My husband was diagnosed with terminal pancreatic cancer in May 2008 and was given a 6-18 months prognosis. He was an amazing man and refused to go down without a fight. He was determined to outlive the 18 month max prognosis and did just that. When he reached 18 months we had "Kevin's I'm Still Standing Party" to celebrate outliving the prognosis - a fantastic night which, despite him not being great in himself that night, he was rarely off the dance floor !! We were not naive, we knew this disease would eventually get him but he was determined to live life to the full for whatever time he had left and that is exactly what he did. We ticked lots of things off his "Bucket List". He did the Greath South Run a day after being released from hospital despite his Oncolgist's advice that he shouldn't and raised £4,500 for our local Hospice. We had lots of parties and get togethers with friends and family. We had an amazing Oncologist who was receptive to all of our offerings from research we found on the internet. We travelled to Sicily for Cyberknife - not that we thought it would cure the cancer, we just thought it might extend Kevin's life. With hindsight, I'm not sure it was a great idea for Kevin to go through this when he was so weak but it was what he wanted to do and we did whatever he wanted !! Sadly, Kevin passed away 20 moths after diagnosis, aged just 48. He never gave in and the end came very quickly which is just as he hoped it would. We lived a very positive 20 months and my son and I have lots of happy memories of that time despite it also being the worst time of our lives. When you are told you are dying, your zest for life becomes unstoppable. I miss my husband dreadfully and think about him every day but as I say to my son......"your dad didn't crumble when he knew he was dying so we would be doing him a dis-service if we crumbled now". His strength throughout his cancer battle has carried us through the 2 years since he died. We used to say, somebody has to get a miracle so why not us. We didn't get the miracle we hoped for ie a complete irradication of the cancer but we did get 20 very special months and we are grateful for that.
Sending hope and strength to all of you who are fighting your battle and I wish a miracle for each and every one of you x
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Maggie25
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Thank you Jo and love back to you for your loss of your mum. As you say, a cruel cancer. My husband also lost his mum when he was only 8 to the same cancer and she was just aged 27. Needless to say my son is now in a screening programme. x
That is a beautiful story...so far my husband has not been labeled "terminal" they really dont say much either way...waiting I guess to see if surgery will be a possibility if his cancer shrinks away from his vein and artery..am I being nieve???? Is pancreatic cancer a death sentence??? So scared..
Hi Miki - I understand your fear. I am in no way an expert on pancreatic cancer, I just researched a lot when my husband was diagnosed. It appears to be a cancer with a poor prognosis but some people do go on to survive it. Sadly, my husband's tumor never reduced sufficiently to become operable. However, I was in touch with a man through the Macmillan website who had the same size tumor as my husband and his did shrink and become operable and he was still very much alive and kicking. I also read of other people who had survived pancreatic cancer so I would say you should never give up hope and you should continue being as positive as you can summon up the energy to be - I know this can be very emotionally draining. I truly hope that your husband gets good news about his tumor and I wish you both strength to get through this. x
My husband, also called Kevin, died of this awful disease on the 15th April. He was extremely brave after diagnosis and sorted out as many financial matters as he could, even what sort of music he wanted for the funeral and where I was to scatter his ashes (not done yet, I'm not ready). Unfortunately, we only had a month, but I will never forget how strong he was at that time, even building bridges between family members who had problems,.
Kev was only 41. I miss him terribly and think about him all the time.
So sorry to hear you too lost your husband to this cancer Nia and even more sorry to hear that you only had one month from diagnosis. Your Kevin sounds like a very brave man and it sounds like he wanted to protect you by sorting as much as he could before he passed - hopefully that brings you some comfort. You must be very proud of your Kevin as I am of mine. I wish more could be done to raise awareness of pancreatic cancer so it was in the public eye as much as say breast cancer is. You don't hear much at all about pancreatic cancer fundraising - hopefully this will change in the future. It is early days for you if you only lost Kevin on 15 April, it will be the 2nd anniversary of my Kevin's passing on 22 December but it still feels like it was only yesterday and I too think about Kevin all of the time but, in a way, I wouldn't want to change that. Hope you have good support around you
Thanks Maggie. It helps to talk about it. And it is early days, I know. It's still so raw and I sit here wondering what's the point of anything without him? I feel so powerless and annoyed that much of that time was a blur because we were so shocked. I keep blaming myself for not knowing that there was something very wrong.
