Message for Clair & Blue

Blue is a lot better today, so had his pressies this morning.

I bought him a food processor and some lovely little spoons that say "smidgen", "dash" and "pinch".

He also got from my mum a lovely Michel Roux Pastry cookbook and other cooking utensils. I've scanned the pictures in the book and can say without a doubt.....they all look lovely (yum yum)

It's freezing here in Anglia

Clair

Hi Clair,

Glad to hear Blue is recovering from the virus.....hope you have too. I bet he is chuffed with his food processor - get him to make some nice Christmas treats

Good luck with the appointment tomorrow - I truly hope it's positive news for both of you this Christmas.

Love,

Juliana x

Dear Nicki, Juliana and Ellie

Happy Christmas Eve Eve

we have recovered from the virus, thank you....but if you can steer well clear of it and anyone who has it, it was not nice.

Blue hasn't used his food processor yet, but is going to make the Christmas soup with it (broccolli and stilton), some houmous and from Michel roux's pastry book that my mum bought him as a pressie, a custard tart....yum yum I can't wait. I can officially state ladies, that I've read the Michel Roux pastry cookbook from cover to cover and it ALL looks lovely, I'm sure weight increase will be proof of the pudding (literally haha).

Now to Monday and the CT scan results....

It was good news - yippee.

One tumour in the liver has decreased from 42 mm to 26 mm, the other from 26mm to 15 mm and they said the one that was looking as though it was going to block the bile duct has decreased and they can't measure it. The one in the pancrease they said was also difficult to measure (may be the way they did the CT scan, as Blue said they did him in two halves - haha probably because of his weight increase), but they said that has decreased too.

We were over the moon, as you all know, waiting in the consulting room for the doctor to come in feels like forever and I did cry when we came out of there, just the sheer relief to which Blue said "don't cry now".

He could have had chemo next week, but he asked for another week off, so back on 4th Jan.

We attempted to go for a celebratory shop and lunch in Cambridge, but the pavements or car parks had not been gritted and we had to walk single file holding onto railings and shops, so we went home. And there we slept, we were exhausted, I think it's the stress all getting to us and then the relief washing over us.

And one question, does anyone have a permanent line or implant in. The hospital spoke to us about Blue having one and we have some literature. Blue's veins are a mess from all the blood tests and canulas and we were wondering whether to have one of these options.

Now, if I don't get online again before the New Year, I hope you all have a great crimbo, eat drink and be merry

Clair (n Blue of course)

Fantastic news Clair. Now you and Blue can relax and enjoy your Christmas!

Have a great time.

NIcki

Hi Clair,

At last - some good news! wOOt! So pleased for you both, amazing news to have just before the end of a stressful year no doubt.

The permanent cannula was suggested to me too - due to my veins struggling as all mine need to come out of one arm due to the left one not wanting to play since having a vein removed during the op. Apparently its a little uncomfortable to begin with, then you get used to it being there - they suggested in the crook of my arm (where your tests are taken from) and that it's covered when not in use. I suppose you could try it, and if Blue doesn't like it - he can have it removed.

Have a Happy Christmas both, and here's to a cancer arse kicking New Year!

Love -

Juliana x

Dear Clair

I am SO thrilled for you both!! What fabulous news, right before Christmas! I'm sure you will both relax a bit and enjoy the festive season so much more now.

Brian, my husband, had problems with his veins after so many chemo sessions and blood tests etc, so he had a Hickman line fitted nearly a year ago now. Don't know if you've got a choice, but it has been excellent. A district nurse has to come once a week to flush it all and also took a blood sample from it, to send to the hospital to check he was ok to have his chemo, so that saved him a trip to the hospital to do it seperately. Occasionally, the nurse wasn't able to get any blood out of the line, so he had to go down to the town clinic, but it hasn't happened more than 2 or 3 times in the year. Brian sometimes finds the lines get in the way when he's sleeping, but they have saved him a lot of pain and discomfort from having needles in his arm, so that is just a minor problem.

