The cat was the final straw.

Hi Lass

it wasn’t so much what they told me but what friends said. I bounced back in a couple of days. 

The radiologist who did the first biopsy said it would hurt and he was right. The second biopsy I had was way more painful and I was prescribed IV fentanyl in hospital just after, oral morphine overnight and then took paracetamol the day after. 

Liver pain is quite easy to distinguish, I think. You feel it predominantly in your right shoulder because one of the big nerves runs right by your liver. I know I can get pain in my chest and elsewhere when I’m all hunched up with anxiety. 

I am sorry to hear you missed the pub crawl in Newcastle (although tbh I can’t imagine anything I’d like less). I do hope you can get yourself up and about for your mum and brother’s visit 

xxx

Liver biopsy sounds painful.

do they do it under a scan ? I have a liver met.

what was your osteoporosis drug ?

some of these drugs are string and yes must have long term effects goodnyounhavebstopped taking it.

shame we have to suffer pain for investigations such as blood tests 

let us know the biopsy results.

Hi ruthjp

I had a CT scan before the biopsy then on the day the radiologist used that on the screen and ultrasound on my body. I had the biopsies as part of the trial. 

Xx

Hmmmm. 

Site of entry is bruised still, not a surprise, and it mostly only hurts if I do something to squish or stretch it. Lol. So lifting cat litter makes it unhappy, as did the hysteroscopy with biopsy this morning too. 

Now, I've always told the womb folks that none of my hysteroscopies, biopsies, or myosure procedures hurt more than a little discomfort, a bit of a sting, then some cramping afterwards. I can no longer say this! My hysteroscopy nurse, who is the same one who has done them all, could only suggest that everything else going on in my abdomen has everything on high alert and extra sensitive. Even just the camera having a look around hurt. So much so, I thought that was her taking the biopsies! It was ridiculous! AND, normally I only take paracetemol and Ibuprofen beforehand. Today I took Ibuprofen and cocodamol. So wtf body?! (Good news is it all looks exactly as it did last time, so no sign of anything untoward. This means that depending on the biopsy results, she wants to reduce my oral meds and extend my checks to yearly instead of 6 monthly. So we shall see what is said in a month ish when the results come back)

I'm hoping the pain in my back that has been niggling and twining and getting worse is related to something in my abdomen. I'm trying to tell myself I've been sitting and lying in odd positions, or holding myself funny, or I've twinged something somehow. But there's that whisper reminding me my cancer markers had increased about 6 months ago, and that the pain is where we know a bone met is. The whisper is getting louder, because a week tomorrow I get my latest bloods back, so I'll see if it has crept higher again or not. And when I find out it hasn't, I'll feel a right pillock for worrying. 

Called PALS today to have them chase Gastro as still noone has called me back. So 2 weeks after I made the complaint, I'm no further forward. The woman reopened my complaint to chase them. I was too shocked, doped up, and sore to think fast enough and ask why on earth it was closed when noone had told me anything! So now they have until the end of Wed to contact me. FFS. 

Oh, anyone any home remedies for ear wax? I've gone deaf in my right ear today and olive oil does nothing. 

Thanks for listening, and any tips on the ear! 

Lass

Xx

Thank you for the reply.

i hope you enjoy Estonia 

So, update.... 

No reply from Gastro so chased PALS last Wed. They chased Gastro again, should have heard by Friday. GUESS WHAT! No response. Phoned PALS again and left a message on their answering machine.

Monday morning get a call from PALS telling me they've passed it to 'The Matron'. She should get back to me.

Monday afternoon right as I sit down after a lovely meet up with Tinalay and Gragon, receive a call from Gastro Admin. Have a firm word with him and he tells me that the Matron will get back to me in writing within 21 days. You can imagine how impressed I was with that one. He also said he'd chase the doctor I saw 2 weeks ago who said that he'd get back to me and didn't. 

Right now, I've no idea what's going on, what I'm waiting for, or what the point is anymore. Maybe this pain and swelling is now permanent? 

Saw my GP today. He's been sent a letter by the doctor I saw 2 weeks ago. I think I've been sent a copy too, not sure. However..... Listen to this shit.... 

"I have now had the chance to review your CT scan which was undertaken by one of our expert gastrointestinal radiologists" (It wasn't, it was done by your normal radiologist who does every scan a CT can do.) "Our radiologist has confirmed that there is no evidence of perforation or anything untoward that may have taken place during your colonoscopy that is visible on CT. I have also reviewed the images taken at the time of your colonoscopy and although I know you had some concerns that clips were placed," (nope, no concerns about the clips whatsoever) "this is something we often do routinely and I have seen nothing on the images to suggest this was anything other than routine placement of clips.

As promised I have also been in touch with our endoscopy management team with regards to your contact with PALS. " (This was never discussed, I was expecting him to provide the answers. Didn't even know there was an endoscopy management team!) "They are going to look into your concerns and get back to you as soon as possible."

Then he just says to call his secretary if I want to discuss anything else with him. Or I can wait for an appointment with my assigned consultant, which I think is on the 29th. That was dictated on the 1st, typed on the 6th, and still hasn't reached me. 

I'm so tired, so drained, so demoralised. Trying to find the fight to keep chasing this is getting harder and harder. Maybe I should just accept this is my new normal. Take more pain killers and just say fuck it, nothing else to be done. Who knows. 

Lass

Xx

Oh Lass. I’m at a loss for words and I’m just reading  this. No wonder you feel so down. I can totally understand that you feel like chucking in the towel. When I read your update, it made me about the fight it must have taken campaigners like Steven Lawrence’s mum and dad and those many others who take their cases all the way.  It show just how tough one has to be to make headway when every door is skimmed. 

I really hope this isn’t your new normal. I don’t know whether you have it in you to go further but the health ombudsman might be your next stop. 

Did you have a good time with Gragon and Tinalay? I do hope so. 

Love and very gentle hugs xxxx

Hi Lass,

I can't believe that you are still being sent around in circles.  Well actually, when I think about yes I can believe it but it still is not acceptable.  What does your GP intend to do to try and get some straight answers?  If they are not planning to chase it up then I agree with Daloni that perhaps it is time to ramp up the pressure.

, I had a lovely time when I met with Lass and Tinalay.  However, they did drag me around the market at Leeds, something I have managed to avoid doing with my wife in the 20 years since we moved up here.  Have a great time in Slovenia.

love to all,

Gragon xx

Dear Lass

Once again I am angry on your behalf, the lack of sensitivity, communication. It's not acceptable at all. If PALS can't help where do you go next? This fighting must be exhausting for you

 Xx

Gragon, you're a very patient man  It was worth going to the market just to see the pork arseholes on display!!! xx