How long after a Whipple does chemo start?

[gillvb1]

Hi Ellie and Lorraine,

Nice to hear from you both again. Ellie, you mustn't feel guilty about your news - I am very hopeful that my dad's prognosis will be good and if it is I, like you, will place a comment on this site to show that PC isn't all doom and gloom. Fingers crossed for a clean bill of health for your husband - do let us know.

My Dad is still progressing well. He took my 5 year old daughter out for the afternoon last Saturday then we had fireworks and supper. By 9.30 pm he looked ruined but that's hardly surprising considering the exertion on his body.

My Dad hasn't lost too much weight, perhaps 2 stone but his appetite is good and he's snacking between meals in order to tot up the calories. He is a liitle sore across the abdomen but looks the picture of health. We haven't had any information about whether or not chemotherapy will be offered although prior to his Whipples it was on the cards. I will get back to you after 7 November when my Dad has his post operative chat with the consultant. Very Best Wishes, Gill xxxx

[gillvb1]

Hi, my Dad had his post operative consultation today and was told that the Whipples operation had been a complete success and that the tumour had been completely removed. We learned that the tumour was malignant but that they got it all so that is something. My Dad will start chemotherapy in the next week or two to erradicate any rogue cancer cells. Having said that, my Dad has made a fantastic recovery from the Whipples and looks fit and well. Lets hope he can stay strong through the chemotherapy. Love, Gill

[Ellie]

Hi Gill

That is such good news for you all! Well, not that the tumour was malignant, of course, but that the operation was a success and it was all removed.

He seems to have done amazingly well to recover so quickly from the Whipples - it's such a major op and he only had it a month ago! Let's hope he gets on ok with his chemo now. My husband has just had his 4th treatment and had some nausea for the first time, but the tablets he was given settled it down. That's not much to put up at all, so we're grateful for that.

I really am so pleased for you! )

Love

Ellie

xx

[gillvb1]

Ellie,

Thank you so much for your support. I've waited 4 weeks for news and was really hopeful that the tumour might be benign. Now that I know it was malignant I feel quite down but as you say, they removed it all and that is great news isn't it. It's good to know that you husband has managed chemotheropy without too much discomfort, hopefully my Dad will cope well too. I feel so sorry for my Dad (and for you and your husband)- like anyone who gets PC it's so unfair.

My Dad's progress has been fantastic. He took my little girl to the Sea Life Centre this afternoon and he was fit and well when he dropped her off which is more than I can say for me when I've taken her out!! She understands that her Grandad has had a big operation and is very gentle with him. She tells him that she is happy to go home if he feels tired!

Your message is really (really) appreciated. My good news doesnt feel so good but then it is - it's just the waiting, not knowing and then the more not knowing if you see what I mean. Tomorrow is another day and the future is way ahead of us so I must stop feeling down and put my best foot forward. Love and best wishes to you, Gill

[Ellie]

Gill,

I am so so sorry. I was very insensitive, not realising how much of a shock it had been to you that the tumour was not benign. I realise it isn't going to feel like it's good news at the moment . It certainly would have been more of a relief to know it wasn't cancerous, that's for sure.

I dont know if I bypassed that stage of feeling shock when I was told my husband had cancer. I remember going to see him in hospital and thinking - he's HAD cancer, he's now simply recovering from an operation. I was just so relieved the surgeon had said the operation was a success and he wouldn't even need chemo, that I thought everything was fine. I realise now, after reading up on it, that he was very unlucky to get the cancer in the first place, but so very lucky to have had the operation and back-up chemo. You read on this site, and others, that some people don't even get the chance of having an op, which must be so truly heartbreaking. I refuse to believe he won't recover from all this! We've been married 31 years, since I was 19, and he is my soulmate, best friend and the best husband in the world. I can't even think of losing him. Every single part of me is willing him better!

I know it is so cruel, and unfair and heartbreaking at what has happened and you must all be in shock, but it could have been so much worse, Gill. You can't change what has happened, but you can be positive for your Dad now. I really and truly don't know where I got the strength from to stay positive with my husband. I'm the sort that gets down when things go wrong, and he is very happy-go-lucky, but I knew he could easily get depressed if I let him dwell on the bad parts. I found a strength to keep both of us going and although we've had our down times, we're being so strong and positive and not thinking of the future and trying to get back to normal.

