How are you all

Dear All

just wondering how you and your other halves are? Juliana, Ellie, Nicki (and anyone else I've not 'met' yet on here).

How was your Valentines Day?

Are your areas as cold as Anglia? It's freeeeezing here.

Hope you are all well.

Clair

Hi Clair

We're ok....just getting on with life. "Boring" is soooo nice after six months of running backwards and forwards for chemo and appointments. Ted doesn't have another checkup until May but we can contact them if we need to before then.

I'd also be interested to know how others are getting on, so friends old and new keep us updated!

Best wishes

Nicki x

(Hope this isn't intruding but just updated myself on the site and this seems the most appropriate link).

Trevor and I have just 'celebrated' our 1st milestone: 6 months since diagnosis following aborted operation to remove his pancreas and spleen. That was official diagnosis an if I really want to stretch things, the tumours were picked up on a CT scan in April 09 and in hindsight there was some 'activity' in November 08: so depending on how I feel I am either counting my blessings or feeling good about beating statistics. Our 'celebration' unfortunately consisted of a visit to the hospital so that Trevor could take his IV part of his GemCap regimen: Week 3 of Cycle 6.

Same story: platelets down to 73 so he could only have 75% of it. He is usually sick when he gets in due to nerves but he has also been vomiting since we got home although the water retention has subsided. I didn't realise that low platelets could make you feel so low so I've learnt something else from the site today. I was really hopeful that he'd have full whack as his platelets went up to 195 last week from 176 the week before: just goes to show that there is no pattern. His WBC are also at the lowest yet 2.6 so no wonder he feels so rough.

CT scan should be next week. In Trevor's mind chemo finishes after 6 cycles and then he will be having radio and then maybe another attempt at an op. I am trying to temper his optimism with reality without being too gloomy. He doesn't really read anything - just 'knows' it's not great. So today he was telling the receptionist that he doesn't need any more appointments so I 'suggested' that we make them 'just in case'.

The rest of us: I am recovering well from pyeloplasty and feel much better if not a little sore. The kids were really anxious whilst I was in hospital: used to Dad but not me and to have us both 'ill' was too much for them. My 6-year old doesn't really grasp what's going on: he did when T was in hospital and we told him about him having another type of cancer; he asked the 'big question' then and seemed to take it in his stride but as the months have gone on he now seems to think that it's all gone away. My daughter ( is another kettle of fish; constantly anxious and worried that her Dad will die like my aunt, 2 uncles and cousin who all died of cancer within the last 2 years so it's fresh in her mind. I felt so sorry for he when I got back from hospital. I was putting her in bed and she was really happy but then started crying, saying that she felt so happy that I was home and that everything was back to normal but then when she gets happy she thinks of Mummy and Daddy and then she remembers that Daddy's not well and things aren't normal. It's just so sh*t that an 8-year old has to feel so much angst.

This looks awful and to say 'but we are coping' seems a little weird but we are. Sometimes coping is sad and sometimes coping is managing to forget what is going on, getting on with things and being the best that we can but we are getting on.

I have my fingers crossed that T starts to feel better over the coming weeks and that the CT scan is promising or stable as I am not sure how he will cope if it's not but I'll cross that bridge when it comes to it.

Right...now that loads off my chest I will love you and leave you and wish you all well x

Hi Clair & everyone

Update on Brian is that he went to see the specialist today to tell him of his decision not to have any more chemo. Specialist said he looked extremely well when we first walked in and said that if it was him, he too would refuse further chemo, as he could see that not having it was the best thing for Brian. Now that he's made his decision, I think he feels a bit more relaxed and will get on with things, without having that battle in his head about what to do.

Brian asked him about his prognosis again and, after checking notes and seeing that it is 10 months since he told us 6-12 months left, he seems to think that Brian's PC is a slow-growing one. He didn't, or couldn't, update the prognosis, but he seemed pretty upbeat and thought that we should enjoy ourselves, no matter what time is left. That's exactly our intention, so we came away feeling not too downhearted. Also, Brian is having his Hickman line removed now, since he won't need the blood tests & chemo anymore, so that will make him feel a bit more "normal".

I think his biggest problem is still boredom. He's thinking of offering to help out at the hospice but that will mean months of waiting for a CRB check. He's restricted in what he can do, but needs to keep his mind occupied and get out of the house more, if he can. I'm lucky in that I work shifts, so am home at different times and during the week sometimes, but I work long hours inbetween when he is alone and can sometimes have too much time to think. We've got our daughters wedding in 6 weeks time though - it's flown by since she got engaged last Oct! I got my outfit last weekend, Brian got measured for his suit today and he's in charge of ticking off guests as they reply to the invite, so all the wedding plans do help to give him something to think about.

