Message for Clair & Blue

[Nardobd]

Hi Clair and thanks for letting us know what happened yesterday.

I think you should be encouraged that Blue's doctor is consulting with other members of the team because that means Blue will receive the advantage of their combined experience. Similarly, the huge reduction in the CA19-9 tumour markers is very positive indeed.

I feel we all have to ride the roller-coaster because the alternative is just unthinkable. I refuse to bury my head in the sand and wait for the inevitable! The "Last Chance" saloon is a considerable way down the road yet and there are potential turning points.

As for sleep - you're no good to Blue if you're too tired to support him. I'm sure that he's grateful you're able to sleep. You shouldn't feel guilty. Short of sleeping tablets, I have only one suggestion which has helped me in the past - a spoken word tape/CD. This might be a relaxation technique or even a book read by someone whose voice you find "comfortable" and reassuring. For me, that's Stephen Fry but your choice will probably be very different. I use in-ear headphones so that the sound doesn't disturb Ted. There are some audio books available free online - just type <+"audio books" +free> (without the arrows) into Google.

I can understand why your Mum asked the question about stopping and re-starting treatment but, with the greatest respect, you can't dwell on that. We can only move forward and hope that the additional chemo does the trick. I would find it comforting that Blue is going to be so closely monitored over the next couple of months because the doctors can then move quickly to ensure he gets the best treatment. If that turns out to be the experimental treatment then so be it. Clinical trials/experimental treatment is the only way that research can move forward and if a trial is proven to be beneficial then the participants are the first to receive that benefit.

Again, I tried to search online for what treatments the doctors might have been talking about but was unable to narrow it down sufficiently to be of any use.

You can order Starkie's creams direct from the manufacturer online: www.starkiesbeeswaxcreams.com/erol.html#1X702

We're having a scaled-down Christmas. Both our adult daughters have invited us to their homes but Ted wants a very quiet day - just us and the dog. One of our daughters will bring her children over on Christmas Eve and the other and her husband will visit on Boxing Day. Like you, I have less of an appetite for Christmas this year, but will make the effort.

I know it sounds corny but my friend loved her second anniversary gift from her husband - he had two pillowcases printed, one with her picture and one with his, so they each sleep on the picture of the other.

Keep going and stay strong.

Nicki xx

[clair2305]

Dear All

thanks for your support, it's a great help, I feel I can say the things I can't say to others.

Blue's sleep still terrible but I think we are just going to have to accept that, hopefully chemo tomorrow will make him tired, just so he gets some sleep.

I've still got lots of questions to ask the doctors but Blue wants to hold off a bit, although he is going to ask the doctor tomorrow to see his CT scans....

Signing off now, just a quickie, anyone having the flu jab and more specifically the swine flu one? Said on news that cancer patients should be among first to have it and wondered what your experiences were

TTFN

Clair

[Nardobd]

Hi Clair

I hope that Blue was able to see his scans today. For some reason, I found seeing Ted's scans very helpful - it could just have been that physically seeing something there was less frightening than my imagination! They are difficult to interpret at first, though, and I needed Ted's consultant to "walk me through" the detail. Hopefully you and Blue got the same help.

Neither Ted nor I have had any flu vaccinations. However, I did get Swine Flu 3-4 weeks back and I don't recommend it! Felt like a limp dishrag (well, worse than that but I can't swear here). Luckily, Ted managed to avoid catching it. I'd advise discussing the issue with the GP if you can. They are usually best at getting an overview of what medications are being taken and deciding whether a specific treatment/innoculation is appropriate.

Speak soon

Nicki

[Ellie]

Hi Clair

Just to say that both myself and hubby have had the flu jab. Brian had to have a blood test, to make sure he was ok to have it, and he just had a bit of a sore arm afterwards. I really didn't want it, but went ahead as there was no point in Brian being vacinated and then me catching flu and passing it on to him. I didn't have any probs at all. Not sure what will happen about the swine flu, though.

As Brian has stage IV PC with liver mets, I, too, am interested to know what other treatments may be available. I'm still hoping chemo will continue to work for a long time, but it would be good to know what other options there may be. Keep reading of all these new "breakthroughs", but nothing seems definitely available yet, does it?

