Struggling with it all

[Judith16]

I pop on this forum quite a lot and today, with tears rolling down my face it seems it is time to share my husbands journey with you all.

Just two weeks before Christmas 2015 my husband was diagnosed with Stage 4 PC at the age of 54. To say we were shocked stunned, is a bit of an understatement. As you can imagine we went through disbelief, shock. Having to tell our children, 28, 30 and 25 plus his parents and other family members was pretty traumatic. Having done that we got on with enjoying Christmas, a big one as we did not know whether he would make another one and we still don't know!!

31st January 2016 he started Gem/Abrax, which he tolerated pretty well until the third cycle and then he was wiped out. We were then given a break as the cancer markers had come down. So we decided to go on a cruise, it was very bouncy!! We then had a weekend at home and then went to Disney Paris with our children and grandchildren.

We were then hoping to start another cycle of Gem/Abrax, but husband became jaundiced so had to have a stent fitted. Recovery from that took a little while. Well he had another two weeks of the chemo and he was just so ill, he could not get off the sofa. Another CT scan was ordered and we found out the chemo was not working, his cancer markers had risen considerably. Hubby was by this time in hospital with septicemia which was not responding to any antibiotics. Eventually after 2 weeks his temperature stayed stable and he was sent home 12lbs lighter. Since this we have seen the Oncologist and he has put him on a new combo F5U and Oxaliplatin. Wednesday last week when he had the chemo, he was ok, the F5U was on a pump at home. Thursday he went to work and even suggested a meal at our favourite Indian Restaurant, which was wonderful. Friday it all went down hill. He is breathless, coughing (been a problem since before diagnosis). Monday we spent in hospital as he couldnt walk, we thought another infection even no temperature. I even had to push him in a wheelchair. We thought we would get to see our Oncologist yesterday (Tuesday) or even talk to him, but nothing. My husband feels so bad, he has no appetite, everything he eats or drinks tastes of rusty nails, so therefore he is losing more weight. He has terrible stomach pains when anything hits his tummy. He has spoken to his chemo nurse who says she is trying to get hold of his Oncologist. Is this the beginning of the end? We feel so lost and lonely at the moment, my husband feels he doesn't want to carry on fighting. All he wants are some normal days so we can go out, maybe a weekend away.

His mets are in his liver and lungs, with the lungs being particularly bad. He's asthmatic so gone for the most vulnerable part of his body!

[Didge]

Judith, just wanted to say hello and sorry for all you and hubby are going through. There are so many possible reasons for the symptoms he has at the moment. Is he taking creon to help with digestion? I do hope you get some answers soon. But as for 'is this the end?' nobody knows those answers but I can't tell you how many times during the last 18 months of my partner 's life we thought that only for things to turn round for the better. He was diagnosed at 48 and I think that adds to the shock. Didge x

[Judith16]

Thanks Didge for your reply. Yes he had creon from the very beginning thank goodness.

A very bad night last night, I am shattered!! Tea is the order of the day and to pull myself up by my bootstraps.

Sending you a big hug, you must really miss your partner.

[Dandygal76]

Hi Judith,

How are you doing today? I have been told recently that when you are in hospital you can also request to see the palliative care team (this came from a medical person in advice but I have not tested it yet) and they may be able to help with symptom management so it may be worth trying that. We all know how frustrating stomach problems are with this and I agree with Didge about the Creon, we have just massively increased dad's doses and it has made a huge difference.

Hopefully, as with the septicemia, he will just turn that corner again and bounce back. I totally understand how you feel when we see them get so so poorly and down trodden.. it is a helpless and horrible feeling.

My dad is also asthmatic and the chemo has really effected his asthma and he had to really up his preventative dose so that may be effecting your husband as well but also, as we know, everyone is different with these things.

Dad has also suffered with the bad taste in his mouth and I know they can give a medical mouthwash that can help with some people but for us it has been trial and error of whatever he fancies at the time.

I hope he is feeling better today and will bounce back for those weekends he longs for.