Your Dad has done so well to be fit so early on , so enjoy all the good times with him and try to be strong and think ositive. Again, I'm so sorry if I said the wrong thing in my last message.

Best wishes

Ellie

xx

[gillvb1]

Hi Ellie

You certainly haven't been insensitive in any way nor said the wrong thing. I really admire your account of how you have dealt and continue to deal with your husband's condition. I really like what you said about your husband having HAD cancer and that he is now recovering from an operation.

I know I should be feeling optimistic but I think it's just the raw emotions surfacing. My Dad has always been energetic and such a decent and honest man that it all just feels so cruel. I know that we are extremely lucky that my Dad's tumour was discovered early enough to operate and I cannot fault the medical treatment he has received through the NHS, it really has been first rate all the way. I am aware of so many people who could not have the operation and I really should be counting my blessings and not mourning the unknown and something I cannot change.

I think that I was hoping that if the tumour was benign then it would be removed and my Dad would be cured - a little naive now I look at it! The fact that it was malignant doesn't feel so good and then I hadn't really looked into what chemotherapy entailed.

I think it's just the stress of the whirlwind of events which has got me feeling a little down but my Dad is very philosophical about the future and is prepared for the chemotherapy. I am always upbeat when around my Dad and it is really his positive attitude which is keeping the rest of us strong.

One thing I can tell you is that your messages are very supportive and really keep me focussed on what was otherwise an unknown topic for me (and of course for you). Through contact with this message board I know that any questions or concerns I have will be answered and that is so reassuring.

Thank you for your inspiration Ellie, I really appreciate your support. Very best wishes, Gill x

[Ellie]

Thanks, Gill. Glad I didn't cause you any further upset.

I certainly understand the whirlwind feeling and the shock. Although I'm positive about things now, I went through an awful time at first, thinking I would lose my husband and alternating between despair and anger that I could think the worst. I lost a stone in weight (that was actually a bonus for me!) and had some very bad times where I felt I couldn't handle it all, but something changed and I became determined to think positive.

You said one thing which was my first thought when we were told my husband had a tumour. Why does it have to happen to the good guys??? There are so many murderers, rapists & evil people in this world, who never seem to come to any harm, yet good, honest decent loving people seem to be hit by it. There really is no justice, is there?

Give yourself time and work your way through all the negative stuff, Gill. Don't feel you have to be brave, or strong. We all need to have a shout, scream or good cry, otherwise I think it would eat you up and make you ill. They say time heals, so you will eventually focus on the positive things which are going on with your Dad. It sounds like he is going to help you himself, by being positive

My hubby got dressed up and drove himself to the hospital for his check-up today, alone, for the first time. I have always taken him upto now, but work commitments meant I couldn't today. I was so happy to see him looking good (he went through a stage where he really didn't want to look after himself) and driving off alone. He expected to get his bone scan results, but they hadn't got them back for some reason. Expecting them on Friday now, but the oncologist said he is doing really well and he's put nearly 13lb back on, so they're pleased with his weight, too. He lost over 2 1/2 stone, but I'm feeding him up and he's looking much better (unfortunately, I'm putting the weight back on at the same time, when I don't need to!).

Glad we can all help each other in some small way on here.

Love

Ellie

x

[gillvb1]

Thank you Ellie, your message made me smile and everything you say about emotions is so true.

It's nice to chat to people who are real and who can put a cheerful slant on things. I must say that my Dad is looking a little unkempt at the moment but that's mainly due to his weight loss and the fact that we can't find a new pair of draw string trousers for him to wear! (to ease pressure on his abdomen). I'm on a mission to track a pair down before my parents eat out with friends next week!!

All the very best for Friday.

Love, Gill x

[gillvb1]

Hi Ellie, how did your husband's hospital results go - I've been thinking of you both. Love, Gill x

[Ellie]

Hi Gill

How are you doing? How is your dad doing this week? It seems he's making such good progress, especially for this age!