As for Christmas, everyone - well, I am determined that this will be the best I can make it for Brian. He just loves it and he would always be more excited on Xmas morning than our daughter. I've always had to restrain him from turning the house into a grotto with decorations etc, but this year - well, I will make sure it looks the part I hate to even think this could our last Christmas together, but I am certainly going to make sure he has a wonderful, family Christmas and a very special birthday, too. Glad to hear you are doing the same, Juliana!

Thinking of everyone and wishing you all strength to keep on fighting.

Love

Ellie

xx

[clair2305]

Dear Nicki, Ellie and Juliana

thanks for your messages, they are a support and now although money is so sparse I'm thinking of following the Barclays advert (haha), I'm going to make it a great Christmas. We went shopping today and I was upset, horrible being skint and not being able to buy what you want, but heyho I'd trade that for Blue getting better, or better still cured.

Also bought an anniversary pressie for him, wont say here cos I do let him read these posts.

And Blue wants a food processor for his birthday (gone cake mad!)....it really goes against the grain for me though, I normally have a rule that I wont buy anyone anything for the home as a present, but he says it's not for the home it's for him.

So onto Monday:-

Blue didn't ask to see his scans, saw a different oncologist and were a bit thrown, more thrown by the question he asked "why do you think you got PC?", that seems to be the million dollar question doesn't it, although I think it was genuine concern, as Blue is only 41, the doctor seemed surprised - we all were!!

Anyway, Blue is now off the Telovac trial (although he was never on the vaccine strand) and boy didn't we know it within minutes....I'll detail below:-

* - well not seeing the same oncologist

* - we now don't see an oncologist each week, only on first week of chemo cycle

* - no filling in questionnaires or tablet sheets (for capcitibine)

* - we have to ask for the CA19-9 blood test form on 9th November so he can have that blood test on 16th Nov (chemo free week)

then there was the experience in the chemo day unit:-

* - no bleepers working so kept going for a walk and going back in to see if they were ready

* - they firstly didn't even have Blue down for chemo???

* - Blue's blood was taken at 9:30, but he didn't have chemo till 2:30 (to be honest it is normally a wait, till bout 1pm but normally because they give us a bleep we go to the cancer support charity in the grounds for a cuppa and they bleep when chemo is ready)

* - 4 hour wait for medication at pharmacy

I was feeling frustrated, as we have seen patients in the past getting upset/frustrated at waiting for chemo way past their appt times, but to be honest it never felt like that for us and I was just happy to have a nurse that knows how to put a canula in (cos we've had a few times where I've had to jokingly say "are you hurting my husband?" and then we also smile more obviously at the nurses that can do it, in a please put my canula in way), but on Monday I could see it from the other side of the fence, I even said to Blue's cancer buddy (80 yr old man with stage 4 PC with liver mets too) that I can see why people get annoyed, but that I didn't want to get annoyed with the staff because they are doing a great job and it's the systems in the background that cause delays and problems, but as my GP said when I was relaying it, "your priority is Blue and if you have to get annoyed then do"

However, Blue's normal oncologist did come round to see him while he was in the chemo unit. I did make an off the cuff kind of joke like "oh, now we're dropped from the trial you've wiped your hands of us have you?" To which he aid no, he was just a minion (his words) and not part of the trial, just busy that morning. He also tried to reassure Blue that if he wants to see a doctor when he comes for his appointment, just ask and if we need to speak with them just ring the named nurses. He has also booked Blue's CT scan for 16th November. The oncologist we saw in the nmorning said that it might be a bit soon, but agreed as Blue stold him he hasn't really slept since last CT scan and that he would feel more comfortable having one then. I think next time we see the oncologist we should see the scans.

Asked about sleep and there's nothing really they can do, cos of Blue's morphine dose they wont let him have sleeping tablets, but on Monday night he slept like a very noisy baby, snored all nite, it was heaven (snoring = real deep sleep), but then Tuesday and Wednesday were not so great. Have decided not to have caffeine after 8pm and been having hot choc at night, sometimes with or without a bit of brandy.