This forum is very supportive and a good place to be right now in your situation.

xxx

[Dandygal76]

Our messages crossed, I am glad he is getting the Creon. Boot straps and lots of love is certainly the order of the day. x

[boa]

Judith

I tried to post earlier but it seems to have disappeared. Just to offer you support and to say I understand how you feel. I think the thing I learned when my husband was very ill was to respect the decisions he made about his treatment even if I had other views. I hope we can support you here.

Catherine

[PCUK Nurse Dianne]

HI Judith,

Thank you for taking the time to share your story, and sorry to hear these are such difficult days. As others have suggested, it is good to hear your husband is taking Creon, and it may be that this dose needs review, certainly some of the symptoms are similar to insufficient dose of pancreatic enzymes,I will touch base with you personally and see if we can 'tease out' this a little further.

I note you mention that your husband has been breathless, and I am sure the team looking after him are expert at his care. Has a clot been excluded? We know that clotting issues are very common in patients with pancreatic cancer, so DVT (deep vein thrombosis) that has mobilised and travelled to become a PE (pulmonary embolus - lung clots) is a possibility too.

As Dandygal has suggested, anyone can ask to see a member of the Palliative Care team, and I can explain their role. The Palliative care teams are expert at assessing and managing symptoms associated with the condition (frequently these may include nausea and pain, amongst others) that affect the patient's quality of life. These Health Professionals are also expert at speaking with patients and families and assessing their 'holistic needs'. This is an important aspect of quality of life and often relieves some of the stress of managing difficult conversations around care and many of the questions that people are scared to ask about prognosis, and managing symptoms during the time toward end of life. Sadly many people are of the belief that Palliative Care is a term associated with last weeks/days of life, which is not so.

Palliative care input is very helpful for reviewing and optimising patients so that they are able to leave hospital with a care plan and awareness of local resources should they require further input at home.

Judith I will make contact and perhaps we can review some of the current issues and see how we can help.

regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Team

Support free call phone: 0808 801 0707

Email: Support@pancreaticcancer.org.uk

[Guest]

Hi Judith,

So very sorry to hear that you are not getting the support you need. For some it goes against the grain but you have to be persistent with the medical folk, stand your ground, be polite and firm and keep asking to see the person in charge of your husbands care and if they tell you it is a multidisciplinary team, ask to see the team leader, I say that as the mother of a hospital doctor and the wife of a PC patient! Yes do speak to the palliative care team, very good advice.

I am really hoping you get some answers today and, more importantly your husband is made much more comfortable. Creon is fantastic but it doesn't always solve the problem. My husband eats tonnes of them but still needs a hot water bottle to help with digestive pain. He also takes Ometprozole which can also be prescribed to manage acid, might be worth asking about this if you don't already have it as the two often go hand in hand.

I'm glad you shared with us and hope that you will get some comfort and support from being here.

M xx

[Judith16]

Thank you all for your support. Today we have seen the respiratory physio at our local hospice. She was great, she has also made an appointment with the Palliative Care Doctor for us on Monday.

I have spoken again to my husbands chemotherapy nurse and she has now got hold of the consultant, who wants to see him tomorrow, we dont have a time yet!!

Sometimes I think we are lucky to having private health insurance, but those consultants are still difficult to get hold of!!

Hubby is very emotional today and very depressed, it doesn't take much to set him off. I am trying to be strong for him. He is more mobile today, but still in pain.

[Dandygal76]

Hey Judith, I hope hubby has turned a corner today and that you are both getting through the day with some comfort. I know I keep relating everything to my dad but I am afraid that is the only experience I have to try and offer different solutions that may or may not work. I never thought my dad would do it but the PCUK nurses suggested anti depressants a few weeks back when dad was very low and emotional with treatment and they seem to have really kicked in now and are really helping him to cope better with it all. My dad never believed in using them but we just caught him at the right time that he agreed to try. I know it is not for everyone but I thought I would mention it.

I hope the chemo appointment achieved some outcome for hubby and great about the Monday appointment. Even though that is a quick appointment it still feels like forever at times doesn't it?

