My Husband

[Franks wife]

My husband is 49 years old. We are both 50 in May 2013. He was diagnosed with PC in December, 2 weeks before our daughter's wedding. Straight away i Googled PC and shocked myself with the statistics for survival. I thought my world was ending and have never told my husband anything that i read. He is the most stubborn and pig-headed man concerning his diagnosis. He has promised me more than once that he is not going anywhere, he hasn't had his money's worth yet - as he puts it. He started his chemotherapy on the 9th January. First cycle was for 7 consecutive weeks, miss a week and now he is having the 3rd one of three tomorrow. Next week is a free week then it's 3 more followed by a week off. His oncologist has said that age, fitness and all round well being is in his favour. I do not know the size of the tumour but we were told that it was not operable. I grieve for the life we had, being able to plan weekends away, visiting friends and relations, where every waking moment was not thinking about CANCER. I also grieve for the future that we wanted together. I look at this man that I love with all my heart and feel so helpless. He has lost weight, about 2 stone. We changed his diet in the summer when he had started to have back pain which we had put down to gallstones. That accounts for some of the loss i think. 10 weeks we waited for the ultra sound scan and nothing showed up. Back to the doctors and he suggested a ct scan. Had that done and it showed a shadow on the pancreas and 2 spots on the liver. Off to see a consultant who wanted an mri scan. The results were sent to an oncologist who then wanted a biopsy done. He did not want to treat him by the tumour markers alone. Biopsy results confirmed the diagnosis. I wish i was a stronger person and not one that cries so easily. Sometimes it's uncontrollable and luckily not seen by my husband. He has only cried once and that was because i broke down and it upset him to see me so upset. He is my hero. How can i help him? I'm sorry for rambling along but i need to get some of this out. Talking to family and friends is not what i want to do. I get upset and then it upsets the ones you love and care for. They do not need to hear what spins round in my head. This year was ment to be a year for doing 50 things - random things to celebrate our birthdays. Now i can't think of anything i want to do and planning anything just adds to the stress. How do you all cope and can you help me?

[KATB]

Hi Frank's Wife. I'm so sorry to hear of your husband's diagnosis. It certainly does knock you for six doesn't it?

Welcome to this board which I think you will find full of support. I've only been here a short while since my dad was diagnosed a month ago but people have already been absolutely amazing. Here is a great place to get out all your thoughts, fears, frustrations - everyone here knows what you are going through. There are people on here who are going through, or have been through PC with their partners and I'm sure they will be a fabulous support to you.

I don't know if it's any help whatsoever but the way I'm approaching it right now is simply day by day. I don't think about the future, I think about how right now Dad is here and he's relatively well and looking forward to starting treatment. I'm being positive about the treatment and hopeful and optimistic for a good outcome. I am focusing on keeping him healthy and strong for the road ahead so I'm researching everything I can in terms of diet, keeping well, treatment options etc.

When I spend time with him we talk about normal stuff, we enjoy watching quiz shows together and generally having a laugh.

For me this is the only way to go right now and it is definitely helping.

Just keep posting - don't bottle up your thoughts.

Kate

x

[Franks wife]

Thanks Kate,

It's nice to know that there are people who are all in the same boat. All on a journey that none of us know how long it will take or where it will end.

Since his diagnosis my husband has decorated the hall, stairs and landing, re-wired the whole house, knocked a wall down in the kitchen and has now started to rip the bathroom out ready to fit a new one. He really is like superman. It keeps him busy and his mind occupied. You would never guess that he is ill. I admire him so much. He used to walk the dog everyday but recently I have been doing it and letting him lie in a bit. However, this last week he has started to come out with me again. That's so nice, a bit of normality.

He has had problems with an upset stomach. Some nights having to get up a few times then other nights where he manages to sleep without being disturbed. We are seeing the oncologist on Thursday and are going to ask about an enzyme supplement. Do many other people take these? I know this is gross but he has the most revolting wind - loud, long and unpleasant, is this common?

There is only one up side to all of this situation - he no longer snores!! Oh my it used to be so loud and now - nothing.

The word for today is HOPE.

