Help - Husband just being diagnosed with advanced cancer!

[Jool2504]

Afternoon, my name is Jools.

My fiance Bill was diagnosed on 8th Aug 2012 as having PC which is advanced and now in his liver and abdomen. He had a liver biopsy on 14th Aug which confirmed it was PC. He had to wait until 10th Sept to see oncologist which said he can have chemo, his chemo has been changed from xx to xxwhich is much closer to us. His chemo now starts on 26th Sept.

We got married on the 26th August by special license at his sons house, it was a beautiful day with our family and friends. He has not had such a good day since.

Every stage since his diagnosis I have had to chase the hospital, contact the District Nurses as he was having terrible bowel problems and also the GP who didn't get confirmation of biopsy until nearly 2 weeks after us.

He seems to be steady with his pain meds but that only seems to last a week and the zomorph needs increasing. His sleeping pills Tremazepam don't have much effect now and hes been given Amitriptyline now to help him sleep, still not working. He is fast asleep at the moment, thinking of trying to keep him awake this evening in the hope he'll sleep through. He has now got a purple little toe which is spreading through his other toes through his foot and can barely walk. GP gave him asprin and said its his circulation.

In just over a month he has turned into a shadow of his former self. He's loosing so much weight and has no energy at all.

Bills first wife died 5 years ago of ovarian cancer which spread, she fought for 15 years, so he knows whats coming as does his son, I have no idea. Monday we are going to his new patient interview at the treatment centre, I am so scared for him and myself. I'm off work sick as I've had a hysterectomy and then Bills illness, so I am at home with him all the time. Macmillan are coming tomorrow, really need some support. Bills son is very good & his girlfriend but they have busy lives.

Sorry if this is a load of waffle but I feel I have no one to talk to about this, about how scared I am for him and me. I'm on the hysterectomy association form with a group of girls who had op same month as me and they are great but don't feel I can put this on them as well.

I don't know what to expect, people say he will be better after chemo if it works, how sick is he going to get with chemo, is he going to have some good days between weekly treatment? Some comments I have seen say Chemo had little effect and they lost time with their loved ones as they were so sick with the treatment. Quantity over quality???

Sorry just confused, scared and lonely.

Jools

[Sammy-Lou]

Hi Jools,

I don't have much advice for you I'm afraid but just came on to update my MIL story and saw your post, I just want to say you are not alone and everyone on this forum is so supportive I'm sure you will find some comfort in the words of others, it's nice to be able to speak to people who understand. I'm so sorry to hear of you and your husband are having a tough time, everyone's experience with this awful disease is so different it'll be difficult to advise on treatment, some people will cope better than others with the chemo and it'll work better for some than others. You will find a real mixed bag of experience here and in the end your husband must choose what he feels best for him. I hope that they can control his pain, and if you have to shout, scream and kick to get this done then do!! As for not sleeping I know Amitrip' can be given in different strengths so maybe worth speaking to the GP about looking at this or trying something else. One thing to remember is there is no real need for your husband to be in pain, it's just a case of getting the correct meds at the right doses. I wish you all the best, you, your husband and his son through what is a difficult journey.

Love and support

S x

[susikus]

Jools, my heart goes out to you. It is a horrid, horrid situation you find yourselves in and I empathise with every word you wrote. My husband was diagnosed with PC, also with liver secondaries on 21st August. We saw the oncologist yesterday and are also starting chemotherapy on 26th September! You can read more about us on the thread 'new to this'.

I am new by comparison to many others on this forum but already I have found it a very supportive group and have learnt a lot by reading the website and the forum. We have had visits from MacMillan and our district nurses are coming tomorrow. Do ask lots of questions of everyone you meet. Sometimes answers are hard to find and sometimes they drop into your lap. You don't say what sort of bowel problems your husband has - is he on Creon? I found out about this from reading this forum and my husband is now on it and we are increasing the dosage and little by little his bowels are improving.

