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[susikus]

Hello, I have been reading all your posts on this forum and found them very interesting and amazingly helpful. Thank you.

Here is our story: My husband was diagnosed with inoperable pc just over 2 weeks ago. He is 58, a strong, fit man who never takes a day off work. About the beginning of July he had noticed a change in bowel habit, thought he was a bit constipated, took some senna. He then wasn't constipated but had a bit of central abdo pain and wasn't right.

So he took himself to the doctor (mainly because I said he should - that change in bowel habit for over three weeks is an important sign) where he was diagnosed with constipation and prescribed lactulose. He took this and it did nothing so a week later he didn't feel well enough to go to work, back to the docs he went, came home with laxido, because "there is a spectrum of constipation". I was cross and rang our own GP the next day. I explained all his symptoms, said he was losing weight, taking time off work was unheard of for him. She saw him that afternoon and diagnosed a stomach ulcer, started him on a PPI and asked for an update 3days later.

The PPI did nothing. So she saw and examined him again, rang the hospital and he was admitted. That admission was a complete waste of time, with an arrogant consultant surgeon who didn't take a proper history, agreed with the GU diagnosis, prescribed gaviscon and said he wouldn't scope unless the PPI wasn't working afer 4 weeks. We went home. Started tramadol in addition to paracetamol four times a day.

Our GP wasn't happy with that (neither was I!) and organised a gastroscopy the following week. This was normal. She then arranged for him to be admitted under a different surgical team when he had a CT scan. The new (and lovely) consultant explained that he had a pancreatic cancer with a spot on his liver that was very likely metastatic, that his prognosis was weeks to months, not years. We came home. A week later he had a liver biopsy. We are now awaiting biopsy result and oncology appointment.

Support from our GP has been fantastic. MST 140mg daily is controlling the pain with occasional oramorph. MacMillan nurse has been to visit.

I am less impressed with hospital support but don't know if I am expecting too much. The diagnosis was given to us on a Tuesday evening and we were told he would be discussed at an MDT meeting on the Friday. The MDT nurse rang and introduced herself on the Thursday, and again after the MDT, organised a liver biopsy, which took place the following Tuesday. Great, so far so good. The following Monday I rang her because he had started vomiting over the weekend (and in any case a symptom from before diagnosis has been the progressive inability to eat, feeling bloated after eating even a v small amount) and she asked the GP to prescribe metochlopramide. This helped a little (but maybe eating tiny amounts of more liquid food helped too). At the same time she said biopsy results take 7-10 days (they'd said 3 days in the radiology dept) and an oncology appt cannot be made until results are known.

Hearing no more I rang her again at the end of the week (now 10 days) and she said she'd discussed him at the MDT meeting again, his CT had been reviewed and there was possible small bowel obstruction so they want him in next Friday for gastroscopy under GA and possible stent. I told her I'd discovered he had steattorhoea and asked if he should be on creon (learnt from this forum, thank you) and she said 'oh isn't he on creon, get his GP to prescribe it'.

She also said he is eligible for enrollment in a trial that gets him a PET scan and the research nurse will ring and said to go for it, this is good news, but we don't know what the trial is. This conversation was all rather hurried and in the hurry I forgot to ask about biopsy results. She did say that referral was with oncologist (who has been on hols and returns tomorrow) and she (oncologist) would decide priority with her secretary and call us - lots of referrals waiting apparently.

So it has been 19 days since diagnosis and we've not seen anyone yet. I rather thought someone might see us and explain things more after the initial shock had died down a little, or at least give us some written information on things like what to look for. It helps (a little) that I am a nurse. Meanwhile we wait another week with possible small bowel obstruction...

This site has been fantastic in informing me/us. My husband lets me do all the data collection and then asks me stuff! My experience in other spheres is that it is often the charities involved who are so much better at supporting and informing people/patients and so it has proved again with this experience. Thank you all and I welcome your thoughts and suggestions.

