Janey1966 Posted March 9, 2015 Posted March 9, 2015 My Dad was diagnosed with pancreatic cancer last year. Not sure of the exact date but it did come as a shock to the family. Dad has never been a big eater so the fact he could only eat certain foods did not worry Mum too much. 'I can't get it down' was the main comment Mum would receive if there was deemed to be too much food on Dad's plate. On top of all this (he is 77, his 78th birthday will be on the 20th March) he has claudication in his legs, culminating in the amputation of his left leg on 13th February 2015. The week before admission was an absolute nightmare and I would not wish Dad's pain on my worst enemy.To say my Dad has been through a lot lately is a massive understatement. It is bad enough that he has advanced pancreatic cancer (his weight is now down to 10 stone 6 pounds but we know that will decrease further) but to have the leg amputation on top of all that is unbelievable, really. I am amazed at how well he is coping.Currently, he is in an NHS run Assessment and Rehabilitation Centre (ARC) in Blackpool, where he lives. The staff there are amazing and kind-hearted. Dad is loving his own room with a telly on the wall. He hated those swingy things on the hospital ward, even moreso that it wasn't free, so to be able to watch free telly (albeit with no ceefax) is great for him, especially the horse racing on Channel 4, a passion of his. He only puts pennies on (well he did until he fell ill) but the act of picking the horses is his hobby and has been for years. Everyone who knows my Dad realises this fact and a friend of his goes to see him nearly every day discussing all things horse related.The acute ward he was in at the start of all his leg/bowel treatment (Blackpool Victoria Hospital) was a nightmare and Mum has lost count of the times she has had to ring up the Nurse Practioner in charge of his care regarding basic stuff like staff giving Dad a wash and shave. Dad is very particular about his appearance and it was heartbreaking to see him look deshevelled and unshaven at the start of his 'care.' He now does it all himself at the sink in his room at the ARC but the push-in plug is a waste of time as the water seeps through whether it is de-pressed or not! Little things like that really annoy him!I would say the biggest improvement in Dad's care has been the fact that the staff in the ARC actually LISTEN to what he is telling them, especially when it comes to food. The other day he had battered fish, chips and peas but only wanted 6 chips and 6 peas. Staff duly obliged and Dad was well impressed.Occupational Health are supposed to be strengthening his upper body in order for him to be released from the ARC, so he can come home. Unfortunately, his upper body will be weakening by the day as he has not had any chemotherapy since 30th January, the day I visited him and Mum at home. I live in Carlisle you see but I spent the whole of February and early March in Blackpool, supporting both my Dad and Mum, who I worry about being on her own at home. She has no internet so cannot access forums such as this but I might tell her to ring the number at some point, although I will be back with her in a couple of weeks.Dad's stump is healing nicely but the next Oncology appointment with the Consultant is not until the 30th March. It has been suggested by staff at the ARC that Mum should get onto them to try and get this brought forward, as the appointment has nothing to do with having a chemotherapy session. That comes later.I feel so sorry for my Dad. He must have thought that, once the leg had been removed, he would soon be able to have some chemo. None of us are under any illusions that he will survive the cancer. We know he won't but for heaven's sake, what's the point of him going through surgery and subsequent rehabilitation if there is no chemo at the end of it to keep his suffering to a minimum?
Didge Posted March 9, 2015 Posted March 9, 2015 If your dad has had recent surgery I would imagine there would be a 6 week wait for healing to take place before more chemo. That is what happens when cases are operable. Maybe if your dad's stump is healing well he can start earlier. I do hope he gets on well and enjoys Cheltenham which starts tomorrow. The highlight of the racing year for most!
J_T Posted March 9, 2015 Posted March 9, 2015 Hi Janey and welcome to the forum. Thanks for sharing your dad's story and what a tale it ishowever you seem very on the ball and glad the hospital are now listening to your dad's want and needs. It must be very frustrating not to be able to get going with the chemo but blimey, after a leg amputation that is a tough one!Good luck going forward with your dad's treatment and care. Do keep posting.Best wishesJulia x
Sueoliver Posted March 9, 2015 Posted March 9, 2015 Oh my goodness as if PC isn't bad enough! You sound as if your doing a wonderful job supporting him and the hospital are obviously helping. I hope his leg heals quickly and he can continue with treatment. Please post on here if you need too there are some wonderful people with lots of experience. Take Care Sue x
sandraW Posted March 10, 2015 Posted March 10, 2015 Hi Janey, welcome to the forum, where I am sure you will get lots of help and support.Your poor dad really has been through the mill. As Didge says, I think it is usual to wait 6 weeks after surgery to make sure of healing before seeing an oncologist, regarding more treatment, so that would make the appointment for the 30th March, about right. I know the wait is awful because you have this image of everything growing, we are in that position ourselves at the moment waiting for a scan. but I think the healing first, is, very important.I hope your dad continues to improve, and gets back on his treatment too, please let us know how he gets on, take care sandrax
Janey1966 Posted March 11, 2015 Author Posted March 11, 2015 Didge wrote:> If your dad has had recent surgery I would imagine there would be a 6 week> wait for healing to take place before more chemo. That is what happens> when cases are operable. Maybe if your dad's stump is healing well he can> start earlier. I do hope he gets on well and enjoys Cheltenham which> starts tomorrow. The highlight of the racing year for most!Funnily enough, Dad doesn't 'do' Cheltenham but he still enjoys watching it. He says he can't find winners in the general meetings so he's 'no chance' with Cheltenham! The latest with Dad at the ARC is that he is to be witnessed washing and dressing himself, see how well he does. When me and Mum have seen him he's always looked smart (especially since leaving the horrendous hospital) but we don't know what's going on beyond that so it will be interesting for Mum to find out about this when she is up at the ARC again today.