Re your last paragraph: my feeling is this - none of us can know what we cannot know. You and I have no idea how well the chemo will work, will it lengthen life, improve symptoms or make things worse? There is no way to answer this. We know the chemo will be palliative and my husband will die. We feel we are prepared to give it a go, take the chance that he could be 'lucky' and have a positive result. We also know that we can stop the chemo at any point that we choose. We have told everyone what we were told at diagnosis - he cannot survive this, the prognosis is weeks to months, no-one knows. Everyone reacts differently. I have found myself supporting many people as they discovered it. And so many people have told me they cannot believe how well I am coping. Well I am when they see me - but they don't see me when I am not! I take my dogs walking and howl.

Hugs Jools {{{{{}}}}} This one day at a time is so hard isn't it? Lots of love to you and keep talking to us.

Sue

[PCUK Nurse Dianne]

Jools,

So sorry to hear of your husband's diagnosis and appreciate what a difficult and scary time you are enduring. I know you will receive lots of contact from the 'forum family' which everyone finds very supportive.

Please do feel free to either call or email us if we can help in any way with information, answers or support (support@pancreaticcancer.org.uk or 020 3535 7099 - charged at local network rate).

Dianne

[Jool2504]

Thank you for your support, such a sad time to meet new efriends!

Bill slept most of the morning must have done him good as he had lunch & yoghurt, another nap then managed a bath & tea. He looks much better this evening now.

Macmillan in the morning & oncology in the afternoon, fingers crossed he's not deteriated too much for chemo. His foot is much better after he's moved round a little had hoped he might come out for a drive but he's changed his mind.

How are people dealing with work? Have a meeting with my boss & HR on Tuesday wondering if they'll offer me unpaid leave? Due to my op prior to Bills diagnosis I am now on half pay, can't even consider going back to work as I am so shattered with him not sleeping well & all the worry.

[DRAD3]

Hi Jools

So sorry to hear of your husband's diagnosis. I understand how absolutely devastating this is and the difficult road you are now on. My husband was diagnosed in January 2011 and had treatment involving chemotherapy and radiotherapy which kept him with us until April 2012. It was by no means a bed of roses but he was a fighter and was absolutely determined to try everything on offer in the hope it would give him more time. It all depends what chemo your husband is offered. My husband had various types with differing side effects. For the first six months it was really OK - no major side effects. The main issue was fatigue which he found frustrating being a previously very active man. We had really good times, trips away, days out, doing jobs around the home - good quality time (you suddenly appreciate each other and life when faced with death don't you?) He was offered gradually more aggressive treatments as time went on and the cancer became more aggressive and these resulted in more side effects, most notably risk of infection which resulted in a couple of hospital stays which he absolutely hated (he saw it as being somewhere he didn't want to be while precious time was ticking by) but you always have to weigh up the pros (it will give me more time in the long run) with the cons (giving up some time doing something or being somewhere you don't want). It is never an easy decision but ultimately it is your and your husband's decision and nobody elses. With regards to work - when my husband was diagnosed I went off sick from work and did not return for six months while he was undergoing chemo and radiotherapy. I returned for a little while but really struggled to keep all my balls in the air and the guilt of not feeling I was doing any roles properly was extremely hard to cope with. I was forced to go off work again this Spring when his health deteriorated before his death. You are obviously recovering from a major op yourself as well as wanting to support and be there for your husband so I would really take the time off work if you can. It may be worth looking into what benefits you are entitled to in this situation - perhaps this will allow you to take some time off without the additional worry of finances. In the circumstances, would your employers offer you something/anything to ease the burden - you must ask. Lots of difficult decisions in the midst of an even more difficult situation. I wish you all the best, Jools. Know that you are not alone and this new set of "friends" really do understand and will be here for you whenever you need us.

Love and strength to you, your husband and your family,

Deb

x

[Jool2504]

Thank you all for your words of support. Busy day tomorrow Macmillan nurses first visit & oncology later. Bill has improved this evening, this morning he was to frail to wash but after a long sleep he's bathed himself, had a good lunch & dinner. He does feel a bit sick now though, this is becoming more frequent but as yet not actually been sick. He does suffer from acid reflux & has had 2 yogurts today which could be the cause. Tried keeping him awake tonight in the hope he'll sleep tonight. Let's pray for a better day tomorrow.

Thank you all again I do feel somewhat better knowing your here with us.