Can I take this opportunity to wish EVERYONE on here the best Christmas possible. We've all laughed and cried together, fought the same battles, encouraged and supported each other and we all deserve to have at least a few days where we can enjoy being with our families, without too many problems.

Happy Christmas to you all!

Love

Ellie

x

To everyone using this site, some who I have corresponded with and others who I am following their progress, Merry Christmas and a very Happy New Year. Gill x

Hi Gill!

Thanks for your message. Nice to hear from you again! Hope you are having a good Christmas and not finding it too painful. I am sure your Dad would want you to enjoy your festivities.

All the best for 2010.

Love

Ellie

xx

Hi Ellie,

Well we got Christmas Day out of the way and I can say I had a good one. The comfort of knowing that I am allowed to enjoy myself helps - I know my Dad would be very disappointed if I had done anything other than enjoy the day and he would be proud that the family is rallying around my Mum!!

I am still in a state of disbelief but am doing well.

I hope that things have settled down for you and Brian x Happy New Year to you both!

Gill xxx

Dear All

hope you are well.

Just an update:-

Chemo started again on 4th Jan, all going smooth until today when platelets too low to have chemo (78). So this cycle is only two sessions, have the week off next week and back on 1st Feb. So we are going to Spain on Wednesday to my mother in-law's apartment for a rest, just waiting to collect a letter from our GP listing all the medication we have to take and the portacath and leg splints (contain metal, so will prob set off the detectors)

Had a bit of a nightmare at the hospital today. It was bad enough that Blue couldn't have his chemo, but they also couldn't draw any blood from or put saline into his portacath. Had to have an xray and then go to see the team (Vascular Access) to put the check the portacath. Low and behold, it was fine and they managed to get blood straight away, phew, we were worried there was something wrong and he would have to have another procedure to take it out.

Thought as it's week 3 (day 15) of cycle and it couldn't go ahead that we would have to go back next week for Day 15 (as that's what happened the last time he missed a session) but they said not, that he would just miss that session, have his week off as normal next week and start again on 1st Feb. At first I was a bit angry with this, mainly the way it was explained - the nurse kept trying to tell me that it is what normally happens, when we know from experience that it isn't. I was worried that he would be missing a session, but if we had to go back for day 15 next week, it would only mean that w/c 1st Feb, instead of it being his week 1 again it would be his week off.

We are both very tired and after 3 attempts to draw blood from the portacath, Blue again feels like he has been prodded about. I could tell by the look on his face he was upset, he had the portcath fitted so that he didn't have to have his hands and arms prodded about, but like I say luckily enough there was nothing wrong with it. To be honest I reckon the nurse hadn't opened the valve clip but it doesn't matter now, we know it's all working fine.

And so I reckon a break is just, as they say "what the doctor ordered".

No frills airlines take the mickey thou. When we first looked the flights were working out about £20 each way, but as we couldn't book in advance because you never know if the platelets will be ok for chemo, we had to wait till today to book and they go up in price the closer to the dates, cheeky.

So, flights booked and insurance, just gotta pack a bag and print confirmation stuff.

Hope all the snow has gone from wherever you all live....cabin fever was really setting here in our house.

Signing off now.

Clair

P.S. Juliana, how's the turmeric going?

Hi Clair

So nice to hear that you and Blue are taking a short break from it all. I hope you have a wonderful time and that once you get back the chemo nurses have things sorted so that Blue isn't prodded about too much.

Enjoy the sunshine and relaxation!

Nicki

Hi Clair,

Poor Blue....is it too much to ask that things just 'work' as they should...? Sheesh.......I'd be upset too.