I am proud of Kev, he was a giant personality and made everyone laugh, every day. I will never forget just how brave he was.
How on earth do you manage Christmas, as you lost your Kevin so close to that time? I'm absolutely dreading it.
Hi, my mum was diagnosed with pancreatic cancer on 12th September 2011 ,it may be feel more optomistic reading your blog if you had 20 months with your wonderful husband Kevin . I hope to have the same time with mum, the 12 th of September is a day we will never forget! Mum had no symptoms other than painless jaundice , at that point she hadn't lost any weight had no pain , no bloated feeling loss of energy , so we were all incredibly shocked when an ultra sound picked up a mass approx 3 cm in the head of her pancreas there were also some on the liver which is a very common secondary site for this type of cancer . My mum is 68 and I know the prognosis isn't great but she is staying positive , when asked about life expectancy she didn't want to know as we believe knowing how long you have dosen't necessarily help to keep mentally strong. The family know through research how long we think we may have with mum , but everyday we pray for a miracle. Mum is currently on gem- cap chemo just had 1 month and feels really well, were also looking at dendritic cell therapy which primes your own immune system to fight the cancer . If anyone want to search for a better form of chemo if your eligable then Folfirinox is also a option if you can get it ( a large trial was carried out in france )but isn't commonly used yet in the UK , but google it the results were quite impressive , mum couldn't have this according to the hospital but dont give up anyone you have a right to the best treatments available .I also have contacts with cancer research UK and pancreatic cancer is going to be one of the main focuses over the next 5 years to find better treatments and screening , breat cancer and bowel have so far received much of the funding in the past 40 years !! My husband is doing a parachutte jump this weeknd to raise funds for research and awareness and i'm doing a 5k fun run , if we all stick together and try and do our bit we can make a difference and help change the statistics. To everyone out there struggling with this disease you have my deepest sympathy and support we have to keep fighting to help our loved ones and improve the prognosis. Best of luck everyone Nessy x
I'm so sorry to hear that your mum has been diagnosed with Pancreatic Cancer . Your mum sounds like she has a strong, positive and supportive family around her, and, from our experience, I think that goes a long way. You sound like you are doing absolutely everything possible to find out relevant information for your mum. I researched loads when Kevin was diagnosed and we were lucky that our Oncologist was very receptive to discussing the things we had found - some we went with, others we didn't but it was so important to be able to discuss all of the options that might be available. I also think it's important that the person who has been diagnosed feels like he/she has people fighting their corner and getting the absolute best available for them. I too prayed for a miracle and, as I said in my post, in some ways I think we were granted one because although it sounds strange we had 20 wonderful months despite it being the worst time of our lives. It is good to hear that pancreatic cancer is going to be one of the main focuses for funding over the next 5 years - this is long overdue.
Good luck to you and your husband on your respective fun run and parachute jump - I hope you raise lots of money for this deserving cause.
I wish and pray you get a miracle for your mum and that she continues to do well on her treatment. Stay strong Maggie x
TO ALL the people who as this cancer and those who have lost loved ones , you all are in my thoughts , i too have this awful cancer with a terminal prognosis , I try to stay strong for myself and my family , Ihave an amazing family who support me , members of my family as applied to register with EUROPAC which is based in Liverpool who do trials in ways of finding the genes that could be family linked , as my brother passed almost 3 years ago w
ith it .If anyone interested taking part in this trial ring......0151 7064168 to register.
Sorry to hear you have this cancer and that you lost your brother to it, my thoughts are with you and your family as I know how difficult this battle is.
We too have had 2 cases of PC in the family - my husband and his mother. EUROPAC do great work, let's hope they are able to identify the faulty gene soon to enable better screening to be available.
I'm so sorry you have PC, my thoughts are with you too.Interesting to hear about the screening, I didn't know about that. My Kev's father died when he was 12, and it sounds like it could have been PC (the family are hazy about the details of his illness).