[yorkypaul]

Hi Jools

New to this myself too. Just want you to know that, whilst I am no expert and can not offer good advice yet, I totally empathise with what you are going through. I will offer support in the way that my other forum friends have offered it to me. I am here to listen and to reply. I know what it feels like. Be positive. Get information. Be firm but polite with the doctors. be there for him (as I know you already are).

Love and hugs,

Paul

[DRAD3]

Hi Jools

Encourage your husband to listen to his body in every way. As far as foods go - avoid foods that aggravate - this may mean a total re-think of your diet together. My husband and I shared a quite bland diet after his diagnosis - white fish, boiled potatoes or rice, veg - boring yuk but he could digest this well. Let him sleep when he is tired - his body is fighting a strong enemy and he needs all his strength to give the blighter a bit of stick back - sleep and rest will replenish his energy cells. I returned to life as it was when I had my new born daughter - slept when he slept and woke when he woke to help him - it is hard, Jools, as your husband's carer and I send you all the very best and strength yourself.

lots of love

Deb

x

[PCUK Nurse Dianne]

Goodmorning Jools,

I hope yesterday was helpful with information you may have received from Macmillan and your Oncology visit. I just thought I would include some information that may be helpful for yourself and others in a similar position re benefits.

MacMillan do have funds available for patients/families/carers that may be used in times such as this where people are not able to work etc, coping with costs associated with travel to and from appointments etc. If you have not be told about this by your MacMillan or other specialist nurse, please ask as they may be able to complete a form for you requesting a grant. Many of the Macmillan centres/nurses within cancer treatment centres will be able to help you with completion of the forms and explain what benefits are available to you.

The other helpful site is Citizens Advice, they may be able to guide you in benefits that you are entitled to from a perspective of sickness benefits/ disability or carer's allowance. They have an 'easy to use' web site (http://www.adviceguide.org.uk) or phone on 08444 111 444.

I hope this may be helpful and if we can assist in any way please do not hesitate to contact the support line.

Take care at this difficult time.

Dianne

[Jool2504]

Evening,

It'll be morning by the time I've finished!

Macmillan came on Thursday Bill knew the nurse as she had come to look after Bills first wife before she passed away from ovarian cancer. The nurse was great.

Thursday we had an appointment with oncology at 16:30 we eventually got to see the Dr at 19:00!!!! Thankfully the Dr was great Bill really liked him & he also met his assigned Chemo Nurse or she was one of the team. The Dr explained his toe trouble was a symptom of PC which was aggrevaited by his new steroids nothing to be overly concerned about. Increased his sleepers & left feeling positive. Bill slept through first night in weeks!

He's spent most of morning asleep on & off but came out with me for a ride to look at a couple of cars, want to get rid of the two we have & get a newer one. He started to feel unwell so he stayed in the car whilst I looked and talked.

Not been great tonight, bowels playing him up, he was told he can't have suppositories whilst on chemo but until he starts he's going to continue with them, a day without one & he's suffering.

He got really upset tonight and said he doesn't think he has long!! tried to be positive & comfort him.

I did ask about the stuff to put on his meals but they said he doesn't need it yet. He is getting slimmer by the day, told me if anyone comes to the house he must have a long sleeve shirt on, his arms & legs have almost no muscle left.

Thank you all for your posts. Such an awful time, such a devastating disease.

It's my Dads birthday tomorrow & was hoping to visit but its 1.5 hrs away, don't think Bills upto it now,parents just back from holiday so there bit to tired to come to us, maybe they will later in the week. Hope Bill picks up so he has a better weekend.

[laura]

hi jools, 2nd attemt wrote you long post and lost it arghhh, keep this shorter. sorry to read how things are for you and hubby, congrats on marriage x glad mac nurses involved, so helpful on sorting out meds quickley and other help for you both.

re creon, ensyme replacement, due to pancreas not being able to do its job, i had to ask for it, for brian, that was in may 2010!,it wasnt suggested to me but had read about it and wanted to try anything that would help with his weight loss, lost four stone, has now regained just over 2 stone and maintaining it, fancying food was a problem for a real long time, taste buds altered drastically, was on meal replacement drinks for quite a long time, then used to fancy cheese n pickle, and trifle, n chocolate not all on one plate,

lol!!

however he still takes creon 25000, before. during and towards the end of a meal, so the granules disolve over the food to aid digestion, i have read that some take smaller dose 10,ooo but more frequently during each meal. even with piece of cake, or biscuits, trial and error, but perhaps worth pursuing it again?

sending love and strength to you both at this difficult time, we are here when you need us

love laura xx

[Jool2504]

Thanks Laura, Morning all,

I'll ask at the hospital on Monday when he goes for his new patient session in the morning. Bit busy tomorrow as have found a bigger car for us, getting rid of the two we have and moving down to one. Its a Qashqai so will have lots of room in the back and its much higher for us to get into, its not new but new to us. Have to sort out bank and details on my current car as its being part ex'd.