A week away sounds grand Infact I've been looking myself - and totally understand where you are coming from with regards flights....Ryan Air doubled over night because we couldn't make our minds up and I ended up not booking. As Gaz is a teacher if we want to go together we are limited to term time travel....which is always expensive. However as this trip is purely for medicinal purposes (I'm feeling pretty rubbish atm - lots of pain in the stomach post eating, in my side, in my kidneys and under the shoulderblade that I'm considering a week in the sun to see if it can work it's miracles like it did last year) he did say I could go with my Mum, or a friend if I can find a bargain. I've been looking and found a cruise on the Nile, 4* all inclusive with 10 excursions included plus flights from Gatwick to Luxor for £399....! But, it's out of term time :S Plus, lastnight I had a pretty rough night and ended up having to take my morphine (first time in ages) so I am worried I may not be fit enough to go.

I'm still on the Turmeric, but have tried to increase the dose - I am just taking them like a supplement, but really I should be pushing the intake much higher than that. Same with the B17 - was taking 1 x 500mg, have now upped it to 3 x 500mg and I'm eating some bitter apricot kernels along side. I have recently purchased some Essiac tea (flor-essence) and have been taking that for the past couple of days - not too bad a taste, and I'm still taking the flaxseed oil/cottage cheese combo. I just feel I have left it too late in many ways...relied solely on orthodox last year, thinking it had worked and now I am playing catch up and reverse but don't think I'm hitting it hard enough.

It's hard doing things alone, without a motivational coach or someone who knows what to take and in what quantities that isn't trying to rip you off.

(although I have just bought a book by Philip Day called Cancer. Why We're Still Dying To Know The Truth - apparently it has a lot of information on the alternative stuff you can take, and in what measurement).

I'm due an appointment and scan next month, but for the first time I'm not sure I want to know what is happening.....it's so hard hearing it, especially if it's gotten worse and judging on the swelling in the stomach area and all the other symptoms I doubt I need a scan to tell me things aren't the best.

Had a chat with the hubby this morning at about 3am (I couldn't sleep) - he's going to help me get stuff sorted, like my will - memory boxes - my wedding dress boxed properly etc. I'm also going to look into DLA.

On another note, I have made an appointment to see an electrocrystal therapist tomorrow. He did claim that he can reverse cancer, but I doubt that very much - however, I have read this therapy helps with pain relief and energy (like accupuncture) - so it may be worth doing just for that. I will let you know if I experience any benefits from it - consider me your friendly neighbourhood guineapig

I wish you both a relaxing but fun week away - try something new together, something that you may have never done before.....like henna tattoo's ;P

Juliana x

Juliana

I'm sorry to hear you are feeling not too great at the moment, I hope you had a better night's sleep and I agree, it seems a holiday is in order.

As for taking the orthodox route, my feeling is "what else are you meant to do", I know I'm so nervous about Blue having anything that will interfere with the chemo or his CA19-9 tests (like echinneaca) that I end up reading the packets of packets of Lockets!!! I've still not bought turmeric for him, they sell it in Holland and Barrett but I want to talk to the consultant and read a bit more about it first. I can't seem to find the doctor who brought it up at the conference your oncologist told you about, I've emailed all the doctors that were there and only a few have responded. One doctor from St George's in London said the following:-

"The standard treatment is Gemzar. Trials are adding treatments to this.

However to date improvements are small with added toxicity.

I am keenest on adding rev whcih does not add to toxicity and has anecdotal marked improvements. A trial is being organised by Celgene re this.

I would add tumeric/curcumin as we have shown in vitro activity."

I have emailed this doctor for more information.

Also the MD Anderson Centre did respond and I added the links/info they gave under another thread.

I am also reading a cancer book Cancer Positive: The Role of the Mind in Tackling Cancers, by Dr James Colthurst. It's only a small book (just over 100 pages).

Blue has morphine tablets - MST (120mg twice a day) and also has Oral Morphine for top up which he also hasn't taken in ages (months), but if he needs it I force him to take it and then question him after an hour or so to see if the pain has subsided. If not, I try and get him to take some more. My view is that you shouldn't be in pain and I'm sure if you were drinking it like cherryade your husband would be the first the say something. If you have MST tablets maybe your dose needs revising. As our new GP worked in a hospice also he is very good at talking with us about things.