My hubbie is doing ok, too, thanks! We had a worrying few weeks when he had some bad pain in his back & hips, going down his leg. He had to start on really strong painkillers so he could sit or walk around. You can't help but think the worst, that the cancer has spread, but to our immense relief, his bone scan was clear and also an x-ray. The scan showed some wear and tear on his hips and the oncologist thinks that because he has lost so much weight & muscle which protects his bones, that it is putting a strain on everything. He needs to put on more weight and build himself up a bit more.

Apart from that, he's now getting some nausea from the chemo, but nothing too serious at the moment. He was hoping to go back to work in January, but was upset today when his nurse told him that the chemo would gradually affect him more and it might not be a good idea to go back just yet. We'll have to see how things go. For now, I'm just hoping he won't be too bad for Xmas Day.

Anyway, thanks for your thoughts and thinking of you too.

Keep strong!

Love

Ellie

xx

[gillvb1]

Hi Ellie,

Fabulous!!!! What a relief for you both after the results of the bone scan - I've been thinking of you lots. The anticipation of getting the results must have been a stress you could have done without but what great news for Christmas. I'm glad to hear that your husband has tolerated his Chemo but I have read that the further into the treatment one goes the more symptoms are likely. My Dad is so keen to start his first cycle of treatment - it's such a pity now that he's fighting fit he has to undergo a 6 month course of treatment which is likely to leave him feeling ill.

Like you, I'm hoping that the Chemo doesn't spoil my Dad's Christmas - my Dad is keen to purchase the usual two Christmas trees and dec the halls as he has every year. I think let him do what he wants to and if he feels poorly at any point we will be on hand to help. My mum was laughing today as she compared how frugal she can be whilst my Dad has just bought a box of 3 baubles for £20.00 - he's really pushing the boat out now!!

For now we're not planning anything - my parents have had to cancel so many holidays and trips to the theatre it's not funny but I have become popular in the office as so many tickets have been donated to colleagues by way of regular name draws!

My Dad is still doing extremely well and his weight is good although he could do without losing any more. His abdomen has healed well and he doesn't need the draw string trousers now - thank goodness - he looks great in his smart trousers!

We're expecting Dad to feel some nausea from his Chemo but do let me know how your husband copes and any tips would be gratefully received.

Take care Ellie and coast into Christmas! Love, Gill x

[Ellie]

Hi Gill

How are you doing? Sounds like your Dad is still doing well - especially as he's back in his smart trousers again!

My hubby is feeling the cold a lot because of the warfarin he's taking, so we've stocked him up with thermal vests - just as well with all the snow we had!

He seems to be getting a bit more nausea, but still nothing serious. He does get more tired in the evenings, though, and has often been in bed at 8 or 9pm. The 2 days after his chemo affect him most, then he seems better. No real tips for you -just take the anti-sickness tablets asap if any nausea.

He's still in very good spirits, which I am so pleased about. I put our Xmas tree & decorations up early this year, so it brightens the house up and makes it more cosy. It's giving us something to look forward to plan for. There were times this year when we didn't think he'd make it this far...

The site seems to have gone very quiet, doesn't it? I had a problem posting a message for a few days, but could have been my pc. No one seems to be writing much. I hope that isn't a bad sign. I feel so much for anyone who hasn't been as lucky as your dad and my husband, especially at this time of year.

Anyway, hope all is well with you.

Love

Ellie

xx

[gillvb1]

Hi Ellie,

I'm so pleased that things are settling down for you and your husband. We have also put up our Christmas decorations - like you, we wanted to take our minds off things and cheer the place up which was really appreciated by my little girl!

Dad remains well and started his Chemotherapy today. He telephoned me this afternoon and said he was feeling no ill effects and was very up beat. He's been so very forgetful lately that it's become quite a worry because I realise that his mind is not on everyday things. He fell outside my house whilst dropping off my daughter last Saturday which gave me a turn. I think it was down to him not being able to concentrate - he talks openly about his condition but I think that he has felt in limbo waiting for his hospital appointment.