And, yes I am a donut, audio books and where do I get them? My mum works in a college Learning resource Centre (new word for library and computers) so she is bringing some home for him....don't mattter she has worked in libraries for over 20 years but it just goes out of my head.

As for echinneacea, asked oncolgogist and he said that Blue cannot have it, just to let you all know.

Also, asked about Swine Flu jab, and again Blue can't have it but myself and stepson have got to have it, as well as normal flu jab. So booked in for normal flu jab on 17th Nov. Dr told me I'm really strong this week when I went to the surgery.....and I just errupted into tears!

Signing off now

Have a good weekend

Clair

PS - anyone heard from Trevor?

[Nardobd]

Hi Clair

I'm pleased to hear that you're planning for a great Christmas: Blue will appreciate that and, to reiterate the obvious, it's not about money, but love. I have the same rule about pressies for the home but at the end of the day, if it's what Blue wants....

I'm not surprised that Blue was thrown by the oncologist's question. We were told that no one knows why and that it's not anything Ted did or omitted to do. I don't think I could have stopped myself from a rude retort!

Your experience of chemo is horribly reminiscent *shudder*. I was so very frustrated when Ted was undergoing chemo and proclaimed my theory at every opportunity, namely that the patients who have or may have a terminal illness are the ones who can least afford to spend time waiting around.

I understand why you don't want to get annoyed with the staff. You can make your feelings felt strongly without putting the blame on the staff. I think one of the times when I got the best response was when I said "no, no, we can't do this". Frankly, I made a nuisance of myself but in the nicest possible way (if it's possible to be nice whilst complaining!). Complaining about the system and its effects on the patients can also have an effect. Albeit that the hospital denied I had anything to do with it, they changed their system about half-way through Ted's chemo to give patients an option to have the blood tests and assessment one day and chemo the next. Obviously, whether that suited people depended on how far they had to travel, but at least the option was there.

Whatever you or Blue need from the hospital or staff, shout!! They are there to support you. I know that there are other patients too but, as your GP said, your priority must be Blue. If something would have a detrimental affect on others or they can't do what you ask then they can at least explain why. One day when Ted's chemo was held up in pharmacy I spoke to the pharmacy manager who explained why each batch is made specifically for the individual patient, explained the process and even invited me into the pharmacy to watch chemo being made up. It was fascinating. At least I now understand why it takes so long (the dosage is dependent on wait, Gemcitabine comes in a powder form and has to be specially mixed with saline in a machine, the whole process has to be done in a sterile chamber, they then have to check that the mixing process has been successful before double checking the dosage and patient details etc).

Double-check with the doctors but subject to their advice have you thought about herbal sleeping aids? Ted takes Nytol and finds it really helps him to sleep. We went through a couple before deciding on the best one for him but it was well-worthwhile because it ensures that he gets rest which is so important both physically and mentally.

You can get audio books from the main bookshops, eg Waterstones. It's normally a fairly small selection but you should be able to find something that suits you. Alternatively, main online booksellers have them, eg Amazon who I believe also have a sister company called "Audible" who specialise in audio books. (EDITED TO NOTE that Audible depends on downloading books from the internet and transferring them to an MP3 player)

No, I haven't heard from Trevor lately. He could have taken Chris on a trip. Trevor, if you're reading, we'd like to know how you're both getting on.

Take care and have a good weekend.

Nicki x

[Juliana]

Hi Clair,

Sometimes to help sleep and relaxation I use 'Badgers Balm'. It's like a vaseline based ointment with lavender, rosemary, bergamot, ginger and balsam fir, and you can rub into your temples, onto your lips (you then inhale it constantly to help relax and induce sleep) and even onto the soles of your feet (great place for absorbance reasons). You can find it in most chemists or health shops, here's a link to an online supplier:

http://www.soorganic.com/sleep-balm-in-2-sizes-by-badger-balm-c-285-p-1-pr-880.html

The tubs are small, but you don't need alot for it to work. The first time I used it my temples tingled so much it felt like I was having some sort of facelift, and yes - I slept very well.