[DRAD3]

So sorry to hear your story and saddened to hear yet again another dreadfully long wait before diagnosis, information and treatment. We SO need to get PC out from under this thick carpet - why aren't GPs and hospitals getting their act together with this disease?! Fantastic that you are confident and assertive enough to chase at every step - it is unfortunate that this seems to be the key factor in getting things moving - I so hope that you get the information, support and treatment that is needed soon. Contact the support team here either by phone or email - they are absolutely fantastic in giving you lots of helpful information as everyone is different with regards to how PC does it's sneaky work and your husband will have needs specific to him and his symptoms (as you will obviously know, being a nurse). You can rely on us for a shoulder and virtual hug. Wishing you luck and strength and we have everything crossed that things move forward quickly and positively.

love

Deb

[laura]

hi and welcome, i, like deb,agree that the waiting seems interminal, 19 days is really quite quick, not quick enough for those of us affected, but so many have to wait much longer, now you are in the system, things should flow better, you can then chase them up if appts etc are taking time, am sure, as a nurse, you know that you can be assertive without being aggresive, we have not had too do that but am aware others have not been as lucky as us.

i wont repeat all brians history, our diagnosis was 6months ish, after a failed whipple, that was may 2010!!! now sept 2012. click on my name and you will be able to read all the posts.

happy to try and answer any questions you might have, but am no health professional.

wishing you both lots of strength and good luck,

love laura xx

[susikus]

Thank you Deb and Laura. We now have the oncologist appointment for next Tuesday, which will be 4 weeks after diagnosis. We don't have the liver biopsy results yet - we'll get these at the appointment. Meanwhile stent insertion is planned for Friday. I do believe that things have gone reasonably quickly, although could possibly have been speeded up a little in an ideal world. I was more thinking that it would have been helpful to have been given a little more information - perhaps a little booklet - that explained signs and symptoms and told us when to seek help. My husband might have mentioned the steatthorea and been treated for it far earlier than was the case if so, for example.

Meanwhile we have been talking about the future, looking into medical retirement and pensions, discussing funerals and allsorts. We've had lots of visitors and really are aiming to make the most of every day. Luckily with the fluid only diet we have been able to stay out of hospital and we've been getting good nights sleep - and that really does make all the difference.

Thank you for all your help

Sue

[PCUK Nurse Jeni]

Dear Sue,

Having read your posts, please do not hesitate to email us at: support@pancreaticcancer.org.uk if you need any further information regarding pancreatic cancer. Sorry to hear that things are less than ideal. It looks as though you have had the insight though to get things going and 1 month from diagnosis is pretty quick, so all good news here.

I hope the oncology appointment goes well and that you get a clear plan of what happens next.

KR,

Jeni.

[DRAD3]

Hi Sue

I note your other message on another thread and hope that you have now got a bed for your husband and he is being looked after, that you are getting the support and information you wanted and that things are moving quickly and in the right direction. Do let us know how you and your husband are. We continue to think of you.

Deb

x

[susikus]

Yes, a bed was found and he is safely installed in it with IV fluids and NG tube. The gastroscopy/stent is scheduled for this afternoon. The specialist nurse did say she would meet us on the ward but never turned up, so one of the junior doctors rang her and she said what she wanted (when we arrived on the ward the only known thing about my husband was his name - we had to explain the rest). At about 7pm a nurse came and said 'sorry, ... didn't have time to come to see you today, she'll try tomorrow"

So, he was clerked by the junior doctor and will see the consultant this morning. The junior doctor was not able to answer my questions. I asked how soon after the stent is inserted can he drink/eat/come home? Any special dietary considerations or things to look out for and will there be any follow up? He did not know any answers so we wrote out a list which my husband has and will ask the consultant this morning.

I am imagining (hoping) that he will come home tomorrow, although the junior doc thought he'd be there all weekend - he is guessing (I think).

Really old friends (godparents to one of our girls) came to visit in the evening and that was just lovely. It was horrid driving home without him though - the first night in the house by myself since we were given the diagnosis - must find out how to work the heating!

[DRAD3]

Hi Sue

I hope the stent insertion went OK today and that this helps. I also hope you managed to get some helpful information and that your husband is able to come home with you for the weekend. Looks like there is still so many unanswered questions but I guess you will know a lot more once you see the oncologist next week. Do let us know how he is and how you are and feel free to offload to us - we are always here for you.

love and strength

Deb

x

[susikus]

I am just home from the hospital. He had the stent insertion, all went well and he will hopefully be coming home again tomorrow. He tried to eat this evening but couldn't really manage much - early days methinks.

