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hello everyone, this is my first post but have been reading so many of your posts and cannot believe how many people are going the through the same awful thing it makes me feel a lot less alone! my dad was diagnosed in august with inoperable pc (liver spread) and the chemo took so long to get going then had many problems with liver function etc was so soul destroying to keep getting turned away from the chemo ward but fingers x things going a bit better now just hope and pray this chemo gives him a reasonable amount of time. i met up with him in august and i noticed immediately that he was jaundiced and as a nurse who used to specialise in hepato billary conditions i knew some horrific news was coming but tried to play it down to the rest of the family just hoping it was a gallstone or something but as things progressed i knew what it was just cant believe this could happen to my dad a fit 65 full time worker who had no pain or weight loss or any other symptoms and who gave up smoking 30 years ago! but it has happened so just have to do my best in this horrid situation. much love and support going out to all of you, petra xxx

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hi petra, welcome to our "family" you will get lots of support on here, we all live day by day, with small acheiveable goals, everyone seems to react differantly to differant chemos, ihope you have a good team and hospital looking after dad, things will settle down for you all, just try and stay positive and enjoy each other, forget all the trappings, they count for nothing, love is everything, if you want to read about my hubby bri, click on my name and it will allow you to access old posts of any of us,keep a smile above your chin.

love laura x

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Hi Petra - so sorry to hear about your Dad. It certainly is a cruel disease, indiscriminate and very, very unfair. I am glad you have found this site as it can be very isolating and frightening - just knowing that there are others out there who understand and will lend a shoulder and an ear can be helpful. I wish we could offer more. I hope that the chemo does some good and he feels the benefit soon. My husband also was jaundiced and that can make you feel absolutely awful as you know. The fact that your Dad is otherwise fit and healthy will stand him in good stead, so keep positive - there are plenty of stories on here that will give you hope - keep that in mind and do keep us posted. We are here for you, whenever you need to ask questions or just need a space to talk.

lots of love

Deb

x

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Hi Petra,


I am so sorry to hear of your dads illness. Deb and Laura are right, you will find lots of support here from those who sadly 'know'. How is he getting on with his chemo?


Catherine x

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Hi Petra

Sorry to hear that your dad is another victim to this awful disease. My Dad was diagnosed nearly 8 weeks ago now and is only starting his chemotherapy this Tuesday!!!! He was also jaundice and has had a stent put in. My Dads is also inoperable and he is 62 and always been fit and healthy so its been a real shock, but we have to keep positive for them and hope the chemotherapy works, try to keep strong, we all know exactly how you're feeling,

Much love to you and your dad

Morwenna x

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Hi everyone. This is my 1st post too although I have been on reading posts for some months. Guess by posting it makes it all seem too real. My husband was diagnosed at the end of November as having inoperable pc which has spread to the liver. Total shock as only 51 and fit as a fiddle. Has started folfiranox which he appears to be tolerating well. On his 3rd cycle and still working, going to football matches, socialising etc. We hope that the tumours shrink so perhaps he can be offered other treatments. Does anyone know anything about Nanoknife, chemosaturation etc? Karen

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welcome to the family karen, i cant help with any of your requests, i think the majority of pc tumours are "inoperable", but not neccassarily terminal NOW!!. we were told 6mths ish, most of it is based on average, but all a bit cloudy, i think.

stay positive, fight this together, there will be difficult times ahead, not altogether with the cancer, but how chemo can alter personality etc, sure others on here would agree, or, i hope to goodness its not just me who thinks that?

you will, i am sure, get loads of help from all your friends on here, wishing you and your husband lots of strength, love and persistance when needed, also huge helping of patience.

coo that bit reads like a recipe! lol

love laura xxxx

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Thank you Laura for your wise words. I have read yours and Brians journey which makes me feel far more hopeful. We will certainly continue to fight this cruel disease together and to keep asking our oncologist for further options should the chemo become successful.