We've got a couple of trips planned away in our caravan in April, after the wedding, with our best friends, so that will also give us something to aim for, although I'm not sure how comfortable Brian will be this time round. We can only give it a try. We've had a few thoughts about a cruise in the not too distant future, too, so I would be interested in having a Travel section on the site to get feedback from others. Flying involves a lot of sitting around at airports whereas being on a cruise should be more relaxing, with plenty of things to see and do without having to plan it all ourselves.

As for the weather, Clair, yes it's also freezing in Yorkshire! We've had flutters of snow probably every week since the major stuff before Xmas. It was -2 here this morning with freezing fog and not a glimpse of the sun at all. I'm sure we'd all feel a bit better if we had some bright days and a little warmth.

My best wishes to you all and hope everyone is coping ok. Thinking of Gill, Trevor and everyone else who has lost their loved ones. Hope things are not too tough for you.

Love

Ellie

xx

Hi Ellie,

Thank you for your message, it's so good of you to think of me. I log onto this site fairly regularly because it's the one place that I can go where people understand how I have felt and continue to feel, and I can go some way to understanding other people's experiences. I am pretty upbeat although my loss lies heavy in my heart and I don't think I have yet come to terms with what happened. My Dad was very philosophical and I know that he wouldn't want anyone to feel sad about him. I think of him in a positive way and am fortunate knowing that he would want me to enjoy my life. My Mum isn't doing so well, she has been hit very badly by the loss of my Dad and she struggles but then it's early days.

I'm glad that Brian is comfortable and that you are both planning ahead. Take care Ellie and know that I'm thinking of you and Brian,

Gill xxxx

Dear All

thank you all for your replies and hello to Lily and Penny - no you are not intruding.

I will have a look at the sites for children too, my stepson is 18 and like most 18 year olds takes very little notice of us. I think with boys they only see what's in front of them.

Ellie - I hope you and Brian are okay and that Brian feels more relaxed. We know about the boredom too. We are both at home and sometimes I think that as well as the chemo zonking Blue some of the tiredness is boredom. And with limited fund to do anything, the boredom sets in quickly. We always make sure we do something each week and spent an hour wandering around a local antiques shop yesterday and came away with a couple in inexpensive pressies for forthcoming birthdays. We've also been recording things on our Sky box to watch to alleviate boredom. I don't really have any answers, neither of us are in a position to volunteer at the moment, but having worked for charities for the last 15 years I know that if you wanted your CRB check, your local police station used to be able to print it off for you, for a small fee (think approx £10) - maybe yours could to avoid a long wait.

I also think that our hubbys "think" if we are there or not. I know Blue does and he may not say anything for ages and then will come out with something, like today, saying his hips are hurting and he is worried (see my Clair n Blue thread) but I do think it's good for Brian to have wedding tasks to concentrate on, maybe lunch with a friend as well, I know Blue appreciates times with some of his friends alone without me.

We need to decorate our hallway, but I really do not want Blue to do it, all that stretching and so on. We wallpapered one wall in our bedroom before Christmas and he had to have a break after hanging 2 strips of paper.

Nicki - glad to hear you and Ted are finding "boring" "good", hope it continues. I know how you must have felt as Blue has just finished Cycle 6 of chemo. He practically runs out of the hospital after chemo.

TTFN

Clair

Hi all,

Sorry I have been quiet on the forum this week....but I have just returned from a holiday in Gran Canaria (without the kids!)

We flew with RyanAir (first time) and budget is as good as it gets. I booked for two suitcases of 15kg, but we only took one which weighed 20kg....so they made us buy a hold all from the airport shop so we could split our stuff into 2 bags.....instead of allowing us to combine the weight. How anal.

When we landed in Las Palmas....we got our bags, then went to get our car....and had to queue for 2hours.....'Hertz'....yes...it does....

The Hotel we stayed in was fabulous: The Gloria Palace Royal, Amadores....go check it out

We stayed half board....so my cancer diet when out the window. Although to be honest, even drinking one of my home made juices I would get pain and discomfort whilst digesting it - so a week of 'normal' food couldn't cause me that much pain.

The food was great....

For breakfast I started with fresh fruit with a little parma ham, fresh bread with brie...followed by a pancake with honey....or two

Evening meal (or lunch depending on what you would prefer) gave a huge choice, fresh salads, cold meats/fish, cheese, bread, olives/dressings, pasta, rice, chips, potatoes (gratin/dauphinoise), vegetables, local casseroles, veal, chicken, fish, beef, pork, rabbit, soup.....and then, the desserts......cakes, creams, puddings, fruit, mousse and icecreams.