Not looking forward to work meeting on Tuesday, they originally said it was 9am and have now sent me a letter saying its at 10am not happy as Bill has his district nurse assessment at 10.30am, he said he can do it alone, might ring DN's and see if they can make it later in the day. Also the first chemo session on Wednesday afternoon, people have said he won't start feeling ill until he's had a few sessions, how have others found this?

Parents coming lunchtime, I have been getting it all ready and now the meats in, hope Bill will eat a decent amount, mind so far this morning he's had 2 weetabix and a peice of raisen toast. The cupboards and fridge is full of goodies for him so he can snack all day.

I have to wait till he is asleep before checking out the forum. I hope the weekend is going ok for everyone.

J

[DRAD3]

Hi Jools

Hope all went well today and you got some more info and help. You have a busy week ahead I notice. I hope you are coping OK juggling and organising everything - I know how hard it can be. My husband definitely didn't notice any side effects after his first session. I am not sure what chemo your husband has been offered - is it Gemcitabine? If so, my husband, and my general impression is that others, tolerate this very well. Fatigue is obviously the main one but, as I've said before, tell him to listen to his body and rest when he needs to. I hope all goes well tomorrow with your work and that they are supportive. Hoping also that you have been able to find out what financial support you are entitled to - don't be shy about this - you are entitled to help - ask for it - those bills don't pay themselves and you don't need any added worries. Take care, Jools.

Deb

x

[susikus]

Jools, have you applied for Disability Living Allowance? You will get it straight away at the higher rate and it is enormously helpful: £131.50 per week, paid every Wednesday. Please do get the forms, including the DS1500 from your GP and then you will be able also to apply for a blue badge which helps with parking and parking costs. We found this process has gone very smoothly. I am very lucky in that my work (a GP surgery) have just told me to take compassionate leave and are paying me in full. So I felt a bit awkward claiming DLA but everyone has encouraged me to take it as we are all entitled to it and there is no doubt it comes in handy with some of the increased costs. Good luck with it all. I am looking forward to hearing how the chemo goes. We have the district nurse visiting tomorrow too.

[Jool2504]

Earning morning to everyone. First chemo session at 16:00 today. Bills still not sleeping well at night I'm off to sleep in single bed, last time I did he slept all night.

Hospital have said he shouldn't have too many side effects on the gem chemo treatment. He took him amitriptoline at tea time then his oxy at bedtime think when he takes them together they counteract each other. He's having really bad dreams & twitches are terrible he twitches / jumps so much it wakes him up. Can hear his groaning in bed whilst I type this. The district nurses came today I read the paperwork afterwards saying his eating is inadequate & told me they are concerned about his anxiety. Got a script for fortisip, flamin chemist have had to order it so will collect before chemo tomorrow.

Has anyone else experienced the purple toe thing? Oncology say its a symptom of PC, it gets really bad when he's in bed or stationary but as soon as he walks about it goes.

Work have said I have to work from office no more working from home if I go back, can't do that when I'd be in Brum & Bill in Mansfield, have been offered exit on capability so would get a small payout. Macmillan are dealing with forms, attendance allowance & blue badge. Just have to decide what to do about work, realistically I'm going to have to take the package. Have arranged meeting with building society to see what I can do.

Got to go Bill is stirring.

Thanks for the advice, dreading seeing him hooked up to IV.