As for Christmas, if Blue really wants a food processor - and you are worried about the cost, why don't you look for one second hand? So many are put up for sale when the novelty has worn off, or they just don't have the space for them that alot have barely been used at all. Check Amazon (good for free postage) and Ebay.

http://www.amazon.co.uk/Kenwood-Multi-FP220-Compact-Processor/dp/B000M5D5JQ/ref=sr_1_2?ie=UTF8&s=kitchen&qid=1256983583&sr=8-2

I also checked Which? for any reviews - the ones they picked are very expensive, however listed as one of their BEST BUYS and coming in at £44.00 was the Breville FP26 scoring 76%. That's 3% less than the KitchenAid Artisan 5KFPM770 that costs a whopping £242.99!!!

I like making cakes too, cooking for pleasure is very therapeutic xxx

Anyway, hope it helps

Juliana

[Ellie]

Hi Clair

Not a good story, now Blue is off the trial. It must be so much extra stress for you, waiting around and not getting things done so quickly. I hope you get into a better routine soon.

Really writing about the financial side of things. Just wondered if you knew about income support and disability living allowance? Blue should get the highest rate because of his situation. Also, have you considered contacting Macmillan? They are always advertising to say there are they if you need help financially and can give grants for heating, mortgage, even clothing etc. I don't want to pry or be insensitive - just wanted to mention these things in case you didn't know about them. These things are there to help us when we need them most - and we are all going through enough emotionall, without having to struggle financially if we can avoid it.

Hope things get more organised for you.

Sending you my best wishes

Love

Ellie

xx

[Ellie]

Hi all

Following on from my last message, just wanted to mention something else on the financial side of things.

My husband decided he wasn't going back to work at the same company, even if he had been fit enough. (He was a paint maker and we read that working with the raw chemicals can be linked to pancreatic cancer). During the talks with his company, we learnt that if you have a terminal illness, you can ask for all your company pension contributions to be returned to you, along with the interest. He had 3 small company pensions and has had payments from all of them. Be aware that you may lose any other benefits (such as life insurance), but it is worth investigating how much you could get back and possibly what you may receive as a smaller pension now, along with a lump sum payment.

It is just another option which some of you may not have known about, or considered, but it could offer a lifeline to being more comfortable, financially, at a time when it is needed the most, plus less worry and stress trying to cope without someone's salary. I am certainly no financial expert, so please do look into it very carefully! Everyone's situation will be very diffferent to ours.

Ellie

x

[Juliana]

Hiya,

I agree with Ellie with regards to benefits.

It's one thing I regret not doing after I had my operation and first course of treatment etc. However at the time we were in denial of sorts, wanting to prove to ourselves that I wasn't experiencing a 'disability' - it was almost like we would admit our lives had changed. I think my husband at the time needed that positivity more than me, and I was happy to go along with it. Now, a year and half down the line I'm thinking how much that little bit of extra money would have come in handy towards my extortionate Organic food bill! At the time I would have been eligiable for full disability allowance as post operation I couldn't even pick my 8 week old baby up.

Plus there is always the added pressure to keep them updated to any change in your progress, and every day I was striving to do more, recover, return back to normal and would have felt like a benefit cheat etc. All these things mixed up together and so we didn't bother enquiring.

I have since spoken to a lady that runs a support centre at Singleton and she said that even now I should be eligiable for something, and it was worth just filling the forms out (preferably with someone who knows how to do it as apparently they are a nightmare) and let them decide. As Tesco likes to say 'Every little helps'.

And yes, Macmillan also offer support, if your savings are below a certain amount they have grants available for bills/clothes and even holidays. And I am sure they are not the only ones that have this type of scheme running.

You could always come to the Gower for a dirty weekend away As long as you didn't mind 3 nutter kids running around pretending they are Power Rangers....

