What next?

[Ellie]

Hi all

We saw Brian's specialist last week. It wasn't the best news.....the chemo seems to have stopped working and his tumours have grown very slightly. They still class them as "stable" at the moment. I was so hoping they would have shrunk, like after his last chemo sessions.

It seems there is one more option to take and that is another chemo combination - Capecitabine + Oxaliplatin. Apparently, a Professor at the top cancer hospital in Leeds feels this can be of help in some patients - around 20% will benefit. Has anyone heard of this? I am going to do some research myself shortly. The thing is that Brian, deep down, does not want to have any more treatment. He got to the stage of absolutely dreading and hating his last chemo sessions and this one will have more severe symptoms. He just dreads the whole thought of more treatment. I, obviously, have to respect his wishes but it is so hard to accept that he will refuse anything which may have a chance of working. On the other hand, neither do I want to see him suffer and go through something which will make him ill, when at the moment he has a good quality of life. I know it won't stay that way, but is suffering new chemo, both physically and mentally, really worth another few months of life, if that is what it may give him? We've both always said its "quality, not quantity", but you know, when it comes to it, part of me wants it to be quantity. How can I not do? I've spent the last 18 months fighting every inch of the way for him, never giving up, never thinking the worst, but It seems to be catching up on me now. I am starting to get scared, being tearful a lot, feeling so stressed about silly things. I think it's because it will finally be Brian's own decision what to do, whereas I have always sorted everything out for him and I will feel like I'm just sitting back and being helpless.

In the meantime, we are now planning a nice holiday away. We did a lot of caravanning last year, but that can still be hard work, especially when I do all the driving and organising, so this break will be - get on a plane and enjoy some sun, with someone else looking after me! I really do think I need it at the moment. Just trying to sort out some insurance and will be trying MIA, thanks to Trevor's recommendation, and I see Clair has used them also. Hope you & blue have a wonderful time, Clair!

Will let you know what happens next with regards to Brian accepting/refusing more treatment. Hope everyone else is as good as they can be.

Love

Ellie

x

[Juliana]

Hi Ellie,

Sorry to hear the chemo is no longer working. It must be very hard for both of you, but I do feel for Brian with regards the treatment. I probably have not had as much as he, and don't want anymore. I would also be wary of how much extra time they think certain combinations will give.....2 months sounds extremely generous....my oncologist, plus the one I had a 2nd opinion with where quite specific in the quantity of extra time given, which was 2 weeks. I was advised if I were to try the harder hitting chemo's that have not really shown to have any benefit on Pancreatic Cancer but are the only alternatives available, that my quality of life would deteriorate and my side effects worsen, for a measly 2 weeks. The drugs they suggested for me where Cisplatin and then Tarceva, but neither oncologist spoke highly of them. Not sure about Oxaliplatin.

Did Brian try out Turmeric at all? I have been taking it, but think I have not been taking enough, so will try and up my dose.

I've also bought some Essiac tea (flor-essence) to try out - immune booster and anti-inflammatory, some say it can do more.

I will say if you can get yourselves in the sun for a week I am sure you will notice the difference. Last year I had been in pain for months, not sleeping and having to take morphine....all that changed after 4-5days in Menorca, in the sun. I have no idea what happened, but the effect lasted for months and the pain was gone before I started any chemo treatment. It's only the past 6 weeks or so I've had my aches and pains return - I too am considering a week in the sun, for medicinal purposes - literally! (btw, I found a week cruise on the Nile for £399 4* all inclusive, flights from Gatwick and 10 excursions included to places like the Valley of the Kings and the Temple of Karnak - here's the website if you are interested! http://www.africansafariclub.com/nilecruises/bookonline/?action=search&searchType=h&duration=1&location=3&code=0&da=LGW&dod=2010-01-25&adult1=2&child1=0&sort=price+ASC&marketing_code=)