Karen

[Slewis7313]

Hi Karen, as you quite rightly point out there are far too many people in this dufficult position and at a loss of what to do for the best. I too was diagnosed in early December with inoperable PC and spent some time (along with my family) in a very dark place from which I am glad to say we have escaped. Nothing has really changed, but with time we see that there is hope and support from many sources. For information, my story was put up on the PCUK last week and has a little more detail of my (our) journey to date. On a practical level, I started taking the enzyme supplements immediately after diagnosis which stopped my weight loss (and "offensive wind") in it's tracks. I started chemo in early January and have slowly started putting weight back on and feel generally much better with increased energy levels. We are all now focued on how I am today and try not to worry too much about the longer term as there is treatment in place for the next few months. If after that treatment the prognosis still looks poor, then we will look elsewhere for answers in the hope that more can be done. I too have been trying to keep myself busy and after initially dropping to part time work have now gone back to full time and am again enjoying the challenges it brings. It is not easy and I really feel for my close family as being an onlooker to the situation must be very difficult..... I know they feel helpless, but the situation is neither their fault nor my own.

I wish you and your family all the best in the challenges that lie ahead and am sure we will hear more of each other's highs and lows as we move forward.

Take care

Steve

[Franks wife]

Hi Steve,

Thank you for responding to my post. It's good to have a sounding board that we can write on and by doing so not upset those closest to us with our feelings and at times our fears. If there is anything you could advice me to do for my husband i would appreciate it. He will not talk about it at all really except to say that it will not beat him. Our oncologist has not given us too much information. I think that is because they don't always know what lies ahead at first. I should think it depends on the individual and the way they respond to treatment. Frank has stopped working and we were advised to apply for DLA and motability allowance. We have managed to get these which has resulted in other types of help.

Take care Steve, you and your family are in my thoughts.

[Slewis7313]

Karen, my biggest help has without a doubt been this forum and particularly the nursing staff who can give really informed advice. They are absolute stars! However, my wife needed someone to talk to directly (though she did not seem to know it a the time) as she struggled to discuss the difficult aspects of this illness with me. We are very lucky that there is a 'Maggies' support centre at our local cancer unit and they have helped my wife, made all my family extermely welcome and are again made up of qualified support specialists including a psychologist. It's now a second home for us and if we are in the area we pop in for a cup of tea and a chat about my illness, the weather or whatever. Maggie's have quite a number of centres, so it is probably worth visiting them if there is one near enough.

This is their link:

http://www.maggiescentres.org/

If this is not an option, then just keep talking here and I am sure you will get plenty of support. In the meantime I'll give your query some thought and see if my experience to date can help in any way.

Take care

Steve

[KATB]

Karen, Steve's suggestion sounds great. Also consider Macmillan nurses - the one that came to visit mum and dad last week was fabulous and immediately changed the pain medication dad was on. They can also help with forms to claim the benefits you are entitled to and of course can provide emotional support as well. Your GP can refer you to Macmillan.

Kate

x

[karen17]

Hi Franks Wife and welcome to the forum,

You will see by reading my posts that the paths we are both following are very similar. My husband is just 51 and was diagnosed in November just days after my 50th. Like you our world has just fallen apart but he is doing really well on his chemo regime with some reduction in tumours. It does get a little easier. I clearly remember how dark those first few weeks felt and yes at times they still do. I still wake every morning with my first thought being about this but not with the same awful sinking feeling that I initially experienced. I spend lots of time researching for him and trying to do something positive. Your husband sounds like mine too in that he refuses to give in to this and is living life as normal. With regard to wind I agree this is a problem. We joke about it as a family but I think it has improved with Creon.

Keep posting on here Franks Wife. You will gets lots of support and contact the specialist nurses who are just great.

Keep strong for your lovely husband

Karen

[DRAD3]

Hi Karen

So sorry to hear your story - so similar to mine in many ways. You have already had some wonderful replies from others in the forum family that I am sure you now feel a little less alone and I hope that helps somewhat. My husband was just like Frank - he did not want to know anything other than what he needed to do that day or week - completely focussed on keeping fit and healthy and battling the cancer. He always tried to be positive and optimistic (didn't manage it all the time, but he tried) and was constantly doing DIY jobs or making lists of things to do - I think it was a healthy distraction (he had to give up his job as it involved 12 hours shifts of manual work) and made him feel more in control and useful when he probably felt quite the opposite. He also did not show much emotion about the situation other than, like Frank, when I was upset (I'm a crier!)It is hard sometimes when your loved one deals with things differently which is why it is important that you have somewhere you can go to empty out all of those thoughts and fears. We are here for you, Karen, as is the support team (you can email them or phone them direct). Definitely look into accessing Macmillan (or similar), they are also wonderful and will help you all as a family and/or individually, whatever you need.

