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.

The cat was the final straw.

daloni
Posted by

Hi

you literally couldn’t make it up. Which is tragic as there’s nothing funny about this. I think you’re right about surgeons. If they can’t whip it out they are not interested. 

I think it might be worth contacting your GP as someone needs to take an overview. By rights, that should be the gp. 

I am so sorry you’re going through such a rough time and apparently with no end in sight (although of course it might spontaneously clear up in a month....) 

xx

fighting girl
Posted by

Hi lass 

so sorry to read all this cr p you are dealing with,don t know quite where to suggest u start but perhaps a gp ,for at least a double appointment to get an overview and a plan 

i feel so sorry for you ,

every time you see a dr make a note of their name so u can complain about them by name if you need to 

can anyone go to apptmts with you as you are so exhausted you can t deal with this 

roughly where are u in the country ? Could you change hospitals ?

hugs and more hugs 

xxxx

fighting girl
Posted by

Hi lass 

so sorry to read all this cr p you are dealing with,don t know quite where to suggest u start but perhaps a gp ,for at least a double appointment to get an overview and a plan 

i feel so sorry for you ,

every time you see a dr make a note of their name so u can complain about them by name if you need to 

can anyone go to apptmts with you as you are so exhausted you can t deal with this 

roughly where are u in the country ? Could you change hospitals ?

hugs and more hugs 

xxxx

anndanv
Posted by

THAT WAS MEANT TO SAY 3 shots not 30!! I would have looked like a pin cushion!!

Love Annette x

anndanv
Posted by

Oh Lass, I'm so sorry about what's happening to you! It just beggars belief, like so many stories here we know are true!  I'm wondering if you use an iPad, Laptop or a computer? If it's not an iPad, you could copy and paste your posts onto a Word document (and that would save you writing it all again) then edit it into a letter to your GP, and send a copy to the hospital you were treated at and your local MP! Or PALs, if you prefer! If it was me, I'd start the letter of by saying "Dear Dr ???, As my GP am I correct in thinking that you are responsible for my health and wellbeing? I hope so because I need someone who knows what's going on, to explain it to me and help me get better care"!      I can't understand how this doctor can contradict his own diagnosis by one minute saying your gallbladder is bigger than it should be, then saying both sides are equal and there is no swelling! If your symptoms are the same as for gallstones and they did an Ultrasound or CT, the stones would show up. If they do not show up, I can't see the point of having your gallbladder removed! Seriously, do you? As for him saying you can't be allergic to the dye they use, that's nonsense too! I had an allergic reaction to this once, when I had a CT and an MRI one after the other and both departments gave me the injection! The next time I had them on separate days and it was fine!  Oh I know what you mean about so called friend's disappearing as that happened to me too, it's quite common!

Please, I know you are unwell and in pain but you have to inform your GP of what's been happening and ask for a second opinion. He will also have the results of your scans and can tell you what the actual report says. In the meantime, I wouldn't take anything the doctor you saw prescribed as he hasn't given you a proper diagnoses! Take care and you know we are all here for you! I will send a PM!  Has the pain settled at all? Please at least see your GP tomorrow so you have a better weekend!

Love Annette x

Lynn2
Posted by

Lass you cant live with constant pain and you shouldnt have to, please make an app to see your GP, tell him what has been happening and what the on call idiot said, tell him you are at the end of your tether because thats how constant pain makes you feel and see if he can give you something to ease it. If we kept our pets in constant pain like this we would be prosecuted for cruelty !!! No one should be treated in this way. Have you got a hospice near you that you could be refered to for pain management/? they came out and helped me with doses of oxycodone and how many times i could take it ect and also what else i could take, they were really good. My pain hasnt gone away but i can cope on the regime of pain relief she sorted for me. Hope you get help soon. Lynn 2 xxx

Lynn 2. xx

flowerlady
Posted by

Oh Lass, I am so angry on your behalf. This is not acceptable at all. The idea of calling Macmillan is a good one, they are usually helpful and a good starting point. Perhaps a more natural approach to your bowels might help like the rhubarb etc. I can't think of anything else to help. Xxxx

Claire xx

Flowerlady x
kirky68
Posted by

Oh Lass.