Still no specialist nurse! I am looking forward to our appointment with the oncologist next week. Then we may learn a bit more and also hopefully plan a few nice days that we will be able to look back on with pleasure.

[laura]

glad that stent is done and over, cant remember if bri had any trouble when his was done, but when hes home you will be able to offer appropriate foods?

nice that your planning some days out, thats what we all have to do, [and should always have done!!] is go with the day and just do what you fancy. some of brians,days are better than others, his energy levels have never come back, but he has just finished extending a cupboard in the hall, bit trial and error but got there today. he was well pleased xx

take it easy both of you and be happy, love to both laura xxx

[DRAD3]

So glad the stent procedure went well, and hope he is now at home with you tonight and feeling OK. Enjoy a few rest and recuperation days together won't you? Lovely to think you are planning some treasured times together to share too.

Laura - lovely to hear too that Brian has been doing some DIY - my Gary was his happiest when he was doing something practical - thrilled for Bri.

Love to you both

Deb

x

[susikus]

That was very strange - I thought I'd submitted a reply and it hasn't appeared. Apologies if it comes twice now. I'll summarise:

He is home, exhausted but OK. The journey and the stay in hospital (never a place to get any rest!) took their toll and he went to bed, slept for eight hours, got up and ate, then went back to bed, where he still is now.

Two questions: His white cell count was 22,000 at diagnosis, the consultant then explained it away as 'one of those things that happens with some tumours'. On this admission it was just under 20,000 and the discharging consultant was someone who I know so we chatted about it. He said there must be inflammation somewhere and this level might preclude chemo. He wants us to do another blood test on Tuesday am early so that the results are available to the oncologist in the afternoon. Does anyone else have experience of this or ideas?

Also I have been sent loads of info by a friend who is urging us to go down the diet/cleansing/herbal/avoid chemotherapy route. This is not us at all so any tips for nicely deflecting her?

Thanks everyone for your support - it really is invaluable.

[laura]

glad hubby is home, not surprised he's tired, sleep is a very good medicine, re your friends suggestion of non medical intervention, be truthful with, say you really appreciate her views and that perhaps you will look at some of her ideas, as a healthy diet is always beneficial!!, but for now you have discussed the options and you are going with the advice of the professionals, and that you hope she will support you both, and you really appreciate her friendship?

she would have to be really thick skinned if she fails to see your point of view.and really you both have to go with your gut feeling, i wish you both the very best, sending you both love and strength, laura xxx

[DRAD3]

Hi Sue - thinking of you and hoping all went well today. Keep us posted. lots of love.

Deb

[susikus]

We saw the consultant and chemo starts next week. Weekly gemcitabine. It floored me somewhat when the consultant said that his 'performance status' was borderline for chemotherapy. I got the impression that she thought we might decide not to try. I said hang on the disease is clearly progressing but this is a man who was working full time till 6 weeks ago, never ill and all delays have been on the medics' part, not ours. She agreed and said his referral to her should have been fast-tracked and wasn't and she'd already had words with those responsible. She also said it is an adenocarcinoma, and that the liver secondary is tiny. So his liver function remains good.

Our challenge now is to get more food into him. We need him to stop losing weight and if possible regain some weight. She emphasized that to my husband which was helpful because it is what I have been saying but he needed to hear it from someone else. She was also very helpful in terms of medication. She wasn't at all worried about his deteriorating blood results - all part of the process. I am starting to realise just how hard it is to keep track of all that is happening and all the advice we are given so I think I'm going to go and buy a large diary today and start making a record as we go along.

On reflection (and it is so helpful to write this down) I wonder if she said the bit about performance status to make it easier for us to opt out of treatment if we had wanted to. She was seemingly giving us permission to go either way I think. Luckily we had discussed it all already and decided to try. Our experience with my father's metastatic prostate cancer and chemotherapy was really very positive and while he died, it was a year later than he had been told.

She said they would not do chemotherapy in the week after stenting so next week is the earliest we can start. It'll be every Wednesday.

