My 41 years old husband has inoperable pancreatic cancer

[SusannaUK]

Hello,

My name is Susanna, I have been reading this forum for a couple of weeks but just registered a few days ago. I am so sorry to read that many people are going through the same things and know this awful illness. You are all wonderful people and it is good to know that you give tips, support and advices to each other.

My husband is 41 years old and he has inoperable pancreatic cancer metastasis to liver and bones at his spine. I still cannot believe this and feel that life is so unfair with us and all people who have this terrible illness.

We have two gorgeous little boys; 3 and a half years old identical twins. For me one of the hardest thing is when they ask about their daddy, when they tell me with sad face that daddy is ill. Then they ask me if he will recover. On his better days they run to me with big smile on their face and tell me that daddy is feeling better, he recovered! It’s heartbreaking! I am a very strong woman but I don’t know how I will survive this!?

My husband started to have back pain in November last year and very quickly it’d become very painful. He went to his GP several times but she just prescribed pain killers and said to him to take them and the pain will go. She didn’t want to investigate the cause of the pain. So my husband is on pain killers since November 2013. He visited his GP every two weeks because the pain was just stronger and stronger but she didn’t do anything! In about beginning of February he started to feel abdominal pain, GP still didn’t do anything just gave him more and different type of painkillers. He could not sleep flat since December, so he has spent his nights in an armchair from then on. Couldn’t sleep, still was working and looking after the boys in the mornings. He was in terrible pain. He worked from afternoon till late night, I worked all day. Boys were in nursery only in afternoons. He was begging for examinations, then GP referred him to back pain clinic, ignoring abdominal pain. By March it was really unbearable for my husband. GP started to prescribe morphine!!! She didn’t want to see my husband again, because she told him that he is a “chronic complainer”, going to see her too often. Terrible woman!!! She asked the other two GP in the practice to see my husband. Can you imagine this!? From March to April my husband lost 20 kg (3st 2.1lb) in 5 weeks! When he said this to the GP, the GP said to him: “Actually that is very good, because you were too heavy!” My husband was a big guy, not fat, but big, lot of muscle. He was 122 kg (19st 3lb) at the beginning of March, now he is 88 kg (13st 12lb). Looking back I think it’s lucky that he was big... And this still didn’t make the GP think that there must be some serious thing behind this weight loss! I really can’t believe it! In April a lot of things happened. I had to call the ambulance 6 times all together and each time they took him to A&E. There he had blood tests, X-Ray and always was sent home with a smile on their face that “Don’t worry! Nothing is wrong with you, just keep taking painkillers, morphine!” We were very angry so we asked them to write to the GP to send him for endoscopy and abdominal scan. At the end we achieved to have his endoscopy on the 17th of April 2014. It didn’t show anything, they said that his stomach is OK! So next step, we begged for abdominal scan. GP said it will take 8 weeks to get an appointment! My husband called them every day and because of cancellation he could go for abdominal scan on the 24th of April 2014. Result showed some wounds on his liver, what they said need to be investigating further and he will have a CT scan in 3 weeks from that date. We felt that something was very wrong! My husband was taken to A&E again on the 27th of April at night with unbearable pain and there was a doctor who told him: “Ok, I will take you seriously. Come in tomorrow morning and I will do a CT scan for you.” He went in on the 28th of April and had the CT scan. Then he had to wait all day, doctors had a big meeting about him and in the evening they told him that he has inoperable pancreatic cancer metastasis to liver and he has maximum up to 1 year to live! He came home and he didn’t tell me yet. He kept it for himself for a week! He told me on the 5th of May. I was shocked; I was just crying for 1 week, I just couldn’t believe it! From then everything speed up! 8th of May (Thursday) was the first meeting with the oncologist, I went with him. That was awful, I was numb, I almost fainted when he said to us that in the worst case he’s got 3-6 months to live, in the best case 1-2 years, but that is very optimistic. When he said this, the oncologis had tears in his eyes and just said very quietly: “Sorry, I am really sorry.” I felt numb, I couldn’t feel my fingers, I almost fell from the chair. This is an awful feeling, which unfortunately all of you know. We came home and on the way home my husband’s mobile was ringing. It was the doctor, and he said to him that he wants to start Folfirinox as soon as possible, so he asked us to go in on Monday (12th of May), to insert PICC line. 13th of May my husband has his first chemo. He has every 2 weeks, on Wednesdays, he has already had 8! 4 more and we will see. After the 5th one, he had a CT scan (11th of July) and it showed that all tumours decreased in size, the doctor was very satisfied and we were happy because he responds well to Folfirinox. He is very strong and brave! I am so proud of him!!! Unfortunately he’s very tired and sleepy all the time and the worst thing is eating! He doesn’t want to eat much, so he’s losing weight still. This is what we have to work on.