I can't help even though I really want to do something for you! 

Agree with the others that your GP has responsibility for your overall care so you should tell her/him wtf has gone on. I avoid emergency hospital treatment like the chuffing plague. As soon as they get a complicated medical presentation they are useless.

Can you bear to knock any opioids on the head? They ruined my digestive system so whenever it gets bad I switch to paracetamol and ibuprofen every 4 hours to try and get some relief from my bowels. (Teaching granny to suck eggs but others might find it useful).

Big hugs xx

Lass
Posted by

OK, so.... 

Daloni, 

Lol. We should set up a countdown clock with a month on it. Title it something like "When Lass' abdomen will be sorted". It needs to be snappier, but I don't have the mental capacity to be creative just now!

Fighting Girl, 

Nope, there's noone here with me.... Except my cats, and I don't think they'd be much use in a Dr appointment. Lol. I'm in Leeds, all of the hospitals here come under one umbrella of Leeds Teaching Hospitals, and each has different specialities at it. So even if I went to the A+E at the LGI, they'd just send me back to St James as that's where Gastro are based.

Annette, 

They found gallstones incidentally last year when they were checking my liver. I've never had any problems with them, and most people have them. I had an ultrasound of my gallbladder on Wednesday, and the tech said she could see nothing wrong with it other than it might be a little swollen. But the stones are all moving freely, and she said the slight swelling in it, in no way accounts for the swelling or pains I'm getting - because they are in two very different places in my body. The only thing they have in common is that they are on the right of my abdomen. She also pushed and poked my gall bladder and asked if it hurt at all, and it didn't.

Pain is still the same, and only got 3 hours of sleep last night because I couldn't get comfy due to the swelling. 

Lynn, 

There's a hospice not too far away, St Gemma's. But I won't be going there again after a "Professor", who is a specialist in pain management, read a report wrong and announced to me and my Macmillan equivalent nurse that I didn't have cancer, I had cancer, and the reason I was in so much pain is because of how fat I am. So his advice was to stop all pain medication, and get out exercising ASAP because there was nothing wrong with me.

I gave him what for through tears of fuming anger, told him to re-read whatever files on me he had, then walked out to cool down. The nurse was not happy with him at all and apparently went over everything that was going on with me, then came to find me to check I was OK. Then we went back in together where he apologised.

Claire, 

Apparently there's nothing wrong with my bowels according to their scans and Xrays. But they want me to take IBS meds to help with the pain that's apparently coming from my gall bladder..... 

Kirky, 

I'm actually used to my daily level of cancer pains, so I don't generally take anything for that. I've just retrained my brain to think of that level of pain as a 0, then go from there. So when things are worse than the normal level, I take Ibuprofen and paracetemol. That usually takes enough of the edge off it that I can cope. So that'll be housework, gardening, a small trip out of the house for something. Wet weather makes things worse, as does day trips out, or anything more physical than just say, a walk around a supermarket. That's when the cocodamol and Ibuprofen happen. But it's usually only one cocodamol to let things relax back down to a level I can cope with. 

I really hate taking opioids, so I only take them when I've exhausted every other option. So the fact I've had to take them a few times for this abdominal pain should tell the Dr's something!

So far today I've called the pharmacy about the Buscopan. They say that the Dr will have known about my medical conditions and will have decided that the benefits outweigh the risks, so prescribed it to me. I really don't believe that tbh, so I don't think I'll be taking it. For a start, the Dr didn't think there was anything wrong with my bowel, he thought it was my gall bladder, so why is he prescribing me antispasmodics for my bowel?

I've also called PALS to ask them if there's any way I can find out if a mistake was made during my colonoscopy. Someone will call me back in 2 working days to hopefully arrange a meeting to talk through everything that happened. Certainly one way to see my consultant again since the letter I saw on the system doesn't have anything in it about a followup appointment! 