Good luck with the holiday hunt x

Juliana x

[clair2305]

hi ellie, sorry to hear brian is not so well, honestly i want blue to try anything but yes i think you should do some research, maybe see what clinical trials are coming up, blue was on telovac trial but when his pc showed progression - which turned out not to be progression cos of delayed chemo start - he was taken off trial, but telovac is looking at developing a vaccine to control pc, you will have to talk to the doctors and ask about clinical trials coming up, even if it may mean another hospital. bags packed and a hand luggage bag full of meds and letter from gp - anyone had any experience of airport security and meds? go tomorrow morning, best wishes to you

[Nardobd]

Hi Ellie and I'm sorry to hear the news. I know that, like me, you like to do your own research but the Cancer Research pages are as good a start as any: http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/oxaliplatin-and-capecitabine

I know that we all talk about quantity versus quality and, of course, none of us want our loved ones to "exist" for our benefit when they are in serious pain or bed-bound. Short of that, though, I think we all find it hard to work out where the line should be. Both you and Brian have been through a lot I know but although it's ultimately Brian's decision you have to have some input too because you will be living with the consequences and supporting him. There's no "right" decision, just one that you can both live with, so this is only a suggestion but would it be worth agreeing that Brian should try one or two treatments just to see what side effects he has? Who knows - he may be lucky this time and get away lightly. Whatever the two of you decide, it's important that it's right for both of you.

It's so hard to keep fighting and keep positive and it takes an awful lot of energy, so I'm not surprised that it's catching up with you after all this time. I think a break would do you the world of good and hope you find somewhere fantastic to sunbathe!

Take care and don't forget I'm only on the end of the phone!

Nicki xx

[Ellie]

Hi, and a big thanks for everyone for replying to my post. Thanks also for the links provided.

Brian spoke to the doctors at the hospice he attends once a week and was given info on what likely side effects he could have from the new chemo, which they said could be double the effects of a single chemo drug, which makes sense. I can read everything going, but I think Brian is just at the point of not wanting to know about any more treatment, full stop. It's getting hard to even talk to him about it now, so I will leave it until we are back from our holiday.

Let's hope a bit of sun and relaxtion helps us both to feel better.

Love

Ellie

xx

[Ellie]

Hi all

Well, holiday is booked. Going to Tenerife a week tomorrow. Seemed best place, as not a long flight time, in the low 70's so not too hot/cool and we were told it had the best hospital facilities out of all the islands in the Canaries (not that I hope we need to use it).

Brian got his insurance from MIA online - £49 for 7 nights cover. One company quoted him £500!! I've done everything I can to lessen the hassle/travelling time - ie booked valet type parking at the airport, so we don't have to endure queuing up for shuttle buses etc. Staying over at a hotel the night before we fly, so less rushing before the flight.

Brian has a detailed print out of all his medical history + current medications etc from the hospice (they are brilliant at helping out with all kind of things) and I have read all the security requirements about not taking liquids etc on the airport website. My only concern is that the new x-ray procedure will not cause too much embarrassment for Brian with him having his Hickman line in! It's bound to show up, so I hope we won't be pulled in and questioned about it too much.

I think we are both so ready for a break - we seem to be bickering a lot lately, which is something we never normal do. I know we are both very stressed at the moment so hope that a change of scenery and some warmth will help sort us out a little.

Hope Clair and Blue have a great trip!

Love

Ellie

xx

[Nardobd]

Great news Ellie - I hope that you and Brian have a wonderful time and am sure that Clair and Blue are loving the sunshine and relaxation.

I'm sure the security at the airport will be fine - you sound like you have everything under control, as usual!

Nicki

[gillvb1]

Hi Ellie,

I'm sorry that things have gone awry for you and Brian but you must be so pleased to have your holiday booked. You saying how stressed you feel and how niggly you've both been - it's natural - such a stressful time for you both and I don't know whether it's possible to put that stress aside but you could try. I realise now how awful I was when my Dad was ill - I was snappy and not very nice to be around - I'm like a kitten now but that's the fallout of the whole rollercoaster I suppose!

Take a deep breath, chill and enjoy your exclusive time with Brian in the sun. Lots of Love to you both, Gill xxxx

[Juliana]

Hi Ellie,

Glad you have your holiday booked. I am sure the hickman thing will be fine, surely there are many who travel with one fitted - worse case scenario - you may make BBC news with 'terrorist threat level increased to: any second now!' Only joking!