Love,

Juliana

[clair2305]

dear all, just a quickie, been offline cos got lovely virus on pc and so being repaired, which means have to use fone to reply and so no return/enter key which is y message just runs on like this.......read yr posts n will respond wen i can, hope to borrow a laptop this week, lots to say.....stepsons 18th birthday today, hope u r all well

[clair2305]

hi, just another quickie, computer back but no power lead haha, hospital tomorrow no ct scan this week - update on reasons wen have power lead - blue had back pain n stomach ache this week, but only tells me after a few days! I knew about stomach ache as very very windy, also had a couple of small lumps come up on hand, will discuss tomorrow but seems since off trial and have to walk round with canula in arm all day. And he is sweating a lot, after he walked down town (5 mins) but it always seems to be after dinner, so will bring this up, anyone else have this? We went to see complimentary therapist at hospice this week, blue had reiki which he like but she asked what his platelets were (290) and said he couldn't have massage, didn't ask why (donuts we are) anyone else had this? And what are platelet levels normally?

[clair2305]

i'm finding research hard (even harder trying to do it on my fone!), anything new out there? And did anyone watch The Silent Cancer on the Community Channel this week?

[clair2305]

Hi Nicki, Ellia and Juliana

thanks for all your messages whilst I've been offline.

Blue had chemo this week it's week 1 again. He missed a session (his week 2 of the last cycle) as his platelets were too low and because of that we spoke to the oncologist about the CT scan (was scheduled for 16th Nov). We said that if the results were not good, we didn't want them say "oh well, you've only had 3 session in the last 6 weeks (one mission because of platelets and two weeks when they stopped chemo), when it would have been 5, let's wait a bit longer", so Blue agreed to postpone his CT scan to 16th Dec (2 days before his birthday). I wasn't really happy about this because I think it should have been done, but he said "what's the point", so what can I say.

We spoke to the oncologist about the sweating and that just seems to be another side effect of this cancer. They are also reducing Blue's steroid to 1mg of dexamethasone every other day (hard trying to cut the tablets haha).

We showed the oncologist Blue's hand, his bumpy veins and basically it is damage from all the prodding, so next week I'm going to say in the chemo unit that we want them to take the blood from his arm and not leaving him walking around all day with a canula in it, just be canulated for the Gemcitabine.

At his last CA19-9 test on 23rd Nov his tumour markers were at 41, which I felt really positive about, until the oncologist said that although it was good, the proof of the pudding was with the CT scan and that sometimes they see them come down when the tumours are not. The oncologist said they are always looking ahead at other treatments because GemCap will not work forever anyway. So everyone keep everything crossed for us for the CT scan.

Still not asked my questions, Blue just wants to get out of there, but he knows at the next meeting I will be asking them (about if tumours go from liver and surgery/transplant).

Oh and over the last month (4 weeks) Blue has put on 6 kilos, yes 6 kilos!!! Surprised everyone, even the pharmacist in the chemo unit had to check the Capcitabine dose was right.....she was wondering if he'd grown in height!!

Regarding our finances, we currently get Employment and Support Allowance and Blue gets DLA. The Mac team did a carer's allowance application for me to protect my NI and I've just been awarded it so we will get an extra £30 a week (it all counts). We've gone from being very good earners to living on what is about 20% of our previous income and you know when you are at home all day, the bills go up, but heyho. It seems mad but that extra £30 will come in really handy.

I've been told I can work part-time but obviously have to declare it. After my contract ending at my last job I was finding it hard enough in this recession to get another, how could I get one, part-time and "by the way new employer, I have to have at least one day off a week to take hubby to hospital". To be honest, I've worked since I was 15 and as much as I miss the workplace I know I wouldn't be able to do it, I'd be worrying all day. But thanks for you all showing your concern regarding our financial situation.

Did anyway watch The Silent Cancer? I did and it was very interesting, may email one of the research oncologists at Cambridge Research Centre.

Also, I think tomorrow will be research day. As I've been out of the loop, can anyone tell me what's new? And is there any more information on tumeric?

Hope you are all well

Best Wishes

Clair

[Nardobd]

Hi Clair

During Ted's chemo they said that patients often have to miss dose 2 of a cycle. He was lucky and his bloods were always ok but just so that you know it's semi-expected by the medics. I know what you mean about the scan - if it was up to me Ted would have had one every month. It's so difficult to sit there not knowing. Even the very worst news can't be as bad as we sometimes imagine (well I do anyway).

