More Bad News

[Ellie]

Hi everyone

Brian saw his doctor at the hospice today and got the results of his scan. The cancer has now spread into his spine - into 5 places, to be exact. No wonder he was suffering so much pain! It was a big shock to us both, but fortunately his case will be discussed tomorrow at our hospital, with everyone there who needs to be involved, to decide what to do next. It sounds as if they will consider radiotherapy to reduce the pain, with some sort of drug given by drip at the hospice. I've had a quick look at the Cancer Research info on secondary bone cancer and it seems radiotherapy is quite successful at reducing this sort of pain, with not too many side effects, so that at least sounds good news.

We should know more after tomorrow.

Ellie

x

[Nardobd]

Oh Ellie...I'm so sorry to hear your news. How did you get on at the hospital yesterday? Is there anything they can do to help Brian? How are you bearing up?

You know you can call or email if you want to talk.

Love

Nicki x

[Juliana]

: ( Poor Brian.....have you considered Fentanyl patches to help with the pain? It works wonders for me, the only thing it doesn't stop is the spasms....but for my back and stomach ache it's amazing, without it - I wouldn't be able to leave the house.

Thinking of you both,

Juliana

[clair2305]

Oh Ellie

this I did not want to hear. Have you an update for us yet?

So sorry to hear about the spine, don't really know what to say. Is the radiotherapy just to ease pain or also to shrink the tumours?

I will update my thread now.

Best Wishes

Clair

[Ellie]

Hi everyone

Thanks for all your support. We thought Brian was seeing someone at the hospital last Thurs/Fri, but the appointment is now for Tuesday . We don't know what will happen - whether it's just a discussion, or if they will do another scan, or start treatment. I suppose we've been lucky to have had the scan results so quickly, and to get an appointment for Tuesday, so we can't complain.

As far as I know, the radiotherapy is to reduce the pain. We know it's definitely not a cure. One small spark of positive info was the doctor saying she'd known patients to survive 2 years with spread to the bones. Looking back, I really wish we'd asked for a scan months ago. Brian has had pain in his back for months but the hospice kept trying to adjust his pain relief and said it was trial and error to get the right dose which would help with the pain, but not have too many other side effects. Of course, morphine taken in larger amounts does shorten life, so they have to be careful.

Brian found this new situation very hard to deal with at first. He had come to terms with what was happening to him with his liver and thought that would "see him off into the sunset", as he put it. Knowing he now has to start seeing new doctors, talking about it all and having more treatment really shook him up for a few days. Anyway, in keeping with our motto of "carrying on regardless", we still went away to our best friends yesterday and enjoyed a great murder mystery night, dressing up and acting out the parts, with hilarious results. It certainly cheered us both up and Brian has been in good spirits just by being away. Just need to keep him occupied until Tuesday now, as I know he's worrying about what they will say. I am just praying that the radiotherapy will take away a lot of his pain, because at least then he can cope with everything else. Juliana - he did once ask about the patches you use but for some reason was told they were not suitable for him. Not sure why?

Will let you know how we get on after we see the docs on Tuesday.

Love

Ellie

x

[Ellie]

Hi all

Saw the specialist in Leeds today and Brian had a scan, which will show them where they need to direct the radiotherapy. He has that on Thursday, so that's one relief - no long wait. It's a weight off both our shoulders, as he did have terrible pain last night for some reason, and we're just praying that this treatment will work to reduce his pain in the near future.

How is everyone else? Any news from Ted's scan yet, Nicki?

Thinking of you all.

Love

Ellie

xx

[Ellie]

Hi everyone

Update on Brian. The radiotherapy worked brilliantly and Brian now has very little pain in his back, apart from some across his shoulders. We assume this could be from his liver, as he was getting that sort of pain before it spread downwards and under his ribs, which we now know was from the spread to his spine. He had also been getting terrible shooting pains around his chest area and into his arms, but these seem to have stopped also. He's taking OxyContin morning and night, but has been able to cut right down on the OxyNorm for breakthrough pain, and also reduced his Pregabylin which was for nerve pain.