It's natural to get a bit snappy around each other......I threaten my husband with divorce on a regular basis....it's almost part of our routine. All I can say to you is, Brian is and has tried very hard to fight this disease.....be proud of what he's done and understanding of what he would like to do, trust me it makes all the difference when your partner supports you all the way.

All the best and 'Bon Voyage!' xxx

Juliana

p.s. bring back some sunshine for us!

[Ellie]

Hi everyone

The holiday was wonderful! No problems whatsoever, the airport was fine, no delays, hotel wonderful, food excellent. We could feel the stress and tension starting to disappear after just a few hours there! Looking out at a beautiful blue sea and sky, feeling the warmth of the sun - yes, SUN!! Something we haven't seen much of here for a long time. We enjoyed lots of strolls along the sea front, sat in cafes and people-watched and enjoyed a few drinks in the evenings! It really was excellent. We didn't mention the "C" word at all and Brian seemed to have more energy and was so much happier with new things to occupy his mind.

If anyone has the chance to get away for a few days, it really does help!

Sending my best wishes to everyone and hoping you are all doing ok.

Love

Ellie

x

[chinup]

Dear Ellie

It was so nice to read that you and Brian really enjoyed your break. I am a huge believer in adding life to days rather than days to life and you two have done exactly that. I must say Brian did incredibly well to get through all the flights/airports - most able bodied people find it a drain! The sunshine will have done both of you a power of good. When my mum was ill with pc she refused to go anywhere or do anything - even banned the grandchildren for fear of getting an infection. In hingsight it was a huge mistake and I wished we had done more to persuade her to concentrate on the quality of her life. But at the end of the day it is down to the individual. And I hope that you will take great comfort in the fact that the two of you made the effort and did what you did. I'm sure that Brian will have more energy and renewed spirit to face whatever comes next.

[gillvb1]

Hi Ellie,

so glad that you and Brian had a fab holiday - I think that most of us forget that life goes on in warmer climes! Spring will soon be here and I have to say that I've booked up for and 'all inclusive' in Turkey for early May!!! xxxxxxxx

[Ellie]

Hi Gill

Nice to hear from you! I've just posted something on another section, with a small message to you, but it seems you are feeling pretty upbeat and looking forward to better weather and a lovely holiday in Turkey!

Thanks for keeping in touch. Take care!

Love

Ellie

xx

[Ellie]

Hi everyone

How are you all doing? We've had some worries this week. Brian started to suddenly get a lot more pain this week. It seems to be mainly in his shoulder, around his ribs and arm on the left side, plus he had shooting pains down his legs one night too and some tingling in his fingers. He saw the doctor today who gave him some new tablets and sounded a bit concerned about the tingling, but he has keep a diary of when and where he's getting the pain and go back on Monday. He will also see the doctor at the hospice on Tuesday.

Our first thoughts are - is this it? Is it all going to start going downhill now? He's done so well since he stopped his chemo, it was almost like we were getting complacent that things would stay good for a long time, but deep down I know it's just the "calm before the storm". I'm trying to stay positive and hope that it's just a case of upping his morphine or pain relief because the pain is coming through without the chemo there to stop it.

Our daughter's wedding is in 3 weeks time, so I will pray that he can get his pain relief sorted out for then and that it's just a "slight breeze", rather than a storm brewing up.....he just HAS to be ok for that day. We're going down to Cornwall to see our daughter this weekend, taking her wedding dress down (which she ordered up here) and finishing off a few things with her. We tried to make a start on Brian's speech a week ago, but it got a bit emotional and we haven't done anything more with it but will have to get on with it soon.

Hoping everyone else is doing ok and not having too many problems.

Love

Ellie

xx

[Nardobd]

Hi Ellie and I'm sorry to hear that you've been having some worries, particularly so near to your daughter's wedding.

The tingling in Brian's feet might be from any number of causes. These range from anxiety at one end of the scale to signs of diabetes and nerve damage at the other. Inevitably you're going to assume the worst, so this page has some info on the more serious issues

http://www.cancerconsultants.com/numbness-and-tingling-peripheral-neuropathy.

However, do remember that this isn't the only cause. It might be something completely innocent! I hope you get some answers this week.

