Latest on Chris

[Trevor]

It is a few weeks since our first update on this forum, & 8 months since Chris was diagnosed & given approx 4 months survival! So, we’ve doubled the original prognosis which is a really great result & better than any of us could hope for.

Today we have had a meeting with her oncologist, & it’s fair to say we have had mixed results. The bad news is that there is the liklehood that there has been spread into Chris’s lower back (in a vertebrae) & also in her upper right femur. To quote the oncologist “there is a change of texture & density”. He has told us to closely monitor any pain in those areas & report immediately any increase (currently Chris has none, she has had one day of back-pain about 2 weeks ago).

The other “bad” news was that Chris’s Cancer Count (Tumour Marker CA19-9,) which is provided by blood test, has increased up to 803 from below 100. However, he thought this was possibly due to Chris having had no treatment for three weeks (until today) & he will monitor closely after this next 3 week cycle of treatment. She will also be due another CT scan after this cycle.

This must all be counter-balanced by the fact that Chris is currently in fine form (always, please, consider this to be relative - she is not strong enough to do much in the way of household chores, potter in the garden or walk more than about 100 metres) and compared to many people is able to live a pretty “normal” life.

Since our last update, our latest little jaunt was to visit my cousin Derrick & his wife Yvonne in Brittany for five days w/c 7th Sept. We had a wonderful time, the weather was splendidly warm, the skies blue & the hospitality outstanding. We visited several places around Tregunc, including Quimper, Loncronan, Port Aven & Port Maniche & enjoyed some lovely meals from Yvonne plus a night out at a local restaurant. Chris handled the ferry journeys Plymouth – Roscoff really well (we had a cabin both ways) & so yet another successful break! 3 Pictures attached.

Chris coped with her 3 treatments in August pretty well, her legs only marginally worsening & not reducing her to the wheelchair. She became increasingly tired over the weeks, but nothing that she couldn’t handle.

We are currently planning a trip to Ireland in October to visit our friends, subject to Chris being comfortable with another ferry crossing. Then, in November (25th) we’re off to try P&O for a 13 day cruise to the Canaries & Madeira in order to give Chris some winter sunshine before Christmas. Nothing as grand as our Grills experience on Queen Victoria but we’re interested to compare!

As always, we have given a big thank you to all our friends who are providing such support & guidance as we travel this awful journey together. It is them who are making the “the miracle” take place & helping inspire Chris every month. We have asked them to keep the emails etc coming, & their prayers & positive thinking remain central to sustaining the battle.

I worry that Chris is doing so well that some big black cloud is around the corner & will smash us down. Who knows? Any advice on where the road might lead is always welcome - bad as that information may be.

God bless & take care everyone

Trevor

[Nardobd]

Hi Trevor and it's good to hear from you again.

I'm glad to hear that Chris is doing well, even in a relative sense. It's so important that she's able to live a reasonably 'normal' life and keep her morale up. The 'technical' issues of changes in bones and the tumour markers just give her something to work on!

I'm so pleased that you both enjoyed the trip to Brittany and hope that you enjoy the forthcoming sortie to Ireland too. The thought of winter sunshine before Christmas is so very tempting - I don't suppose there's room for a couple of stowaways?!

I agree that good friends are essential during this awful time and I'm sure that everyone is praying for Chris. I'll keep both of you in my prayers too.

All of us on this journey feel the sword of Damocles. I've always been the type of person who anticipates problems and deals with them before they arise, which is impossible right now. According to Ted's consultant he has exceed expectations and the water is unchartered from there on - it could be months or years before his tumour "gets busy" (the consultant's phrase) again. There are second-line therapies available so even then it's not a cut and dried scenario. We're concentrating on enjoying each day, as I know you and Chris are.

Take care

Nicki

[chinup]

Dear Trevor

I've just read your post about Chris's progress and I wanted to tell you that the overriding impression I came away with is that you are both doing extremely well. After losing my first husband and then my mum to cancer, (mum had pancreatic), I have learned that equally important to any medical test results is to measure the progress of this disease in terms of the things that you are able to do despite it. It's just wonderful that you are getting away on holiday and are planning further trips and I am sure that they are doing Chris a power of good, that plus the good wishes and kindness of your family and friends.

The medical updates, good or bad, are what they are. We were given what appeared to be promising results from scans, etc, only to be blindsided by something unexpected a week later. On the other hand we were told that there was possible spread of the disease, which later turned out to have been there for a while, long before someone thought to mention it and was what had been causing unexplained and worrying symptoms. And then there were many things that they didn't tell us at all.

I've seen cancer dealt with boths ways - one the way you are, using every possible opportunity to make the most of a precious life and one where everything was put on hold for the duration of the illness. Needless to say, the memories of the good times we stole outshone anything else.

Keep going, keep doing what you are doing and Chris will stay happy for some time yet. Enjoy planning for your trip to Ireland and your forthcoming cruise!

