PC. The endoscopic scan showed that the tumour measured 4x3cm and involved the mesenteric artery, rendering his condition inoperable. He was referred for chemotherapy and accepted on a trial, causing further delay in treatment. Unfortunately, he became very dehydrated due to repeated vomiting and was readmitted to hospital a week before his chemotherapy was due to start. He developed an infection at the site of the syringe driver (major hospital care issues) and was just too weak to fight it. He died on 10th. September, aged 61 years. We have been robbed of a wonderful, husband, father and grandfather and our lives will never be the same.
However, if there's one thing I've learned from this forum, it's the fact that PC affects people in different ways. My husband was unfortunate in that he was never well, others are fortunate to have relatively "normal" lives whilst battling PC, but even for some of these, PC has a nasty way of bringing on a final fierce attack. Then there are the success stories which give hope to so many. In fact, my cousin's wife developed PC at the age of 50. She had a successful whipple's more than 10 years ago and is fit, active and very healthy today. I do so hope your Dad will be one of the lucky ones.
Take care,
Hilary

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Dad Just Diagnosed

Postby marie souter » Sun Dec 15, 2013 1:23 am

Hi Hilary,

For my mom too it was jaundice in april same initial diagnoses of gallstones and encasing the artery as well ... but my mom did have some good spells .. she had 6 bad spells and the last one involved unfortunately the dreaded obstruction which was partial on and off for a while and up until the last week really she was able to fend off a lot of her illness til the obstruction was becoming a full obstruction ... she looked very pregnant with a gas build up her stomach was very distended however reading what other people have written this seems to depend on where the tumor is based as moms liver altho initially affected by the blockage of the bile duct, once the stent was in place she really never had any further problems with that, but I've heard people having lots of problems with the liver...mom got a few water infections as well but she was able to eat most of the time albeit small amounts, lots of trouble with vomitting and a mix of backed up bowels then loose bowels your poor husband sounded like he really went through it bad, at least his awful suffering is at an end for you all .. what a good thing to hear about your cousins wife .. just goes to show if they had MUCH MORE funding early screening would make such a difference xx

Love and hugz
Marie
xx