Keep those boot straps tight and you know where we are if you want to vent. x

[Judith16]

Well, lets just say not the best day of our lives. WE saw the GP this morning, he was running later and then even later after he had seen us. He was lovely he listened and listened, never hurried us even though he was due to catch a plane to Mauritius later that afternoon with the family. Anyhow both of us got prescribed anti depressants. I really hope that will help in the longterm.

This evening we saw the Oncologist, he was only an hour late!! My husband is so emotional, the long and the short of it is that chemo is not an option as it causing too many side effects. In away it was good that this came from the Oncologist as I think it was in our minds but we did not want to say it to him or eachother. At present we have hunkered down at home, we have not told our family the outcome of the meeting. We just need time for ourselves.

We are hoping that as the chemo comes out of the system, he may have more energy, start enjoying food and drink and we will be able to have some quality time which has been really lacking.

We are seeing a palliative doctor at our local hospice on Monday, though we are still under the care of the nurses and the oncologist at the hospital.

As everyone says a roller coaster of a journey. I really would like to make our wedding anniversary in August, but one day at a time.

[sandraW]

Hi Judith,

I completely understand the "hunkering down at home" that's just how we handled the news when Trevor was ill, we needed 48 hours to get our heads round things before we soldiered on, and could speak to others about what was happening. I hope your husband feels better soon and that the palliative doctor can help him too, take care sandrax x

[boa]

Hi Judith

I'm sorry to hear this. Even when you sort of expect it, it is a blow. During his illness my husband was very emotional. He said that he had been like that all his life but I had never seen that side before. As the side effects of the chemo wear off I hope your husband will feel better and that you can enjoy some good times. Many of us here know how you fee.

Catherine

[Dandygal76]

Hey Judith, I am so sorry to hear your sad news and I really do hope that you get to spend quality time together when the chemo wears off and that the palliative care team can help your hubby to have comfort during this time. All my love. x

[WifeampMum]

Judith, very sorry to hear that you and your husband are going through such a terribly difficult time. W&M xx

[Guest]

Hi Judith,

So sorry that the chemo didm't work out and that you are now struggling to come to terms with being in the palliative care system. My husband Louis and I have been here for about 3 months. Initially we were both very tearful and emotional but that doses ease sometimes. If your hospice offer coping to caring courses for one or both of you, bite their hands off! They are absolutely great, very relaxed, deliberately not medical or pushy, they answer all the questions and give you and the patient lots of tools to help you cope. You also get to meet people in similar positions and tap into their experiences. The experience is so different to hospital world and I would highly recommend it. I now feel equipped to care for my husband and know what I might expect. We get regular visits from our hospice specialist nurse who co-ordinates visits from physios, OT's, district nurses as and when required. She and the GP are geared up to provide a hospice at home situation. All of this is care of the NHS for us, they are geared to bother only about comfort and quality of life. We gave up with the private firm when it became obvious that they were not really interested in supporting us at home and did not have the type of resources we needed.

It is not easy for either of us but about 1000% less stressful than being in the hospital system. I do hope that in a week or two you will both be feeling a little more able to cope. Keep posting Judith, we are all here with you.

M xx

[Judith16]

Its been a difficult weekend, but we have got there. Hubby very wobbly on his feet, but we got out for a stroll along the seafront which was lovely. Today, he was much better walking, we are hoping that the side effects of the last chemo is at last coming out of his body. The thing is we dont know whether his symptoms are from the chemo or the cancer.

To day we saw the Palliative Care Doctor at our hospice, she was lovely, hubby said that she was the first person who he felt absolutely listened to him and how he felt. We have another appointment with her next week.

We told our children 25,29,31 today and they are very upset, but understand that we need quality of life, not the shell their father had become. So here we go another journey, hopefully a fairly long one if possible to enable us to make more memories.

[Dandygal76]

Hi Judith, it is terrible hard to work out what symptoms are what and it is frustrating. If he has not been eating well the last few days or moving around so much it does also quickly take a toll on the muscles and so as he hopefully starts to feel better it will self perpetuate into some good quality time. I really do hope you get to your anniversary.