[clair2305]

Trevor

Just read the latest on Chris and am glad you enjoyed your trip.

I don't know what else to say really, being a PC virgin still sometimes I find reading stuff too much, I have to keep telling myself that Blue is unique.

There's more on my other post, but on Monday we explained to the doctor that the nerve-block hadn't worked and that when Blue dropped his MST down his top right leg, which had been developing the same numbness as the lower parts of both legs, was painful. Blue said it felt like it was burning but not hot to touch. The doctor asked if blue had had a MRI and mentioned bone cancer, which kind of threw my mind into a frenzy. The doctor looked through the notes and through the MRI findings and said it was ok, his bones were fine. But I also think that Blue was worried when he got the pain after lowering his MST as was I.

We are hoping to become jet setters, well UK bound like yourselves, which is why we want the campervan. Hoping to go to Brighton Breeze next weekend to look at some, but at the moment, although we do get out most days, it's only for a short while and our finances don't permit much at the moment and there's only so many times u can go certain places...whereas when we get a campervan and Blue is on his week off, we'll b off.

Signing off now, remind me to tell you about being pulled over by the police, it was hilarious and I'm sure all of you will giggle at it.

Clair

[Trevor]

Hi Everyone

It's late & the Jameson's is my friend tonight.

Chris is doing Ok, had three more Gemcitabine treatments since last post (with last two reduced dosages). I guess "stable" is the word. Chris is permanently tired, unable to do the most basic household stuff, which drives her up the wall!

Next CT scan is 12th Oct, then another meeting with oncologist on 16th.

I just felt that I needed to write something - we're trying to plan Christmas, and that shows great optimism, - but do you other guys feel utter frustration at not knowing where this goes? Our oncologist is great, but even he won't (can't?) say how we progress.

Also, with the greatest respect, I'm sick of reading about "cancer cures".They are all b****cks". And all the money to breast cancer - what about PC, arguable THE most aggressive cancer of all?

I apologise if I upset anyone, but when you have no control (as none of us do) the frustration is unbearable

Trevor

Sleep tight everyone - & believe!

[Nardobd]

Hi Trevor

I empathise completely with your frustration. The hardest lesson for me to learn is that we have to take one day at a time. All of our plans now include the phrase "all being well" and I hate it. I was the kind of person who planned everything and organised events such as holidays and christmas months in advance and had everything under control. Strangely, only a couple of days ago I said to Ted that the worst thing for me was the destruction of the illusion that our destiny was in our own hands.

Last time we saw the oncologist I asked about progress etc and he simply shrugged and said that Ted had "exceeded expectations". I'm very grateful for that. However, it doesn't make for peace of mind.

Yes, I'm sick of reading headlines which promise a 'cure'. When you read the entire article it becomes clear that the scientists have discovered something which may lead to something else which may eventually, in some way, lead to a cure in a number of years time. That doesn't help us at all and I know now not to get my hopes up when I see the headlines.

As for research funds, I can see that there are a couple of reasons why other cancers might be targetted as a priority: firstly, they are more common; secondly, they are easier to combat. That doesn't mean I agree with the allocation of research resources and, though tragic, Patrick Swayze and other famous faces who had/have pancreatic cancer will heighten the profile of the disease; hopefully leading to increased funding and research. There is a PC awareness week next month and I'm hoping to get involved in some way, all being well (that damned phrase again!), because it's only by keeping PC in the public eye that we will divert funds into research and treatment.

I'm glad to hear that Chris is doing ok, albeit very tired. You're obviously providing first-class support!

Kind regards

Nicki

[Ellie]

Hi everyone

I think we all share your frustration, Trevor. Having to wait and see how things turn out is the hardest part. The doctors can only tell us so much, as each patient reacts differently to treatments, but it's the not knowing that is the hardest part. I think we all feel the situation is beyond our control now - Chris is still undergoing treatment, as is my husband. Nicki's husband has done well, finished his and now it's a wait and see game for them. Sorry to hear Chris isn't too well at the moment. It's so very hard to see them unable to do simple things that they used to.

Upto the last scan, I was so very hopeful and positive that Brian would do well. Now he has this 2nd met in his liver, I'm finding it much harder to cope. I'm frightened of when things will start to go downhill. I'm conscious of the months going by and, like Nicki, can't plan like I used to with the same confidence.

Brian had to be admitted to hospital on Friday night. Had his chemo on Wed and later that same day wasn't well. He was better next day, but by Friday night had a temperature again and when it got to 37, I rang the hospital, took him down and he was kept in overnight. Thankfully, he didn't have an infection and it was either just the chemo making him poorly or he'd had something viral. Anyway, he was fine by Sunday. Just worried that he will have the same problem tomorrow with his chemo. We're going away on Wed with friends for a few days and are really looking forward to that, so hope he won't have any serious problems to stop us going.