He also got completely mixed up about his Chemotherapy dates and thought he had been told that his weekly appointments were changing to an appointment every 3 weeks. He then thought his Chemotherapy was starting last Tuesday only to be called by the hospital confirming that his appointment was today. Now he has an appointment card so we all know where we are! I think it will take the pressure off him knowing that he is receiving treatment and being in a routine.

I know what you mean about the site going quiet - I checked for updates yesterday and was surprised not to see anything new - maybe that's a good thing but I appreciate your message. This site is definitely a big help for me as my partner does not understand my feelings at all. He feels that as we can't do anything to change the future I should not fret but I must admit that from time to time I have been feeling a little low. Now that Dad has started his Chemo I think that things will start to look up. One positive outcome is that I am visiting my parents more often. My 5 year old asked if we could pop round yesterday after school so we did and I could see how happy it made my Dad! I'm lucky because I live so close to them.

Thank you again for your message and nuggets of advice, I'll keep you posted on how things are going.

Best wishes to you and your husband and stay cosy in the warm! Love, Gill xxx

[Ellie]

Hi Gill!

So, your dad had his first chemo today. I know no one wants to have it, but....at least he's made a start and the sooner you start, the sooner it's finished. I hope, like my husband, that he doesn't have any side effects for quite a while, then only mild ones if he does get them.

I've read a few times about patients becoming forgetful. My hubbie is the same. He jokes he's got short term memory loss, as if it's his age, but maybe it is because his mind is on other things. It can't be the chemo, since your dad has only just started.

Hubby did have one problem today. He has to go for blood to be taken every Thursday - some to be tested for his chemo, and some for his warfarin. He's had that many bloods taken over the last 5 months that his veins are now not as they should be - the nurse today had to try 3 times at our health centre before admitting defeat and sending him down to the hospital for the nurses to do there. They are now thinking of putting a line in (called a Hickman?) which I assume is so they can get the blood more easily, instead of finding a vein each time. I really need to read up on that, as I believe it can get infected and cause problems.

It's nice to know the site is here for us to compare notes isn't it? It's probably hard for your partner to know what to say to you and men don't usually talk about their feelings as much, do they. I usually browse the site most nights, so if you're feeling a bit down, pop a note on and it will help get it out of your system. I will try to cheer you up if I can!

Bye for now

Love

Ellie

xx

[Ellie]

Hi Rachael

You started this thread some time ago, but haven't seen anything from you for a while. How is your dad doing after his operation?

Hope everything is going well.

Best wishes

Ellie

xx

[kazzie]

hello ive been reading all of your posts as you all say it is something to turn too and its been brilliant to have it here.I have posted on another discussion topic,and a brief outline is that my dad was diagnosed in july with cancer but not till october that it was pc hes just had 7 doses of chemo and a week off and is now back again he seems to be ok at the moment but all the things that you write I have seen with him as well,but with his last visit he was told by his nurse about a honey that hopes to increase the white blood cell levels has anyone else heard of this,and I am thinking of you all, I know I dont know you, but I feel like I do,And I hope everyone can have the best christmas they can xxx Karen

[gillvb1]

Hi Karen, thank you for posting a message on this board. Glad to hear that your Dad's doing well - it's pretty hard not knowing what's going on. My Dad has just had his first session of Chemo and has a fair way to go. I haven't heard of honey being an agent for this kind of therapy but it's a natural product and I know it has very good properties - you could Google it and let me know what you find out, my Dad loves honey so that's a good thing!!

Feel free to drop a sentence or two at any time - I know that I am very much in touch with this site and my friend Ellie and I will always reply. In the meantime I hope that you and your family have a great Christmas. Love, Gill xxxx

[kazzie]

hello Gill,I did as you suggested and found it the reviews seem good, not sure if allowed to put up the name of it on here so wont do at the moment,but the people who have written reviews seem to have a lot more energy while on chemo and their levels have gone up,so here's hoping karen

[Ellie]

Hi Karen

Is it called Manuka honey, by any chance? It's not a brand name, so I can't see anyone objecting to us mentioning it! I've read that genuine manuka honey fights infection and helps healing and is used to treat MRSA in some hospitals. It has been tested by a university in New Zealand and has good results, but I don't know about using it for chemo side effects.

