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Submission: On March 02 via manual from ZA
Submission: On March 02 via manual from ZA
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<h4 class="post-name">Head in the sand about new symptoms</h4>
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<div class="author "> Posted by <a class="view-user-profile" href="/members/lady-pepys">Lady Pepys</a>
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<div class="date">
<a href="/cancer_experiences/living_with_incurable_cancer/f/33617/p/151152/1153220#1153220">
1 Mar 2018 9:26 AM</a>
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<div class="content">
<p>Good morning Hope, </p>
<p>
</p>
<p> Yes, I’ll take your advice! Just looked outside and the ground looks slippy, I dislike that even more than the cold. </p>
<p>
<br>
</p>
<p> It’s great to get away, isnt it? Spoke to my brother last night about our Paris trip. As they are in Copenhagen we’ll meet up there. Quite fancy going on Eurostar myself. As for Madeira, I have never been there but I’m
going to research. I’ve always had itchy feet! Meanwhile all I have planned this month is a trip to Brighton with same brother and wife and seeing Peter Hamill (admit I don’t really know him). Still, good to be busy. And
I’m too knackered for long trips right now. And anyway I’ve always been good at ‘travel in the head’ via my beloved books. A book, the woodburner and a nice glass of wine and I’m in heaven. Maybe a decent serial killer
documentary! </p>
<p>
<br>
</p>
<p> Middle son arrives Saturday afternoon (in mask) so there’ll be fun and frolics. </p>
<p>
<br>
</p>
<p> I hope you are in cheery mood, Hope. </p>
<p>
<br>
</p>
<p> Pepys xx </p>
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<div class="author "> Posted by <a class="view-user-profile" href="/members/aultone">Aultone</a>
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<div class="date">
<a href="/cancer_experiences/living_with_incurable_cancer/f/33617/p/151152/1153318#1153318">
1 Mar 2018 11:56 AM</a>
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</div>
<div class="content">
<p>It is a breath of fresh air to hear someone being totally honest about how they feel.</p>
<p>Most of us have been there in one way or another.</p>
<p>I consider myself very fortunate as for the first time in months I have NO PAIN WHATSOEVER thanks to a new Morphine table (30gm) that my GP put me on two days ago.</p>
<p>Just stay positive, that's the important bit.</p>
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<div class="author "> Posted by <a class="view-user-profile" href="/members/hope58">hope58</a>
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<a href="/cancer_experiences/living_with_incurable_cancer/f/33617/p/151152/1153421#1153421">
1 Mar 2018 2:55 PM</a>
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<p>Hi Aultone </p>
<p> My cancer doesn't give me pain, my big problem is my back, 2 discs out, osteoporosis and osteoarthritis of the spine and general degeneration of the spine. And I have ulnar nerve trapped in both elbows. I'm in constant
low level pain re the elbows and waken up 3 or 4 times a night with severe pain caused by my back, legs, elbows etc. What's the morphine you're taking? I'm on MST 120 mg twice a day and also Sevredol and i can't
remember the dose. My doctor won't give me any more because I'm sort of at max dose for driving. Any more and I'll be on a different planet! One doctor told me that nerve pain is hard to suppress. </p>
<p> Take care </p>
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<p>MST 120mg twice a day seems a very high dosage and it is way above what I am taking.</p>
<p>I take 30mg every 12 hours and it is working wonders for me.</p>
<p>The actual title is "MST Continuous 30mg Prolonged Release Tablets, Morphine Sulfate". (Strange spelling I know but that is what is on the box).</p>
<p>Maybe I am lucky that so much pain has been controlled by this drug.</p>
<p>My daughter in law has a similar situation as you as she also is on high doses that do not do the job for her.</p>
<p>Regards</p>
<p>Viv</p>
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<p>Hi Hope58 </p>
<p>
</p>
<p> I hope you don't mind me replying to your post. I'm sort of new to this group but not new to this cancer lark! </p>
<p> Just read that you are off to Madeira at the end of the month. We stopped there in December whilst on a cruise and it is fabulous. Very hilly and I struggled as my stamina isn't up to much. If you get a chance you
should do the cable car ride and the toboggan down. It was a bit scary, but once at the bottom I wanted to do it again. </p>
<p> I'm off to the caribbean in 5 weeks, but struggling to get excited - been a bit low since my last appointment. </p>
<p>
<br>
</p>
<p> Have a fab time </p>
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2 Mar 2018 1:20 AM</a>
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<p>Good morning Milady, </p>
<p> It's much too cold and slippery here too. I've only 1 day's morphine left so I'm going to have to go later to the pharmacy. I had to google Peter Hamill and I vaguely remember him from the seventies I think! </p>
<p> I love Paris. I've only been on the Eurostar once before and that was not long after I had to stop working. We stayed not far from the train station (Gare du Nord) because my back was pretty bad and we were able to
walk to the hotel. Good 4 star hotel but I've stayed in better areas of Paris! Eurostar was one of the first to be ticked off. I had to go into the wheelchair shortly after that Where will you stay? George V? I think the
only long haul I may do is Australia. Too far to be ill but! </p>
<p> I'm looking forward to seeing Madeira. The gardens and scenery are the main attractions for me. Then of course there's the food. I love to immerse myself in a foreign country, which reminds me I'll have to learn some
Portuguese before I go. </p>
<p> Hope you have a great time with your son and enjoy the partying! My youngest son arrives back from Singapore on Monday. He's flying into Dublin so I hope the weather has improved by then and the roads are clear.
