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

Re: How long to get definite diagnosis

Postby nikkis » Tue Jul 01, 2014 6:41 am

Hi Fiona,
Have you checked his temperature? If he feels cold and shivery it might be that he has an infection, so worth checking, and contacting someone. Paul is on the same regime.It made him feel worse when he started in January, but each one now he finds slightly easier.
As far as travel insurance goes, we are covered by an existing policy, so it's worth looking at anything you had before James was diagnosed . The macmilian website has a list of specialist insurance companies that you can try if not, but I know the chemo is the tricky bit.
It's understandable that you both feel low, it is all so life changing, but it does get easier,
Nikki

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

Re: How long to get definite diagnosis

Postby PCUK Nurse Dianne » Tue Jul 01, 2014 10:16 am

HI Fiona,

Great that you have been reassured about the flying, that is good. As for the 'flu like' feelings, this can be common with the Gemcitabine, however if he is cold and shivery as Nikki suggested it is worth taking Jame's temperature. Have the oncology unit given you some information or a guide about this? Usually if the patient is cold and shivery this often indicates a high temperature, this is called a rigor. So if James temperature is 38 degrees or above, you should be in touch with the oncology unit as he may need to be admitted. This usually does respresent an infection and requires urgent attention. I wonder does James have a stent in his bile duct, as this is also often a good site for infection to build up, and would require antibiotics to sort this out.

We have had other people reccomend some insurance companies, one in particular that gives very good rates is 'insurance with', so I think it is 'www.insurancewith.com' if this is helpful for you. If you are struggling with the temperature and what to do, please do feel free to call out support line (020 3535 7099) Fiona, I am here all day so happy to talk on the phone if this would help.

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 » Tue Jul 01, 2014 11:12 am

Hi

Yes, we used Insurance With when we went to Crete last year - £84 for a week (amazing). Unfortunately I don't think they will cover if you are actually HAVING treatment. I think you need to have finished treatment for a little while (worth enquiring though). And I'm not sure what they would quote if you wanted to go outside Europe.

Before I knew about Insurance With we went to Corfu for a fornight earlier last year and just took bog standard travel insurance (to cover for bags and stuff) and risked anything untoward happening. This was a measured risk tho. Jonathan had just completed treatment and was well, we had EHIC cards, there was a good (private) surgery locally and I knew that we could easily get a flight home early if it was needed, which would be far cheaper than medical cover. We were fine.

I think it depends where you want to go. I wouldn't risk doing that outside Europe - certainly not the US (as medical expenses can be extortionate).

Hope this is helpful

Cathy xx

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

Re: How long to get definite diagnosis

Postby Slewis7313 » Tue Jul 01, 2014 11:46 am

Fiona, we went to Cyprus in May. I could get cover, but the price was around £800 for 6 days as I was scheduled for treatment (chemo) directly after the holiday. Again, we checked and knew there were several companies flying daily if we needed to get back quickly. We took the risk and went ahead with standard insurance which would not have covered my Pancreatic Cancer related requirements.

We had no problems, but your decision would need to be based on how James is doing in the lead up to the trip.

Steve
X

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

Re: How long to get definite diagnosis

Postby Bowie » Tue Jul 01, 2014 10:18 pm

Thank you Nikki, Dianne, Cathy and Steve, I did check his temp. and it was OK. He is a bit better today and went out to our local for a wine and soda, so is definitely feeling a bit more upbeat.

Will follow up the insurance leads, we have currently got annual cover, but it does say you have to notify of any change in circumstance and I'm sure this would qualify as a big change. I'm checking out the availability of flights back, it's only Majorca, so a nice short flight and your insurance suggestions. Thanks everyone for your advice.

Fiona X

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

Re: How long to get definite diagnosis

Postby Bowie » Wed Jul 02, 2014 9:49 pm

Today not so good, I had to leave the house at 7am and didn't get back until after 7pm and James was really tired. He had been doing DIY and carrying his tool box, very heavy,plus assorted drills up and down the stairs and had even made dinner. We've got problems with the family, I think some of these are related to James being ill, but it all adds pressure. James was exhausted and tetchy and we ended up being grumpy with each other, something that rarely happens and hasn't since PC arrived in March. OMG I just want our old life back and for not everything to be about C.

I hope others are doing better.

Fiona X

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

Re: How long to get definite diagnosis

Postby sandraW » Wed Jul 02, 2014 11:03 pm

Sorry to hear of your problems, families are strange aren't they, sometime they don't help the situation, good on James doing the DIY and getting dinner too !!! bet you are both just tired. No matter how much we all try, I think the "disease" does take over to an extent. and hopefully you will both feel better about it all tomorrow.
Hope you have a lovely holiday in Majorca its beautiful, we lived there for nearly 15 years, so I know it will be hot, take care with the sun Trevor came out in some lovely red lumps on both fore arms, which have taken 4 weeks to finally disappear, our consultant said "you didn't use strong enough sun protection" so be warned lol take care sandrax

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

Re: How long to get definite diagnosis

Postby Bowie » Fri Jul 04, 2014 10:08 pm

Thank you Sandra, Thursday not much better. James' white cells are low and after only the first week, so he was at the hospital all day while they sorted out a reduced dose and same again today. Then from tomorrow he has to start injecting something to increase the white cell count by doing something to his bone marrow. Plus he has to avoid children for a week, which means not seeing the grand children and has been strongly advised not to go on holiday. He had a bit of diarrhoea, but was able to eat quite well, thanks to the steroids and then went to sleep. It's only the second week and I know we've got to get used to all this, but it is so hard not to yearn for the old life.

