post-operation blues

[dabber66]

I am new to the forum, but have been reading the postings, I would like to 'talk' to other members, as it is all so new to me, and very frightening. I was diagnosed in August with a tumour, the future looked very bleak as it appeared to be inoperable - but it was found I had an endocrine tumour in my pancreas, spleen, and it appears my stomach as well, but how wonderful, it was operable. I have been home for two weeks now, know little about diet, but find I can only eat a little at a time, still very painful, as is my throat, the feeding tube into my tummy seemed to cause some problems - lots of niggles, really, just need someone to talk to, who may have been there before me, and can offer some advice, support, or just, well be there. I have a super husband, who is looking after me, I am well blessed. Hope to be able to chat with you all, and later, I may be able to help others with my experiences.

[Sones]

Hi Dabber, I am so sorry to hear you are going through this horrible experience but selfishly i am so pleased to be able to communicate with someone who is in a similar position to myself. I was diagnosed in September 2011 and had surgery in October 2011 followed by six months of chemo.

I recovered we'll enough from surgery to be discharged on day 5 but obviously very weak and unable to do very much, like you I have a fantastic husband who did all the cooking and housework etc. I found I just snacked the whole time on anything that I fancied, mostly unhealthy foods, sweat things and ice cream but the doctors seemed to think this was ok in the short term as I needed the calories to gain the 2 stone i had lost. I have to take extra Creon (digestive enzymes) if I eat any greasy foods. Are you taking this?

My diagnosis was a huge shock as I'm sure yours was and I found it hard to cope emotionally, still do at times but yes like you I was lucky to have been able to have surgery. It's early days for you having only been home from hospital for two weeks, you will have niggles and lots of un answered questions. Everyone kept telling me to keep positive but that's easier said than done when its you who is sitting in the driving seat but do try and feel free to rant, scream and shout on this site as much as you like, I am also more than happy for you to email me.

Do keep in touch.

Sue.x

[dabber66]

thanks so much for replying to me Sue, helped me already, knowing I am not alone with my fears and I look forward to being able to 'talk' to you. No, I am not taking any enzymes at the moment - I had some very strong antibiotics in hospital for a lung infection, and they said, when I was discharged, my dreadful bowel problems may be due to just that - must admit, things seem to have settled down, but would not be very many yards away from a loo!!! not just yet anyway, but they will give me the enzymes if it does not settle down. Not sure how much of my tummy has gone, but find I cannot eat very much in one go, and certainly cannot drink as well as eat, I feel most uncomfortable and painful. I have always been a very positive person, and so find it difficult to understand why I feel so afraid, sure I will improve, I do feel better than I did yesterday!! Do keep in touch, I am so pleased to have had the chance to chat to you. xxx

[Sones]

Its a bit like having a tummy tuck, your stomach has shrunk so you will only be able to eat small amounts. I don't know how much of your stomach they took either and it also took me a long time to read the histology report, I relied on my husband to find out all the details. I couldn't even look at sites like this as I was so scared. I've put my story on the " real life" stories on this site, I'm on page 2 of operable if you want a read.

Sue.x

[dabber66]

Hi Sue, not very good yet, on using the forum, and cannot find real life stories, or operable page, so cannot find your story - I will have another go tomorrow when I will hopefully feel a little better - my brain is still also a little 'addled' since the op. hope it improves!!! Carole.

[PCUK Nurse Jeni]

Hi Dabber,

Here is the link to Sue's story.

Hope you enjoy reading it!

BW,

Jeni.

http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/operable/sue

[dabber66]

Many thanks Jeni, you are most kind, hopefully I will soon find my way around the postings!! Carole. and yes, certainly did find it most encouraging.

[Sones]

Hi Carol

How are you feeling today? Remember you've had major surgery and it will take time to gain your strength, take each day as it comes.

Thank you Jenni for directing Carol to the real life stories, I know I found these stories both operable and inoperable very encouraging.

