Just a hello

[Thriae]

Hello to my newly inherited forum family!

My sister and I have been avid readers of the forum over the last few weeks. Our dad went into hospital at the start of October and is now home with the diagnosis of terminal pancreatic cancer. It's amazing how much I know about the disease in just 3 weeks - largely thanks to here along with fab information from Macmillan.

I'm mostly posting to say hello as I expect to be a frequent poster in the weeks to come, but also to say thank you for your honest accounts of the reality of living with PC as a patient or family member. It is also largely sleeplessness that brings me here!

Our dad is 68, lots of plans for his retirement which has only really begun in earnest this last year - dad a worrier and workaholic which makes his bleak prognosis very sad and leads to feeling very cheated on his behalf.

Dad has liver mets and pulmonary emboli, struggling to come to terms with the need for morphine as very anti medication but committed to chemo due to start in the next week or so.

The hardest thing for me is the uncertainty of how long he will remain with us. I'm focussing on xmas and not looking too far beyond, which I believe is a realistic goal: to have a good xmas together. Terrified for our mum and of what dad's eventual demise may be like.

The experience is very surreal. Am totally uncertain of how to manage this for my 4 children who have been told this week of the situation. My dad is their only grandad. Also really worried about my work commitments and supporting mum and dad. Compassionate leave doesn't really fit well with PC as there is so much support required for months before there is an actual bereavement. This leads me to the subject of anger. I don't feel overtly angry, but my goodness it's there! True to the various reported stages of grief, it is omnipresent and catches me unawares. I've got to ten stage where I just warn people I am grumpy!

Hoping we/dad will reach a position of calm when he begins to tolerate the morphine (is feeling dizzy, sick, fuzzy headed and is blaming all in morphine so seems to prefer the idea of not taking it which is frustrating to observe) is pain free and looking ahead to chemo and therefore perhaps in a better position to sort out his 'affairs'.

If anyone has any tips on how to juggle a dad with PC, 4 children and a full time job and actually get some sleep and be useful to anyone please do let me know. As enviable as it may seem to be the one without the disease or the ill husband of 40 plus years and all the fears that come with either of those positions, it is, nevertheless, challenging.

[KATB]

Hi and welcome to the forum.

Well I've just juggled 3 kids (one going through exams), a full time job and my poorly dad who lived an hour away from me and it was HARD. I can't lie - I was running round manically - I didn't have enough minutes in the day before dad was ill so it was a challenge to fit it all in after his diagnosis. However, I would not have had it any other way and I am lucky that I got to spend so much time with him and also with my mum who definitely needed help.

I am lucky in a sense that I work for myself so I was able to take my work with me when visiting mum and dad (although not easy to focus on it when I was there), which I did every single week from diagnosis. I was lucky to have a very supportive husband who managed to be around for school runs and after school activities(his work were very understanding). I also relied heavily on friends who were wonderful and rallied round to help with the boys.

So I suppose just accept any help that is offered and ask for help when you need it. It's a tough road I'm afraid and it is very exhausting but I can look back now and know I did absolutely everything I could have done and was there as much as I possibly could be and I am so thankful for that precious time.

K

x

[Cathy]

Hi there

Kate's advice is very good as she has been through such a similar situation.

As Kate says, take all the help offered to you and ask for any help you need. As well as Macmillans (or local paliative care teams) who will offer support to your Dad and his family you may find other services locally or through your work who can help. For example, I discovered my employer (I work full time and my partner has PC) offers a scheme to all employees who I have used (they offer counseling, legal advice, work advice, benefit advice etc). I have also arranged to work flexibly with the help of my union(working from home 1 day a week. Your GP can also make recommendations to your employer if that is needed.