Hope things are better for everyone else going through this

Fiona X

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

Re: How long to get definite diagnosis

Postby nikkis » Sat Jul 05, 2014 7:22 am

Hi Fiona,
Paul has an injection post chemo to help the bone marrow and so far his counts have always been really good, so hopefully this will do the trick for James . It does sound a bit risky for you going on holiday at the moment with so much going on, but from our experience things do get better, so hang in there,
Take care,
Nikki

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

Re: How long to get definite diagnosis

Postby wackywacky » Sat Jul 05, 2014 4:33 pm

Hi Fiona looks as if we are a week and a half behind you (diagnosed 8th April)we finally start chemo on Tuesday Gemcitabine and Abraxane. No picc line for us and both drugs to be given as a day case on Tuesday, Not posting on my thread yet don't want to tempt fate and something else happen to us. Will have to compare notes lol, hope your other half feels ok, Its a funny old world we live in and I think we all want our old lifes back we can live in hope.... and stay strong for each other x

Chrisf
Posts: 12
Joined: Wed Jul 09, 2014 11:52 am

Re: How long to get definite diagnosis

Postby Chrisf » Sun Jul 13, 2014 7:42 am

Hi Fiona,
We're a bit behind you - diagnosed on 12th June and due to start the same chemo regime as you this week. That will no longer happen as Pete is currently in hospital with an infection and now has a blood clot in his lung in addition to the one he already had in his leg.

But I know exactly what you all mean about wanting your old life back - I keep hoping that it will turn out to be a terrible dream. We've been plunged into a world full of drugs and medical conditions, and Pete went overnight from being a normal man who has earned respect in his job to being an invalid where all anyone seems to talk about is when he last went to the toilet. At the moment we seem to have nothing else in our lives.

I hope things start to feel better for you once the chemo regime is properly under way and that you do manage to go on holiday at some point.
Christine
x

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

Re: How long to get definite diagnosis

Postby wackywacky » Sun Jul 13, 2014 9:27 am

Hi Fiona, hope everything as gone ok this week for you both x

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

Re: How long to get definite diagnosis

Postby Bowie » Mon Jul 21, 2014 8:12 am

Haven't posted for a while, as too sad. However, have continued to read your posts and comments which have helped. James hasn't been doing too well lately. The injections to improve his white cells worked well and the week before last he had the full gemcitabine and abraxane. Within 3 days he started diarrhoea again and really struggling to get it under control. No one seems to be of any help, having researched he has started taking Codine, but still not much better and has lost more weight. He is also very tired and now goes for a nap each morning and afternoon, but at least he still doesn't have any pain. Last week we saw the oncologist and the CT scan results from a month ago, why do these things take so long on NHS ? 13 weeks since the previous CT scan showed little change, a bit of growth in his lungs, but only slight and no change in pancreatic mass still only about 2.5.cms and none visible elsewhere. So for now that's good, but he is getting really down with the diarrhoea and tiredness and decided to have a further week off chemo. He is due to start again next week, this is the week we were due on holiday and I know James is thinking he may never go again.

Going back to the GP today and ringing the hospital, the Macmillian Nurse similar to other experiences is useless, totally focused on hand holding, smiling bravely and obsessed with dying. We never want to communicate with her again.

Hope things are better for others.

Fiona X

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

Re: How long to get definite diagnosis

Postby wackywacky » Tue Jul 22, 2014 8:24 pm

Hi Fiona, I feel for you both, sorry things not going as they should, cant help re the diarrhoea, if anything we are the other way, but weight loss were nearly 3 stone lighter not sure if that is something to do with him turning in to a dieabetic with this crap we are dealing with. Do you have a specialist nurse you can call, there are things the medical people can give, get the doctor to do a home visit. Is he taking creon this seems to help a lot of people, was speaking to another couple at hospital re the creon her husband had lost five stone, but is now taking 6 x 40000 creon with every meal and that as helped him put weight back on, im going to take a leaf out of there book and up other halfs creon and see if this does anything re his weight, been told you cant over dose on them, Hope you get the help you need and thinking about you both x

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Tue Jul 22, 2014 8:54 pm

Hi Fiona,

My dad has struggled with diarrhoea from the very beginning. Up to 40 times in one day on some occasions. He takes 3 codeine a day, 14 Loperamide and 10 40,000 creon with each meal. Still had diarrhoea. He has started having octreotide injections. They have recently doubled the dose and his diarrhoea isn't as frequent. They are going to triple the dose next month. He still has diarrhoea within 20 minutes of eating but it is more like 'porridge' than water. Maybe mention the octreotide injections and see if you can have them? He has only put on 2lb and he really does eat extremely well. But 2lb is better than a loss.

Leila xx