Janey1966 Posted March 11, 2015 Author Posted March 11, 2015 Sueoliver wrote:> Oh my goodness as if PC isn't bad enough! You sound as if your doing a> wonderful job supporting him and the hospital are obviously helping. > I hope his leg heals quickly and he can continue with treatment. > Please post on here if you need too there are some wonderful people with> lots of experience. Take Care Sue xThanks very much and I'm sorry Dad's story took a while to read. I just had to get if off my chest, as you will probably have figured out. It's a shame Mum isn't on the internet (I tried over Christmas but she wasn't confident on a laptop at all) but at least the telephone number is there for her to use whenever she feels like it. Is it free by any chance? She does have BT Anytime calls which have been a godsend but I know they don't cover numbers such as the one shown on here.
Janey1966 Posted March 11, 2015 Author Posted March 11, 2015 sandraW wrote:> Hi Janey, welcome to the forum, where I am sure you will get lots of help> and support.> Your poor dad really has been through the mill. As Didge says, I think it> is usual to wait 6 weeks after surgery to make sure of healing before> seeing an oncologist, regarding more treatment, so that would make the> appointment for the 30th March, about right. I know the wait is awful> because you have this image of everything growing, we are in that position> ourselves at the moment waiting for a scan. but I think the healing first,> is, very important.> I hope your dad continues to improve, and gets back on his treatment too,> please let us know how he gets on, take care sandraxMany thanks for clarifying the wait as regards the Oncologist appointment. No doubt Mum will ring me later and I shall tell her the information you have given me regarding the 6 week wait beyond surgery. I only hope it can be brought forward as - like you rightly said - we have 'images' of the cancer spreading. In actual fact, since Dad has started chemotherapy, the last scan showed the cancer hadn't spread further but his weight loss is starting to worry everybody now. Is this a sign the cancer is spreading or something else? Don't worry about being totally honest with me, I can take it. It's a pity that lot in the hospital haven't been more forthcoming as they still refer to the cancer as a 'mass' which is very annoying.
Janey1966 Posted March 11, 2015 Author Posted March 11, 2015 J_T wrote:> Hi Janey and welcome to the forum. Thanks for sharing your dad's story and> what a tale it is> > however you seem very on the ball and glad the hospital are now listening> to your dad's want and needs. It must be very frustrating not to be able> to get going with the chemo but blimey, after a leg amputation that is a> tough one!> > Good luck going forward with your dad's treatment and care. Do keep> posting.> > Best wishes> Julia xMany thanks for your reply and yes, we are on the ball as regards Dad's situation. I often wonder how people who live on their own cope with being prodded, poked and not really spoken to properly (or listened to, more to the point) but at least Mum has loads of telephone numbers in her little book to ring, if she's not happy with something. There are two ladies in particular (one is the Nurse Practitioner) who have been brilliant and chase things up. I reckon the biggest gripe with us is the constant changes in personnel, moreso at the hospital than at the ARC. You speak to one person, they 'promise' to pass it on to the daytime Sister, then you find she's a different person to the one seen the previous day. Dad reckons he's seen at least 200 nursing staff since he was admitted into hospital. No continuity at all and I think that needs to change. People have to stop joining the nursing profession as a means of earning money; it is no longer a vocation in my view. Mum told me that they don't have to pay Graduate Fees which does not help. OK, rant over!
Guest Posted March 11, 2015 Posted March 11, 2015 Hi Janey, Sorry to hear about your Dad. My Dad was diagnosed last February at stage 4. Your poor dad, it is so upsetting to read. But how brave and amazing your dad must be, to go through all that and still be able to make 'light' of a few things. The way you talk about your Dad, and his comments with the hospital and nurses, made me smile, reminded me of my Dad. Especially talking about horse racing. My dad says it is the only pleasure he has left. I see you have been given some great advice here already. It is what makes this forum very special. I send you all best wishes, and I really hope your dad gets home as soon as possible and that chemo can start soon for him as well.Leila xx
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