Once my head is working a bit better, knackered and numb at the min, I'm going to get the laptop out and compose an email to my GP and I'll CC in PALS as well. I'll try and put down the entire timeline from start to finish, as best I remember it, as well as all the stupid and contradictory things the Dr's have said to me. No idea if it'll do anything, but I'll end it explaining that I called PALS to see if a mistake was made, then ask what else can be done at the moment.

I have reduced mobility as it is. With this abdominal pain, I sometimes actually have to hold a piece of my abdomen and press it while walking to ease the pain. I can't sit on a normal chair with my feet flat on the floor, because the swelling presses against things and makes it uncomfortable and/or sore. It's just ridiculous!

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

anndanv
Posted by

Hi Lass, I'm relieved you've called PALS and are going to email your GP! I hope you get some positive feedback from this, so you can move forward knowing just what your actual diagnosis is. In the meantime, I'd stay away from the emergency services if at all possible! I hope things settle a bit, so you can enjoy the weekend!

Love Annette x

Lass
Posted by

GP and PALS emailed......

Dear Sir/Madam

Having spoken to PALS, I am writing to you to document the recent events and conversations that have taken place since my colonoscopy on June 19th 2019. I want to try to explain why I'm unhappy with the care I've received up to this point.

On the date mentioned above I attended St James Hospital for an investigative colonoscopy with biopsy. The staff were all very reassuring, and I had the colonoscopy without sedation or gas and air. Part of the way through the procedure, as a student started removing the polyps that were found, the atmosphere changed and she was removed from the scope and the supervisor took over. Voices were hushed, everyone stopped engaging with me, and multiple bags of 'stuff' were retrieved, opened, and used. I left the hospital, and went home grateful that it was all over and thinking all was well. When I read the report I was given, it stated that one polyp was particularly large and had necessitated the use of clips as did one other.

About 3 hours later I started with a severe pain in my lower right abdomen. I put it down to trapped wind from the colonoscopy. The next day, my stomach felt swollen, and looking in the mirror I could see that it was. Two days later the pain still hadn't gone so I called one of the numbers on the leaflets provided. They advised I see my GP, so I made an appointment to be seen that day. The doctor examined me and gave me some antibiotics saying it might be an infection but it should clear in a few days - he wasn't worried about it.

The pain and the swelling remained however, and after a miserable and painful few days, I called another number on the information pack I'd been given – this was now June 26th, a week after the colonoscopy. I spoke to Dr Noor Mohammed, and he contacted the registrar and had her call me back. Dr Pana asked a few questions, and then told me to come in to the Surgical Assessment Unit so she could examine me. After bloods and x-rays were taken I was told there was no bowel perforation, the bowel looked as it should, and bloods all seemed fine. So she diagnosed post-polypectomy syndrome and told me to rest for a few days, take regular pain killers, and ice the area. She also told me to get back in touch in a few days to let her know how things were doing and gave me different antibiotics.

On Friday 28th, I texted to say there was no change and was told to leave it another 7 – 10 days and it should have calmed down by then. I struggled on for 10 more days in extreme pain and was unable to sleep due to the pain and the swelling. By this time another pain had developed in the centre of my abdomen. On July 8th, 19 days after the colonoscopy, I texted again asking if there was anything else to be done. She advised me to go back to the SAU to see her colleague Jennifer, which I did.

Once again I was x-rayed and given blood tests. Again the bloods came back clear, but apparently there were some impacted faeces on the right hand side. I was asked to stay in overnight to take laxatives to try and shift it, and to see what the more senior doctors in the morning could suggest. After 2 sachets of Movicol nothing moved, not even my normal bowel movement. The more senior doctors came round early afternoon and dismissed me saying I was to take laxatives and senna to solve the problem.

I took 8 sachets of Macrogol a day, and spent an entire week running up and down my stairs to the toilet. This was incredibly difficult as I have cancerous mets in my spine and the pain in my abdomen did not lessen. Unfortunately I don't think my daily medications were being absorbed properly, neither were the nutrients from my meals. I was feeling more and more unwell. Finally on Monday 15th of July, I called for an appointment with my GP to see if there were other laxatives I could take or any other treatment I could have as the pain and swelling were unchanged. My GP examined me and suggested trying Buscopan but it's a drug for IBS spasms, and I was told I didn't have IBS. He wrote a letter and sent me up to A+E once more.