Good luck on the journey ahead and feel free to post on here for any support you need. Also (which I'm sure you will know if you have been reading posts) the nurses are very helpful (email support@pancreaticcancer.org)

Cathy xx

Edited October 25, 2013 by Cathy

[cestrian]

Hi and Welcome

I'm a year or so older than your Dad and was diagnosed at the end of May with inoperable PC with lesions in liver and lung. Prior to seeing the initial oncologist I was treated by two excellent Gastro Intestinal specialists and immediately I was diagnosed they offered me a nerve separation operation which they do via key-hole surgery. Both myself and my GP believe this has been literally a life-saver as it worked like magic and has virtually eliminated any need for pain relief so none of the side effects of being dosed up to the eyeballs with morphine.

I'm now on cycle three of my chemo which is Gemcetabine and fortunately I've had no side effects at all of which to speak. I'm on a clinical trial so get excellent care and am scanned and checked to within an inch of my life!! One of these showed a small clot on my lung so I now deliver daily blood thinning injections which are usually fine but the one this morning really smarted for a while.

Obviously your Dad's general health and local availability will dictate his treatment but working on the "them as don't ask don't get" theory you can at least enquire. Very best of luck with your Dad getting the right treatment but do make sure you all fully understand just what you are being offered and ask for clarification if you don't. Unlike some I hear about my own specialists are both really good and actually invite questions every time I see them.

Love and Peace

Mike

[marie souter]

Hello and welcome,

Firstly am so sorry to hear about your Dad

I've been pretty much my moms sole carer for almost 8 mths now ... however there is help there through the Marie Curie foundation, carers who can share the load (but your dad would have to say ok) this can be arranged with your macmillan nurse ... my mom said no .. so hey ho ...

http://www.mariecurie.org.uk/en-GB/patients-carers/ (copy n paste the link)

there is also respite (day trips, wherein your dad could be picked up on his own with or without a carer) .. they can have alternative therapies there... acupuncture, makeovers, massages, hair stylist even .. you would need to find out through your macmillan nurse these are usually held at your local hospice..

http://www.macmillan.org.uk/Cancerinformation/Ifsomeoneelsehascancer/Advancedcancer/Caringathome/Respitecare.aspx

(this ones great as well has all about respite)

With regards to your how long all I can say my mum is currently a week away from mth 8 PC with NO chemo at stage 4 mets in both lungs ..since April 3rd this year ... my sister was wanting to know timescales and she found info online with advice from 3-6 mths for my mom with no chemo ... My own advice is ALL are different and timescales are something I have avoided like the plague ... my mom could get an infection tomorrow and be gone in two days OR she could pull out of a bad spell and be semi-normal, going out shopping for 3 mths straight with no problems whatsoever til the next hiccup ... shes had 6 rough spells (currently in her 6th) .. My mom had a lot of problems absorbing Morphine anything over 40 mgs and she went toxic (confused, weak, delirious, could'nt hold her cup or feed herself could barely walk) this happened over a mth period not straight away as this built up in her system ... morphine is a great drug and suits a lot of people but if morphine isn't suiting your dad he needs to talk to the macmillan nurse as there are so many other good (cleaner) drugs with less symptoms which do just as great a job.....Oxycodone for eg and currently my mom is on Fentanyl patches, these have suited her the best ... don't underestimate your Macmillan nurse cos I can guaruntee when the sticky stuff hits the fan ... you will be in awe of them ... there arent instant solutions and a little bit of tweaking with drugs is required and a bit of patience but they do get there...I consult my macmillan nurse over my GP everytime ... ...

Good luck Marie xxxx

[Thriae]

Thank you so much for your replies. I feel like such a fraud as I haven't been up to going into work today and yet I'm an adult daughter. Not the patient or wife of the patient or even a young child - I'm almost 40! I thought I was coping - I'm not the one at home with dad every day, watching him in pain or being sick or having to administer his blood thinning injections. Nevertheless, today I think I've had to own up to 'not coping' status and will see my GP tomorrow.

I think overall the care has been good. The initial diagnosis (lack of) seemed very uncoordinated and was highly frustrating - very much a case of evidence that NHS cuts take their toll on poor hospital staff trying to do a good job (my opinion only). However, the oncologist and assigned Macmillan nurse have been superb.