I hope you enjoy your electrocrystal therapy appointment, I think like you too, it will help with pain, energy and be relaxing, but as for reversing cancer, I always remember what Patrick Swayze said when I watched that interview with him....."if the claims they make are true, they would be two things....very rich and very famous" but hey we know there's a lot of natural products in convention medicine so do we care where a cure comes from, do we as heck.

Blue's had reiki before at our local hospice. The MacMillan nurses are based there and there's a complimentary therapist. Talking of Mac nurses, do you have access to one? If so, see if they will fill out the DLA forms for you, Blue's did and was really great. The social worker in the team also sorted our benefits as neither of us can work now.

(Blue's work was physical and what with the foot drop there's no way he could work and I was working but my contract finished....who is going to employ me if I can't work everyday because of hospital appointments and if Blue is too unwell I need to stay home. I was finding it hard enough to get a job after my last one ended cos of the recession, there's no way I could get a job now. I always feel like I have to justify why I am no longer working. After 20 years of working - since I was 15 - it is hard being out of the workplace and people do look at you differently when you are on benefits (because there's so many cheats) but Blue and I have almost 50 years of working banked up and were both high earners, so why should I have too. I don't know how some many live on benefits and still manage to be in the pub all day (we all have those people in our towns).....ra ra ra, ark at me going off on a tangent!!

Anyway, get the Mac nurse to help you if they can, they also got be carer's allowance.

I do hope you have a great day today and are feeling a lot better.

henna tattoos sound like a great idea.

All the best

Clair

Hi,

About Macmillan and DLA - both were great for us. I did the DLA on line and then received a letter within a week to say it was all sorted and if I could just send the form to confirm diagnosis - I couldn't believe it. Good in one way but then scary that it's an affirmation of the condition.

Sounds like we've all been through it. Trevor was due his Cycle 5 Week 3 IV dose yesterday but his platelets had dropped to 67 so they told him only part IV and no more tablets. He's delighted and I'm terrified about missing out although I know deep down that it's not going to make a huge difference.

Good luck with the DLA.

L

Hiya ladies

just an update.

Blue had chemo on Monday, week 1 again. His platelets were back to 297, so I reckon a holiday was what was needed. Funnily enough neither of us seemed to have the cough we've had of late whilst we were away, but sure enough it's returned, as soon as I got off the plane I coughed. Blue says it's the damp air in the UK at the moment.

His doctor is pleased with him, said he looks well and really he is, although the tiredness gets to him a bit and today he says he feels unwell, just yucky and reckons it's probably because he had two weeks without chemo but he says he's alright.

Nearly had an issue with the portacath again yesterday so I told them to use a different (larger) needly that the doctors in vascular access had used and hey presto, the red stuff appeared immediately.

We also asked if Blue could have the capecitabine tablets earlier in the evening. I'm sure you all know having them 12 hours apart is a bit difficult in the winter, waiting till 8pm for dinner, but the doctor really said no. He said Blue could have them 10½-11 hours after his breakfast ones but then he explained about the dose peaking after about 3 hours and if you take them too early the peak will raise higher and then you are more likely to get side effects like sickness and mouth problems. So Blue decided to stick at the 12 hours apart.

His CA19-9 was at 14 on 4th January 2010 and after this 3 weeks he has a CT scan on 22nd Feb.

Now, do any of you know foods that boost your platelets, I wondered so that if so, I will keep Blue stocked up on them next week (the low week).

Hope you are all well

Clair

Hi Clair

Glad to hear that the holiday did the trick.

Blue's CA19-9 is very encouraging - tell him to keep up the good work! Look forward to hearing what the CT scan shows.

