Living with incurable cancer - incurable patients only

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.

A bit bleh!

Gragon
Posted by

Hi all,

I haven't been about much as my laptop decided to play silly beggars whilst we were on our holidays and is at the computer shop waiting to get to the front of the queue to get fixed.

I struggle to type on my phone so haven't posted but I know a bit how my computer might be feeling.

Six months ago my CT scan revealed an oedema of unknown origin in my right abdominal wall. By a weird coincidence my largest tumour (or cluster of tumours) is in my right abdominal wall.  The oncologist referred this to my GP who wrote back asking what they expected the GP to do about it.  They agreed to monitor it.  My next CT scan report was not ready until the day after I saw my oncologist so I did not know how big it was or if it had grown.  What I did know was that my right hand side was getting more uncomfortable and I was getting occasional pains.

I started using the co-codamol prescribed for my arthritis to help me get to sleep and when it wore off and I woke in the middle of the night I would take some more and get a few more hours sleep.

My GP prescribed water tablets to try and move the fluid but this quickly dropped my blood pressure and I started to have dizzy spells.  I went back a few days later and he adjusted my other medication and it has improved although my BP is still down.

The pain has been getting more persistent and I have been tired and not able to get on with anything, completing the circle leading to me feeling very down.

I saw the oncologist on Thursday and it must have been apparent that I was struggling as he has ordered an early CT scan to see what is going on and prescribed me the higher strength co-codamol.  I know that this is nothing compared to those of you glugging oramorph but other than my treatment it is the first time i have been prescribed anything for the cancer rather than the side effects of the medication.

I'm not so worried about what they might find as I just hope to get to find out what is going on and get a plan.  I figure it is either the oedema or the cancer.  If it is the oedema they can drain it, if it is the cancer there are other treatments although I would obviously be sorry if this one had stopped working.

I took the first of the higher strength painkillers today and haven't noticed much difference yet but I will see how it goes.

I'm waiting for my CT date now which they hope will be within two weeks.

On the plus side I have been to the dentist and hopefully my missing tooth will be replaced by another crown but this one on a post into the root that remains from my broken tooth , in the first couple of weeks of November so I should be able to smile properly by the time of the meet up in York.  I hope to see lots of you there,

All the best Gragon xx

daloni
Posted by

Hi

Welcome back! I’ve missed you. I’m sorry you’re feeling down. I identify with a lot of what you’ve written having struggled with oedema and pain myself over the last few months. It sometimes takes me a while to own up to myself what’s going on as each new hideousness potentially marks another milestone along the road. Like you, getting pain killers prescribed earlier this year was a first for me. It was a heck of a shock when the GP went straight for opioids and told be not to worry about addiction even though I hadn’t asked.. “Ah,” I thought to myself. “So that’s where we are.”

I hope you can get on top of the pain. I’m finding the Butec patches good for overall control topped up with Oxycodone as necessary which is often at night. If you’re still in pain on your meds then kick up a fuss. I hope you can get on top of the oedema. I find it uncomfortable, unsightly and depressing. 

I must go to sleep now. Looking forward to seeing your shiny bright smile 

xxx

anndanv
Posted by

Hi Gragon, Nice to have you back! How was your holiday? I read about you using your phone on another post and was about to reply to that when I found this one. Don't worry about spelling mistakes if you have to use your phone for a bit. Don't give yourself the hassle of going back and correcting them, we will work it out!

I'm sorry to hear you have been having problems, I hope they didn't affect your holiday! I've had to come off all the anti inflammatory drugs for my arthritis I've been on for quite some time as they are affecting the cirrhosis in my liver caused by the cancer drug. You really don't realise how well they work until you can't take them! I hope you get the pain sorted out ASAP and as Daloni said, shout if it isn't under control!

Wow! The dentist! Good for you just going, I am terrified of dentists, stemming back to a dentist when I was young! If I tell you he was eventually struck off, enough said! I do hope you get your smile back soon! Good luck with the CT scan. It's good they seem to be on top of things!

Love Annette x

tvman
Posted by

Hi Gragon

Glad you're back in the fold, I was just thinking about you the other day and was wondering if you were ok, I don't like not hearing from someone, concerns me. 

I use my phone for all my posts and when I say that because of the trapped nerves resulting from my spinal stenosis, my fingers and hands  jerk uncontrollably, causing all sorts of issues when typing, meaning that I frequently have to resolve spelling errors and on my other communication sites I sometimes send messages before they're finished. It causes worse problems holding cups of tea or coffee, I chuck some liquid around so I need to hold a cup firmly with two hands!

As I said,Gragon, good to know you're still around my friend.

Tvman

My philosophy is simple, love life and family.
daloni
Posted by

Hi

have either of you tried dictating your messages? It works pretty well 

xx

Maybug
Posted by

I’d forgotten about dictation. It works well but I find I have to go through and check for errors. If you’re sending a long message it’s definitely time saving, although I think more clearly writing rather than talking. (No dictation here btw)

tvman
Posted by

Hi Daloni

No, I haven't even thought of that, I didn't know you could. What do you do? Dictate into Word? And then punctuation? Do you have to say, question mark, comma, full stop, new paragraph?  

