Diagnosed December 2nd & still waiting for help

[LindaH]

Hi,

I went into hospital on December 2nd because I was totally yellow. It was Jaundice and developed Diabetes.

CT scan two days later revealed an enlarged liver and a 6cm tumour in my pancreas.

I was told by the Gastro doctor it wasn't operable, though he was fairly sure the tumour hadn't spread out of the pancreas, so how he could just say to me there and then without further investigation that it wasn't operable, is beyond me.

2007 I was diagnosed with DCIS (Ductal Carcinoma in Situ) and my left breast was removed. Lymph nodes all clear and several scans, bones scans, mammograms and four and a half years of Tamoxifen later, in 2012 I was given the all clear.

This pancreatic tumour came like a bolt out of the blue.

So, from December 2nd to present day 17th Jan I an no nearer getting an answer as to what the Gastro or Oncology team are going to do to help me. Does it usually take this long?

I admit Christmas and New Year came in the middle of my diagnoses and on Christmas Eve I had more biopys taken to be sent to a specialist unit to be 'stained' (what ever that may be) but I keep having to phone the hospital each week to ask if there is any news.

When I had my DCIS I couldn't move for wonderful nurses and doctors helping me, now I feel as though I have been abandoned.

I phoned the specialist gastro nurse last Friday. She informed me the Oncology team had a meeting about me and wanted me to have a mammogram on my remaining breast. I told the nurse I had a mammogram on October 24th and on October 29th received a letter informing me that all was clear.......she said the Oncology team had no notification about this.....so on and on goes the wait for information.

I will have to phone the specialist nurse yet again tomorrow because I have not heard anything since my last phone to her.

I am so despondent I just don't know who to turn to for help. My doctor rang them on January 7th, but he didn't really get much further than I have.

I phoned Macmillan and they seem to think the normal waiting time before the team have to start treatment is 31 days, but I didn't ask 31 days from when? Does anyone know please.

Any help would be greatly received please.

Thanks

Linda 59 years old with a wonderful husband and a beautiful daughter who will be 21 in February.

[DRAD3]

Oh my, Linda, I am SO sorry that you have not only been given such a diagnosis but also been left hanging without any idea of what is going to be done to help you. It is interesting that your previous experience of cancer and the response you got then was so very different. It is totally unacceptable and I am at a loss as to why this should be. My husband, like you was diagnosed following jaundice - initial hospital admission was early January 2011, by mid January we were told there was a "mass" on his pancreas, by end of January we had seen a liver surgeon who told us the tumour was wrapped around blood vessels and, as such, inoperable. We were told at that point it was pancreatic cancer and terminal and referred on to oncology. It took several further weeks to get biopsies done to confirm the diagnosis, scans taken and the jaundice levels down to an acceptable level along with discussions to take place, forms to complete - chemotherapy treatment finally began mid-March 2011! So, perhaps this isn't unusual! You are right to keep chasing and don't worry about being a nuisance - you will find plenty of people on here who say this is a must if you want to get things moving and keep up the momentum. I hope you hear soon and that you can get to see the oncologist - I am sure once you get this, things will start moving in the right direction and you will also find out exactly what you are dealing with. I am so sorry that you have another battle to fight, having already had one but you are obviously a strong woman. Please know that we are here for you if you need us and do let us know how you get on.

lots of love

Deb

x

[LindaH]

Bless you Debs, so kind of you, thank you xx

[PCUK Nurse Jeni]

Hi Linda,

I will email you directly with some information about this.

kind regards,

Jeni, Support Team.

[LindaH]

Thank you so much Jeni.

[Sones]

Hi Linda

I am truly sorry to hear your story and the dreadful time delay you are experiencing. I can only tell you my personal experience and time span from diagnosis to receiving treatment/ surgery. I was admitted into hospital in August with severe abdominal pain, no jaundice, and following a scan was referred to London for another test which involved trying to get a biopsy. All this took approx 9 weeks. I was fortunate that surgery was an option for me and whippels surgery was carried out in October 2011. I then had to wait six weeks before I could start chemo. I've never heard of this 31 days but I'm sure the support team will advise you if this is correct.

You also asked about "wind". Well lets hope we get some answers because I also suffer with the same. I take Creon but my dose seems a lot higher than yours 25000 caps and I take three with a meal and one with a snack.

Please feel able to ask anything, were all here for you and will support all we can.

Love Sue.x

[Morwenna]

Hi Linda

Unfortunately it does seem to be the case for some of us!!! My Dad was diagnosed mid November following sudden onset of type 1 diabetes and jaundice! He had a stent put in and it wasn't until after this his GP told him he had PC, it must have been 2/3 weeks later before he spoke to someone and that was because I was constantly on the phone chasing people.