</p>
<p> It's after 1 now, time to sleep! </p>
<p> Take care and stay healthy Milady xx </p>
<p>
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<p>Hi Viv </p>
<p>Yep, same stuff, strange spelling indeed. I think if you check, another strange spelling is CONTINUS and not continuous. Eyes play tricks with your brain sometimes lol. I have been on 120 mg twice a day for about 6 mths
now as well as the Sevredol which is for breakthrough pain. It's also Morphine, it gets locked away in the pharmacy safe when it arrives with the MST because they're both controlled drugs. I've said to the haematologist
that they don't make me feel high or anything but she tells me that it goes for the pain instead . Some stuff! Before I was given the Sevredol, I would have been lying sleeping then suddenly attacked by
pain. Hardly ever happens now, but when it does, I'm in real pain for a minute or so. </p>
<p>Take care Viv </p>
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2 Mar 2018 2:33 AM</a>
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<p>Hi Alijo </p>
<p>Of course I don't mind Alijo, nice to meet you save the circumstances. What's your cancer? I've a type of incurable (yet, as I like to say) bone marrow cancer. </p>
<p>Ah, Madeira is hilly, that's going to be fun, I'm a wheelchair user! Just a challenge, another of life's little challenges to attack! Teeth gritted, off I go.</p>
<p>The cable car sounds good as does the toboggan. However, with a back so painful that I can't do more than a few steps, my wife isn't going to let me anywhere near a toboggan! I'd absolutely love to do it, I suppose the
organisers wouldn't be too cooperative either though. The skeleton appeals to me also. I think! </p>
<p>I'd like to go to the Caribbean too, but the insurance is high. I'm also liable to feel ill and that's horrible when you're so far from your own bed. </p>
<p>Enjoy the Caribbean and don't forget to let me know how you did. </p>
<p>Take care Alijo </p>
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* Home * How can we help you today? * Online Community * Login My Macmillan Create Account Saved pages * Menu * Information and support * Get involved * In your area * About us Search Donate * Menu * Search * My * Information and support * Get involved * In your area * About us * Online community * Home Donate Search My Macmillan * Login * Join now My saved pages ONLINE COMMUNITY * * Groups * Blogs * Ask An Expert * News * Help * More * Ask An Expert * News * Help * Login * Join Discussion tools * Subscribe via RSS Who can use this group? For people living with incurable cancer only This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves. If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group. LIVING WITH INCURABLE CANCER - PATIENTS ONLY Join this group Start a discussion This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here. * Latest Activity * Discussions * Members HEAD IN THE SAND ABOUT NEW SYMPTOMS Posted by Lady Pepys 1 Mar 2018 9:26 AM Good morning Hope, Yes, I’ll take your advice! Just looked outside and the ground looks slippy, I dislike that even more than the cold. It’s great to get away, isnt it? Spoke to my brother last night about our Paris trip. As they are in Copenhagen we’ll meet up there. Quite fancy going on Eurostar myself. As for Madeira, I have never been there but I’m going to research. I’ve always had itchy feet! Meanwhile all I have planned this month is a trip to Brighton with same brother and wife and seeing Peter Hamill (admit I don’t really know him). Still, good to be busy. And I’m too knackered for long trips right now. And anyway I’ve always been good at ‘travel in the head’ via my beloved books. A book, the woodburner and a nice glass of wine and I’m in heaven. Maybe a decent serial killer documentary! Middle son arrives Saturday afternoon (in mask) so there’ll be fun and frolics. I hope you are in cheery mood, Hope. Pepys xx Reply smcara and 1 other like this Posted by Aultone 1 Mar 2018 11:56 AM It is a breath of fresh air to hear someone being totally honest about how they feel. Most of us have been there in one way or another. I consider myself very fortunate as for the first time in months I have NO PAIN WHATSOEVER thanks to a new Morphine table (30gm) that my GP put me on two days ago. Just stay positive, that's the important bit. Reply Lady Pepys and 1 other like this Posted by hope58 1 Mar 2018 2:55 PM Hi Aultone My cancer doesn't give me pain, my big problem is my back, 2 discs out, osteoporosis and osteoarthritis of the spine and general degeneration of the spine. And I have ulnar nerve trapped in both elbows. I'm in constant low level pain re the elbows and waken up 3 or 4 times a night with severe pain caused by my back, legs, elbows etc. What's the morphine you're taking? I'm on MST 120 mg twice a day and also Sevredol and i can't remember the dose. My doctor won't give me any more because I'm sort of at max dose for