It is very hard for us because we don’t have any family in the UK, so we are on our own. I am exhausted. I have to look after him, his medication (a lot!), the boys, the house, I don’t know how I am still on my feet. But I think the answer is: I have to. I don’t know how I will cope in the future, sometimes I don’t know what to do, what to tell him. He is annoyed because I am asking him every half an hour if he is ok, if he needs anything. I just don’t know what the best is!?

I am sorry if I was too long but I just wanted to write this out of me and now I feel better!

I wish a lot of strength to all of you!

Susanna x

[jay]

ah Susanna, sending you a massive hug. So pleased your husband tumours are shrinking. I constantly ask my husband if hes ok which drives him mad.

Its amazing where you get the strength from but as you say we have too. Children are a true gift, we have a 9 year old daughter and the tears stop the minute she walks in the room.I cant get over your husbands GP, just shocking.

love Jayne

X

[nikkis]

Hi Susanna,

Welcome to the forum. We all found posting for the first time hard, but hopefully you found it helped to write it all down? I am so very sorry to hear what has happened to your husband, it is truly shocking.

It must extremely hard coping with such young children with no family nearby, it sounds like you have both been amazingly strong. Do you have a hospice nearby? Ours offers lots of support to families. They can also help you find out what benefits you are entitled to. Macmilian nurses will do the same, take all the help you can!

It is very hard to feel positive, but It is very good news that the tumours have shrunk, and it sounds like you have a good oncologist, so hold on to that. Has anyone prescribed any high calorie drinks for your husband, they can really help if he doesn't feel like eating?

Take care and keep us up to date,

Very best wishes,

Nikki

[J_T]

Hello Susanna and welcome. I echo what the others have said and very good news your man is responding well to the folfirinox!

In addition I would diary your journey so far, visits to your unbelievably useless GP, hospital visits etc because this cannot go unmentioned. You have a lot of plates to juggle currently but do keep this record for future use. I had to, reluctantly, make a complaint but it was received and dealt with well.

Julia

[sandraW]

Hi Susanna, welcome to the forum no one wants to join, but now you have posted you will get lots of help and support.

Is your husband taking Creons, they help to digest the food so his body can absorb the nutrients, as Nikki says ask the GP to prescribe the high calorie drinks, they are a big help, also make sure that your husband's blood sugar is tested regularly as PC causes diabetes and this is made worse sometimes by the steroids taken with the chemotherapy. This can cause weight loss, but in our case my husband was prescribed insulin just while he was on treatment and he put weight back on quickly.

We too struggled with our GP, we didn't have as many problems as you but it did take about 6 months to get a diagnosis, which was found purely by chance with an ultrasound on his gall bladder.

Its good that your husband is responding well to the Folfirinox, it does cause tiredness

but its doing its job and that's what counts, my husband had 12 courses but was back to normal energy within 4 weeks when his course finished.

It must be so hard not having family around to help with the children, as Nikki says enquire what help you are entitled to, we found Macmillan at our specialist unit were really helpful with benefits.