Unfortunately, my experience, and I have to admit, limited, is that the program struggles with my Northern Ireland accent. For example, the word shower, English pronunciation consists of two syllables whereas here we pronounce it with just one syllable, shar, with a definite pronunciation of the r.  That's only one, there are many. 

I'll have to repay you for that with some veg tips. I'll be planting my garlic, shallots and, overwintering onions next week, the sets arrived yesterday morning, I'm looking forward to it, I know it will help my mood. 

What's your agenda for this week coming? Do you have a slightly less hectic schedule? I hope so.

Take care Daloni

Tvman xx

My philosophy is simple, love life and family.
Gragon
Posted by

So, the appointment for my CT scan ( that they wanted with two weeks) arrived.  December 2nd....!

Well that's helpful!

The research nurses are following this up for me but I'm not hopeful.

On the good side I got my laptop back so at least I  can vent my spleen using a proper keyboard.  Although just to be stubborn I'm doing this via my mobile.

All the best,

Gragon xx 

daloni
Posted by

Hi

I am sorry I didn’t reply to you. I somehow missed this. My mind is very busy and a bit overwhelmed tbh. Not just with all the appointments and hospital stuff but with puppy stuff and daughter stuff. My little one is only 15 and she’s home alone with me now that my big girl is off to uni. It’s really hard on her in so many ways, not least of which is watching me get progressively sicker by the week and feeling totally powerless and unheard by the people around us. She’s the dearest, sweetest thing who doesn’t like to make a fuss or make anyone feel uncomfortable or unhappy. The result is she puts everyone else first and gets overlooked.

She had a meltdown the other night, crying and saying she hates that I have to be in hospital so much. I tried to listen rather than fix it. I asked her last night who she’s talking to and she admitted it’s no one. I said it was important that she talk to someone as people can’t support her if they don’t know she’s struggling.

I think I need to ask a family member or two to check in with her regularly. Everyone is very absorbed by my niece’s wedding which takes place this weekend and I haven’t yet told my family about the latest scan results and how bleak they look. The reality is that I’ve moved to the next phase but I don’t think my family has clocked it properly. 

Where did that come from? It’s not what I expected to write. I was going to talk about dictation! My iPhone has a microphone button that allows me to dictate to text directly into this message. Yes, I need to dictate the punctuation and proofread. As for accents, some digital dictation software (eg Dragon) is able to learn your accent. It can take a bit of time but once it’s done, it’s great. Does that help? 

My schedule for the coming week starts with the wedding. We head to Shropshire tomorrow (today? Friday) for the big event. Family dinner on Friday evening. Wedding on Saturday. Home on Sunday. 

My kidney operation was due on Monday but has been postponed for two weeks (I’ll post elsewhere on that). So a day off! Tuesday and Wednesday I am up at the trials unit in central London for blood tests then treatment. That will mark the halfway point in this immunotherapy trial. Then two more days of half term by which time the puppy will be allowed out into the world, fully vaccinated. So I reckon a couple of nice trips to National Trust gardens will be in order and maybe a trip to the cinema.

Happy gardening. My tulip bulbs are in.

xxx

daloni
Posted by

Hi

Sorry about your long wait for a scan. It’s so frustrating, as I think many of us will know only too well. But hurray for getting the laptop back. I’m looking forward to hearing more from you. 

xx

Maybug
Posted by

I know distraction isn’t really possible, but if you’re planning a trip to the cinema, Daloni, I can recommend Official Secrets which I saw yesterday. 

Gragon
Posted by

?  Are we allowed to speak about Official secrets on here?  

Gragon xx 

tvman
Posted by

Hi Daloni

I completely understand, I'd recommend you for Mum of the year if you were my mum. I know someone who that happened to here in Northern Ireland. She has 6 children, all girls, 4 of whom have Lupus. She's a nurse who worked mostly nights, so quite often she stayed on in the hospital because one of the girls had been admitted overnight. I knew 5 of the girls very well, I worked in the area so I met them quite often. Tbh I thought there were 5 for years, I didn't know that there were two identical twins lol. 

Well, because the girls were very close to their mum and were proud of her dedication to them, they entered her for Mum of the Year and she won! Good for her.

I don't use an iPhone, I'm Android, but my son works in web design. Luckily he's still at home so I can tap into his knowledge

I look forward to letting you know that I've found a program that can deal with the best accent in the UK. There's wishful thinking!

Speak soon, Daloni.

Tvman xx

My philosophy is simple, love life and family.
anndanv
Posted by

Hi Tvman, if you were allowed to vote for someone who wasn't your mum, I would also vote for Daloni! I think she's an amazing mother and I'm sure both her daughters will take after her and be strong women when they are older! Enjoy the wedding Daloni!

gragon, I wish there was a "dislike" button because I don't like the fact you have to wait until December for your scan, that is just ridiculous but we've all been there! No one seems to realise, except those here, just how precious OUR time is and if we need something done, we'd like it done yesterday!! Hope it's a good result and will be worth waiting on!

I've just spent the last hour and a bit, trying to write on this site and I believe I have a lot of patience but tonight........aaarrrggghhh! Humbug!!!!!   Sorry folks, just had to get that out! I will contact admin on Monday....maybe!

I need the posts to just post, not a dictaphone!!!

Love Annette x

daloni
Posted by

Aw gee shucks, Annette and tvman. You’re too kind - but thank you. 
xx