My Kev's family weren't certain of what his mother had died of either they just said it was cancer as she died when he was just 8 (40 years ago). We obtained a copy of her Death Certificate and the cause of death was stated as PC. Once it was established that two generations had died of PC that's when we were put in touch with EUROPAC who confirmed we met their criteria for my son to go on the EUROPAC screening process. The screening isn't straightforward as they haven't yet identified the faulty gene that is involved with genetic PC. They explained that it isn't a certainty that my son will have inherited it and, even if he has, some other factor has to come into play to trigger the cancer ie enviromental, smoking etc. My son is on the programme to be screened every 3 years.
Hi Maggie, when you said you had 20 months with your husband but the cancer was still classed as terminal , is that because the tumor was to big to remove or had it already metastasised? I think I mentioned before mums is 3.5cms but there were already lesions on her liver so they cant operate on her , was your husbands still contained i the pancrease during the time you had together and did they offer gem cap chemotherapy or somthing else?
what a touching letter made me think of my dads battle with pancreatic cancer and matasteses, he too fought a brave fight but the pain of his loss in may 2010 is endless.xx
Thank you "nursing", I'm sorry to hear you have lost your dad to this cruel cancer, I understand your pain. I try to keep myself busy, it's the only way I can get through. xx
Hi Nessy, Of course I don't mind you asking, I'm happy to share any information which may be of help and I'm sorry for the late reply, I've only just seen your post. Kevin's tumor was only in the pancreas when he was diagnosed but the tumor was wrapped around a main artery and was, therefore, inoperable. He started chemo to see if they could shrink the tumor away from the artery in an attempt to make it operable. The chemo he was on to start with was gemcitabine and tarceva combined. At the time, Tarceva wasn't available on the NHS, I don't know if it is now. I can't remember the exact timescales but he spent from about May to September on the Gem/Tarceva combination which did shrink the tumor but, unfortunately, not away from the artery. He then went onto a pump for the chemo with a different combination -Gem and and I can't recall the exact name but it was something like 5 flur and he had this for six weeks whilst he had a 6 week course of radiotherapy. Once that was finished he went back onto Gem/Tarceva but, after a while, the cancer metastasised and the pancreas tumor started growing in size so they concluded that the Gem/Tarceva was no longer working and switched him to Gem/Capecitibine which he stayed on until a couple of weeks before he died.
Did you get any further with looking at the dendtric cell therapy ? I do hope your mum is as well as she can be and is not suffering.
If I can answer any more questions, please don't hesitate to ask.
Hi Maggie, mum is doing remarkably well considering everything !! she is still out socialising meeting her friends shopping and driving around the place , bless her.She had chemo last thursday and hasn't needed to take any sickness tablets for the side effects and at the moment has a real appetite . Her weight has remained stable and she's even put a few pounds back on over the last 12 weeks since her diagnosis . They have offered her 6 months of chemo and we go back at the end of Jan / Feb for a scan to see if it's done anything , I so hope it has . Mum is being a real trooper and fighting all the way. Were doing our bit , my husband and sister in law did a parchute jump yesterday with a friend who worked with mum and between them they raised arounf £3000 for pancreatic cancer research , I'm doing a fun run in Manchester dressed as Santa with my sister and hope to raise a bit more . I dont know how long we'll have with mum but at 68 she has led a healthy and very active life never needing more than a parecetamol !! now she is type 2 diabetic under going chemo and has a DVT in her leg , all down to the cancer , but we dont ever give up hope , were a very close family and I love my mum to bits , she is the backbone of the family .
After the 6 months well have to see what they offer , unfortunatley having travelled to liverpool the dendritic cell therapy was dissapointing , the stage 3 trial was cut short as the therapy wasn't working as well as could be expected and that Gem Cap is still the best treatment available for this cancer , if mum continues as she is they may offer her more after the 6 months as I've heard that this type of cancer dosn't respond well to radiotherapy not sure they will offer that, were currently under Christies in Manchester .
Mum is looking forward to christmas so that's our next goal and then her 69th birthday in Feb.
Take care . Wishing everyone else dealing with this the very best .