I just looked up NICE guidance for gemcitabine and found this:

"•People with advanced or metastatic (when the cancer has spread to other parts of the body) pancreatic cancer may be treated with gemcitabine as a first line treatment if they have a Karnofsky performance score of 50 or more.

•Karnofsky is a measure given by a health professional to a person's ability to perform certain ordinary tasks: 100 = normal, no complaints, 70 = unable to carry on normal activity, 50 = requires considerable assistance, 40 = disabled, 30 =hospitalisation recommended.

•Gemcitabine should not be used for people with pancreatic cancer who are suitable for surgery that may cure their cancer, or those who have a Karnofsky performance score of less than 50. "

I don't know what counts as ordinary tasks but my husband is entirely self caring and walking the dogs until last week and stenting. Not driving because of the cocktail of medication but otherwise his Karnofsky score is at least 70 so I am less concerned having read that. Worry, worry....

[PCUK Nurse Dianne]

Goodmorning Susikus,

Pleased to hear that you have been given some helpful information yesterday at the Oncology visit. I am sure other members will find the Performance Scoring helpful. I do wonder if your husbands score is just a bit low still as he is no doubt still recovering from his Stenting procedure last week. Hopefully with another week before commencing chemotherapy he will continue to gain strength.

I think your idea of writing things into a diary is great, and usually the chemotherapy team will give you a diary for the chemotherapy regime that will give you space to write in information, ie symptoms, fevers etc. By keeping your own diary it may also be helpful to note the foods that are well tolerated and those not so well tolerated whilst you are going through this stage. As you say there is so much information to take on board. You may also find our information pages helpful (if you have not already accessed this page) as there is an informative section on chemotherapy.

Best wishes,

Dianne

[DRAD3]

Hi Sue

So glad your oncology appointment went well. It sounds like it was very informative (although a thousand more questions are probably now coming to mind?!) Definitely keep a diary - I did and it was invaluable. You will have lots to note down - I wrote everything down. Even small things can be important when liaising with the oncology team who may want to tweak dosages etc. My husband was on Gemcitabine - once a week, three weeks on, one week off and did VERY well. No major side effects and he really did have a good six months feeling pretty good and having a relatively normal life (if you ignored the fact that we were "living with cancer"!!!) My impression is that people do tolerate this chemo very well. Hopefully it will help - fingers crossed. As for whether the consultant felt he was borderline - I tend to agree with Dianne - this may be more to do with the fact that he is still really recovering from recent procedures etc and the next week will make the desired difference. My husband had to wait a few weeks for jaundice levels to get within the desired range but once they OK'd treatment and we got cracking, he really did see improvement. I really hope things go well, Sue. Keep us posted won't you? Lots of love.

Deb

x

[susikus]

Thank you Dianne and Deb, your replies are much appreciated. My husband had his PET scan today and will be discussed at the MDT again tomorrow because he is vomiting again. Not every day but every other day pretty much. It appears that there is a finite amount he can fit into his stomach so despite being exhorted to eat more, and being prescribed steroids to stimulate his appetite, we cannot get more than two (to me) tiny meals into him without inducing vomiting. But his weight has stayed stable for the first time this week. So we'll wait and see what they say. I've started writing a diary and it is so cathartic - the words are just pouring out of me onto paper. I can already feel how helpful it is being. I am so hoping that my husband has a good response to chemo like your husband did Deb, but part of me daren't let myself hope. Our original prognosis was 'weeks to months' but I don't know what this was based on and haven't dared to ask.

[DRAD3]

Good news that your husband has maintained his weight despite the difficulty in keep food down - he must be doing something right! Never give up hope, Sue. Hope will keep you going. My husband was told 4-6 months and he made it to 15 months. Most of that time he felt pretty good and I am sure he would say it was worth the battle - he never gave up hope and I am sure his attitude made a difference. I was always much more realistic and viewed things from a different perspective - ever conscious of making our quality of life the best I could - sometimes I questioned whether the treatment hindered that but my husband wanted to try everything on offer - always hoping this would be the one that turned everything around. I had to respect that and support him. Hope really does give you much needed strength. Not sure how helpful it is to ask specific questions with regards to time expected as my impression was that no-one was ever sure. They will tend to be very vague which might not be helpful. My advice would be to take each day and each step at a time and make all the practical arrangements you need to make in readiness for the worst happening but then once they are done, put them aside and just live, love and enjoy every moment.