He didn't see an oncologist until 27th Dec so 6 weeks after diagnosis!!

You have to keep phoning and chasing..don't be afraid to!!

I hope you hear something very soon.

Thinking of you

Morwenna

[Catherine]

Hello Linda,

I too am sorry for your diagnosis and the mess about you seem to be having now. Did you go to your local specialist cancer hospital? And have you got the name of the oncologist you have been referred to? Your gastro nurse should be able to tell you that, then you can badger their secretary directly. Or you could ask your Macmillan nurse to do that for you. My mums did when she didn't hear from the oncologist in what we thought was a reasonable time. The result was she was offered an appointment with another doctor in our cluster of hospitals quickly. Unfortunately oncologists appear to be very busy people at the moment.

I have to say though once everything sprang into action my mum has a vast number of nurses (I never realised there were so many specialist nursing roles in the NHS) and should everyone turn up at the house at once she would have to get the emergency chairs out. So prepare for an influx. I'm pleased you have got creon, even though it's giving you wind.

I hope you get on the treatment road soon.

Lots of love

Catherine xx

[LindaH]

Thank you Morenna and Catherine.

Again, I shall be phoning the hospital tomorrow 6 or is it 7 weeks (12th December) since I came out of hospital.

Surely they must realise how frightened I am, goodness, whilst I was trying to leave yet another message on the Gastro nurse's answer machine last Friday, I broke down in tears. I wouldn't care if she bothered to ask me how I was / am, but no, nothing is said.

This is my life and I want to save it, but I can't do it on my own.

Thank you sincerely for your support, it means so much to me.

Linda xx

[DRAD3]

Hi Linda

Have you tried PALS? It is not fair that you are on your own fighting and battling and I feel that you need someone in your corner - I am sure they can help by chasing on your behalf and advising. Get back in touch with macmillan too, if only to get you some emotional support - it is a frightening and lonely business and they are there to help too! It is unfortunate that these things don't just appear for us, but that's not the case - you have to ring and ask and badger. Not fair when you are probably tired and wanting someone to just take care of everything. Wishing you luck in your phone calls tomorrow and hoping things move forward for you very soon.

Much love

Deb

x

[LindaH]

Yes Deb, thank you. I did write / email to PALS last Tuesday, so I am just waiting to hear from them.

I will keep badgering them, because I have to it's my life, whether they like it or not.

Thanks again.

Linda x

[Catherine]

Hello Linda,

I was just wondering if you have had any joy yet? How did you get on with PALS? I've been thinking of you.

Lots of love

Catherine xx

[LindaH]

Catherine wrote :

> Hello Linda,

>

> I was just wondering if you have had any joy yet? How did you get on with

> PALS? I've been thinking of you.

>

> Lots of love

>

> Catherine xx

Hi Catherine,

Thank you for your message. Yes, I did get in touch with PALS - twice. The first email they didn't reply to and actually, the second email they didn't really reply to only to say a nurse would be phoning me, which she did last Tuesday 29th.

It was the Breast Care nurse who phoned me, which I was surprised about because I wrote PALS about the Gastro team asking if it was the usual case of waiting nearly 8 weeks (as is my case) to hear if I would be given any treatment for the tumour in my pancreas.

As I said, PALS didn't answer my question. Anyway, the BC nurse informed me that the 'staining' results had arrived back from the specialist lab and the samples were not hormonal...ie they had not come from the DCIS which struck me in 2007.

It's sounding like the tumour arrived in my pancreas all by itself. I'm slightly optimistic this could be a good sign as at least it hasn't travelled through my lymph nodes to get to the pancreas, however I am still awaiting the MDT meeting outcome this afternoon - Friday 1st and I sincerely hope I hear some news either this afternoon or Monday.

My moral is at a bit of a low ebb at the minute, especially when I read of people's struggles with PC and sometimes ...well it seems like most times....there's no happy ending.

I'll admit, I'm scared, terrified even, I really do not want to die. I haven't got the time to die, there's too much living to be done. This disease is awful it really is.

It's strange, but I never really knew my dad, he left mum & I when I was about five or six. My mum died in 1993. It was when I developed DCIS (early form of breast cancer) that I decided to research my family tree, I could not understand where the breast cancer had orginated from, it certainly wasn't mum's side of the family, so I started to look into my dad's side.