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Hi Karen

Welcome to the forum - so glad you found us and felt able to post. Keep positive, you will know that chemo can do wonders - my husband's first lot shrunk the tumour! There are lots of success stories, so focus on those and carry on as you are doing, having fun and keeping well. There does seem to be new treatments emerging all the time so you are right to keep your eyes and ears open. If you have any specific questions, it is worth giving the support team a ring or dropping them an email direct - they are fantastic and will certainly help. Know that you are not alone and we are here for you. Hoping that your husband continues to do well.

lots of love

Deb

x

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hello everyone im so sorry for the late response! catherine, laura, morwenna, deb and karen i apprieciate your replies and support so much just so nice to know im not alone and others are going through this horrendous thing with their beloved dads and loved ones, although saying that i would not wish this on anyone. sometimes i feel so sad and angry i have to put reality to the back of my mind and try and soldier on day to day i think if i thought too much i would crack right up!! this website is so useful and this forum is something of a lifeline to me everyone is just so kind and supportive of each other! and nobody please apologise for talking non stop about their loved ones this is a safe place to share and get it all off our chests!! and i love reading your posts as it makes me realise how flipping brave and strong we all are!!! so my dads oncology team very nice although basically i sometimes feel i have to fight for him as he does not have the knowledge or inclanation to do this himself! it makes me sad that in this day and age we have to really be so firm dad gets angry and tells me not to rock the boat but ill be dammned if anyone tries to fob him off with sub standard care.sometimes i just show up on the ward for some straight answers im sure they think im a right pain. chemo was going very badly initially his liver function tests nearly every week werent up to the trials standards and every week i felt like i could not bear to hear more bad news and dad was just itching to get on with the treatment so i voiced my concerns and the nurse said on a normal gemciatabine regieme liver function not routenely tested every week so of course we decided that the trial just wasnt in his best interest at that time and normal chemo started but always a 50 per cent dose he just cant tolerate any higher he ended up in hospital for nearly a week before xmas with neutrapeanic sepsis so i agree with the dose and everything going well until last week i came back from up north at about nine pm and noticed a voicemail on his phone which just said as casual as you like "your cancelled for chemo tomorrow" i was sooooo upset and disapointed dad also! i rang the 24 hour ward that night and requested some sort of explanation please! neutrophils 0.9 too low which i do understand so i am now requesting a regular one off dose of GCSF each cycle which they refused before but now seem to be agreeing with me, its surely worth it if dad doesnt miss any more chemo???? so the week before neutrophils 2.8 amd liver function normal which was very encouraging (never thought i would be so pleased about such a small victory!) so they had dropped too far in a week which i accept but they shouldnt have just left a voicemail like that for me to discover at nine at night. pre chemo again next wed lets hope the bloods are good. chemo been a bit on off on off to be honest. im also so worried about the ca1.99 which she tells me is still too high to read??? i dont believe this as it was very very high but recordable at time of diagnosis. as far as symptoms go occasional bloating and very occasional pain relieved with low strength painkillers, so please god i hope the chemo is doing something just so disheartening to be stop start stop start! and PC needs regular chemo she said that herself. scan on 13th really hoping for good news. i keep telling myself he isnt deteriorating in himself so hopefully it has had some effect....just keep reading how palliative chemo only gives about six months and i just cry and want to crawl into a hole. i am going to call the advice line tomorrow to make sure i am doing everyting i can and dad is getting the best....not on gemcap just gemcitabine and no mention of folirifox or whatever its called!! also karen nanoknife i asked dads consultant who said yes he had heard of it but to try chemo as a first line attack, there is info on it on this website, also if u email prof.sec at the (edited-moderator) in london she is very informative although she did quote me 13.000 pounds, who knows how i would get hold of the money but i would do anything to be honest. although is charging this much to despereate people ethical??? laura, yeah chemo does alter people, somethimes i feel so sad that the old dad ive always known will probably never return but i guess thats just the nature of health and ill health. congratulations on getting to the end of this rant/post without giving up and getting bored! so much love to you ALL love P xxxxxxxxxxxx

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PCUK Nurse Dianne

Hi Ladies,


Thank you for your posts. I will email both Karen and Petra individually with information that may help you both.


May I also take the opportunity to remind everyone that you can access the support line at any time for information and support. The support line is available to you all, we provide a Monday to Friday service however if you do phone or email over the weekend we would hope to respond to you on the following Monday.