Nite. J

[laura]

hi jools, please dont worry about the chemo brian had 19 months of gemcitabine. its over within the hour, youll have a cup of tea and biccies, talk to others, and bingo,time to go, am sure you will wonder, what you were worried about this time tomorrow

wish him well from me [ if you can] and you sleep well, talking of amitryp, the dr tried me on it and i had awful dreams, wasnt at all gd for me, yet bri takes one at night, no probs, strange isn't it ?

love and strength laura x

[susikus]

Good luck with today Jools. Laura is right - the chemo admin is relatively easy. From what I can gather people react differently but many people get a bit of nausea and tiredness - well we have that already. Our chemo is not today after all - but we are seeing the oncologist again today, then tomorrow we have a chemo training session for patients and relatives starting chemo - 2hours long, organised by MacMillan - and then we have the chemo appt at 2.30pm on Friday.

We will be thinking of you today. Hope it all goes well, let us know tonight if you can.

Hugs, Sue

[DRAD3]

Hi Jools - hope all went well today. My husband also had very fitful nights - lots of twitching and restlessness - perhaps just the anxiety and worry - he must have had many nightmares he didn't share with me - understandable. No experience of the purple toe I'm afraid but it would seem the doctor's aren't too concerned, from what you say. Sorry to hear that work have forced you into a tight corner - I do hope that you manage to come to a decision that you can live with and that doesn't leave you in a financial pickle. So much to think and worry about as well as PC - you are doing amazingly well coping with it all, Jools. Love and continued strength.

Deb

x

[yorkypaul]

Hi Jools. I am not yet experienced enough to give accurate advice but would like you to know that you are both constantly in my thoughts and prayers.

[Jool2504]

Bill is my hero, he was fantastic today, once he was hooked up he fell asleep, think he was worried about initial reaction that his body would have. It only took 50 minutes, he was feeling quite sick but seems ok now, he's had pineapple juice & chunks & tasted it, first thing he has tasted right in days. He said he was tired but has only just stretched out on sofa & is now asleep. Looks like he's twitching quite bad in his sleep, going to speak to Dr about alternative to zomorph, his zopyclone has been doubled just hope he sleeps tonight he was up 6 times last night! Chemo next week is at 10am which will suit him better.

Last night I decided to try & contact his sisters whom he's not heard from in 4+ years, his niece called this morning, sadly his eldest sister died in February, she also had terminal cancer but it was lung, she had a stroke & died. His youngest sister has altziemers (excuse my spelling) his nieces are coming to visit on Sunday. I had to break the news but he took it far better than I imagined. Strange situation as my family are close.

Hope he has a good night & is ok in the morning so I can pop out & get a few things.

Thank you all for being so supportive.

[susikus]

That sounds like it went well Jools, well done both of you. I hope ours goes as smoothly on Friday. How many sessions are you doing? And are you monitoring with CT scan or blood tests or both? I hope you have a good night tonight, sleep well...

[laura]

hi jools, so glad some of your fears about chemo, were unfounded, did your hubby not have an anti nausea injection prior to chemo?, bri used to have metocloropine [domperidone] , he had 8 a day every day i used it as preventative rather than cure, sorry if i have already told you that!!!!

bri usually found that the next day and half,after chemo, were pretty well non existant, tiredness, some sweating / shivers, just replanned our days /life?. though other times we would go shopping on the way home, and he'd be good, played it by ear, hope it works out the same for you both, thinking of you and wishing you so much luck. love laura xxx

[Jool2504]

Tried sleeping with him but his tremors are horrendous he's smacked the wardrobe 5 times in half an hour, think its the amitriptoline thinking back he's been like this for just over a week & that's when he started on them. Another call to the GP in the morning.

He has 8 weeks of chemo before a CT scan as his blood tests have all come back

Normal it was the ultrasound that found the cancer. He has 3 more chemist then is seeing oncologist again.

Susi hope the chemo goes as well for you. He had anti sickness into his IV and tablets to bring home, 4 per day before food. Friends father in laws being diagnosed with PC today he's having his pancreas removed next week.

[susikus]

I hope you managed to get some sleep in the end Jools! I think you're right about the amitryptaline and we need a hotline to the GP! I am very impressed with how our GP surgery is handling us - the first time we've needed anything more than routine assistance. I hope yours are as good and keep asking if they're not. Let us know how today goes. We are off to chemo training session today and chemo itself at 2pm tomorrow so I am keen to hear all the details. Lots of love to you, Sue