Okay, I found much more than I bargained for....half brother to name but one...but when I received my dad's death cert, he'd died of stomach cancer....what a flippin' great thing to inherit from my dad. Also, two of his sons (not my newly found half brother) ones I knew about before, had also died of stomach cancer....so I'm doomed

Anyway, I'll cross all the bridges when I come to them. I'll do whatever it takes to live my life. If I could have another 10 years, to see grand children, see my daughter achieve her goals in live, that's all I ask, please God.

Thanks for the support.

Linda x

[PCUK Nurse Jeni]

Dear Linda,

So sorry to hear your morale is a bit low right now. Not surprising for sure.

I do hope you get some good results from the MDT and some plan of action, as you have been waiting long enough for this.

Sorry to hear about the family tree discoveries also.

Hope you find some help from the forums. Do email us if you need us.

KR,

Jeni.

[susikus]

Big, big hugs Linda, what a nightmare you find yourself in. It feels to me like a lot more badgering will have to be done to find our what is going on. Can you ring the specialist nurse this afternoon? If it were me I'd ring now - before everyone goes home for the weekend. Our MDT used to meet on a Friday and it was soooo frustrating if we didn't speak to them - mind you I think I asked the nurse so much she used to ring me first to get me out of the way! And find out who the consultants are and ring their secretaries - please do not just rely on the system - it is creaking to breaking point in some places. Good luck with getting some answers and lots of love to you, Sue, xxx

[Catherine]

Oh Linda bless your heart. How did MDT go? Apart from your morale how are you feeling in yourself? Take that as your marker and each day as it comes - and enjoy each day. No one knows what is round the next corner of life, for any of us. I spent the first 2 months of my mums diagnosis so focussed on the illness, her imminent death and trying to enjoy her while she was here that I forgot what was important - my mum as a person. In spite of being very poorly while she was in hospital my mum is now doing great on chemo - probably the most well she has been in ages. The last few real life stories on this site have been inspirational, try not to focus on the doom and gloom and focus on you and doing something every day that makes you smile. This disease takes over peoples lives, in every possible way, my favourite thought at the moment is my mums a person not a diagnosis.

Lots of love Catherine xx

[LindaH]

Catherine wrote :

> Oh Linda bless your heart. How did MDT go? Apart from your morale how are

> you feeling in yourself? Take that as your marker and each day as it comes

> - and enjoy each day. No one knows what is round the next corner of life,

> for any of us. I spent the first 2 months of my mums diagnosis so focussed

> on the illness, her imminent death and trying to enjoy her while she was

> here that I forgot what was important - my mum as a person. In spite of

> being very poorly while she was in hospital my mum is now doing great on

> chemo - probably the most well she has been in ages. The last few real life

> stories on this site have been inspirational, try not to focus on the doom

> and gloom and focus on you and doing something every day that makes you

> smile. This disease takes over peoples lives, in every possible way, my

> favourite thought at the moment is my mums a person not a diagnosis.

>

> Lots of love Catherine xx

Bless you Catherine, thank you for all your good wishes. It never ceases to amaze me how people who have such busy lives, take the time out to wish others well, it is so, so apprecaited. Thank you

Linda xx

[carmel]

Hi Linda

I have just picked up the thread and am wondering if you have made any progress towards finding out your treatment options. I went through the same thing with my dad who was 82 at the time. I was not getting anywhere with the doctors or staff at the hospital and there was MDT meeting after MDT meeting so I became their worst nightmare, I contacted PALS which seemed to speed up the process. Sometimes it is better to demand to see people face to face as they hind behind their desks, (or they did when they saw me) so take heart. My dad who was given 3 months was given the whipples and 2 years on he has a new lease of life at 84. I hope this story uplifts yopu slightly I know exactly what you are going through as do other people on the site. The site was my lifeline when my dad was ill. Best regards to you

[PCUK Nurse Jeni]

Lovely to hear from you Carmel! great to hear about your dad! Some good news! How lovely.

Jeni.

[LindaH]

carmel wrote :

> Hi Linda

> I have just picked up the thread and am wondering if you have made any

> progress towards finding out your treatment options. I went through the

> same thing with my dad who was 82 at the time. I was not getting anywhere

> with the doctors or staff at the hospital and there was MDT meeting after

> MDT meeting so I became their worst nightmare, I contacted PALS which

> seemed to speed up the process. Sometimes it is better to demand to see

> people face to face as they hind behind their desks, (or they did when they

> saw me) so take heart. My dad who was given 3 months was given the

> whipples and 2 years on he has a new lease of life at 84. I hope this story

> uplifts yopu slightly I know exactly what you are going through as do other

> people on the site. The site was my lifeline when my dad was ill. Best

> regards to you

Thank you Carmel and so lovely to hear about your dad.