The support phone line is available between 10am to 4pm on 02035357099.


or you can email us at: support@pancreaticcancer.org.uk


We usually have information on most recent treatments that we are able to give you and also contact numbers.


Kind regards,


Dianne

Support Team

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Hi Petra

So lovely to hear from you and how wonderfully strong you have been for your Dad (even if you are rocking the boat! Keep rocking, I say!) I think it is not uncommon for chemo to be a bit of roller coaster - I guess it is constant case of finding the balance between giving the highest dose of chemo possible (to kick that horrible cancer where it hurts) and keeping your Dad as fit and healthy as possible so he can tolerate it - it is more of a tightrope walk, I think! Not good to have to receive such a curt telephone message either - my experience of the chemo ward staff was not always good. I guess they are under a lot of pressure but I often used to feel like the ward was more of a production line than a hospital ward and we were numbers being ticked off a list - my hubby and I would sit waiting for hours and hours, him in pain, exhausted, uncomfortable and the only person who treated him like a human being was the lovely lady who brought round the tea and sandwiches! Will think of you and keep my fingers crossed that his chemo gets back on track.

Lots of love

Deb

x

p.s. keep ranting as well as rocking Petra -that's what this space is for! x

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Thanks deb, and so sorry to hear about your husbands discomfort on thee chemo ward that makes me sad. As a nurse I don't think you apprieciate the extreme anxiety and stress families go through when someone is so ill until you experience it first hand so ill think twice now aabout moaning about demanding relatives!! Got a lovely email from one of the ladies at pancreatic uk she was so nice and understanding. Just been in to. See dad and he wasn't his usual self......just heard on the radio about that chap from the band dr feelgood apparently yheey have predicted 12 months with chemo which has upset my dad a bit I think he is saying what's the point of chemo ust for that long????? Why oh why did he have to hear that that's just typical he happened to have a. Certain radio station on a a certain time. I have told him that often statistics don't mean too much and look at bri lauras hubby but I can tell he doesn't believe me, great I'm in floods already and its only nine am! Much love and support to you all, P xxxx

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Hey Petra

Hang in there gal. You are doing a great job fighting your dear dad's corner! We all crack up under the pressure of all this at times. We wouldn't be normal if we didn't. You are one strong lady and I know you will keep pushing for your dad.

Big hugs to you

Paul xx

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Thanks paul, just seems too cruel at times and he didn't need to hear that on the radio this morning! Sometimes I feeel like I can't carry on but this shouldn't be about me I feel a bit selfish moaning on! Have just been reading your posts- my thoughts and love are with you and your family and your beautiful andrea who is ALWAYS with you. Think of her and the good times every day and she will never fade or be gone from your heart. Much love and hugs P xxxxxxxxxx

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Oh Petra bless you. Go on how well your dad is and enjoy every day you have with him. We got a drawing from my mums consultant that gave all the stats. But on her first session of chemo a nurse told her there are people that survive years on it. Everyone is different and responds differently. So I am trying to take each day as it comes and not fear too much about the future, otherwise I think I'd go mad. Lots of love Catherine xx

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Petra - get onto Facebook, if you can. PCUK shared a link with the BBC website (assume you can find it direct bbc.co.uk. see "Wilko - cancer makes me feel alive") - Dr Feelgood guy actually saying some rather wonderful and inspirational words that certainly lifted my heart. Don't let those dark clouds set you back! xxx

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Thanks deb and catherine, not going to dwell on the statistics anymore its a waste of my time when I could be doing more productive things to help my dad! Much love. P xxxxxx

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  • 2 weeks later...

Hi Petra,

Haven't been on site for a while but just saw your post re dad's scan and wanted to say I hope it went well. No doubt you won't get the results for a while so will keep my fingers crossed. Stay strong Petra for your lovely dad.

Karen xxx

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Thanks so much everyone, just taken dad to chemo he was all hooked up to the saline flush thhen the doctor said she wanted to speak to us....platelets too low!!!! 89000, I asked for a platelet transfusion but she said thhats only for active bleeders so no chemo this week! Does anyone have experience of this? Sometimes chemo seems like an uphill struggle! Praying for good news from the ct scan!! Much love to you all, P xxxxxxx

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