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

Re: How long to get definite diagnosis

Postby Bowie » Mon May 12, 2014 10:28 pm

Hi Didge, yes I can understand how it is worse if you're not together and I completely understand re not being able to concentrate on other stuff. I had taken some time off work initially as I expected James would have loads of appointments, but as nothing much is happening am gradually going back and anyway he is so busy working and DIY-ing that I don't get to see him that much. I'm trying like you to be glad about each day, but I am struggling and finding it so hard not to look at stuff on the website and get depressed.

Fiona X

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Tue May 13, 2014 7:22 am

It is hard to not Google things. I'm still doing it and it breaks my heart to, but I feel I want to know everything.

It is good to go back to work. How are work with you? You will need time off for appointments, so I think it is best to be there now and they will try to be better with you when appointments come along.

x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: How long to get definite diagnosis

Postby jay » Tue May 13, 2014 4:29 pm

Just want to send a massive cyber hug Fiona. My husband was diagnosed 7 months ago and it still feels like im in a bad dream.
x

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

Re: How long to get definite diagnosis

Postby Bowie » Tue May 20, 2014 8:42 pm

Fiji, hi work is quite good. I have a degree of flexibility in that I can generally work the hours to suit providing I get the work done, so that's a blessing. I had initially thought about retiring I'm 58 and could take my pension early, but James is adamant that I should not be too hasty in case things turn out badly and I may need work for many more reasons than money and getting a new job after 55 etc.

Thanks Jay, I still can't believe this is happening, except for diarrhoea and weight loss he is well and looking great with a little sun tan after the bank holiday weather.

I'm trying to live in the present and enjoy normal day to day living, without too many plans, but feel totally inadequate when I realise how much better everyone else seems to be coping. I want to wake up and all of this to be over, but know it can't

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

Re: How long to get definite diagnosis

Postby Didge » Tue May 20, 2014 9:10 pm

I don't know about everyone else coping better! I'm not coping at all right now. There are times which are better and times which are worse and I expect that is the same for all of us. Don't expect too much of yourself. It is really hard to cope sometimes and that is understood. I can offer all sorts of advice like taking each day at a time and living for the moment, not looking ahead and just enjoy the moment. I can also tell you that it is often very hard to take my own advice! I'd like to think like that but often my mind just won't play ball.

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

Re: How long to get definite diagnosis

Postby sandraW » Tue May 20, 2014 11:27 pm

Hi Fiona, don't think we cope, we just pretend we do, we were told yesterday that Trevor's tumours have shrunk but because we never saw our consultant, we didn't find out by how much, so when I should be feeling cautiously optimistic, I am worrying that perhaps he should still be having treatment, are the tumours still growing, over and over round and round. Meanwhile Trevor is busy getting on with life and all our friends and family are over the moon with the news, I know exactly how you are feeling, but we justhave to be so thankful we still have our men so many lovely ladies on here have lost their's and yet they still post on here offering us their support. take care sandrax

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: How long to get definite diagnosis

Postby PCUK Nurse Jeni » Wed May 21, 2014 9:06 am

Bowie wrote:


> Thanks Jay, I still can't believe this is happening, except for diarrhoea
> and weight loss he is well and looking great with a little sun tan after
> the bank holiday weather.


Hi Bowie,

Is James on pancreatic enzyme replacements, such as creon? This might account for the diarrhoea and weight loss if he is not. If not, then feel free to drop us an email to support@pancreaticcancer.org.uk, and we can explain it to you.

Kind regards,

Jeni, Support Team.

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

Re: How long to get definite diagnosis

Postby Didge » Wed May 21, 2014 9:12 am

Sandra, I know how you feel. My man was not able to have even half his chemo and even though he is officially cancer free for the moment, I am just waiting for it to come back instead of enjoying this time. I can't seem to get out of this frame of mind. I can't remember the exact quote but I remember Graham Greene saying something along the lines of "I can cope with despair but not hope". I think hope is sometimes a very hard emotion to deal with!