Slight glitch with the Macmillan district team not having the correct contact details so this week dad has been at home with badly managed pain, vomiting and sleeplessness, etc. etc. I do rather feel that mum and dad have been in a bit of a wasteland between diagnosis and first chemo. Frustratingly, mum and dad also are the type of people that don't do much foot stamping to get what they need and I am having to curb my personality which is the antithesis to that.

I have a question which is causing me immediate concern: as well as being sick, dad has not had any bowel movements for days despite taking a laxative. I'm sure this is normal and probably a side effect of the morphine and also smallish appetite along with sickness but - being a reader-upper - I'm worried there could be more to it. Can guarantee mum and dad wouldn't think to mention unless things became serious (one of my big worries) so should I be concerned or am I, more likely, over-thinking?

I do realise he is going to get worse, and we can't avoid the unavoidable but would like to ensure that preventative action is taking where appropriate and would hate for dad's short prognosis to be shortened further by ignoring signs of possible complications.

[Cathy]

Hi

This is just a brief reply I'm afraid as I need to shoot off.

Well, my partner is also battling with constipation at the moment. I understand that this isn't unusual with cancer patients although often with PC it is the opposite. Jonathan (that is he) has been taking sachets of laxido and also a stool softener (ducosate) both of which have moved things. At the moment he is trying to find a good balance.

Morphine is a blocker upper unfortunately. As is coedine.

The good news is that your Dad might find, once chemo starts, that he can reduce or even stop pain killers. Jonathan stopped taking painkillers completely after cycle 2.

Sorry this is so brief but I'm sure others will reply

Cathy xx

[marie souter]

HI there,

Could well be is your dad taking enough laxatives? Morphine can bung you up really bad .. I think something to speak to them about ... infact you will find most drugs given for the cancer care overall will have a constipation effect as it slows down the bowels ... the sickness is probably a result of that (not a doctor get advice tho lol) my mom has suffered a lot with constipation, nausea and sickness .. unfortunatly with PC nausea and sickness is one of those things I think a lot of people get .. sometimes the tumor in the pancreas causes inflammation and pushes down on the tummy and full bowels push up on the tummy, fooling the brain into thinking your full even when you have an empty tummy .. causing the sickness .. am sure you will get his motions going again could just be they really do need to step his laxatives up a notch (good news is if he'd passing wind below that means his bowels are actually moving in which case, obstructions are unlikely) Has your Dad had a stent fitted? My mum is currently suffering a partial obstruction of her stent...The pancreas affects the whole digestive tract when theres an issue so I think its inevitable that he will have sickness..

My advice ASK ALL THE RIGHT QUESTIONS...

1. Do you know whats causing this sickness?

2. Do you think he is on enough laxatives considering Morphine slows down the bowel?

3. Are you concerned he may have an obstruction?

4. My dad is struggling with some side effects, x y z .. could the Morphine be causing this and if so is there something else you think would suit him better?

5. Always watch out for toxicity of drugs with side effects I mentioned earlier, you don;t have to accept this .. my mom went from a gibbering .. drooling .. hallucinating person I didn't know, I wasn't happy, I asked the right questions.. BINGO .. CHANGE OF DRUGS... 3 days later .. out shopping at tescos completely back to normal and able to have a decent quality of life

I find it also helps to jot down everything from .. blood sugars to urine flow (if its reduced dramatically I know) bowel movements, fluid/food intake ... when nausea hits (is there a pattern) The docs/Macm have found this info invaluable when dealing with my mom.

Also remember they welcome questions its imperative you get this across to your mom and dad .. some info they give could be crucial to potentially saving your dads life or help them with a diagnosis on pain ... for example describing the pain can be imperative into giving the right kind of pain killer ... buscopan vs oxycodone for colicy type pain wins hands down ... good news is tho your macmillan nurse will try to drag this info out of your dad anyway lol .. no matter how silly the question is .. if its causing them concern.. clarity is not silly ... I honesltly would sit down with them and get them to write everything down that theyre worried about or have been meaning to ask ... and if you can do that ask the questions for them if theyre not one to make a fuss .. I really hope this helps some .. I'm really just giving instances of what I have dealt with so far and what has worked for us ... it doesn't mean medications that suit mom would suit your dad .. but its more to let you know that there are a lot of drugs they can use to control symptoms .. I think unless you are in this situation you really just assume .. MORPHINE FOR THE WIN .. when in fact thats just the start ...

