Loubylou Posted October 30, 2013 Share Posted October 30, 2013 start of a really long journey with too many unanswered questions. Dad (70) been booked for surgery in West Midlands to remove his cancer. As he's a widower I didn't think twice when suggesting that he convalesce with us afterwards. Now I'm getting nervous that I won't be fully prepared to meet his needs psychological or medical. Can anyone share a view on what post surgery recovery looks like please? Should I be taking time off work? Talking to District nurses? Feel very anxious as well as all the other emotions that come with the news of pancreatic cancer in a much loved one. Link to comment Share on other sites More sharing options...
Thriae Posted October 30, 2013 Share Posted October 30, 2013 HelloI'm afraid I don't have experience of surgery or post operative care as my dad was diagnosed too late, so I'm sure you will gain benefit from someone wiser on the subject shortly.However, I do know that care of PC patients is draining, there is no two ways about that. One does indeed have emotional and physical needs to meet as well as needing to assist with administering drugs and keeping on top of pain relief.I'd say as the sole carer it is a full time job, but it depends on a lot of factors such as recovery rate and general wellness of the patient! Possibly even their age...That said, you can obtain great support from district and Macmillan nursing teams.I'd be inclined to chat this through with a Macmillan nurse. Whether you provided the majority of your dad's after care or just a portion of it. The personal touch that family provides will be invaluable I'm sure. Link to comment Share on other sites More sharing options...
Tolliedee Posted October 30, 2013 Share Posted October 30, 2013 May I ask what surgery your dad is having? My husband is 7weeks post Whipples and I can certainly tell you our experience post operatively but not sure that is what you're referring to...WarmlyCx Link to comment Share on other sites More sharing options...
Loubylou Posted October 31, 2013 Author Share Posted October 31, 2013 Thanks for people's kindness in taking the time to reply. We see the consultant on Friday so maybe then he'll tell us the details around type of procedure. Maybe more answers will help us even more. Fingers crossed for now that he agrees with the liver specialist who said that it is operable. Link to comment Share on other sites More sharing options...
PCUK Nurse Dianne Posted October 31, 2013 Share Posted October 31, 2013 Hi Loubylou,Great news that your father is able to proceed with surgery. Please feel free to contact us on the support line (020 3535 7099 or support@pancreaticcancer.org.uk) as we may be able to help you with some tips. Also we have some booklets that may be helpful in knowing what to expect and some of the normal questions that most people will ask.I am sure you will find that your father should not be discharged from hospital until he is mobile, tolerating food and drinks (albeit perhaps not in huge amounts) and other bodily functions (!!) working normally. We can advise you about some nutritional tips, the use of pancreatic enzymes and some other 'post operative' issues.Kind regards,DianneSupport nurse Link to comment Share on other sites More sharing options...
Loubylou Posted November 4, 2013 Author Share Posted November 4, 2013 Well our roller coaster journey continues with dad and the hospital. After our visit for final news and next steps we have now been told that he has IPMN. Whilst this seems to have a positive prognosis for the long term we are now aware that he will be having his spleen and pancreas totally removed. If anyone has undergone same as a carer I would welcome advice for managing the life changes it will bring for him. We are told that it is rare but perhaps someone reading this might be able to share? Link to comment Share on other sites More sharing options...
nikkis Posted November 5, 2013 Share Posted November 5, 2013 Hi,My husband has a different diagnosis, but the same op. It is really tough post surgery, but everyone is different, so until you are there, you won't really know what help your Dad will need. It is life changing, as your Dad will be diabetic (as they are taking out his pancreas)and need to take creon with all his food. It can be tricky just remembering what he will need to take and when to start with. It is so fantastic that he has a good prognosis and even more fantastic that you have offered to have him to stay with you afterwards. My husband often says that the hardest thing would be to go through this on your own. Ask lots of questions, and make sure that you know who to contact if there is anything you are worried about. Generally there is a good support network of professionals out there, so don't be afraid to let them know if you are struggling, and obviously as worries come up you can get in touch with the nurses on this site and post a specific question. Hope all goes well with the op. My husband was only 49 when he had his, but he was very jealous of a man in his seventies who went home the week before him after the same op!Nikki Link to comment Share on other sites More sharing options...