I hope your husband continues to improve, and your twins help you through these difficult times, take care sandrax

[Didge]

Susanna, I am so sorry to hear your story. We are used to late diagnoses by inept doctors but yours is extraordinary - to be labelled a chronic complainer without any exploration is unforgivable. I do think you should make a complaint - it may help you to feel that you are doing something about the dreadful treatment your husband has had. I would recommend giving AvMA a ring - you can google their website. They were very helpful to me some years ago and can give free advice and, perhaps, help you to get answers. I do also feel for you with your small boys. I lost my first husband to kidney cancer in his 30s and was left with 3 children under 6. It's an agonising time but you will get through it and your children will be a great comfort to you in the years ahead. And they are old enough to be able to remember their father, however much time he has left - my middle child was just 3 and 2 months when he lost his father and does have some memories which is good. We are all going through, or have been through, hell on this site and try to help and support each other through the bad times and the rare good times. For now, you can take comfort that the treatment is helping and try to concentrate on living with hope that your husband has more time left than you feared.

Take care x

[LMD]

Hi Susanna

Sorry to read about your husbands diagnosis. Echoing what others have already said I just wanted to say hello and let you know I'm thinking of you x

[SusannaUK]

Dear All,

Thank you for all of you for your kind and supportive words!

My husband got some Ensure drinks but he is struggling with those too. I try to convince him to take them regularly and he tries his best, but still hard for him to drink them. He has also taken Creon capsules since he was diagnosed, so it helps him in digestion.

When he had his first chemo I was with him and the nurses suggested me to go to Macmillan Center, there is one in the hospital, so I visited them and they were really supportive and helped me a lot. At the beginning I was lost, my head was spinning, I felt like I was in another planet, didn't know what to do, they gave me a guidance and a good kick off to this journey. They referred me to a local advisor nearby where we live (we live in London). So we are in good hands now. I've met a very nice benefit advisor, we sorted out some things and now it's some kind of stable but still don't know how I will cope. My employer as well very supportive! HR manager told me straight away to go and visit my GP and ask her to sign me off from work, which I can do for a maximum of 24 weeks and I am full paid. They are very very nice. I've been working there for 8 and a half years and they understand that our situation is very hard now.

After the first chemo my husband was very poorly and feeling sick all the time, the boys irritated him, we live in a flat, so there was not enough rooms for him to "escape", plus he had very big pain too. After the diagnosis two nurses came and visit us from a local hospice and since then they have been very helpful. They asked us, if we want him to go to the hospice for a while until they sort out and stabilize his pain. At first we were a bit worried about this because the word "hospice" is so scary but then we saw that he can not cope at home, so we accepted it. He moved into the hospice on the 24th of May and stayed there until the 15th of July. That was the day when he moved back home. This 2 months was good for him, he had a little bit of rest, quiet time and absolutely fantastic care. My father came from Hungary to help us for a while (I am Hungarian), which was really good because I didn't feel alone with the boys. Sadly my Mum died when I was just 11 years old, so I have only my father who can help. Also I have a sister, she came for a week in summer too. My husband is from Venezuela, his family is all over there. His father died, he has his Mum, but she is in wheel chair and she can not come over to the UK. My heart is just so sad when I hear them talking on Skype, it must be terrible for her to see his son like this. My husband wish is to visit them in Venezuela once more. I always cry when we talk about it, it's just heartbreaking! I really hope that we can do it, that we can go once more together, him, me and the boys.

There is another charity organization for cancer patients and their family, here where we live and give us a lot of support too. My husband goes there to have massage, acupuncture, yoga, meditation, even gym. He tries to stay busy, although he's very tired and weak but tries his best. And we can go for counselling too and the boys go for playing therapy. I feel lucky that despite the fact that we have no family here, we still get a lot of support. But I just can't help it, still feel lonely and still don't know how to cope. I still cry a lot when I am alone. The worst thing is I don't know how long we have together and don't know what to expect. It's so hard. I know that you all have the same feeling and questions inside. It's so sad. You are all amazingly strong people!

Didge, it must have been a very hard time for you to stay alone with 3 small children. I am so sorry to hear this. You are amazing, I just hope I can be as strong as you!

I apologize if I don't reply very quick, but I am very busy and just have time to sit at the computer when the boys are sleeping. I hope I will have time to read your stories too and get known the forum members a bit better. It is very helpful to chat with people who go through the same, I just don't feel that lonely.

Take care all of you!