I also think that you are about due for a break from work at least for a day or so ... it doesnt matter if your not a sole carer .. this is your Dad you must be worried sick ... I think you sound so torn that all you seem to want to do is be there for them but that damn work thing gets in the way ... you have rollercoaster ahead of you my advice is .. stop ... take a deep breath .. dive in .. BUT .. remember FOR YOUR SANITY to come up for air once in a while ...

hugz Marie x

[marie souter]

also my mom had been going to the doc for a year with me before i stormed in and said .. this isn't good enough .. blood tests later .. bile in the blood ... jaundice .. stent .... diagnosis ... we were offered chemo .. can you believe it took 3 mths 3 MTHS?? This is for someone who has very limited time ... by the time mom was offered it her nausea and sickess were so severe she couldn't bear anymore and refused it .. nhs cuts ... well as long as the fat cats keep getting rich .. politicians man

[EmmaR]

Hello Thriae,

Welcome and what good advice you have been given I have even found some tips I can use for my hubby who as gone for fit to really poorly ,and my daughter who is 50 and is in bits but she really is holding the show together coming to every consultation and sitting in with us incase we miss something and coping with 3 sons ,and yes we need help getting to grips with this BLOODY PC it's truly Awful! Awful !

but we have to stay strong and fight for our loved ones .

Love EmmaR x

[KATB]

V quick reply to say do not feel guilty about taking time off. Being an adult daughter is HARD! I've just done it and I've just turned 41. However, I feel about 8 when it comes to my dad. I found it very difficult to cope with throughout but you do get through it. Now he's gone I feel like a little girl lost even though I have my own 3 children, job, mortgage, responsibilities etc. You will always be your dad's little girl and it will be hard - do not feel bad about that.

Sorry I have to dash - keep posting though and fire away with questions

x

[InfoForMum]

Hi there,

Sage, sage advice already from everyone above and hope it helps. I'm just dropping in to say I'm sorry you guys, your Mum and your Dad are all in this crappy situation. I have the least kids (2, one 4 one 7). It's my Mum not my Dad, Mum lives alone (well apart from her huge german shepherd - Dad died 10 years ago) and she's lucky enough to still have a slim chance of surgery, but that could change before we get through the chemo and chemo radiation.

Apart from that we have similarish situations, Mum is also 68, I've just turned 40 and if I wasn't signed off sick (going back in a week or so) I would be working full-time plus helping her fight her way through the googlies this bloody thing or the medical profession chucks at us too often. A long winded intro to say you mustn't feel sheepish about reacting to this. 40 or not, he's still your Dad, your safe place. It's really, really tough to work out how to weave the emotional, practical and physical reality of this into your life, especially one as busy as yours. The key is not to get so busy you make yourself ill then, with the help you must ask for and take if needed, you will weave it in somehow. I've called it adjusting to the "new normal" and the "normal" changes quite often. Kate's advice is gold on all counts so don't rely on me!

You sound incredibly capable and focussed and so I can't imagine how frustrated you feel at their unwillingness to push for their care. I think it can be a generational thing and I would have probably been in the same situation if my dad was still around. He had a painfully acute sense of etiquette, which doesn't always serve well in this situation (there's a shocking generalisation in there and hope no offence caused. I know everyone is different regardless of their age).