As to the sweating, am I right in thinking that Blue had some difficulty walking? I had back trouble for a while and put on a bit of weight and I can't walk more than 100 metres without perspiring at the moment. It's slowly improving as I regain my fitness but that's taking forever!

Lots of people say that you can't rely on tumour markers but our experience is that they are fairly accurate for Ted. Fingers (and everything else) are crossed for you.

No, I didn't watch Silent Cancer because Ted's understandably a bit sensitive about cancer-related stuff. Was there anything promising?

As to research, I don't know of anything which hasn't already been subject of a message. I must get back to researching but with Ted's recent recurrence of jaundice there's no way anyone would consider him at the moment anyway.

Nice to "speak" to you again. Keep us updated.

Kind regards

Nicki

[Juliana]

Hi Clair,

Glad to see you back online again.

Sorry to hear about the delay in Blue's scan....I know how that feels. I pressed for mine anyway - but I had had 8 sessions of chemo - ideally it would have been 10 - but I honestly couldn't see what 2 extra sessions would have done scan wise and I hadn't been scanned for 4 months, so needed to know.

As for Blue's sweating....I too tried those steroids that he is on. I had to come off them as they made me burn up, especially during the night. I would generate a lot of heat but no fever - and I rarely ever sweat so think my body couldn't expel the excess heat. I would only take them when I would have my infusion, and before 12noon, no later as I would be hyperactive all night. Wonder if the steroids are giving Blue the side-effects, and not his cancer.

As for research, I've gone off on a tangent atm. I've strayed from the orthodox and gone for the alternative/nutrition option, so have been mostly reading about the Budwig Diet. From what I've read in testimonials, some people have followed it strictly, whilst others have just incorporated the flaxseed and cottage cheese mixture into their diet.....and had positive results. I thought I would try it as firstly, I like cottage cheese and secondly it's easy to get hold of, and doesn't cost the earth. I have given up meat too - although I have read some meat is allowed as long as it's 'natural' - which I presume means 'organic'. I think I will save myself for Christmas, and have Turkey (organic - if I can find it!) as a treat.

It's all to do with getting as much Omega 3 & 6 into your system - and I know this was mentioned in another thread somewhere which confirmed to me it must be worth a try. I am still taking the turmeric too.

I didn't watch the documentary as I didn't know it was on, but my Mum did - she said it was very good.

A/O Nicky - sorry to hear Ted is experiencing jaundice again, I hope he doesn't get the pruritis too (itching) - it's unbearable. Whilst in hospital I had a terrible time with it and remember telling my husband I wanted to throw myself out the window just to end the infernal itching. I took a bristle brush to my legs at one point and scratched myself raw. Finally I persuaded the nurses to get me some pillow case covers, I soaked them in cold water and placed them on my legs - it helped. I also asked for the surgical gloves they use....and filled them with ice cubes (just one hand) and then would clasp it between both hands and weaved my fingers inbetween it's fingers. I have to say....it was heavenly! I will always look fondly at those litte yellow gloves when I see them at the hospital.... <3

I also can't believe it - after taking a trip down my local surgery to update my enzyme prescription.......I have caught a cold! After avoiding the 4 colds my husband has had since Sept, and the colds and coughs my 3 have all had.....I go and get one at the Dr's.

Speak soon -

Juliana x

[clair2305]

Dear Nicki and Juliana (and sorry Ellie for spelling your name with an 'a')

Thanks for your replies.

Nicky I'm also sorry to hear about Ted's jaundice. That seems to be the one symptom Blue hasn't had although some friends said they thought he had it.

Re The Silent Cancer - I will post the info I got separately in another post. I did try to find it online to post the link, but there only seems to be a short excerpt. I did record it on my Sky+ box, so if I can get it from there to the PC I will let you know...

Juliana - there's no way I could get Blue to eat cottage cheese (which I like), he wont even eat yoghurt. But we do eat quite a bit of oily fish anyway, but I may increase this....sardines on toast I think (yum).