Susanna x

[Bowie]

Susanne like all the others here I am so terribly sorry to hear your sad news. I think you are coping amazingly well and can't begin to imagine what it must be like with your two small boys to look after on top of all the emotional upset and stress; even though I know they must be a joy too. It's really good that your man has had such a good early response from chemo and although I know the statistics are terrible, there are some people who defy the odds. In the early days of James' diagnoses although that was only March I couldn't stop crying and even now I'm often in tears when alone.

In terms of weight loss, James can't manage the drinks either. I tried him on power shakes but those too had a bad affect with increased diarrhoea. There is a really inspiration man on this site, who uses bananas to help stop diarrhoea and James has been following his example by eating them just before most meals, again with with Creon and although James hasn't actually put on weight he has maintained his weight which while under going chemo we are told is good and we are sure the extra calaries in the bananas are helping.

Thinking of you and your family. Fiona X

[nikkis]

I am glad to hear you have good professional support, but that is not the same as having family around. We all know how tough this is, and I have days when I can't stop crying, it is so hard knowing whatever happens life will never be the same again.

You don't need to worry about replying quickly, some people will visit the forum most days, while others far less frequently, do whatever helps you, and I agree the forum makes you feel less alone,

Best wishes,

Nikki

[Didge]

Susanna, I am also in London. If you would like to email me privately I believe you can ask the administrators to give you my email address. If we are near we may be able to meet up some time. Also there is the London support group which meets at the South Bank once a month - the next one is Wednesday 3rd September at 6.30pm.

Didge x

[Cathy]

Hi Susanna

Welcome to the forum. I can't really add to what the others have already said but the nurses on here are fab if you ever need any advice or support. You can email them support@pancreaticcancer.org

In particular, if you did feel that you would like to pursue a complaint about the GPs response then they can help point you in the right direction. I'm quite shocked actually at how often you were fobbed off and the comment regarding his weight loss.

I always advise people to keep a diary. We used it to make notes in meetings and as an aide memoir to treatment side effects

There is a variety of high calorie your husband could be prescribed. My own rather liked Fortisip.

I also live in London so happy to chat privately if you wish.

It is a tough journey you are on but use this forum and the nurses - both will help inordinately.

Cathy xxx

[SusannaUK]

Thank you for all of your comments and support, it really means a lot. Here I can meet people who really know how I feel.

Fiona, your husband has diarrhoea? That's why he eats banana? My husband has the opposite, he can hardly go to toilet. I'm glad to hear that James can maintain his weight in this way. At least not losing any. That is already a good result. At the moment my husband continuously losing some, but recently just very little. I hope it will stop soon and at least keep his weight.

Didge, Cathy, I will try to get your email address from the administrators, we might be able to meet up some time, it would be nice. It is very hard for me to find free time but I will try.

My husband is very tired these days, he is just sleeping all day. It was a hard 3 days, weekend and Bank Holiday Monday, no nursery, boys were with me for 3 days, all day, I am tired. Especially today was difficult because of the weather, we were inside the flat all day. But it's over now, tomorrow they go to nursery in the afternoon, so I can do a little bit of work.

On Saturday morning a district nurse came to disconnect my husband's chemo bottle but it was not finished yet, so we asked her to come back on Sunday morning, she said she would come back. She didn't turn up, I tried to call their number several times but nobody picked it up. I still can't believe what I just did yesterday around midnight. My husband said that he had enough, let's do it ourselves. The nurses told him in the hospital that he can do it for himself, they showed him how to do it. So we disconnected the bottle and flushed both of the PICC lines. I still can't believe that I've done it! I am so scared of needles, and PICC line and this kind of staff, but I flushed it. We have all sterile equipments at home. When I was younger I always fainted when I had blood test but the last few years made me a bit stronger in this matters. Our boys were very premature, they were born at 30 weeks, I spent more than 2 months in the hospital with them, there were lots of needles, wires, tubes, so it trained me a bit. And now my husband and his chemo and PICC line, I am getting there... I feel stronger now. I even thought I might inject him one day. He has to have an injection every day, because in May they saw a blood cot in his lower leg. He is doing that for himself.

Nobody turned up today either from district nurse team, so I am glad that we did it yesterday. Tomorrow is working day, I will call them and ask them why they didn't come...

Thank you again and take care everyone.