I thoroughly recommend calling and discussing the info you found through research (I imagine, like me you've done loads) and info about your Dad's situation with the nurses on the support line. They are incredibly experienced, practical and supportive and can help sift through the info to get to the key nuggets it may be worth cajolling your folks to take notice of (and let's face it our Mum's and Dad's are often more likely to accept advice from a stranger, especially a formally qualified one no matter how expert you've become). I also found that Mum was really comforted by examples from the site of people in the same or similar situations and things that helped them (I introduce the fact that I was posting on here gently and stressed I'd kept it anonymous as she feels all social media is uncomfortably public). Perhaps they may also be willing to give consent to doctors to have you speak to them on their behalf? I have that permission and Mum tag teams with me whenever her sense of social appropriateness stops her expressing worries or asking questions she wants to ask.

I hope your dad finds that pain medication balance that works soon and take care.

Sarah

XXX

[belgrade]

Hello Thriae,

Welcome to this forum which I'm sure you would never have chosen to join. Don't beat yourself up about having difficulty juggling you family, job and supporting your Mum and Dad. My husband sadly passed away in September, five moths after the initial onset of symptoms (jaundice). It was a very difficult journey but I would never have coped without the support of my two daughters and some very good friends. I am very aware that my two girls put on a very brave face for my benefit, whilst struggling to come to terms with the fact that they were going to lose their Dad, who had always been there for them. You will need to be strong for your Mum and Dad, but if there is any advice I would give it is to make the most of the good days and hope that tomorrow will be a better day when your Dad has a bad day.

Thinking of you and your family,

Hilary x

[jules 2015]

Hi there

I am also struggling to come to terms with my dad's diagnosis, he is only 67 and was diagnosed with inoperable PC in July. Since then he has gone downhill very quickly. I am signed off work and originally felt very guilty for not being there, but know now that I need to help out my Mum and Dad more than being an emotional mess at work. I am 38 but do not feel old enough to loose my dad. My advice to you would be to help your parents out as much as possible, goto all the hospital appts to help digest the information and make the most of the time you have left with your dad.

Wishing you and your family lots of luck with this terrible disease

Julie x

[Thriae]

Hello everyone.

Thank you so much for recent replies. Each has been uniquely helpful.

I'm sorry I haven't posted I the last few days (feels like weeks). Dad is really deteriorating rapidly.

I went to work on Monday with the mindset that I'd have a 'Cancer-free' day. I don't meant his to sound crass or selfish, but it was selfish as I needed to focus. It wasn't to be as dad became jaundiced (this was live related as his pancreas is tail) and breathing a bit rattly as well as blue tinged extremities. After phoning round the various numbers mum gave my sister and I, we were advised either to call and ambulance or see the GP depending who you asked! We knew that dad would refuse hospital admission so mum ended up carting him off to the GP.

The upshot is dad had a liver function test today and results due in. I took my children to see him today with the possibility in mind this may be the last visit for them. Dad was having a better day by all accounts but still confused sleepy, weak and jaundiced.

I discovered on this visit that dad is virtually nil by mouth, and what he is eating he is vomiting back up. As a result I phoned the Mac nurse and asked for this to be considered urgently along with referral to hospice at home care. Mum just doesn't seem to be mentioning these things, and is t managing to get dad to eat or drink properly.

Weirdly, dad talked about just needing to get past the constipation and start building himself up a bit (his words) but then his actions belied his words. He wouldn't have any of his nutrition shake, and at 2pm had struggled to consume even half a can that day.

Mum gave him a tiny amount of jelly tonight and he was sick.

I do t think we have long and I'm so sad.

[marie souter]

Hi Thriae, This sounds terrible, I can't believe ur mom had to get your dad to the gp in that state? Doesn't your GP come out?

My mom has a pattern that when shes backed up with constipation, she ends up vomiting everything up this has happened 6 times now.

Is anyone giving him anything for his sickness/nausea?

Is he on a syringe driver?

Has he had a stent fitted in his bile duct?

I only ask cos moms symptoms that led to her diagnosis was jaundice with terrible vomiting and sickness and itching..turned out she had bilirubin in her blood causing the jaundice as her bile duct was blocked. Once she had a stent put in it didnt take too long to clear things up.