Also Juliana, for some reason I cannot get onto your post about turmeric, I can read the posts on page 1 and 2, but page 3 keep saying the page cannot be found. Could you reply to me with the information and link again please. What type of turmeric are you taking, etc?

And, found a solicitor to take on Blue's case, he said it will be hard work, but he is applying for legal aid and fingers crossed that will be granted then we can proceed. He is going to write to XX for their records and write in their letter that we are no way looking to pursue a claim with regard to them and that Blue is happy with the treatment he receives from staff there.

And what's the news this week about mushrooms? I've found this:-

http://www.dailymail.co.uk/health/article-1231978/Mushroom-shrinks-cancer-tumours-75-cent.html

but to be honest other NHS websites warn about these articles in that it is in it's very early stages of research.

TTFN

Clair

[Juliana]

Hi Clair,

Wierd....the page is just a blank for me.

I do wonder if I cross a line when I post what I am trying against my fight against cancer, as I guess the forum/charity has to remain impartial to this type of information and not look to promote it in anyway. For the moderators, I do apologise if it's causing a sticky situation. To you lot reading.....good luck!

I can't remember which sites I posted last time, so here are a few of ones I have marked previously.

Well, firstly there is this:

http://www.cancerhelp.org.uk/about-cancer/cancer-questions/can-turmeric-prevent-bowel-cancer

There is a warning at the bottom of the page about 'Fortodol' - but this is not what I am taking, I am taking plain old Turmeric in enteric capsules (organic - by Solgar at 400mg str.)

http://www.psa-rising.com/eatingwell/turmeric.htm

(this one is mostly about prostate - but some interesting results from trials/research listed on there

http://www.nhs.uk/news/2009/10October/Pages/turmeric-curry-spice-cancer-treatment.aspx?WT.srch=1&gclid=CISa1u-Eu54CFUQA4wodJmSrlA

(our very own NHS which seems positive but relies on the good old 'more trials need to be done'...)

also same story on: http://news.bbc.co.uk/1/hi/8328377.stm

http://www.canceractive.com/cancer-active-page-link.aspx?n=1571

(this site has lots of interesting info)

That article you posted about mushrooms.....wierd thing is a nutritional Dr mentioned I should be eating shittake mushrooms.....just a coincidence?

You are brave embarking on the legal battle. It's something that has crossed my mind too, I just know it would wear me out as my husband would not want to be part of it - and I'm knackered enough as it is! Also....the money....the timescale.....etc. I hope it's a positive experience for you both.

Take care,

Juliana

[clair2305]

Dear All

just to update you....

We had our 2nd wedding anniversary yesterday and it was lovely, Blue loved the canvas print I got done of one of our wedding photos and I loved the bangle he got me (even though not cotton).

Blue has a chest infection at the moment and is on antibiotics. He is a lot better than he was earlier in the week.

He is also down to 1mg evey other day of the steroid. This worried me too as he seemed a bit reluctant to eat but I am sure that this is also down to the chest infection and his appetite seems to be returning, although not to the amount when on 2mg daily of steroid, so there's no waking up in the night to him eating chocolate fingers haha.

This round of chemo also has knocked him out a bit. There is more gemcitibine in his drip and a higher dose of capcitibine tablets also (due to the weight increase). Last week his was fine on Tuesday but very tired on Wednesday and this week he has practically slept from when we got home on Monday till yesterday. I'm sure the chest infection doesn't help either, but at least he was getting some sleep and this morning neither of us woke till 8:30 (normally tablet time, which sent me into a mad frenzy to do breakfast and dish out pills).

I've got all the names of the doctors that were at the conference in Barcelona earlier this year and am going to email them all to see what advances there are in PC, what clinical trials are coming up and also about this turmeric study. Had anyone got any tips on what to ask?

Also, our solicitor has changed his mind, basically I think his boss wrapped his knuckles. So I have one more to try, who has successfully won a case for wrongful diagnosis of PC. If I get no joy there I will go down the complaint route.

Christmas shopping done, off to London again at the weekend and Christmas tree on Sunday I reckon, just finishing wrapping up. I bought some nice PC Christmas cards (pancreatic cancer of course, not computers or politically correct ones)

Signing off now, how are you all?