driving. Any more and I'll be on a different planet! One doctor told me that nerve pain is hard to suppress. Take care Reply Posted by Aultone 1 Mar 2018 4:46 PM MST 120mg twice a day seems a very high dosage and it is way above what I am taking. I take 30mg every 12 hours and it is working wonders for me. The actual title is "MST Continuous 30mg Prolonged Release Tablets, Morphine Sulfate". (Strange spelling I know but that is what is on the box). Maybe I am lucky that so much pain has been controlled by this drug. My daughter in law has a similar situation as you as she also is on high doses that do not do the job for her. Regards Viv Reply hope58 likes this Posted by Alijo62 1 Mar 2018 11:23 PM Hi Hope58 I hope you don't mind me replying to your post. I'm sort of new to this group but not new to this cancer lark! Just read that you are off to Madeira at the end of the month. We stopped there in December whilst on a cruise and it is fabulous. Very hilly and I struggled as my stamina isn't up to much. If you get a chance you should do the cable car ride and the toboggan down. It was a bit scary, but once at the bottom I wanted to do it again. I'm off to the caribbean in 5 weeks, but struggling to get excited - been a bit low since my last appointment. Have a fab time Reply hope58 likes this Posted by hope58 2 Mar 2018 1:20 AM Good morning Milady, It's much too cold and slippery here too. I've only 1 day's morphine left so I'm going to have to go later to the pharmacy. I had to google Peter Hamill and I vaguely remember him from the seventies I think! I love Paris. I've only been on the Eurostar once before and that was not long after I had to stop working. We stayed not far from the train station (Gare du Nord) because my back was pretty bad and we were able to walk to the hotel. Good 4 star hotel but I've stayed in better areas of Paris! Eurostar was one of the first to be ticked off. I had to go into the wheelchair shortly after that Where will you stay? George V? I think the only long haul I may do is Australia. Too far to be ill but! I'm looking forward to seeing Madeira. The gardens and scenery are the main attractions for me. Then of course there's the food. I love to immerse myself in a foreign country, which reminds me I'll have to learn some Portuguese before I go. Hope you have a great time with your son and enjoy the partying! My youngest son arrives back from Singapore on Monday. He's flying into Dublin so I hope the weather has improved by then and the roads are clear. It's after 1 now, time to sleep! Take care and stay healthy Milady xx Reply Posted by hope58 2 Mar 2018 1:47 AM Hi Viv Yep, same stuff, strange spelling indeed. I think if you check, another strange spelling is CONTINUS and not continuous. Eyes play tricks with your brain sometimes lol. I have been on 120 mg twice a day for about 6 mths now as well as the Sevredol which is for breakthrough pain. It's also Morphine, it gets locked away in the pharmacy safe when it arrives with the MST because they're both controlled drugs. I've said to the haematologist that they don't make me feel high or anything but she tells me that it goes for the pain instead . Some stuff! Before I was given the Sevredol, I would have been lying sleeping then suddenly attacked by pain. Hardly ever happens now, but when it does, I'm in real pain for a minute or so. Take care Viv Reply Posted by hope58 2 Mar 2018 2:33 AM Hi Alijo Of course I don't mind Alijo, nice to meet you save the circumstances. What's your cancer? I've a type of incurable (yet, as I like to say) bone marrow cancer. Ah, Madeira is hilly, that's going to be fun, I'm a wheelchair user! Just a challenge, another of life's little challenges to attack! Teeth gritted, off I go. The cable car sounds good as does the toboggan. However, with a back so painful that I can't do more than a few steps, my wife isn't going to let me anywhere near a toboggan! I'd absolutely love to do it, I suppose the organisers wouldn't be too cooperative either though. The skeleton appeals to me also. I think! I'd like to go to the Caribbean too, but the insurance is high. I'm also liable to feel ill and that's horrible when you're so far from your own bed. Enjoy the Caribbean and don't forget to let me know how you did. Take care Alijo Reply < Page 3 of 3 > Need to talk? Call us free 0808 808 00 00 Monday to Friday, 9am-8pm * Home * Information and support * Get involved * In your area * About us * Online community * Donate FOLLOW US * * * * ABOUT THIS SITE * About our website * How we use cookies * Terms and conditions * Privacy policy * Accessibility * Make a donation MACMILLAN SITES * be.Macmillan * Community * Macmillan shop * Learn zone * Careers GET IN TOUCH If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help. Contact Us FOLLOW US * * * * © Macmillan Cancer Support 2015 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). 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