I made sure I tasted a little of everything I fancied, and tried not to over indulge (very hard to do on the pancakes though....).

The weather wasn't the best unfortunately, storms, rain and about 3 days of sunshine, but we did manage to get some sun on our bodies and visit the beach. I got to sit down/day down and just relax and read......joy! We had the use of the spa at the hotel, so water therapy, saunas and steam room, warm pool with jacuzzi whenever you fancied it.

Health wise -

Can't say it improved in the sun, but then again - we didn't get much of it.

Every time I eat I get aches and pains in the guts about 40mins or so after....and it can last for hours. I had my morphine, paracetamol and aspirin to hand of course, but my saving grace was the trusty hot water bottle for sure.

I spent the whole week endevouring trying to 'go to the loo'.....my magic bag of enemas and glycerine suppositories could not produce anything! First thought was of the diet change, but I was pretty sure it wasn't that. Needless to say, by the end of the week I looked about 4 months pregnant - and felt it. I couldn't not eat, as I can no longer tolerate hunger pain like I was able to before the op.....so I just kept adding, but not getting rid of.

Then, on the Saturday we were to travel home.....everything started to work again......6 times I went to the loo......dotted throughout the day ofc, but regularly enough to make me worry about the flight and car journey home.....typical! Luckily all was well travel wise as things had settled down come evening.

I have no idea what is going on with my guts, but my guess is the tumor around the superior mesenteric artery has grown/spread and causing problems with the digestive journey.

I won't have long to find out, as I have an MRI scan Tuesday 23rd - and I guess about a week for the results and appointment. It's the first time I have felt that I don't really 'want to know'.....and that life would be happier in ignorance. However, that won't happen - I have to know so I can prepare/plan and decide what to do next.

As for Valentines....we both forgot to pack our cards - but we didn't mind as we were away. Feb 14th will always feel 'different' for me, as that was the day I had my tumor removed and my cancer confirmed. 2 years already, it's so hard to believe that time can fly by so quickly even when you are willing for it to slow down so you can savour every moment. On one hand I am pleased I have survived this far, and on the other hand I feel I am on the receeding part of the sand timer :S

Anyway, it is cold and we've had snow (apparently) in Wales - so whatever bit of tan I managed will be safely hidden under several warm layers, not to be seen!

Clair,Nicky,Ellie,Lily,Gill, Penny and whoever else is reading - kind regards to you all, here's hoping for a promising spring and a soul warming summer.

Juliana

Hi Juliana and it's nice to hear that you had a good break despite the weather.

I understand (oh, so well!) the 'perhaps I'd be better off not knowing' feeling but the truth of the matter is that our minds conjure up the worst case scenario anyway and you'll end up worrying even more eventually. Personally, although it's frightening to go for the results of scans and tests, I find the 'not knowing' harder in the end.

As for time....there's never going to be enough! I said to Ted yesteday that he had surpassed the first and second milestones (six months and a year), now he's just got to reach the next one and that whilst he was doing that he could count every minute as a bonus. When he was first diagnosed another pc patient in the ward said something which I thought was very cruel at the time but, in hindsight, was actually very true. He said "We're lucky because we get to know. There are many people who wave their partner off to work and never see them again...at least we have some time". I'm not sure I feel 'lucky' but I do understand what he means now.

So, I'll issue you the same challenge as I did Ted: Your next milestone is 2 1/2 years. All you have to do is get there! Then you can feel the Welsh sun on your face and plan how to get to 3 years!

Seriously, though, I hope the scan results are less worrying that you think. Do let us know and if you need a shoulder just shout.

Love

Nicki xx

Hi Juliana

Just to wish you good luck tomorrow, with your scan. Know you won't get the results for a while, but like Nicki says, sometimes knowing is easier than wondering what is wrong. You can then get on and deal with it.

Fingers and everything else crossed for you that things are not as bad as you think they will be! Let us know how you get on.

Love

Ellie

xx

juliana, just a quickie, hope today goes well for u, glad u had a great holiday, will catch up wen i'm at the computer (online on fone atm), clair

Hiya all

Juliana - I forgot you were on holiday, glad you had a good time. Blue also sometimes gets pain after eating and is 'windy' at the moment, as for painkillers, he just has morphine tablets (with liquid top up if needed) and laxatives everyday regardless and these do seem to help keep him 'regular'.

Anyway, I also agree with Nicki, I have to know because I know my mind will go into overdrive.

Blue had his CT scan on Wednesday, so hopefully results will be there on Monday and for him it's been 7 months since the first CT scan that showed what was wrong and 6 months since he's been having treatment.

Hope you all have a good weekend. We will be keeping busy waiting for Monday...

Clair n Blue