Clair

[Nardobd]

Hi Clair

Glad you had a good anniversary and that the gifts were appreciated.

How's Blue's chest infection? Gone I hope. How is he getting on with the lower dose of steroid now?

If you intend to contact the specialists I would make the questions fairly generic, eg "What progress has been made in the last year?" "What clinical trials are you excited about and can you let me have the eligibility criteria?" My thinking here is that if you ask questions about specific topics they will only answer those questions and you might miss out on other information which could be useful.

Glad you've done the Christmas shopping. I've told my lot they're getting money - I really can't get into the spirit of going round the shops buying gifts right now.

Sorry to hear about the solicitor. Let us know how you get on with the one that you're trying next.

Speak to you soon. Take care

Nicki

[clair2305]

Just a quickie as tired and being on the computer for ages.

Nicki, thanks for those couple of sentences, it came just at the right time as I was drafting emails.

I've emailed everyone who presented at the ESMO Conference in Barcelona in June and I've also emailed Dr Tuveson or Cambridge Research Institute. He was on The Silent Cancer Documentary and as he is on the same site as the hospital we go to and works alongside the Professor that Blue is under I thought I'd contact him. His email was more personal and I do hope he responds.

CT scan tomorrow - keep everything crossed for us (but not eyes id driving)

Also at the hospital this week Blue met another patient who said he has had PC for 4 years. I don't know if he has any metatases in the liver like Blue or other organs, but he told Blue sometimes he has 4 or 5 months off and then goes back for treatment. I did not hear the conversation as I was trying to get a bleeper from a nurse, but Blue said it made him feel more positive and hopeful.

Signing off ladies - anyone heard from Trevor?

Clair

[Juliana]

Hi Clair,

Happy Anniversary x

My father has a chest infection and he's lost a stone in weight due to it - so I wouldn't be surprised if it's that that has caused Blue's loss of appetite.

Sounds like you've got the bit between the teeth with contacting all these specialist, I hope someone gets back to you with something pro-active, I know it's a busy time of year for everyone, let's hope they can reply before the Christmas break - with some good news.

Hope the next solicitor knows what he is doing and doesn't mess you around like the last one.

Let us know how you get on.

Kind regards,

Juliana

[Nardobd]

Hi Clair

Glad to hear that Blue found his discussion positive. We all need to keep up the fighting spirit!

Good luck at the CT scan. I don't drive but keep bumping into things if I cross my eyes! Everything else is crossed though.

Let us know how you get on.

Nicki

[clair2305]

Hiya all

thanks for your replies, just a quickie today. It's Blue's birthday although he hasn't opened any of his pressies as he is in bed unwell, been sick and watery diarrhoea, think it's the Norovirus to be honest (they are giving out notices at the hospital about it). I had it Wednesday (CT scan day) at first thought it was stress related, that I was getting myself in a state, but after the joy of throwing up at home, then at the hospital (got to the loo in time), then outside the front door when we got back (couldn't get the key in quick enough) I realised it wasn't and packed myself off to bed. I'm ok now, although still a bit tender from nearly turning myself inside out over the loo.

But now today Blue has it, has only been sick once. Hasn't had his capcitibine today because he wouldn't have breakfast. Rang the hospital and they said it was fine to miss a dose and to keep him hydrated. They did say he should be free for 48 hours before coming for his appointment on Monday (the one where we get the CT scan results). This peed me off a bit cos I was ringing for advice, not a telling off and I caught it from their blooming hospital anyway, hook or by crook he will be fine on Monday, we will not be missing that appointment.

I've been able to get him to take his domperidone, but he wont have the loperimide (for the diarrhoea). I'm keeping a check on the times, etc and if I have to be a bit more forceful I will. He told me to leave him alone and for the timebeing I am.

I've had a couple of responses to my emails, but will post it on another thread.

Love to you all

Clair

[Nardobd]

Sorry to hear that you and Blue haven't been well, Clair. Hope you both feel better soon and I agree with you about Monday - you can't put off such an important appointment over a little bug.

Let us know what happens.

Nicki xx