Hi Nessy - good to hear that your mum is doing well and continuing to socialise etc - I think keeping things as normal as possible is good for everyone but most of all the person who has the cancer, it keeps an element of normality when life is far from normal. Good also that your mum has put some weight on because Kevin lost so much weight and I think it is harder for them to deal with the treatment when they are thin and weak. £3,000 is an amazing amount - well done to your brother and sister in law and good luck to you on your fun run do you have a Just Giving page, I will sponsor you if you do. Hope the treatment continues to go well for your mum. I know it's difficult to remain positive when your world is crumbling around you which I'm sure you will feel it will be but I think remaining positive does have benefits for all concerned. It sounds like your mum has a wonderful family around her. I really hope you get the best outcome possible Nessy xxx
Hi Maggi, thanks for your kind words, it would be so wonderful to think we too could have 20 months with mum , we have a wonderful family and thats all down to the hard work and patience of our mother who tought us right from wrong , manners and respect for others as well as her sense of fun, mum has always been the life and soul of any party ,you can always hear her laughing from across the room. we will be her legacy! justgiving.com/vanessa-reeves
This is my donation page for both the events .
Take care of yourself, speak soon, love to all who read the blogs , wishing everyone well.
That's a lovely summary of your mum Nessy. I've visited your just giving page and made a donation. Hope all goes well with the run and, more importantly, hope all goes well with your mum and her treatment and you get the longest time possible together. Maggie xx
Its now 2 months since the awful diagnosis was given to me .... inoperable pc , how do i keep going ! I look at my children and grandchildren and my amazing family who are my constant strength and try and stay strong . Iwill be seeing my oncologist on the 19th to discuss things , see if chemo will help . If anyone can give me tips on questions i should be asking , it would be very helpful , as when i get there my mind seems blank . So far not been feeling too bad , i have just had 2 lovely weeks with my sister in Scotland , my brother passed almost 3 years ago with the same so i am all too aware about what to expect . Its good to write onto this site as everyone knows what we are all going through x x
Hi Cath - would any of your children do a bit of research on the internet for you as to what the best options would be ie type of chemo etc and then go with you to your appointment with the Oncologist and ask a few questions for you or make a few notes of what the Oncologist is recommending as your treatment so that you can understand this in more detail once you are back home and able to digest things properly. The questions we asked when we went were what is the best chemotherapy combination for this particular cancer and is it available (some chemos are not available on the NHS but your medical team can try and put a case forward for you if they think it is viable), is radiotherapy an option at some point (which it was for Kevin at a later stage), could chemotherapy make the tumor become operable, ie in Kevin's case at the time of diagnosis, the tumor was only in the pancreas but it was inoperable because it was wrapped around a main vein, it was always our hope that the chemo would shrink the tumor away from the main vein and thus become operable, which does happen in some cases but sadly didn't happen for Kevin. We also got a surgeon's opinion on whether the tumor was operable which our Oncologist recommended we do because he said it was his and his team's opinion that it wasn't operable but he would prefer to have that confirmed, or otherwise, by a surgeon. Again, sadly, the surgeon confirmed that the Oncologist was correct. I'm not sure what else to suggest you ask. I know it is easy for me to say this but, if you can stay positive and feel that you are being pro active with regard to asking questions and understanding the treatment, it may help you to keep going - I only say this because that was certainly a big part of it for Kevin (and for me) that we felt a little bit in control of treatment options etc, albeit they are limited with this type of cancer. I hope that your appointment goes well on the 19th and that there is some treatment available for you. Maggie xx
The other thing you may like to consider is getting in touch with EUROPAC to see if there are any trials/options available to you given that your brother passed from this disease. EUROPAC are the leading study into genetic pancreatic cancer and it may be worth asking if they have any options open to you. Maggie xx
What a brave man your husband was. My dad passed away on the 12th December this year of the same disease. We only had 3 and a half weeks passed diagnosis. We are now making fundraisers to raise awareness to keep ourselves busy xx
Thanks for your kind words Rachel, my husband was a very brave man and we are so proud of him, he has left us with lots of lasting memories. I am so very sorry that you only had 3 and a half weeks post diagnosis with your dad, that is very very sad. Good look with the fundraising, we need to raise as much awareness of this dreadful cancer as we can. Best wishes to you all xx
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