Generally, he's lost some weight over the last few months and gets tired when walking but being in so much less pain is a real boost. I saw Juliana's post about Cachexia and asked Brian to talk to his doctor at the hospice about it. Thanks for that, Juliana. She has decided to try him on steroids to begin with, to help with his appetite as sometimes he doesn't feel like eating and I was concerned he would start losing too much and feel weaker. He was having some nausea, which didn't help, so his anti-sickness tablets have been increased to see if that will help (not sure if this is caused by the radiotherapy or the cancer). He does sometimes have a little trouble in swallowing, which is down to the radiotherapy, but it's only every now and again.

Now for the crazy bit.....we decided late yesterday afternoon that, since he can travel without pain at the moment, that we would go and join our best friends in France! We're going on Friday with our caravan and staying for 8 days. It was all arranged within an hour - I got the time off work, booked the ferry and camp site and now (at 3.30am) can't sleep for thinking about what else I need to buy/pack/sort before we go! I never thought we'd be travelling this far again and I just pray that everything will be fine on the journey there and back. Enjoying ourselves in the sun with our best friends will be the easy bit! Brian was given 6-12 months to live, last July, so he's really on borrowed time right now. That's why we have to seize the moment and enjoy what we can, while we can.

I know a lot of you are going through such awful times and I, too, have struggled, trying to cope with Brian constantly being in pain before his radiotherapy, so my heart goes out to anyone who is caring for a loved one. Even more to those of you suffering personally... My thoughts are with you all, especially Clair who is in much the same boat with Blue, and Juliana who is one very strong and brave lady. Sending you both love and hugs.

Love

Ellie

xx

[clair2305]

Ellie

are we all crazy, me driving to Spain, you booking ferries at 3am

Anyway, hope you are having a great time and I hope that the steroids have kicked in for Brian. Blue had them in the beginning and I refer to them as the Belgian Bun pills haha.

We are having a week away in Southport next week and in a caravan, a static one. When Blue was working he worked in Liverpool when it was the city of culture and despite working for the Arts Council at the time I never got the opportunity to visit, so we're staying in Southport so we're by the sea and can go into Liverpool and do some culture stuff (and shopping n eating).

Blue's up and down with his pain, also in shoulder and very stiff in the morning and evening. Spoke to Mac nurse yesterday who will speak to palliative care doctor Blue saw and may change to Oxycontin. Is Brian better with Oxycontin that he was with MST?

Anyway, hope you are having a great time, that the steroids are working (as well as the pain relief) and that you have found a nice little patisserie lol

Take care

Clair

[volmod]

Hi Ellie: Crazy to go away? No – brave, bold and inspired, in my book. I hope it's been a real tonic to be somewhere different, but among friends. And amazing that it all got sorted in one hour - real life ain’t like that very often! I’ve been following your postings here for some time and wanted to say how wonderful that the radiotherapy delivered for Brian. Hope this continues way beyond your journey over the Channel and back. Let us know how it went when you have a chance to update. xx Vee

[Ellie]

Hi everyone

We're back from France and had a great time. It was a lot of travelling - 1400 miles in all - and if I'm honest it was that bit too far in the end for Brian. It was 32 degrees all the way there and we certainly couldn't have done it without air con in the car. We did get a bit lost at one point, which added extra time to the journey, but our friends helped us get organised and had a lovely meal waiting when we arrived, so that helped. The journey back was hot again and we got stuck in traffic jams about 2 hours from home but, all in all, Brian did amazingly well.

