How long to get definite diagnosis

[nikkis]

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

[Guest]

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]

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]

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]

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

[nikkis]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Bowie]

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]

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

[Guest]

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

[sandraW]

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]

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]

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]

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]

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