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sandraW
Posts: 1028
Joined: Thu Oct 31, 2013 5:38 pm

Re: How long to get definite diagnosis

Postby sandraW » Sat Aug 02, 2014 5:06 pm

Hi Fiona,
I have just read your post on Wacky's.....What Next thread, please don't feel you can't post because you are feeling down, that's what the forum is for we are all here to support each other through the good times, but especially the not so good times.
Everyone is different, Wacky deals with it by being light hearted, but I am sure she didn't
feel like that when her "beloved" was being rushed to hospital.
What you are going through is truly terrible I am lucky at the moment, my husband is well but we all know what will happen in the end, this awful disease will win. So please feel free to post all your worries and woes, on here, I know sometimes it might seem that people don't respond, but a lot depends on whose around at the time, and their own experiences, but people do read and feel for you I am sure. take care sandrax
PS it must be even more difficult for you being so busy at work, and feeling so torn, is it possible you could ask for some time off until you get your head round things, I am not sure if finances are a problem, but there is some help out there, not much, but it does help. x

wackywacky
Posts: 99
Joined: Thu May 01, 2014 9:25 am

Re: How long to get definite diagnosis

Postby wackywacky » Sat Aug 02, 2014 6:59 pm

Hi again Fiona, sandraw is correct every body deals with this different and no I dident feel light hearted in that ambulance I was shouting at him but funny thing over that he never heard me only heard paramedic (never hears me any way when telling him off lol) everybody is thinking about you and your other half its hard but we will all do the best we can x

Bowie
Posts: 115
Joined: Sat May 03, 2014 9:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Sun Aug 03, 2014 11:28 am

Dear Sandra and Wacky, thank you so much for replying and your thoughts. I'm really happy that things are going well for your husband at the moment Sandra, long may it continue. Wacky, you've made me feel better again, but it's so hard. I'm reluctant to take time off work yet, because I'm waiting for when it may become more vital, however, maybe I need to re-think. At the moment I drive James to chemo one day a week and he makes his own arrangements on the other day, plus I go along to the oncologist appointments and make up time by working later, I can do some of my work from home, so guess that is lucky. We used to have a cleaner, but now with James' sleeping and loo requirements I have cancelled and do it all. Also he used to look after the grandchildren, since he retired part-time and It's one of the main pleasures we have got left, but it's too much on his own, so I need to be around for that too, at least it's the summer holidays, so no more school runs until September.

Last night we went out for a meal, which was great that he was feeling well enough, but then he had really bad diarrhoea that lasted most of the night. I'm sure he didn't take enough crean, only 10 with dinner and pud, although he's been taking 10/11 previously with one course meals and it was full of fat, loads of meat and dairy that he usually only has in moderation. The trouble is if I try and tell him, he gets really irritated, not like the old James, where he was always so calm and laid back. I have to bite my tongue and then if I get upset, I try not to , James does too. He has also lost his hair and now his eyebrows and lashes are falling out. We are just hoping that he next scan later this month, third one and only one since chemo started shows a reduction in his secondaries, otherwise I'm afraid he will want to stop.

Anyway boosted by your comments and thoughts I'm going to try and do my best to have a happier day.

Thinking of everyone else with this terrible disease.

Fiona X

Bowie
Posts: 115
Joined: Sat May 03, 2014 9:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Tue Aug 19, 2014 10:49 pm

James has now had 2 cycles of chemo gem and abraxane and coping, but only just. The thought of another 10 is getting him down. Trying to carrying on with life and enjoy it as much as and as often as possible, but he is mostly so very tired. Last night he got severe pain in his right shoulder and was feeling dizzy and generally unwell, still not great today, but just advised by hospital to take over the counter pain killers. We see the oncologist tomorrow and get results from latest scan, very scared.

Thinking of everyone facing this evil cruel disease. Fiona X

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 12:53 pm

Re: How long to get definite diagnosis

Postby Birchen » Wed Aug 20, 2014 4:58 pm

Hello Fiona
My husband also had dreadful pain in his shoulder but his oncologist increased his steroid tablets which did the trick. He increased them until he felt better and then put them down again but whenever he had the shoulder pain he was told to increase them. This definitely worked for him. Hope this is of help as normal pain killers just did nothing at all. Take care Lyn x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 7:29 am

Re: How long to get definite diagnosis

Postby nikkis » Thu Aug 21, 2014 4:15 pm

Hi Fiona,
Paul did find the regime got easier after the first few, but the first few days after are still tough.They did half his abraxane dose which really helped and doesn't seem to have had any adverse effects.
Hope the scan results were ok,
Nikki

Bowie
Posts: 115
Joined: Sat May 03, 2014 9:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Thu Aug 21, 2014 6:05 pm

Lyn, thanks, do you know what caused the shoulder pain.

Nikki, thanks and hopefully James will find it gets a bit easier too. His scan results weren't reported, however, the oncologist got the actual scans up on his computer and said that there was no change and it was stable. We were both a bit disappointed, but he did say after only 5 treatments, 2 cycles, but 1 was treatment in second cycle cancelled due to low white cells this was a really good result. So this has given James a much needed boost and apart from his latest shoulder pain he's feeling better today.