We both really enjoyed our time over there. We had to keep pinching ourselves to believe we were really there! Most days, we had a potter around one of the nearby towns and then lazed around in the sun. We had a lovely big tree on our pitch, so Brian had plenty of shade and luckily, it cooled off a bit during the week, otherwise it may have been just too uncomfortable for him. He was really was shattered when we got home and has had more pain in the last 2 days, but we're hoping that it's down to all the travelling and also the bed in the caravan not being as comfy as it could be. If it doesn't settle down again, he will have to get in touch with the hospice doctor. But, we have both come back with a lot of great memories and a real sense of amazement that we were actually able to do what we did!

Vee - thanks for your message and support. I did forget one thing while making the arrrangements. The hospice doctor reminded me we needed a letter to cover us taking morphine products out of the country so she had to email the paperwork at midnight on the Thursday night before we left on the Friday. I'd completely forgotten we needed it! I'd done it when we flew to Tenerife but hadn't thought about it for sailing to France.

Clair - hope you're enjoying your trip to Liverpool! We both love that place - think we went about 5 times last year and I was also there a few weeks ago without Brian, taking my aunt for the day who is visiting from Australia. Brian didn't actually take the steroids because the side effects may have stopped him being able to concentrate on the map reading. I can drive abroad but not map read at the same time, so we needed him to be level headed. He's actually put a bit of weight back on though - probably all the French cheese and gateaux he ate! Not sure what the difference is between MST and OxyContin, which is a long lasting, slow release morphine capsule which he takes twice a day. I will have to read back to your postings to see what you have planned for driving to Spain - but I don't envy you! That is so much further than I drove!! Mind you, you won't be towing a caravan, which does slow things down somewhat Good luck for when you go anyway.

Haven't read up on everyone else's postings while I've been away, but my thoughts have been with you all.

Love

Ellie

xx

[Ellie]

Hi everyone

Was it only Tuesday this week that I was on a high after we got back from France? How things change!

For the last few days, Brian has had a lot of pain again. He found a lump at the bottom of his spine and, as the hospice is in the middle of refurbishment and he couldn't see his doctor there, he had to revert back to using our G.P. The saw him on Wednesday and he thought it may have been due to all the travelling but said he would get Brian in for an x-ray at our local hospital that day. Unfortunately, we are still waiting for a phone call......

I just can't believe how things have changed so suddenly! One minute Brian was relatively pain free, enjoying our holiday, then the next he is getting bad pains in his shoulders, under his arms, shooting pains, tingling fingers - the works. He's had to increase his pain relief over the last few days, which is really upsetting him as he'd been so pleased that he had managed to cut it down after the radiotherapy. What's so frustrating is that it's now weekend and we will have to wait until Monday to either ring the hospice doctor, or see our own GP again to see what to do next. I suggested he get an appointment with the specialist again to find out exactly what is going on, but Brian doesn't know if he really wants anymore bad news. At this stage, I have a feeling that the pain is all coming from his liver, not from his spine. What I couldn't understand was how come most of his pain went after radiotherapy, when it was only aimed at his spine? How can that have helped with the pain from his liver? Can all this new pain be from his liver, or spine? We need to know what this lump is - if it's something caused by sitting in the car for hours, or a new tumour. Can he have radiotherapy again and would it help?

Brian is so down again now and that's the hardest bit for me. I feel I've run out of things to say for encouragement. I'm left frustrated that we have to wait until Monday. I always have hated the waiting bit! Once I know something, I can accept it and get on and deal with it.

By the way, it's 2 years ago tomorrow that he had his whipple op. What a 2 years its been. I know we're lucky that he's still here, but he really has been through so much in that time. It seems an age ago, yet the time also seems to have flown when I look back.