Tolliedee Posted November 5, 2013 Share Posted November 5, 2013 My husband has IPMN also and had the surgery on the 6th Sept. We have had a huge amount of support from specialist nurses, dieticians, diabetic nurses, surgeon, GP and all the team at the hospital. It was spelt out to us what was going to happen, what a huge surgery this was and yet, for some reason, we were taken by suprise. The specialist nurses on this forum are excellent and talked me gently through the concerns I had. These seem to be concerns that affect lots going through this and so I don't feel quite so anxious now.The key seems to be that everyone is individual and you will need to find the combination of insulin, enzymes, nutrition that are particular to you(your Dad) I found it confusing and frustrating but this forum is great for support and as soon as I voiced my fears Jenni was there with patience and a whole bunch of really helpful practical suggestions.This last week we seem to be getting the levels right and we are feeling a bit more 'in control'.... You will get a lot of support but never be afraid to ask for more!Warm wishesTollie Link to comment Share on other sites More sharing options...
Cathy Posted November 6, 2013 Share Posted November 6, 2013 Hi LoubylouI can't offer any experience I'm afraid but all the very best for the surgery.Take care both Cathy x Link to comment Share on other sites More sharing options...
Thriae Posted November 6, 2013 Share Posted November 6, 2013 Although not a diagnosis anyone would wish for I'm glad to read your post and see you have hopeful news.Best wishes for a successful op for your dad and post operative recovery. Link to comment Share on other sites More sharing options...
Loubylou Posted December 9, 2013 Author Share Posted December 9, 2013 Don't know whether to scream or cry tonight. After gearing ourselves up for dads big op today and then waiting for 8 hours he was then told that no bed was available and he was to go home We have no idea as to when his op will be re-scheduled for and his pain/discomfort is getting markedly worse. I suppose it's a bit like estimating the length of a piece of string when enquiring how long a wait might be and I know that other people need ITU beds too, it just feels a cruel end to the day after such an emotional journey to this point. My only hope is that this setback doesn't dampen his spirits. Link to comment Share on other sites More sharing options...
J_T Posted December 9, 2013 Share Posted December 9, 2013 No wonder you're frustrated!I would keep nagging them, become a damned nuisance. Time is everything for pc patients. This is really not acceptable, not one bit!Hope you get a new appointment asap.Julia x Link to comment Share on other sites More sharing options...
marie souter Posted December 9, 2013 Share Posted December 9, 2013 OMG,Totally agree with Julia..so unacceptable with a clock ticking away PC side effects are horrible .. this needs sorting now .. you must be all beyond gutted .. I just hope they hurry the hell up....I couldn't help with the post op info as my mom was diagnosed at stage 4 .. BUT I can say from experience as a sole carer .. it is a full time job at later stages .... thankfully your dad is not there ... I had a similar experience with my dad when he had a heart problem .. twice they rescheduled after giving him a pre-med his 3rd opportunity at an op went ahead as scheduled but its so frustrating so worrying and so disapointing .... when he has his op tho rest assured help will come when you need it .. the district nurses are great, all lovely and friendly ..hope you hear soonLove and hugzMarie xx Link to comment Share on other sites More sharing options...
Loubylou Posted January 16, 2014 Author Share Posted January 16, 2014 So a month after the cancellation dad has now finally had his op. Things changed mid surgery and he ended up having a whipple procedure. I'm amazed at his recovery although he is now in continuous lower back pain. We are all at a loss as to why but quite frankly are counting our blessings that dad has been given a second chance. I only wish the same could be true for all the lovely people on this forum. Link to comment Share on other sites More sharing options...
nikkis Posted January 16, 2014 Share Posted January 16, 2014 Hi,so glad to hear your Dad has had his op and it all went well. My husband had back pain post surgery, and this did get better.Nikki Link to comment Share on other sites More sharing options...
Loubylou Posted January 19, 2014 Author Share Posted January 19, 2014 Thanks for your reply Nikki.x Link to comment Share on other sites More sharing options...
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