It is horrible to be in our position - we're forever looking for the first sign of the downward turn. Ted's getting a little more tired at the moment and it's worrying me to death! Normally I'd just think he needs a change of scenery and a break but now everything is sinister and frightening. Like you, I'm trying to stay positive and I keep reminding myself that cancer isn't the only thing going on in our lives.

I hope you had a fantastic weekend with your daughter and that the wedding preparations are nearly there. If Brian needs some inspiration for his speech there are a lot of websites that can help, such as http://www.howtobooks.co.uk/family/wedding-speeches/father-bride.asp and www.thefatherofthebridespeech.com. If nothing else, it will give some suitable one-liners!

Let us know how Brian gets on next week.

Love

Nicki x

[Ellie]

Hi Nicki

Thanks for your concern and the links to more info on the tingling - and the father of the bride speech! You are amazing, Nicki - you have just as much going on in your life, with your worries over Ted, yet you still manage to help everyone else out in such a positive way.

We had a good weekend with our daughter, but the journey there and back wasn't easy for Brian. He got some new painkillers, but the chemist didn't have as many as he needed straight away, so he had a reasonablly good journey down with the painkillers working, but coming home was bad for him, as he didn't have enough left. There were so many roadworks, stops/starts and bumpy roads are a nightmare for him these days. At least inbetween, we had some time out in Plymouth and my daughter got the final bits and pieces she needed. We also went to see the hotel where she is getting married, so that was great.

Brian is seeing the doctor at the hospice tomorrow, so hopefully they will get him sorted out. I think the new painkillers will work once he takes them regularly but at the moment he is worried that they won't and he will be left in pain. I have to convince him, and myself, that this won't be the case because it would be so hard to see him suffering constantly. If his pain is controlled, he will be a lot more positive. It was hard trying not to let our daughter know how things have changed because she will only worry more and she can do without that just now. We just need to keep things under control for another few weeks (and obviously a whole lot longer if possible!).

I hope Ted's tiredness isn't anything to worry too much about. We've both been so positive upto now - we have to keep on hoping for the best, don't we?

Thanks very much again for the links. We will definitely have to get down to sorting that speech out now!

Love

Ellie

xx

[Juliana]

Hi Ellie,

Sorry to hear Brian is not feeling the best, it may not be the start of the end like you feared, it could just be the stress of the wedding coming up - stress can cause a multitude of ills, even if he doesn't show he is stressed!

If the painkillers don't work - talk to the palliative care team about Fentanyl patches. There are minimal side-effects, and the patches stay on for 3 days - so not as many pills to pop. The only side effect which seems to affect users over the age of 60 is 'nightmares' - believe it or not, apparently it causes quite vivid bad dreams and so some over 60's don't like to use it.

As for the journey, can you get a train instead? Or even a flight? I know the cost will be more, but it may be worth it's weight in gold if it makes the whole journey experience much easier for you both.

With regards the speech....I know what you mean about getting emotional, even now I still cannot bring myself to write a letter for my daughter for her wedding day, all my kids birthday cards, and just special notes for certain times of their lives - it's too painful.

Anyway - I hope Brian shows some improvement and that he can concentrate on his speech , and that you both enjoy the run up to the big day.

Take care,

Juiana

[Ellie]

Hi Juliana

Thanks for your message. Brian has not had a good week. He was prescribed a higher dosage of OxyContin (think he's on 30mg twice a day), he's had OxyNorm and has also used Oramorph in the past for breakthrough pain, but it's got to the point where nothing seems to have a lasting effect. He's getting a lot of back pain, higher up, near his shoulder blades. He's keeping a record of when he takes his medication and when the pain starts etc, so hopefully when he goes back to the hospice on Tuesday they can see what is happening and regulate the painkillers to work better. I will ask him to mention the patches you suggested, as it maybe easier than taking lots of pills, as you said.

We're tied to travelling by car down to Cornwall because we're taking my parents with us and my dad has a mobility scooter. We also need transport as we're going to and fro between my daughters house and the hotel where she's getting married. As long as he is reasonably comfortable, he should be ok once we get down there - it's just the 8-9 hour journey there and back.