Love

Ellie

xx

[volmod]

Dear Ellie - I'm really sorry to hear Brian’s having problems again so soon after your return from France. How unexpected is that and how worrying for you both, left second-guessing what is behind this and waiting for the call that never comes. It’s so very hard when the weekend kicks in and suddenly you can't get anything done medically barring emergencies. Hopefully it will all pick up on Monday and things will start to become clearer ie you’ll get some real information about what is happening. I’m with you there on the ‘waiting’, I’d rather be getting on and ‘doing’! Anyway am thinking of you both and hoping you get the answer you want in the week ahead. xxVee

[Ellie]

Hi everyone

Update on Brian. The scan was clear, so it looks like it was the travelling which had caused his problems. That was a relief and although it's a shame he suffered when we got home, he said he had no regrets about going to France because we had such a good time while we were there. The extra pain he was getting was put down to his body getting used to the morphine dose, so he was given Fentanyl (?) patches this week. Hope they will work better than the oral pain relief he was on.

It's our 33rd wedding anniversay tomorrow, so we are having 4 nights away in our caravan - not going far, just somewhere an hour away that we like, but it's our way of celebrating. Just hoping for a bit of nice weather now!

Not seen many posts on here lately - how are you all getting on? Thinking of you all, especially Juliana and Nicki. Let me know how you both are, if you can.

My thoughts are with everyone, though. Keep your chins up and keep positive.

Love

Ellie

xx

[Ellie]

So much for our wedding anniversary and weekend away......

Had to get the doctor out to Brian twice in last few days. Seems he reacted badly to the Fentanyl patches - it was like he was drunk, completely out of it, slurring his words and then later he was very upset, anxious and miserable and still in a lot of pain. Our GP was wonderful. He spent 45 minutes with him yesterday at home and said some of it was side effects to the drugs, but also that maybe Brian has been bottling a lot of emotions up and is actually depressed. He is a new doctor to our practice and it was the first time I'd spoken to him, or seen him, and I couldn't believe how much time he spent just talking to us both. Brian wanted to rip the patches off yesterday, but the doctor asked that he persevere with them to see if he can get over the initial bad reaction because in the long run it will be easier to use patches, rather than take so many pills.

We both spent the a lot of the day in tears, me upset and worried about Brian, but at least I am at home with him for the next 5 days and will be going with him to see the hospice doctor next Tuesday. Between her and our GP, I'm praying that they will sort his pain out, which will in turn make him feel better mentally. I asked if the radiotherapy could be repeated but our GP didn't really give me a definite answer. Don't know if that's because he's not sure if it's medically possible or for some other reason. I will talk to the hospice doctor next week.

I know Brian has been so lucky to have had 2 years from his cancer diagnosis and whipple and I am so grateful we have shared that time together when others don't get the chance, but sometimes I feel I'm being selfish in wanting more because all Brian can see is that he's been in constant pain for the last 2 years and there's no real hope of that changing now. He did have 5 weeks of pain relief with the radiotherapy but it seems he's back to square one with it now. Sometimes, I'm terrified at what the future holds, knowing that things will get worse and not knowing how I will cope. I know I will have to, but it is heartbreaking to see him suffering and in pain and not be able to do anything to help.

Brian does seem a bit better mentally so far this morning. He woke early, had to take some Oramorph and is trying to sleep again. We are keeping a record of how much Oramorph he needs for breakthrough pain so that the patch dose can be adjusted next week. Things just seem to have got that bit harder to deal with right now......

Ellie

x

[Ellie]

Thanks Penny. Brian is a lot better tonight. We think it was probably having the remains of Oxycontin in his system and then using the patches. The doctor did say it's hard to judge the right dosage to start with. At least his pain is more controlled, which was the important bit.

It was all just a sudden shock, seeing him like that and he side effects of the patches can be anxiety and confusion, which explains why he was so upset yesterday. So glad everything has settled down now!

Love

Ellie

x

[Juliana]

Hi Ellie,

Just a quick one about the patches.

I've been on them for 3 months now, and they are great - I use:

1 x 100mg

1 x 25mg

at the same time - and swap every 3 days (usually night time).

The only thing I notice is that I may suffer nausea the day after the evening patch swap, so have to take an anti-emetic.

The anxiety and confusion hasn't really affected me, but I was told that the older the person is, the more they will experience anxiety and nightmare like dreams - but dreams only, not in every day life as such.