Fiona

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 7:29 am

Re: How long to get definite diagnosis

Postby nikkis » Thu Aug 21, 2014 6:33 pm

Hi Fiona,
No change is really, really good news. I saw someone on the American site who had gemcitabine and is still here 4 1/2 years later with no changes! Paul finds the chemo easier to bear when he knows it is doing its job. Thank you for your lovely comments about my daughter too.
Take care,
Nikki

Bowie
Posts: 115
Joined: Sat May 03, 2014 9:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Mon Sep 08, 2014 11:33 pm

Hi, all things still not good, in fact getting worse. James has just finished cycle three, 2 days per week for 3 weeks and then 1 week off, abraxane and gemcitabine. Main side affects diarrhoea and extreme tiredness. Diarrhoea was getting a bit better, but this week-end it's been really bad and he has lost more weight. I know there are good things in that at the last scan there was no change and he still, apart from a little shoulder pain the other week which is now better, hasn't really had any pain, but it is so hard to see the change in him. He is struggling with his moods, really good when he takes steroids, but the hospital have said these should only be taken on treatment days. I'm trying to persuade him to get some from his GP, or allow me to ring for him, as at least then he has some semblance of 'normal' life.

Still no luck with his blue badge, although after advice here, I persevered and finally got the Oncologist to write him a letter, which I've now sent to the local authority, but I won't hold my breath. On the week-end he was supposed to start self injecting again, only after we kept asking and suggesting this, as his blood count was continuing to drop. The oncology nurses are all very nice, but are limited in what they can do and it is difficult to get through to the oncologists, again very good, but not very accessible. Anyway, the injections weren't ready so the hospital agreed to send them to the local chemist for collection Saturday. The chemist denied having them and the emergency oncology number on Saturday tea-time, was just an answer service. James left his number and nobody replied. He rang again Sunday morning and then they couldn't access his notes over the week-end and we couldn't reach anyone in the hospital so he didn't get any. Today after another round of frustrating phone calls it turns out that they were at the chemist all the time. I am so angry that our precious time is being wasted chasing inefficient and incompetent practitioners whose paid job it is to help. I am so angry that we have to challenge and push and chase, when I naively thought that a serious diagnosis like this would mean we were given help and proper care. We still don't have a liaison nurse and after James' experience with the first one, doesn't want anyone else who is going patronise and not offer any practical or real help, just talking about a dying plan, which he is not ready to do, anytime yet.
Anyway it's a really bad time just now and I'm going to sleep in the spare room tonight so I don't disturb James and will try and put on my happy face in the morning.

Fiona X

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: How long to get definite diagnosis

Postby Didge » Tue Sep 09, 2014 7:17 am

Sorry to hear you're struggling. PIP payments are a formality for people with PC and so is a blue badge if PIP is awarded, which it will be. Thinking of you and hoping today brings better things. x

Bowie
Posts: 115
Joined: Sat May 03, 2014 9:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Tue Sep 09, 2014 7:39 am

Didge, thank you, but I understand from DWP that because James is over the state pension age, he doesn't get mobility allowance and is isn't able to claim. He does get state 'old age pension' and what would really help is a blue badge, so that he cN get out and about a bit more. We live in a village without a daily bus service and he really misses his independence, but struggled to walk far as he is so very tired and under weight.

I've had so many frustrating calls with agencies as our McMillan nurse works part-time and is unwilling to help, in a similar way that she hasn't been able to chase appointments as she says she can't contact different hospitals and had little experience of Creon and initially suggested when they weren't working that James tried to go without any!

However, I'm feeling a bit better today, last night was a low point, but after some sleep I'm going to see how James is when he wakes up, try and persuade him to eat and then I've got to go into work for a few hours. I think the worse part, apart from the actual disease is having no faith in the support system and having to constantly identify what James needs and then push for it. Nothing seems to be offered and I have no idea how a more vulnerable person on their own would cope. When I have some time I plan to write to the health minister with our experiences, because I'm sure that unless people face something like this terrible disease they have no idea how lacking the system and wider care package is at the point of need. Fiona X

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 7:29 am

Re: How long to get definite diagnosis

Postby nikkis » Tue Sep 09, 2014 10:48 am

Glad to hear you are feeling better this morning Fiona, this constant fighting to get what we need to make our lives a little easier is so hard, but you come across as still very strong, keep it up and keep the jobs-worth on their toes!
Nikki

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: How long to get definite diagnosis

Postby Didge » Tue Sep 09, 2014 6:21 pm

Oh, I didn't realise he was over pension age, Fiona. But you should still be able to get the blue badge fast tracked because he has a terminal illness. He doctor can write a letter confirming this. At the parliamentary debate last night, support for people who are terminally ill was one of the many aspects discussed which needs improvement for PC sufferers. I do hope you get it sorted asap.

janem
Posts: 29
Joined: Fri Nov 01, 2013 10:45 pm

Re: How long to get definite diagnosis

Postby janem » Tue Sep 09, 2014 6:29 pm

I don't comment on here often now but I just wanted to say that my dad was above pension age and he got attendance allowance which is for the over 65's and a blue badge. I hope you will be able to get this. The McMillan nurses I think sorted it out for him, if not it was the district nurses working at the local hospice. Sorry I'm a bit vague but it was a while ago we sorted it out. good luck

sandraW
Posts: 1028
Joined: Thu Oct 31, 2013 5:38 pm

Re: How long to get definite diagnosis

Postby sandraW » Tue Sep 09, 2014 8:12 pm

Fiona, The Macmillan centre at our local cancer unit, helped Trevor to get his blue badge as Didge says its automatic with PC, as life expectancy is so limited. We were also awarded Attendance Allowance again as an automatic right which is £81 per week. Like James Trevor is over 65 so we too are not entitled to any form of mobility allowance which I think is totally unfair. I don't know your financial situation, but if people on state pension are entitled to any form of pension credit then there is also a carers allowance available of about £33 per week which not many people seem to know about, hope this helps you to get things sorted asap take care sandrax