Definitely going to sort his speech out today, too. I want it written and finished with but I suppose it will still be on his mind - even if he was fit, he'd still be thinking about it.

Thanks for your reply. Have posted a message on your thread and appreciate you finding the time to write, even though you are going through an awful time at the moment.

Hope everyone else is ok.

Love

Ellie

xx

[Ellie]

Hi everyone

Well, we leave for Cornwall tomorrow, ready for our daughter's wedding on Friday! I'm feeling excited now, although I've been worried about Brian since last week. He was still getting a lot of pain, particularly in the evenings, but after another visit to the hospice today, they've given him something else to try and it seemed to work today, so far. They've upped his dose of his other medication too, so fingers crossed he can now relax and enjoy the big day.

I know once he's with all our friends and family it will at help to take his mind off things and I'm sure he will have a great time. This time last year, I really didn't know if Brian would still be with us, so it is going to be one very emotional day for us all. It certainly has been a rollercoaster of emotions and even 2 weeks ago, I began to think he was going downhill but here we are, about to have a very special family celebration and I am so very thankful that he will be the proud dad, walking his daughter down the aisle.

I'll let you know how it all went next week but in the meantime, I hope you all have as good an Easter as possible.

Love

Ellie

xx

[Nardobd]

Ellie

I was thinking of you today - I'm sure that everything went really well and we look forward to hearing about it next week.

Nicki x

[gillvb1]

Hi Ellie,

You must have been under tremendous stress lately but finally the big day has come. I hope it went well for your daughter, Brian and you. Be sure to tell us all about it. Love, Gill xxxx

[Ellie]

Hi everyone!

We did it!! We managed to have the most perfect day for our daughter's wedding! It was just wonderful!

The journey down wasn't too bad for Brian, although he was still having some pain. Thanks to an incredibly caring doctor at the hospice, who gave him her personal mobile number, rang him the day before the wedding to check he was ok and adjusted his pain relief, Brian managed to enjoy every single moment of the big day and had no pain at all. It was such an emotional time at the service and especially at the reception, when he read his speech. I looked around the room and there were so many people in tears and Brian became very choked up, but he managed to finish and the tears turned to laughter in the end. I cannot tell you how relieved I was that everything worked out so well and, most importantly, Brian was there to walk our daughter down the aisle.

After all we've been through in the past 21 months, someone gave us a break and, no matter what, I can always look back now and remember what a wonderful occasion it was with our daughter beaming with happiness, Brian the proud Dad, surrounded by our closest family and friends,

Thanks for all your support.

Love

Ellie

xx

[Nardobd]

Oh Ellie, I'm so happy for you all that it was everything you could have wished for. I'm sure your daughter looked radiant and Brian must have been the proudest Dad ever! I know that you supported everything behind the scenes and I'm so pleased that you had the reward you deserved - a most wonderful day and some very happy memories.

Love

Nicki x

[LilyG]

I am sure that there were as many tears as smiles on the day but I am so pleased that you were all able to enjoy it together.

The photos will be extremely special x

[Ellie]

Hi everyone

Hope things going ok for you all.

Just wanted to share what happened today. It was my birthday and also a year to the day when the doctors told me that Brian's cancer had gone to his liver and was now terminal. I got upset opening my cards, thinking this could be the last birthday I ever get to share with him. We got engaged on my 19th birthday, too, so it all became quite emotional.

Anyway, I was getting ready for work when I suddenly knew I had to spend the day with Brian instead. I rang work, explained, and fortunately got the day off (if I'd been organised, I'd have booked it off weeks ago!). It was a lovely sunny day, so we decided to go to the coast (Bridlington - not very exotic, but it's flat for walking). The sun was shining, it was 16 deg, and we thoroughly enjoyed our little outing! We had fish and chips, then a walk on the prom. Later, we shared this huge ice cream concoction in a double dish, one pink, one blue, with 2 spoons, called an "Amore" (Love) and had everyone looking at us in the ice cream parlour!

It really made us both feel good to be out in the sun, enjoying being together and I will have some happy memories of a nice birthday.

Make the most of each and every day!

Love

Ellie#xx