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

Re: How long to get definite diagnosis

Postby Bowie » Thu Jun 26, 2014 10:26 pm

Well finally James started treatment today, it has been 13 weeks to the day since his initial diagnosis. He had a PICC line fitted on Tuesday, all seemed OK and quite comfortable and then today chemo, which will be followed by another session tomorrow and then will continue twice a week for 3 weeks with a week off. Bad news is that he has lost even more weight, only 10 stone 10 from 12 stone when diarrhoea started in January. Still waiting for the report from his latest CT scan which was done a week ago last Monday, but the oncologist, althought not an expert, didn't think there had been much growth from the film, just a bit in the mets. Still no pain, which is a real blessing and diarrhoea more or less under control, thanks to Jeni's advice, but both anxious about what next.

At the moment he seems OK, even popped out to our local for a soda and lime too worried to have a real drink, but his hands started tingling holding the glass, I've now told him about others' experiences that I've picked up from this site. He managed to eat a light dinner, but I can't stop asking him if he's OK. We are both quite worried about passing chemo on, as well as avoiding alcohol and getting an infection after our introduction talk at the oncology unit, ie chemo will come out in any body fluids etc and could be transferred to others. We plan to use separate loos and James is really worried about the grandchildren, but I plan to hold him all night or a least until he pushes me away. He was also told today that he could be on chemo indefinely if it works, which was a bit of shock as we thought it was six months and then just watch and see. We have also been advised not to fly with a PICC, which as we had a holiday in Majorca booked next month, is a bit of a blow.

Anyway still feeling scared and know that this is life changing and not in a good way, but hoping the side affects aren't too bad and importantly that it works.

Fiona X

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: How long to get definite diagnosis

Postby Slewis7313 » Thu Jun 26, 2014 11:46 pm

Hi Fiona, good to see that the chemo has started. I too have a PICC line which is much more comfortable than normal IV, which with me last year was the dreaded 'find the vein' challenge. What regime is he on....Folfirinox, Gemcitabine, Capecitabine?

We are all aware of the toxicity of chemotherapy, but I have never been advised not to cuddle or hug people. I know it may be passed on through body fluids, but my understanding is that this only really applies to having sex, where a condom is advised. I had my 60th Birthday earlier this week and cuddled more people in one day than I can remember. We also only have one loo at home, which again we all use. My understanding may be flawed, but having to avoid intimacy (hugs) with family members and friends for me would be a big blow. Perhaps Jeni or Di could advise if precautions suggested to you both are possibly a little OTT.

I hope the chemo kicks in soon and that it will, in combination with the Creons, start to put the pounds back on.

Good luck to you both.

Steve
X

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

Re: How long to get definite diagnosis

Postby nikkis » Fri Jun 27, 2014 7:45 am

Hi Fiona,
Just wanted to agree with what Steve has said, I believe the advice is the only risk of harm to others from the chemo is through sex, and I believe this is only a few days post treatment. If you go on the Macmillan website and look up the chemo James is on it will tell you what precautions you should take. If you think about it, they don't have separate toilets in hospital for those having chemo,which they would if there was a risk.
As far as flying with a PICC, there are a number of people here who have with no problems, and we are hoping to fly in a couple of weeks and Paul's consultant is happy for him to with a PICC. Probably worth having a chat to Jeni or Diane about it. Presume they are worried about a clot, but some people with PC are routinely on clexane injections to prevent this.The tricky thing is insurance when you are on chemo, so worth checking that you are covered.
Hope the side effects aren't too bad, and you have some good days when you can relax a little,
Best wishes,
Nikki

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Fri Jun 27, 2014 7:47 am

Steve is right here. I would definitely get a second opinion. Your husband shouldn't have to have the added worry of coming into contact with his family. It is ridiculous. No one ever mentioned anything even similar to this to me. They have seen me kiss my dad and use the toilet after him. Every time I see him I cuddle him, and kiss him ( on the mouth). Your husband really doesn't need this extra pressure and it must be a horrible feeling for him. Wish I could phone the hospital for you and get them to call you and put your mind at ease. This has made me angry. Patients do not need added worries or stress, especially when it is nonsense.

