How long to get definite diagnosis

[nikkis]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[SusannaUK]

Hi Fiona,

I'm sorry to hear that James is not well. But glad you felt better this morning. How is James now? How was he after he woke up? I hope today was a better day.

Thinking of you!

Susanna x

[Bowie]

Hi, everyone it's been a while since I posted, but have been really busy with PC, family stuff and work. It is 30 weeks tomorrow since James was diagnosed and in that time since starting chemo Abraxane and Gemcitabine, now on 5 th cycle, has done fairly well, but been plagued by diarrhoea. Well, thanks to Leila and her research and advice on SIBO, he is finally better. I read her post and told James, he contacted his GP and after talking with a Gastroenterologist he was duly given antibiotics, without the need for a test, because apparently it's often false negative and he is much better. This has helped him feel better and reduced the weight loss, so a big thank you. In terms of his blood count continuing to be low, again from advice on here, he has asked for regular self-injections, which he self administers for 3 days before each treatment and again it seems to be working. Finally, again after advice on here he is now taking a low dose of steroids every day and his tiredness and mood swings have improved. This week he is busy helping our builders renew skirting and doors, so a big improvement on before. I do worry, however, that all of these things which have helped him enormously are things he has had to ask for and then they are forthcoming, but what if he was too vulnerable and didn't have the help from all of your great people on here? Also, again after help here he has finally got his blue badge parking permit, had to do it himself with no help from Macmillans, but this means he can drive to treatments, do the shopping and generally get out and about without having to worry about parking and walking back carrying stuff etc. his quality of life is much improved. Today he got the results of his latest scan and there is little change, all stable, with a very small shrinkage of one of the secondaries. We are really pleased and hoping to think about a holiday. The oncologist, a different one again, we don't ever seem to see the same one twice, has recommended continuing chemo for as long as it's working and with a possible further reduction of James gets too tired. So lots to think about, but we are hoping to get a holiday booked, again all of you have helped his confidence in thinking about this and the Oncologist has said that providing we stick to Europe we should be fine for insurance etc, just avoid the states.

Sorry I haven't been commenting on others posts, I have been dipping in and a little too emotional sometimes, but have passed on loads of your advice to James and he always asked about quite a few, especially Leila's dad. Thinking of you all and thank you for your help, which has literally been life saving. Fiona X

[Cathy]

Hi Fiona

This is great news!! Well done both of you.

I agree, I often used to think, with my partner, how do people cope who have no-one to advocate for them? It makes me shudder.

Re going on holiday, we had 2 European holidays last year. The first time we went with bog standard travel insurance and took the risk. I checked things like availability of medical assistance and the ease of us getting a flight back early if needs be and obviously had a EHIC card. Wasn't needed. The second time we insured with Insure with who gave us a quote of £84 for us both for a week which included Jnathans PC plus his PC related diabetes, irregular heartbeat... Couldn't believe how cheap it was BUT you need to not be receiving treatment when you travel.

All the very best to you both

Cathy xx

[SusannaUK]

Hi Fiona,

It's great news! It's really good to read that James is doing well and you are thinking of holidays. I hope everything will go well.

All the best to you and James,

Susanna x

[Slewis7313]

Hi Fiona, great to see that James is doing well enough for you to consider a Holiday. It is sad to see that you are having to drive 'the system' to get things done, but good to see the Forum working at it's best to arm you with useful information to get things done. It is an amazing place.

Enjoy your Holidays wherever they may be.

Steve

X

[Guest]

Hi Fiona,

Your post made me cry, so so lovely of you to say. It really does mean so much to me. To know that I helped someone who was suffering, I can't tell you how that feels. Is James still taking the antibiotics or did they work straight away? Thank you both for thinking of my dad, it really means a lot. We all need this forum and the love and hope we can all give.

Leila xx

[nikkis]

Dear Fiona,

Just wanted to say it was good to hear from you the other day. I am always thinking about you and James an wondering how you are. It sounds like you are soldiering on, with very little support, I imagine you are exhausted. Please tell James, Paul wasn't keen on hospice involvement, but they really were about helping us to enjoy living, and letting Paul make his own choices.

Lots of love,

Nikki

[Guest]

Hi Fiona,

Was just wondering how James was?

Hope you are both ok?

Leila xx

[Bowie]

Sorry I haven't posted for ages, it's been really up and down. I did keep peeking in and as more loved ones were lost I didn't have the will to keep reading. Well James is still here, it was 3 years on 24 March, since he was diagnosed with stage 4 PC with mets to lungs and adrenal glands. Then the diarrhoea set it and he continued to lose weight. The Macmillan nurse was worse than useless, if we had listened to her James would have died a long time ago. Luckily Leila on this site saved his life by researching SIBO. James insisted on a referral to a gastroenterologist and has been taking anti-biotics ever since and he did so well. Life was restored, not normal, but pretty good. James has now stopped chemo, after several types, Ambraxane was for him by far the best, in that the outcome lasted longer and with few side affects, however, he is struggling now. He is still at home and does get up each day and we even went out for a meal this week-end, but he is very tired, very swollen and struggles to get about. I guess my main message to everyone is no one actually knows the outcomes and do push and challenge. I know James had a particularly poor experience with a Macmillan nurse, but it does seem that the amount of help on hand is limited and it is down to individuals and their loved ones to look into what could help and then ask for it. James' oncologist and GP have both been brilliant whenever he has asked for anything they have provided it, but he has needed to ask first.

We have a brilliant local hospice, that has been a great support and they are helping us to use James' experiences to help others.

I wish each and everyone and their loved ones affected by this devastating disease much love and that more is down to improve the outcomes for all. Fiona X

[sandraW]

Hi Fiona,

Lovely to hear from you, sorry your news isn't better thought.

This bloody disease is relentless it just keeps on rearing its ugly head, no matter what you throw at it. James has done so well 3 years is amazing, I am glad to hear you are getting some support from the doctor's too, as well as you giving support to others through the hospice.

Its actually 2 years today since I lost Trevor,even though he was only in the hospice for a few days they were amazing, it was just like being at home but with all the support in the background it took all my worry and stress away.

Sending love to you both and remember we are here should you need us take care sandrax xx

[Guest]

Hi Fiona, it's great to hear from you and about your good experience with GP and hospice. We were really lucky with ours too and it makes a huge difference. It must be really hard to know when to suggest treatment and medication especially if the next stage of medication means a lower amount of consciousness, less mobility etc.

I hope the team are able to keep James comfortable and that you are getting the very best support.

Marmalade x

[stepuha]

Dear Fiona, thank you for your update. It is stories like yours that give me hope.

Perhaps you could consider looking into Precision Panc program, recently launched in the UK. They do genetic analysis of the tumor and suggest treatment according to that. It may not necessarily be chemo, if I understood correctly. I understand though that after 3 years James is tired of treatment and may not wish to do anything else. May I ask if James had any breaks in chemo treatments or was it continuous chemo? I think different oncologists have different views and it is difficult to decide on whether I should accept a break if it is offered or fight for continuing treatment.

Many thanks in advance.

With love,

stepuha

[Didge]

Lovely to hear from you, Fiona. Sorry to hear James is not good but glad he is still here. And glad that our lovely Leila was able to help in that process. Those who research tirelessly are so appreciated by others! x