The important thing is to try and keep positive. The oncologist won't be giving too much away because everyone is very different but you will have read on the forum of great results from treatments and Frank's age and fitness will stand him in good stead. It is true, your life will never be the same again but Frank obviously is ready for battle and this will bring you even closer, together you will be a force to be reckoned with! You are right, the word definitely is HOPE - never give up.

Sending you both love and strength

Deb

xx

p.s. I was also a happy bunny when the snoring disappeared - not sure why that is but was happy anyway! xx

[karen17]

On a lighter note everyone may I ask why you all say your husbands stopped snoring but mine seems to have just started!!!!!

[Slewis7313]

With regards to CREONS, what has been repeatedly stressed to me by the specialists is that taking too many CREONS is totally harmless as they simply pass through the system with no ill effects if not used up by the body. This would surely suggest that if their use does not bring guaranteed results, there is surely no harm in trying them on the chance that they might help?! I had no problems getting hold of these, but had to ask for them which is worrying because they definitely had a very positive effect for me.

Steve

[DRAD3]

Good point, Steve - definitely a case of "no harm in trying". Does make you wonder why you have to ask though!

Not sure what the answer to the snoring mystery is, Karen! My husband was always a red wine drinker, pre-diagnosis, which apparently does cause snoring, so I had assumed going tee-total had "cured" him. I also wondered whether it might have been because he never quite slept as soundly post-diagnosis - no surprise and saddening too. I just darkened the moment, sorry. Did appreciate you lightening the mood! xx

[Slewis7313]

For what it's worth, my wife assures me I am also now a reformed ex. Snorer!

Steve

[ujho01]

My story sounds so similar too. My husband had Whipples in July 2012 and had been going really well (still on Chemo). Three weeks ago we were told he was in remission latest scans and blood counts good. Then last week started to get some bloating, this week tests confirmed cancer back in stomach (micro cells) and suspicious spots on liver. He had been going so well and now this! It is devastating. We have children 15 and 19 and they are taking it really hard. We've seen a doctor every day this week, discussing treatment options and getting second opinion. Main thing is to keep positive, move from one goal to the next. Buy time and hope nest best cure option comes out. Jayne

PS my husband has stopped snoring too but he tells me I have taken over where he left off!

[PCUK Nurse Dianne]

Thanks Jayne for the post,

Sorry to hear your news about your husband. Amazing that he has done so well. Please do feel free to contact us at the support line if you feel you need some support or if we may be able to answer any questions for you. Thinking of you, it is such a cruel disease isn't it?

Kind regards,

Dianne

Support Team

[J_T]

"Main thing is to keep positive, move from one goal to the next. Buy time and hope nest best cure option comes out."

Absolutely Jayne, even if its hard at times. Good luck to all the family with the continuing treatment.

Julia x

[Franks wife]

Well we have both celebrated our 50th birthdays. As we were only born two weeks apart we had a celebration for nearly a month. Haha. Frank is still having his chemo as before - 3 weeks on and one week off. The last time we saw the oncologist (last month) he said the tumour marker was now 219. It had been in the 400s. I'm taking this as a positive sign. I don't know what is a high marker reading so to me this is good. We are planning a two week tour of Scotand in July. We love it up there. The oncologist has no reservations about it and Frank is "fit and healthy" still. That sounds mad doesn't it but he is still very active and carrying on with jobs in the house and garden. This week the back garden is being completely ripped out and re-designed. He has manged to fill 2 skips, build a wall, lay a new patio and is going to rip up the turf and lay a bed of shale to make it as maintenance free as possible. I think it could be the front garden next week. Going home from work is quite exciting a i can always see something that he has been doing. Frank has still got an upset stomach. We did get Creon and he took it for a week but it made him worse so he gave up on that. He suffers more when he has succumbed to something a bit greasy so we try to avoid certain foods. Imoduim is his new best friend. Haha

That then is the first 6 months got through. When we had the diagnosis i didn't know whether he would be here for his birthday. Here's to the next 6 months and hopefully beyond. Today's word is - continue

[Cathy]

Hi Frank's wife..

Wow! Frank is doing fantastically isn't he?!

You absolutely MUST go on holiday, particulary as he has the all clear to go. Scotland is beautiful at anytime.