Leila xx

PCUK Nurse Dianne
Posts: 265
Joined: Tue Aug 14, 2012 2:29 pm

Re: How long to get definite diagnosis

Postby PCUK Nurse Dianne » Fri Jun 27, 2014 10:53 am

Hi Fiona (and others who have contributed),

Thanks for the questions. Fiona, as Steve had mentioned initially about the 'lack of contact' and sharing, does sound a little 'odd' and it would be interesting to know what chemotherapy James is having. The precautions about using separate toilets etc usually only involves those patients who have 'radioactive-isotopes' and these are sometimes injected prior to radiotherapy or other investigations to detect cancers, however there is usually a strict instruction with this and patient information leaflet. I would be very surprised if this is being used in his chemotherapy, however happy to understand what chemotherapy James is having at present. Please feel free to either post on the forum or email us (support@pancreaticcancer.org.uk) and I can have a look into the chemotherapy regime that James is undergoing to find our more information for you.

You also mention the PICC line and not being able to fly. The reason for this may be due
to the fact that the PICC line sits within a vein, and if it is not flushed properly, there is a risk that you can get air within the line. This can occur in everyday functioning, and this is why nurses are usually quite strict about flushing the line properly. The 'considered risk' with flying is that we know that the air pressures (called barometric pressure) decreases at higher altitudes (as you will recognise when your ears pop when the plane gains altitude). The concern is that if you have a small air bubble that this will increase with size with the decrease in barometric pressure. Of course patients are often transported by air ie in air ambulance or helicopters and there is a 'science theory' that is used called 'Boyle's law' about air pressures. Basically, in lay terms, it really mans that the PICC line should be flushed properly and ensure there are no air bubbles in it, which should happen on regular practice anyway, and that the 'stopper' on the end of the line is firmly closed. Depending on the time you are away ie would the PICC line need flushing whilst you are away, this may concern the staff. The ways around this would be to ask them to teach you how to flush the line, alternatively if the staff will not teach you, then you could also attend one of the local hopsitals and I am sure they would do this for you.

Feel free to be in touch Fiona if you want to talk over this, and I hope that is helpful and not adding to the confusion.

Regards,

Dianne.
Specialist nurse
Support Team

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: How long to get definite diagnosis

Postby Cathy » Fri Jun 27, 2014 3:20 pm

Hi

Just wanted to add that me and Jonathan flew abroad for 2 weeks last year with his picc line.

I was already flushing the line by then and we took his flush stuff with his and he epxerienced no problem with it whatsoever. We also took a Picc line protector that we bought online so he could go swimming.

Cathy xx

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

Re: How long to get definite diagnosis

Postby Bowie » Mon Jun 30, 2014 9:42 pm

Steve and others thank you very much for the reassurance re contact, I look at this site all the time, but sometimes just feel too low to post. We have tried to get it in perspective and to be as normal as possible, but for James the start of treatment, although good that he has started on his way towards getting rid of it had made him recognise just how serious his situation is and he's a bit down. I also managed to talk with the treatment nurse on Friday and she was a little more reassuring. She also offered to get James' PICC line flushed on the day we are due to fly on holiday and again on our return 8 days later, but now I'm worried about insurance. Has anyone else managed to get cover whilst undergoing chemo?

Anyway James is on Ambraxe on day one and Gemcitabine day two, for up to 12 cycles 3 weeks on and one off. He was well again Friday, but is quite snappy with me although fine with the family and friends when they call around or we're out. I'm trying not to take it personally, as I know it's just because we are so close. Today was our granddaughter's birthday and unfortunately James was quite poorly, it started with diarrhoea and then he slept this afternoon while I had to go to work and when I got back he managed to come out for dinner, but got really cold and shivery and says he feels like he has flu. Is this delayed reaction normal with his last chemo on Friday?

I just read the list re life mel honey and am ordering on line, at least it feels as if I'm doing something.

Best wishes to everyone

Fiona X