Susanna x

[Cathy]

Hi

I was taught how to flush the Picc line and it is very straight forward. I would advise definitely doing it yourself as it gives a lot of freedom if travelling is ok.

Please do get in touch if you would like to. It would be nice to meet Didge too

Cathy

Xx

[Didge]

Mine has a port so I think it needs flushing only once a month. But we have already experienced district nurses not turning up! I am in North London if that is any help but I work in the West End. I do aim to be at the next South Bank meeting though, all being well.

x

[SusannaUK]

Hello,

Cathy, you are right! It's better if we are going to do flushing and bottle disconnection ourselves. As you said it gives us freedom and we will not have to wait for district nurses all the time. It was just my fear of all these medical stuff..., but I think I am OK with them now.

Didge, we are in North London too! So we are very close. Unfortunately I cannot go to South Bank on next Wednesday. I have the boys with me at home at that time.

Cathy/Didge, I haven't figured out how to get in contact with the administrator to get your email address. Do you know how to send the administrator a private message on this site? Or: when I registered I received an email from pancreaticcancer.org.uk, shall I try that email address? It would be really nice to meet you.

Take care,

Susanna x

[Didge]

You can try. I don't know how to do it but if the administrators are reading this I am happy for you to have my email address, Susanna!

[SusannaUK]

Thanks Didge. Let's hope that the administrator reads this and will contact me privately to give your and Cathy's email address. I will also send an email on the registration one. Maybe I will be lucky to have a reply from them.

[Cathy]

Hi

Sorry, have only just read this. I know that Jeni has now replied but what I would have suggested would have been to email support@pancreaticcancer.org.

I'll email you back now.

Cathy xx

[SusannaUK]

Thank you Jeni! I've got your email Cathy, now we can arrange meeting.

Take care all of you! x

[SusannaUK]

Hello All,

Ahh, I am so devastated. My husband should have had his 9. cycle of Folfirinox today, but they'd cancelled it. The blood test came back with a bad result. His blood platelets are too low. I didn't really understand, he told me over the phone... It should be minimum 100 but his is 69 now. This is the first time it came back bad, I don't know what to think. Is it normal? The oncologist said that he will have the chemo in 1 week. How will it go back to normal level? Ohhh, I am so sad now. He is on his way back home now.

Has it happened with any of you? Please let me know.

Thank you!

Susanna x

[Annie14]

Hi Susanna

Please do not worry as this is common and has happened to my husband on numerous occasions.

He is now on cycle 15 of folfirinox. He always goes back one week later and everything goes ahead as normal. My husband

swears by eating kiwi fruit and oranges to improve his platlets and getting them above 100. There is lots of information online about foods to eat to increase platelets. It is nothing to worry about at all and I understand very common . It's just his bodies way of saying he isn't quite ready for chemo today.

[PCUK Nurse Jeni]

Hi Susanna,

Yes, this happens very commonly - nothing to be upset about, and as Annie says, the body's way of saying "not today - I need more time for these to recover". Normally, folk can have the chemo the following week, and for many, the extra week is a welcome break and helps them to feel better.

All of the blood components in the full blood count are made in the bone marrow. Having chemo affects the bone marrows ability to reproduce these in time, so giving more chemo on top of this would lower them further. Hence, by waiting, they will recover themselves.

I am not aware of any dietary influences, since this is caused by chemicals affecting the bone marrow, but he can try things if he likes. Try not to be overly worried about this, it really is very common and as nurses and doctors, we don't get worried about this type of side effect.

Kind regards,

Jeni.

[Slewis7313]

Susanna, I had a similar problem a few cycles ago though it was my Neutrophills that were low. My chemo was deferred by one week and I did enjoy the extra week off chemo during which I felt really well. I have also just had a week off for a Holiday and today's bloods are as a result all reading high. Nothing to worry about!

Steve

X

[SusannaUK]

Dear Annie, Jeni, Steve,

Thank you so much for your quick reply. I feel much better now with your explanation and support. So I am not worried any more, as it seems to be normal with this treatment. It was just so sudden, we didn't expect this and was a kind of bad news. But now we are hoping that this week actually will be an enjoyable week with less tiredness and fatigue. Let's see.

Thank you again!

Susanna x