I am planning for Christmas. Something tells me this could be his last....I truly hope not, but I will make sure we have the best time anyway. It's also his birthday just after, so another celebration to make the most of.

Sometimes I don't want to write on here anymore, but reading how others are coping, or not coping, does help me and it makes you feel less alone.

Nicki - not surprised you are getting involved with the pancreatic awareness week. If anyone was going to get involved, it would be you! You really are such a pro-active person.

If we could see into the future, would it really help us? Would we really want to know what lies ahead? I know its frustrating not to know, but is the alternative any easier?

I usually say - keep positive and strong. But tonight, I will say....keep patient.

Best wishes

Ellie

xx

[Trevor]

Hi Ellie

Thanks for your thoughts & your confirmation that frustration is part of the deal! I hope Brian has been ok for your break away with friends. I'm certain that the constant breaks & holidays that I plan with Chris have been crucial to her dealing with her PC so well. Also, we have so many friends around the world all praying, distance healing & sending positive vibrations that I have to believe that their contribution is important.

Like you, I worry coping when things go downhill (as they certainly will, I suppose). Have you got MacMillan involved yet? We have a visit every month, just to help develop a relationship for when they will be really needed. Our friend is about to lose his wife after nearly 3 yr battle (breast, into bones, into liver 4 weeks ago & then a rapid & sudden decline) & speaking to him yesterday was really upsetting because of knowing it's all coming our way as well.

Again like you we're planning Christmas. I've always had a "bad" feeling about this - Christmas, Chris's 60th on 27th & our 42nd Anniversary on 30th -, it's all too conveniently situated at about 12 months since this is all began, although Chris set Christmas as her minimum survival target back in January when diagnosed!

It can be difficult on here, reading of others difficulties, but I have also found it inspirational to read of others successes. And it is really good to learn more about the PC enemy.

Thanks for you message, really appreciated & I hope Brian continues to win his battles.

Stay strong - & I'll be patient

Trevor

[clair2305]

Trevor

Just read the latest on Chris and my wishes are with you both.

Ahh, the Jameson's...I wish I had my friend Jack Daniels here at times. As for Christmas, normally I'm so organised and I'm Christmas mad, spend all year saving for it, spend too much on people and buy too much food, but as we've gone from both having good jobs with good salaries to benefits, that's all out the window. And December seems to be the same for us as it is for you, our 2nd wedding anniversary on 10th, Blue's birthday on 18th and Christmas the following week.

And hey don't worry about upsetting anyone, we all feel like that at times, well a lot of the time and I can tell you this week is one of those weeks where I'm finding it hard myself

Clair

[clair2305]

Trevor

was just wondering how things were with you and Chris....haven't seen any posts from you for a few weeks.

Clair

[Trevor]

Hi Clair & everyone

Chris has just finished her latest batch of 3 chemo treatments - she has now had 21 in all - and having been very stable over last four months since she was wheelchair bound with her tender (slightly swollen) legs, the gemcitabine has bit her back again this weekend!

Although her legs are no worse (which means tender but walking short distances) , it has hit her arms. Both arms are very tender, painful & her wrists & fingers are swollen. She is in quite severe pain and cannot bear to be touched, she struggles to lift a spoon to eat soup! A real b*****d after the recent past.

Has anyone else encountered these side-effects? There seems to be nothing medically to be done, except stuff down Oramorph etc which is no answer & doesn't really work anyway, and stop the chemo which is where we are heading. Chris has two weeks off anyway but any suggestions are welcome.

Prior to this weekends setback, Chris has been doing great - eating pretty well (my cooking has really improved!), doing lunches with friends etc. We're looking forward to 2 week cruise around The Canaries at end of month, so we want her sorted out again by then.

To all our PC contacts here, keep smiling & keep up the fight. We're here to help each other.

Trevor

Report on trial questions with her oncologist under other threads.

[Ellie]

Trevor

Can't offer you any help but wanted to say how sorry I am to hear that Chris is suffering from the chemo so much. It must be awful for you both - Chris going through it and you having to see her like that. It's so unfair, isn't it? Something which should be helping her is making her worse.

We ARE here to help each other, but sometimes you wish you could do more for people. All I can do is say that I am thinking of you and sending you my best wishes. Hope you get something sorted so you can go and enjoy your cruise.

Take care of yourself, as well as Chris.

Love

Ellie

x

[Nardobd]

Hi Trevor and I'm sorry to hear the latest developments. As Ellie said, sometimes we wish we could do more than sympathise and send our good wishes but I have no experience with the side effecs which you describe.

I do hope you get something sorted before your cruise so that you can both relax and enjoy yourselves as much as possible. In the meantime please forward our sympathies to Chris and tell her that we're thinking of her. Don't forget to look after yourself too!

Take care

Nicki