I did a little research on foods and platelets. There are a few websites recommending certain foods and supplements but the consensus of reputable opinion appears to be that diet doesn't affect platelets apart from the usual advice re harmful foods such as alcohol.

Nicki xx

Dear All

just a quickie. Blue's platelets were at 83 today so no chemo. He said he could have told them they were low and that he felt like he had a hangover.

So it appears despite grapes, blueberries, oranges, mackeral and only one glass of wine yesterday on Valentines Day that you cannot do anything to bring them up!!! Does anyone know anything? What seems to work for you? How may sessions have you missed because of platelets.

I read in some book about herbs that Milk Thistle can increase platelets but you know me, I read the ingredients on a packet of Tunes and i've not bought turmeric beause of being so nervous.

Anyway, Week 3 will be next Monday, with a CT scan on 24th and back to clinic to see the doctor on 1st March and we will bring it up with the doctor as well.

He has been really zonked this chemo, probably till the Thursdays to be honest and has had stomach ache (noisy), and a bit of nausea this time.

I don't know what to think and what to say, but I'm sure Blue was fed up last week of me asking "are you ok babe"

Best Wishes

Clair

Hi Clair

The side effects of chemo are cumulative, which is why they restrict the number of cycles they will do at once most of the time. It sounds like Blue will appreciate the break!

Fingers crossed for the CT - let us know how it goes.

Kind regards

Nicki x

Hiya Nicki

thanks for your response. I'd forgotten what you said about the chemo effects being cumulative, I'd read through some of your previous replies to me to remind myself (think I may need to start a new Clair n Blue thread).

Blue was also told to stop taking the capecitabine tablets, as his neutrophils (don't know if spelt right) were at 0.5 and they like them to be at a minimum of 1. The nurse explained that this is the part of the white blood cell that fights infection and to keep at eye on his temperature (never in the last 6 months been above 36) and to make sure he stops bleeding quickly after taking his insulin.

Had a good chat with her and she explained about a well persons platelets being between 155-400. We were meant to go back Monday for Week 3/Day 15 but she said not to. She spoke to the Professor that Blue is under and he said it's a 28 day cycle and it shouldn't be messed with. She also said that as he had missed Week 3/Day 15 both this cycle and the last that maybe at the next clinic appointment we should talk about it. She said that some people only have Day 1 and Day 8 of the cycle and others have a reduced dosage.

Blue has a CT scan next Wednesday, 24th so nervous about that.

His hips have been hurting as well, stiff and I think he is worried about it, it's been about a month now. I think it may be the lack of physical activity, my hips feel stiff in the morning. But as he can't do any physical activity, because of the foot drop (which is getting better) and the cold sweats he has after any walking, there's not a lot we can do. Fingers crossed everything is good on the CT scan. I may suggest a bit of yoga on the WiiFit, a bit of bending and stretching.

I hope you and Ted are well.

Clair

Hi Clair

Yes, this thread is getting a bit long - although it's been good to accumulate the info in one place.

The consultants are generally a bit conservative about messing with the chemo schedule - understandable when you think what it does to the body. I think it will do Blue a world of good to have a "week off" anyway.

I was always worried about the CT scans too, until Ted's specialist nurse explained that it is only one of the tools they use to assess the state of play. She told me that if Ted was generally feeling well, not getting infections etc and had no more pain than before then the probability is that the scan will show either stable or reduced disease. I found that very comforting and certainly in Ted's case it's been proven true.

Both Ted and I found that physical inactivity wreaked havoc with our joints as well as general health - I ended up like a 90 year old walking down the road puffing and struggling. Any activity Blue can do will help with his hip - even sitting in a chair and bending the top half of his body from side to side (because the bottom half does move, even if only slightly).

When next at clinic you might want to mention this to them. They may be able to help with a physical therapist - even if it's only to get you on the right track with exercises that will help.

Ted and I are fine. Just the little "life grumbles" that we all have but right now I'm just counting our blessings.

Take care and let us know how Blue gets on.

Nicki xx