Sue.xx

[dabber66]

Hello Sue, nice to hear from you, feeling much better today thanks - had my first bath for four weeks!!! - had a bath lift fitted, and it is great, giving me a little independence back, my husband has been so good at showering me etc. so it will give him a break to. My doc. has 'upped' my pain killers, which has enabled me to sleep for four hours!!! only been managing two hours up until now. It is a strange place to be though isn't it, still pretty frightening, but realise how important it is get some sleep, and eat as well as possible. Read your real life story, you are very brave, it is important to all, who are new to cancer, and all the fears that go with it, to read other members experiences, it makes you feel you are not alone, well, it does me, and I am so glad I have 'met' you. Carole xx

[Sones]

Thank you Carol I am so pleased to have "met" you too. It is very scary and you will go through many emotions which is to be expected. Yes you must get some sleep and rest as much as you can which isn't easy when your constantly asking yourself so many questions that you don't know the answers to. It sounds as though you have a lovely husband who is obviously taking care of you.

Please keep in touch.

Sue.xx

[Carl101]

Hi all,

I'm carl, I'm 39, and had whipples opperation about two months ago, all the feedback was good, it looks like it has not spread, im lucky that I was able to have opperation, but I'm about to start chemo, and I'm really scared, I don't want to put family through problems or pain, my partner is amazing but i am scared what he has to go through.

It still all feels a bit unreal, and I feel fine, which makes it even more unreal. There is nothing else other than this in my mind as soon as I wake up.

I'm not sure what to expect,

Thank you for reading

Carl

[PCUK Nurse Dianne]

Hallo Carl,

Welcome to the forum. Firstly I am sorry to hear of your recent diagnosis, and I am sure at such a young age this must be such a huge shock to you and your loved ones. Well done for your recovery so far, and it is great of you to share your feelings, this is such a 'normal' for people to feel like this, however not everyone is so brave to openly share these 'scared feelings'.

I will email you directly, however I am sure that there are some other patients who may be able to help you through this with their own experiences and coping mechanisms, and it is always best coming from someone who has endured a similar experience as yourself.

For any other patients who would like more information about chemotherapy, side effects or trials please do contact us on the support line as we are always willing to email you individually with information or answer any questions directly (support@pancreaticcancer.org.uk).

Kind regards,

Dianne

Support team

[Sones]

Hi Carl im so sorry to hear your diagnosis, as Diane has already said it must have been such a shock. I am approx 12 months ahead of you having had whipples surgery in October 2011, followed by 6 months of chemotherapy. I had Gemcitabine ( not sure if correct spelling - spelling changed - moderator), every week for three weeks then the fourth week off. Everyone's different and reacts differently, I managed all sessions apart from one which I couldn't have due to my blood count being so low. I had the normal side effect following each session of chemo i.e nausea and felt very tired but recieved fantastic support from my oncologist and the chemo nurses. Please feel able to ask me any questions you may have and I will answer them if I can from my own experiences. You will receive lots of support from this site Carl, keep in touch and let us know how you get on.

Take care

Sue.x

[Carl101]

Hi Sue,

I can not thank you enough for your reply, I know I'm

not the only one, but does feel it at times.

I do have questions! I hope you don't mind... Saying that I'm now sat here and I don't know what to ask!

I guess my first questions is how do you cope? Every thought I have now is regarding this. It's my birthday tommorrow and I'm going away with my partner, and it would be nice if we don't think about what has happened.

Hope all that makes some sense.

Yet again Sue, Thank you and glad all is well

All the best

Carl x

[Sones]

Hi Carl

I don't have any answers regarding " every waking thought". To be honest I hardly ever stop thinking about it. I've been through all the anger of "why me" to now thinking "why not me" and we are the lucky ones being fortunate to have surgery. I was so low emotionally following my diagnosis that I was prescribed anti depressants - Im not saying that this is what you or anyone else should do, all I'm saying is that it was right for me and that all you are feeling is natural and absolutely normal. You sound as though you have a loving partner Carl so make it a special birthday, talk to each other about how you are feeling.