I arrived there around 3:30, and was told they would arrange for an ECG to be done first as my heart rate was up at 146. My accelerated heart rate is documented in my notes and I take medication for it. This was not a new symptom. After 6 I saw a doctor who said he'd go and speak to Jennifer then come back with her comments and that he would also arrange for some pain relief for me - neither happened. At around 7:30 I was given an ECG. After 9pm I saw another surgical doctor who advised I needed X-rays done to check the faeces in my bowel. She said she'd arrange transport due to my high heart rate - now at 176 - and level of pain. At around 9:30, I saw 2 more surgical doctors who asked the same questions as the first one, only they decided the pain was from gall stones as they saw them noted in my file, and wanted to send me for an ultrasound. I was in extreme pain and discomfort but explained what the first doctor said, so they agreed I could have the X-Ray first to see what it showed.

At 10pm I asked a nurse about my transport to X-ray, but it had been written up that I was to walk down myself. A porter was quickly arranged and I was back in SAU just after 11pm. About 12:30am I was advised that the X-rays showed no impaction in my bowel, so it was concluded that it must be my gall bladder. An ultrasound would be arranged for the next day. I went home in great distress from days with no sleep, extreme pain from my bowel and spine, and extreme hunger from lack of food.

At the ultrasound I discovered that the technician could see the gall stones noted last year, but that they were free moving and there was no tenderness in that area.

Back in the SAU the doctor talked about the pain, and appeared totally unaware that I had any swelling. He then stated that he didn't think they would find a cause for the pain, and asked if I had enough pain killers to take. He would send me for a CT sometime in the next two weeks just to double check. I broke down in tears and said I couldn't live with this for another 2 weeks. He said he'd try for a faster turnaround but that was usually reserved for inpatients. I was then sent home to wait and see what happened.

Thankfully, the next day I was called for a CT scan, but when I saw the doctor after this he left me really upset for the following reasons

  • He said my gall bladder was oversized but he couldn't explain why he knew that, as he mentioned that every person is different.

  • He told me there was no swelling as both sides of the scan were symmetrical. I can physically show him the swelling, and I can feel it.

  • I asked him if this might be an allergic reaction I was having to the dye used in the polypectomy. He said it couldn't be as the dye is carbon based just as we are – but people are allergic to peanuts (a carbon based item too)

  • He told me they couldn't find anything wrong, so it would just clear up on its own within a month. When asked how he knew it would clear up at all, and within a month, if he didn't know what was wrong, he couldn't answer.

  • He suggested I try Buscopan however on reading the leaflet at home, it said not to take if you have a high heart rate or thyroid problems – I have both.

  • He is referring me to a specialist to see about having my gall bladder removed.

So this is where I am left at the moment - still swollen, in extreme pain, unable to sleep, emotional, and being told to live with this pain and discomfort until it finally goes away. I don't feel like enough has been done to find out why this started after my colonoscopy. As per my phone call with someone at PALS on Friday, I'd like to find out if something was done during my colonoscopy that might have caused this pain and swelling; and I'd like to find out if there's anything that can be done to make it better.

Thank you in advance for your time with this problem, and for any help you can give with moving forward.

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

daloni
Posted by

Crikey, . That’s a helluva read. But then it’s been a helluva time. I do hope you can get to the bottom of what’s causing this pain and swelling - and more important - a way to feel better 

xx

Gragon
Posted by

Hi ,

Good e mail and good for you in following it up.  I hope that matters are resolved soon, I have had a good response from PALS in the past.

love and hugs,

Gragon xx

kirky68
Posted by

Well done Lasa. Must have been an effort but hopefully it will be worth it to get something sorted for you  

Hugs xx

Lynn2
Posted by

Oh Lass, i truly hope you get some answers to your questions and some relief from your pain. It sucks when they say there is no reason for your pain as they did with me at the same hospital yet they sent me home with Opioid medicine and till i take it i cant physicaly move in the morning and the pain is always there in my right lower abdomen !! Lynn 2.xx

Lynn 2. xx