I am sure your children are extremely upset - I certainly get that one! However, I bet at the start of this journey you never thought you would get stability and as far as you have and strong as you all have. I thought those first few days / weeks was going to last the entire time but we learn coping mechanisms somehow and I am sure they will decide mentally to quash the pain they feel and do what has to be done and to make those beautiful memories with you. They have a lovely and strong mother with very hardy boot straps to guide them through these time. Thinking of you all. x

[PCUK Nurse Jeni]

Hi Judith,

So sorry to hear of all that has been going on of late, but I would agree with what Marmalade has written. I think you will find that it is a very different environment, and even that you are more holistically cared for. Its usually a very tangible difference.

As for the question about chemo versus disease, within the next 2-3 weeks, there should be a difference when effects of chemo are left the body entirely - and you will know if he starts to feel better, it was probably the chemo causing it.

With good symptom control, hopefully, you will gain some quality of life back, and be able to make your memories.

Take care,

Jeni,

Specialist Nurse,

Support Team.

[Proud Wife]

Just wanted to say I am thinking of your Judith and wishing you strength. I am the same age as your hubby so my heart goes out to you even more. I wouldn't wish this disease on my worst enemy and whilst you can't change the diagnosis, quality of life is so so important. I hope and pray that its the effects of chemo rather than disease and that very soon you can start to have some good times and create some happy memories. During my hubby's 14 month battle, we had 9 good months and I can't tell you how grateful I am for those. I wish the very same and much more for you and your family.

Judith, you have been an amazing support to me, even though your world is falling to pieces and I just want you to know I will do whatever I can to help you through the times ahead.

All my love

PW xxx

[Judith16]

Thank you all for your kind words and support, we are having a tough time as the chemo (hopefully) is coming out of his system. A day in hospital yesterday as they thought he had an infection. Luckily not. He is now in more pain than he ever has been in from the start, we have always said how lucky he was having no pain. This pain is in his stomach, the noises from it are unbelievable. He is barely eating as it causes pain. We don't seem to get anybody to listen to us, they just keep giving us morphine, which he will not take as he does not like to out of control!! Saying that he has agreed to take some oramorph 0.5ml, which just seems to take the edge off the pain.

He's not good today, so waiting for the community team to call from the hospice, if they haven't phoned soon then we will call them.

Its our granddaughters 5th Birthday on Tuesday, she is having a joint party with a friend, 30 children!! We are hoping to pop in for a short while.

Wishing everyone on the journey love and hugs. PW, take care lovely lady, you are in my thoughts xxx

[boa]

Judith

Sorry to hear about this. I hope that the community team call soon and give some pain relief. You are both in my thoughts.

Catherine

[WifeampMum]

Love and hugs back Judith. I hope your husband feels more comfortable very soon.

W&M xx

[Guest]

Hi Judith,

So sorry to hear your man is in pain. He doesn't need to be and morphine doesn't make you lose control. My husband is taking slow release morphine plus oral morphine when necessary and is fully alert all day! If you haven't already done it try a hot water bottle wrapped in a towel that he can cuddle. It is comforting and helps move wind which often causes horrible pain. Also, he can take paracetamol and ibuprofen together or interspersed with oral morphine. Just call your GP to confirm. Our doctor daughter says the most important thing is to get on top of the pain as soon as possible and then take regular doses, don't wait for it to come back before trying to beat it again.

Hope the palliative care team have got back to you and that your man is feeling happier. Things didn't start to get better for us until I stopped trying to make him eat and drink. Once the pressure was off and he only ate if he wanted it everything felt better.

Thinking of you M xx

[Judith16]

Marmalade

Thank you for the good advice re eating, I am trying not to get obsessed with the eating, but its very hard. The nurses were very good, we thing he needs a duodenal stent, so an appointment was made with a GP at our practice. The only thing was he had never seen my husband and thought he looked very well!! We were also told why were we bothering with this. So the long and short of it was he gave him some stronger anti sickness and told to phone A&E if we were worried over the weekend! When we followed this up with the hospice, we were told not to take those anti sickness as at that dose it would knock out an elephant. Happy days. I just need a good nights sleep.