Glad to hear that the diary is helping, not just practically but emotionally. Keep strong, Sue - you are doing amazingly well. Love to you and your husband and hoping that he goes from strength to strength. Keep us posted.

love

Deb

x

[rachelqt]

Hi Sue,

Im sorry to read about your Husband, he seems like a strong man and hopefully he will do well on his Chemo.

My dad was on the same chemo also and tolorated it very well. It actually gave him a good boost of energy and a good appetite, he put back on 2 stone! He even painted a couple of bedrooms in the house! Like your husband he was a working man up until diagnose and really missed it, still does.

Before he went on chemo i thought he was not fit for it as he had a ruff time with his jaundice, stenting, vomiting and lost alot of weight. So to my surprise they were happy for him to go ahead. They told us if he was fit enough to get out of bed, wash and dress, and be awake for 50% or more of the day he was good for chemo!

Is your husband on any anti sickness that may help with his vomiting?

I hope it goes really well with the chemo and let us know how he is doing

Stay Positive, Rachel xx

[susikus]

Well it is the middle of the night and I cannot sleep! To be honest that is not all that unusual for me. Just wanted to let you know that we had a good day yesterday, the best since the stent insertion certainly. Pete managed three small meals with snacks in between, friends visited, he had no vomiting or diarrhoea, and to be honest didn't really feel nausea either, minimal pain. We went to bed saying 'today has been a good day'. My daughter went for a job interview yesterday and heard today that she has got the job and we received a cheque from the dog insurance (the day of the diagnosis in our absence they ate a razor, blades and all!). We have his oldest friend and best man visiting today so I hope it will be another good day. I think the steroids are helping (10 day course to stimulate appetite). I am really hoping they do start the chemo this week - it'll be Wednesday if they do - fingers crossed. It's my birthday on Friday and chemotherapy is what I want as a birthday present! Thank you all for 'being there'. Hope you are having good weekend everyone.

[susikus]

We got the letter from the hospital this morning and Pete IS having chemotherapy this week - on Friday - on my birthday! I really could not wish for a better birthday present in the circumstances

We had a very good weekend and today has not been so good - more pain and nausea - it really is a roller coaster ride isn't it?

The rain has paused so must get out and walk the dogs - just wanted to let you know the good news

Sue

[DRAD3]

FANTASTIC NEWS Sue!!! What a big smile I have on my face reading your news. You are certainly on the roller coaster and its seems that good days do seem to be followed by some sort of penance but those good days are SO precious and wonderful that sometimes the price is worth paying. Let's hope that once Pete's chemo starts, he will have more and more good days. Thank you for sharing your good news and your story about the doggy disaster (which made me smile too - is that wrong?!!) Hope you enjoy your early birthday present and the week continues well - hoping too that you manage to get some good night's sleeps, Sue - you need your rest too remember (I know - easier said than done!) Much love.

Deb

x

[susikus]

In the midst of what feels like disaster our dogs have kept us going! You are right to smile Deb - they make us laugh! Both of them ate a disposable razor and were x-rayed, one had eaten plastic and the other had four blades inside him. Lots and lots of soft food, gastroscopy and countless x-rays later he pooed them all out. If only real life were so simple. And dare I say it is the second time he has done it - the first was when he was a puppy and we were taking my father on his last holiday 2 months before he died - my daughter had to deal with it all (he had a big op that time). He knows how to 'entertain' us

[susikus]

Well, after feeling 'yuck' all day Monday and not even bothering to get dressed, Tuesday was a much better day. More food consumed than on any day since diagnosis and feeling more energetic. We had our first visit from the district nurses - not that there is anything 'to do' at the moment. Pete is now on the 'virtual ward' and we have access to nurses round the clock with a special phone number. We are seeing the oncologist today, chemo training session tomorrow and chemo itself at 14.30 on Friday so it is a busy week. I think a lot of the improvement we are currently seeing is getting symptoms under control - the consultant last week quite radically altered the pills Pete is taking (ie he is taking loads more!) and it is working, plus the stent is all settling in now. Onwards and upwards...

Sue