Thing is hes not going to want to eat or drink if this sickness is so bad...I hope you get him into a hospice soon so they can get him assessed properly..your poor dad sounds in a right state...My thoughts are with you honey xx

[Cathy]

Hi Thriae

You sound like you are coping really well but feel free to vent on here whenever you need to.

I hope the Mac nurses can sort out his symptoms quickly. Have they managed to assess what is causing his constipation? As Marie says, this could well be what his cuasing him to eat so little and throw up what he does.

Fingers crossed for you all.

Cathy xx

[Thriae]

Hello and thanks for the replies.

Just got home and am feeling a lot better. We had a really successful visit from the Macmillan nurse.

Dad had a whole can of Ensure whilst I was there and half a glass of ginger cordial. Soooo much better than yesterday. After he finished his last sips of Ensure he said be wanted to go out and proceeded to go to the front door with his belt undone (he'd just been getting dressed ready for the nurse coming). Him and mum had a bit of a set to about him being Inadequately dressed but he stepped onto the driveway for a moment. He came in because he felt very sick but I can't tell you what an achievement all of that was!

I think boosted by getting some fluid and nutrition, he seemed to perk up over the next few hours. He was dozing on and off but he seemed more interested in the general conversation.

He asked me "how long do I have to go on like this?" Not long after I arrived but by the time I was leaving we were talking about reflexology and complimentary therapies that the hospice can provide as we asked for the referral whilst Mac nurse was there.

I'm not suggesting we will ever get to the point where dad is trotting off to pedicure at the hospice but it was so good to see his spirit lifted enough to even think about these things.

For me, I feel I briefly had a bit of my dad back this afternoon and that is enough. It's enough to feel I can say goodbye because every other moment has been spent braced for some news or test result or shuffling around uncomfortable conversations. This was a moment of calm, and will be my goodbye moment no matter what is to come.

[Cathy]

Hi Thriae

Oh that is good news! Excellent!! I'm sure having a bit of nutrition has made him feel much better.

Let's hope he does manage to trot off for a pedicure soon

Cathy xx

[Thriae]

Thank you. I feel I can sleep tonight which means I can face work tomorrow. Every bit of positive counts doesn't it?!

[Bee]

Hi,

Absolutely every tiny bit of positive counts! Glad all went well today,

Sleep well!

Bee x

[InfoForMum]

As Bee says, living in the moment is what you need at the mo. Good on you for grabbing the good stuff and enjoy that sleep. Rest assured you are doing what you can.

Take care

Sarah

X

[PCUK Nurse Dianne]

Hi Thriae,

Welcome to the forum, I know you have been here a bit now, please do not hesitate to be in contact with Jeni and I if we can help. You can use us as a sounding board, especially at these times when you are finding it difficult to contact any of your other 'resource professionals'. We have both worked with patients in these circumstances, so can always advise you on the best route forward at times like this.

Please feel free to phone (02035357099) or email us on the support line (support@pancreaticcancer.org.uk) and we can give you some advice.

May I just say, if this is first presentation of jaundice, your father probably needs a stent inserted. If he has already had a stent inserted, the jaundice may be due to compression by the tumour, or there may be risk of an infection in the stent.

I will email you independently of the forum Thriae.

Kind regards,

Dianne

Support nurse.

[Thriae]

Dianne, I received your email at work this evening and I must tell you how invaluable that was and hugely appreciated.

I was quite astounded by the comprehensive advice you gave - it felt like a great big hug to have you go to the trouble of compiling such a volume of useful information for us.

The info on Creon's was especially helpful so I've forwarded the message to my sister and talked to mum about this briefly (she was very tired this evening).

Thank you so, so much.

[marie souter]

I actually couldnt help grinning when I seen your message about your dad, hes been in my thoughts til I could get back to my puta to see how he's doing, I was so chuffed for you all ... I've had some of that uncomfortable shuffling to do myself this week so I know what you mean .. but .. they bloody surprise you don;t they so pleased xxx