I start Chemo this Friday and though I may never be able to have the Whipples operation (though never say never) I hope I will be able to gain a few more years.

Linda x

[carmel]

Hi Linda.

That's great news.

Another step forward. Onwards and upwards.

Hi Jeni, nice to hear from you best wishes to all.

[Slewis7313]

Hi Linda, I was contemplating all the positive messages on my thread and in particular from you. The penny then dropped that I had not fully read your threads, but now have. To be honest I feel a little guilty as I now see that you have had a real fight to get to the point of finally being treated. I certainly hope your chemo is working as I noticed positive results during the first cycle (I am on a 4 weekly cycle of Gemcitabine and Cepecitabine). Whilst the chemo sessions are pretty straight forward and only last an hour in total, I still dread them though i am not sure why (I thought I was hiding this dread, but my wife can read me like a book and apparently suffers with me on these days). At the last one, the lovely tea and biscuits lady from the Red Cross suggested I should try a smile whilst I was sitting waiting for my turn. Couldn't oblige I'm afraid!

We will no doubt be able to compare notes as the year progresses, but to fill in a few more similarities, we have 2 daughters Holly aged 26 and Paige 22. The youngest lives with us along with her partner. She is studying at swansea university and is due to graduate in the summer. She was my immediate concern when they hit me with the diagnosis, as I feared she would be so distracted that her studies would suffer and I at the time doubted I would be at her graduation. She is however doing well and I am certain I will be at her graduation and beyond. Those early days of diagnosis really are difficult to deal with. Our elder daughter works in the Pharmacy at another Hospital and has been a rock, pestering when needed and asking all the right questions. She is the one who made the initial contact with PCUK, for which I cannot thank her enough. Our Oncolgist visits are like a family outings as i take my wife, daughters and at usually one of their partners.

Please let me know how the chemo progresses.

Take care

Steve

[LindaH]

Now Steve, I see you're from the lovely Swansea, but please tell me you support our lovely Welsh boys who won the Six Nations yesterday? I love and I mean LOVE the Wales Rugby team and even though the only time I visited the Mill Stad was to see U2 in concert, my aim is to see Wales v New Zealand play at the Mill Stad one of these days .

Yes Steve, it was a bit of a struggle trying to get treatment from my hospital. Some of it I suppose I can put down to the fact that my tumour is a rare kind - Squamous Cell Carcinoma, so the team were slightly baffled, but like I've said in other posts, when I had my breast cancer, I couldn't move for consultants and Macmillan nurses falling over themselves to help me....PC...well...it was a case of 'You're on your own mate'.

My first chemo - March 1st, was awful. My body didn't know what on earth had hit it, but now the second session - March 8th wasn't quite as bad. My problem is my tummy...I bet you can hear it down in Wales. It gripes and gripes and drives me mad. It takes me ages to get it to settle down. I don't look forward to the sessions, well who can really, knowing how it's going to make us feel the days after. Smile....I try. People say "You look so well"...."Keep going girl" and so much encouragement ...well I'm amazed really, but Steve, unless you've had chemo, you haven't got the slightest idea what it's like and how awful it is...so I smile and thank people, because deep down I know they care and I am so very grateful when someone says..."You look good", when my hair is a mess, the colour of my face is battleship grey and my head is in a bucket throwing up.....

I hope and pray we both come through this Steve I really, really do not only to say "LOOK YOU B*STARD I'VE BEATEN YOU", but for our loving family who feel all our pain. My darling hubby couldn't stop crying when we were told. My daughter - God bless her - never let me see how she was truely feeling.

My daughter - Natalie, as I've said is 21 and like your daughter is studying at uni - York, so of course we want to see them graduate, it's our God given right Steve. Thank goodness we have such caring loving families.

Our visits are the same at the consultants, we all crowd in, even though it may only be a quick check-up, but that's what this does Steve, it affects us all as a family.

PCUK has been a life-line to me. Just to write things down, to talk, to blog, it all helps and people on here are the salt of the earth.

Yep, we're going to fight this battle Steve and we are going to kiss goodbye to Pancreatic Cancer, come out the other side a bit shattered, but with every single ounce in our bodies we will do it.

Take care and please keep in touch

with good wishes to you and yours

Linda

Edited March 18, 2013 by LindaH

[DRAD3]

Linda and Steve, you are inspirational, wonderful, amazing...I cannot find the words but I admire you SO MUCH. You will be lifting everyone's spirits with your posts, I can assure you. Keep up the fight - we are very much behind you.

lots of love

Deb

xx