Also, for breakthrough pain I take 'abstral' - it's fentanyl in tablet form, it's sublingual and you melt it under the tongue - it's a little bit bitter, but it has a quick pain response - as I found oramorph did nothing for my back pain.

The nerve block has been offered to me, but I am keeping it as a last resort:

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Pancreas/Treatingpancreaticcancer/Supportivecare.aspx

(at the bottom of the page)

Take care -

Juliana x

[Ellie]

Hi Juliana

Thanks very much for the info you gave. I knew you were using them but didn't want to bother you by asking about them.

I read the details out to Brian and he said it made him feel he wasn't alone.... He's been fine again today, except has needed to take Oramorph for breakthrough pain. He's on the same patches as you - 100 & 25. We are seeing the hospice doctor tomorrow and she will look at how much Oramorph he's needed and adjust the patch strengths. I will ask about abstral to find out what the difference is between that and Oramorph. On a practical note, I suppose it's easier to carry around with you, for one thing!

Thanks again for your post. You didnt say how you are this week. Hope things are stable for you and you're feeling a bit brighter in yourself.

Thinking of you and sending my best wishes

Love

Elllie

xx

[clair2305]

Hi Ellie

been reading your posts but been really busy so this is the first chance I've had to respond.

I'm sorry Brian has been in pain. Blue was like that after our trip to Spain in the car back in May and also again when we came back from Liverpool last week. I will update my thread and you can read it there rather than stealing your thread.

Re the radiotherapy, we were told Blue could only have it once, but I think we were confused by that as our GP and Blue's consultant said that you can only have it once in the same place, so if Brian needs it elsewhere then they should be able to give it. Blue is going to be having it in the shoulder where we know there is spread from the previous bone scan.

What happened at your appointment yesterday?

Much love

Clair

[Ellie]

Hi Clair

Nice to hear from you again. Thanks for the info on radiotherapy. We'll have to see what the oncologist says but I think Brian would need another bone scan to see if anything has spread from his spine which could be causing the pain in that area.

I was going to ask how Blue is doing generally, but will wait and read your post. Hope that his next treatment eases his pain again.

Yesterday, Brian was told to use 150mg of Fentanyl patches and use Oxynorm for any breakthrough pain, along with paracetamol if needed. He's been really good today -much happier, less pain and has eaten better too. We didn't know that anti-sickness tablets would help with his appetite. It seems they help empty the stomach, which stops you feeling full, so helping to eat more. That is certainly worth knowing because I have been worried about his not wanting to eat much. We were told his liver and kidney functions were fine, so all in all things aren't too bad now.

Hope to hear that Blue is doing ok and you are looking after yourself too.

Love

Ellie

xx

[Ellie]

Hi all

As mentioned in Clair's thread, we have just spent 5 hours in A&E, where it was found that Brian had a DVT (blood clot in his thigh). He'd complained of pain in his leg for the last 10 days, which was firstly put down last week to a strain and then, this week, to a cramp (by the hospice doctor). It then swelled up last night and I was very close to ringing the district nurse, as it crossed my mind about it being a blood clot. I know that having chemo increases the risk and Brian had a pulmonary embolism (clot in the lung) not long after his op for a twisted bowel nearly 2 years ago. Cancer also increases the risk of blood clots, too.

I had an appointment with my GP this morning and mentioned that Brian's leg had been hurting for 10 days. She looked worried, asked me to bring him up to the surgery and she suspected a clot, so we were despatched down to A&E at our local hospital. Five hours and a scan later, it was confirmed the clot was in his thigh. He will now need to inject himself daily for the rest of his life with a blood thinning drug, but that is much easier than having to have warfarin, which means having a blood test and attending a warfarin clinic every week.