Your not alone.

Sue.x

[Carl101]

Thanks again Sue, will let you know how break/birthday goes.

Have a great weekend.

Carl x

[Carl101]

Hi Sue,

How are you?

I'm good had a really nice weekend. The lake district was lovely, the weather perfect, cold but perfect blue skies.

Amazing food! And nice quality time with my partner.

Hope your well.

Carl x

[Sones]

Hi Carl

I'm good thanks. So pleased you had a good time, yes it's cold but hey that doesn't matter.

We moved 300 miles from South to North to be closer to family when I was diagnosed and presently living in a static caravan, believe me it's really cold on the mornings. However, we're having a house built so watching it grow every day takes my mind off things......

What's happening with you Carl re chemo? Have you seen your consultant since your surgery?

Sue.x

[Carl101]

Hi Sue,

When is your house finished? It sounds exciting, did you design it yourselfs?

Went last week for meeting, they have said I may be able to do a trial, ECPAC-4, but if I don't get in that it will

Be germcitabine which will be 3 weeks on, one week off for 6 months.

Nurse is calling on thursday to see what I have decided on doing.

I know I have to do chemo, but as every day passes

I'm getting more towards how I felt before the opp,

And I know I have to do it, but do feel,

Wish I didnt have to get sick again when I'm feeling ok now.

Work are collecting money for the Yorkshire cancer centre tommorrow so I may pop in and help them.

Whats your plans for the week?

Hope all is well

Carl x

[Sones]

Hello agin

Not sure when the house will be finished but builder has said the shell should be up and water tight within six weeks. It's so muddy on site ( which I'm living on) at minute and so hard keeping two cocker spaniels clean.

Didn't even think of trials when I was diagnosed but have heard of the one your talking about. I had the gemcitabine 3weeks on and one week off. I'm not going to say it was a walk in the park but you get through it. I felt sick but wasn't actually sick but everyone is different. On the plus side you don't loose your hair. Do let me know what you decide and remember support is here for you.

You mention Yorkshire? Where abouts?

Now for the rest of the week. Well I've found this fantastic auction a few miles away, selling all top brand goods at ridiculously low prices, I've bought all sorts for the house. Anyway that's where I'll be tomorrow. Thursday will be busy keeping builders supplied with bacon butties and haven't decided what to do Fri. I was working full time and had lots of friends and work colleagues before moving here and find my own company hard at times.

Keep in touch

Sue.x

[Carl101]

Hello!

That auction sounds brill! What stuff does

It sell.

I live in Leeds, where abouts up North are you?

We have just moved, we bought a

House just before all this happened, we moved in last week.

Thanks Sue

Carl x

[Sones]

Morning Carl

It sounds a good idea to go and help out at your work, bet they would love to see you and it will you something else to focus on.

I'm off to the auction now but will check in on the site later. I'm not sure how it works but I will ask the support team how I send you my personal email address then I can tell you about today's bargains.

Chin up Carl, I know it's hard but try to keep those positive thoughts going.

Sue.x

Ps know Leeds very well, was there last week visiting my sister in law. I live about an hour away in Nottinghamshire.

[Carl101]

Hope the auction went well Sue, will do the same regarding email.

All the best

Carl x

[Sones]

Hi Carl

How did you get on today? Did you go to help you work colleagues?

I had a great day buying things I really don't need but felt they were too much of a bargain to leave behind. Ended up with two stief bears, a steam mop, coffee percolator and loads of bottles of revlon nail varnish which I have given to my daughter who owns a hair and beauty salon.

Carol - thinking of you. Let us know how your getting on.

Sue.x

[Carl101]

Hi Sue,

All ok Thank you, didnt get a chance to

Go into work, but so far they have collected 500 pound! How good

Is that!

I have your email address now do just poppin to my mums an will

Send u an email later.

Hope all is well

Carl x