Re tumour markers. I don't think it is the level so much (ours were in the 1000s) but the fact that they reduce is the main thing alongside Frank's overall good health. Both very good signs.

Enjoy your holday. And if Frank gets bored and wants another project.....

xx

[Jwilson]

Franks wife/ Karen? There is a quote from the Shawshank Redemption.....one of my husbands favourite movies, you get busy living or you get busy dying! My husband sounds like yours. He was working right up until the Friday before his surgery on Wed. May 15 th. flip he was as yellow as Bart Simpson with jaundice but he was at his work.....nuts! Next goal is my birthday, he has booked to take me out on Sunday but I don't know, we can always cancel. Today he is like crap. So weak and sick but hey he is doing one hell of a lot better than I would be doing! Best luck to you

June

[J_T]

Really just to say, what Cathy said!

Frank IS doing well, get thee to the Highlands! I LOVE Scotland!

x

[Bee]

How lovely to hear of another bit of positive progress, I am sure positive mental attitude is important in fighting this awful illness. Have a wonderful trip to Scotland, there is nothing quite like a good dose of Scottish fresh air!! Enjoy x

Bee

[PCUK Nurse Dianne]

Hi Frank's wife,

Congratulations on your birthdays, great news, and trip to Scotland sounds fabulous. I do wonder if you would be keen to discuss the Creon issues with me, as I feel that Frank may benefit from the Creon, especially as you say he has problems with a greasy meal. It may have been that the problems associated with the week that Frank tried it may be related to the advice given, I would be happy to discuss this with you, as it can make such an improvement when taken correctly. Please feel free to email the support line: support@pancreaticcancer.org.uk or phone on: 020 3535 7099.

Best wishes,

Dianne

Support Team

[dabber66]

Could I add, I too had problems with creons, persevered for months, even taking the contents out of the capsule - not recommended, - this may or may not help, but my GP tried me on a different brand, Nutrizym 22, and I have been so much better. Carole

[Franks wife]

We have had our 2 week holiday in Scotland. Wonderful time!! Frank's ok. He walked the dog everyday and really enjoyed it. He had his last chemo on 3rd July, we went away on the 6th and got back on the 20th. (first day back at work today) We have got an appointment with the oncologist for our monthly meeting on Thursday. He normally weighs Frank and has a chat about how he's coping etc. Frank has been having a lot of back pain recently and we cannot make up our mind why. Sometimes he says its like a wind type pain, when he walks he says its an ache. When he sits he said the only way to get comfortable is to stoop forward. He initially lost 3 stone in weight and i am wondering if he lost muscle tone and needs to do a little strengthening exercise. Could it be the disease itself, I don't know. He has had 6 months of chemo, 3 weeks on and 1 week off. As we have been away it has worked out that he will have had a month off now and we will see if it starts again next Wednesday. Are you suppose to have regular blood sugar tests or blood pressure tests while you are on chemo? Frank has not had his blood pressure done since February and he is on blood pressure tablets - Ramapril 10mgs. Does chemo thin your blood?

We have finally got our doctor to flag us to Macmillan. They are phoning me tomorrow to arrange a meeting. I think it will do Frank good to be able to talk to somebody. Maybe they can help with his upset stomach problems and diet advice.

I spoke to Diane (moderator) a few weeks ago about Creon for Frank. We did manage to get some from our doctor, in different strengths. However, they gave him tummy pain and he stopped taking them after 5 days. They didn't work for him. To be fair though he isn't going to the toilet as much as he was. Red meat seems to upset him the most at the moment so even as it's his favorite, no more.

Has anybody else ever felt like they are distancing themselves from the person they love who has got the cancer? Sometimes i feel as though we are not so close because it is a way of stopping the worry. It is weird as if i am trying to stop myself from being hurt. Yet I love my husband with all my heart and i am petrified of loosing him. I panic when i think about it. My mind whirs with thoughts of a funeral and a future without him. I cry for him and the chance that he will not be here to carry on and enjoy the life we have together.

[Bee]

Hi,

Glad you had a wonderful holiday!

I wish I could give you all the answers but I can't , but there is a live chat tonight on this forum, you may be able to get some answers there, it's also lovely to chat directly to everyone, I find it really useful.

In terms of the future, I try not to think ahead, as the future is a terrifying place so I don't go there, cos I can't bear to!! Just treasure your time with each other now, but try the chat tonight, it might help.

Bee x