I can't believe Brian has taken the news so calmly though. He was told on Wednesday that he was starting to rely too much on the hospice day care and they were going to cut his attendance to once every 2 weeks. What they meant by this, I will never know, as we thought that was what the service was about - meeting up with other patients and also being able to see a pallative care doctor whilst he was there. It's ironic that the day after he's told this, he has a DVT! Anyway, we are both relieved we now know what it is and there is some reason for the pain he's had and the swelling, but it was really just a fluke that I happened to go to the doctors today and it was all sorted out. We are going away on Friday for a long weekend and I dread to think what could have happened if this had been left much longer. I just wanted other people to be aware that anyone undergoing chemo, or having cancer, will be at higher risk of blood clots, so if someone has any sudden, new and unexplained pain (particularly in the chest or leg), have it looked at!

Hope you all manage to enjoy the Bank Holiday in one way or another.

Love

Ellie

xx

[gillvb1]

Hi Ellie,

I'm so sorry that you and Brian are going through it at the moment. I know that I don't contribute to the forum any more but I very much care for those who supported me so much in my time of need (especially you!!).

You're dealing with one hurdle after another - stay strong and know that I'm thinking of you and wishing you both all the best.

Warmest hugs, with love,

Gill x

[Ellie]

Hi Penny

Brian had an MRI scan on Wednesday, so hopefully that will tell us more about why he is getting so much shoulder pain. Our GP seems to think it is being caused by the cancer in his spine, especially the top half (can't remember what the "T" numbers are for the particular bones which are most affected). He's been getting a lot of pain under both arms, coming from his back, too. His Fentanyl has been put up to 175mg a day now, yet he still gets pain in these areas. Just waiting now to hear if he can have more radiotherapy for pain relief in these areas. He also gets shooting pains in the same areas, which we think is nerve pain coming from his liver - referred pain, as you said. He has Pregabalin for that.

Dear Gill - So nice to hear from you again! Thanks for your support. Hope things are easier for you these days and you are keeping well.

Love

Ellie

xx

[volmod]

Message for Ellie from the Moderator.

Perhaps it might be helpful for you to contact the PCUK Support Service. There is access to Panceatic Cancer experts that might be able to help you and Brian at this time. The service can be reached by email as enquiries@pancreaticcancer.org.uk or by phone on 0203 177 1686.

This is a confidential service that can provide advice tailored to your needs.

Ray Hope

[gillvb1]

Hi Ellie,

How are things going for you and Brian? I know from you're posts that you're really going through it at the moment and I sincerely hope that things improve for you both.

You are such a good person and provided me with valuable advice and support all the way, I wouldn't want you to underestimate how much strength you gave me during my nightmare. I wish there was something I could do for you - please shout if there is because I would always help if I could.

Well, over a year has past for me and I am getting on with life in a positive way. I work full time, have my partner (who is far more supportive than he was when we embarked on all this), and of course, my little girl is now 7 years old, going on 12!! To be honest, the whole thing is always there at the forefront of my thoughts and it'll never go away but I know that life has to go on no matter what.

Be strong and know that I'm thinking of you and Brian.

Take care, Gill xx

[Ellie]

Thanks again, everyone, for your posts and support. Special thanks for Gill, for your kind words. Glad to hear things are going well for you!

Latest on Brian is that his scan results today have shown more tumours have appeared in his spine. He's having a further scan on Thursday, this time on his shoulders (why couldn't they have done it all in one go last week?!). I am expecting it will be bad news there, seeing the amount of pain he is in and despite all the medication he is on. At least he will get radiotherapy on any new tumours, which should hopefully reduce the pain.

I've been given 2 months off work and that has made a difference to Brian's well-being already. Just having someone around helps if you are feeling down and in pain. Hopefully, if the radiotherapy works, we will be able to have some small trips away to enjoy ourselves. At the moment, he doesn't even want to go out of the house.

How is everyone else getting on? Juliana - haven't heard from you much lately. How are you doing? Hope things are not too bad for you. Keep enjoying every minute you can with your family.

Sending my best wishes to everyone.

Love

Ellie

xx