Even if it doesn't do much good, it's a natural product so it can't do much harm either, except for the cost! Please let us know what it is and we can all research it. My husband has had his 9th chemo treatment and his blood count is still good, but it may come in useful for later if things change.

Best wishes

Ellie

xx

[kazzie]

hello my dad seems about a similar stage to your husband,he had seven chemos then he had a week off then he had one last week ,one this week and then one more then on 30th dec he has his scan,to see whats happened,so I don't really know wether I want new year to come or not.Also he too is ok with his levels at the moment,but he is also into alternative mediciene which he always has been since he was diagnosed diabetic,and he goes to the local hospice after every chemo for some alternative treatment with the macmillan nurse and it was her who had told her about a local lady.Well hes been taking it for about a week now and like you say it is honey and natural ,the name is lifemel and I would say to read some of the reviews its good and encouraging,and we all need a bit of that.Its a big week for my dad as well,he retires on thursday and I think hes bothered about that more than hes letting on.Thankyou for replying back I am so glad to have found this site and you all have been a tremendous support to have. karen x

[gillvb1]

Well, after my Dad was doing so well it has all gone so terribly wrong. My Dad had his final session of Chemotherapy earlier in May 2009 but not known to any of us he had developed a temperature. Be warned - if anyone receiving Chemotherapy feels unwell they should get it checked out straight away - his low white cell count meant that he could not fight of infection. My Dad didn't seek help and put up with his symptons. On Friday 15 May he was admitted to hospital. The following day my family was asked to come to the hospital where we were taken to a sitting room and told that the next two hours were critical. My Dad had septicemia which came on so quickly. He was put into an induced coma and placed in intensive care for 9 days. The last 4 days have been really tough as they reduce his medication to bring him round. My Dad is very confused, has been having hallicinations and looks jaundice and frail. Just two weeks ago he was the strong, active person we know, now he is in a body that will not work. He was on a ventilator and on dialysis and had so many tubes leading to and from his body but now he remains on dialysis which may or may not be permanent. It's been very tough on us all and we have been told that my Dad will never be the same - what that may mean I don't know but we are hoping for quality of life for him. Gill xx

[Ellie]

Oh, Gill, what a truly awful shock it was to read about your Dad just now. I am totally stunned. I have been wanting to ask how your Dad was, but since you hadn't been posting any messages, I thought he had been one of the lucky ones - had the op, done the chemo and was doing so well that you didn't need to post again.

I am so truly sorry to hear what has happened. I would never have believed that anyone could react so badly to the chemo and be left in such an awful situation. I really am stunned and I cannot possibly imagine what you have been, and still are, going through. What awful luck for this to happen on his very last chemo session.

What can I say, Gill, except that you and your family will be in my thoughts and I am sure that everyone who knows you on this site will be praying that your Dad pulls through from this awful setback.

Try to stay positive - your Dad seemed to be an amazing guy, considering his age, so hopefully he will find the strength to pull through. Look after yourself, too, and please let us know how he gets on.

A big hug and my sincere wishes for his recovery.

Love

Ellie

xx

[gillvb1]

Ellie, you are a star - your message was just what I needed. You keep a lot of people going on this site ... do you know that? I have been reading everyone's messages over the last few months but did not want to leave any of my own because my Dad was doing so well and I didn't want to appear insensitive. Well, we have crashed and nearly burned over the past few weeks. My Dad was doing amazingly well - taking my 6 year old daughter out every Saturday afternoon to the zoo or theme park and he has been amazing - the consultant even said that he had an amazing resiliance to the Chemotherapy. My Dad fell ill and the family was asked to see him in hospital as the next 2 hours were critical. My dad has been in intensive care in an induced coma for over a week, he went in to the critical unit for a few days but now is on a low dependency unit. He has/had septicemia which was caused by a blockage in his bile duct. He is so very ill but the hospital seem to have high hopes for his recovery. He may remain on dialysis for the short term of longer but only time will tell. I can only say that my Dad is a fighter. I now feel that my Dad may never be the same again and that this is the first chapter of things to come.