Effing cancer is an effing effer, frankly
Discussion
I was fortunate enough to have a PET scan for my lung cancer in July this year. I had to have the VATS biopsies taken at a hospital in a different trust at the end of August. The trust that carried out the biopsies have never been able to view the PET scan, apparently. It was my choice to have the biopsies outside of the trust I would be covered by. On reflection, I'd rather have waited.
If you get the chance to go to Cobalt in Cheltenham for it, it's fantastic. I fell asleep and had to be woken after the scan. You need to avoid children for a few hours afterwards.
Following the VATS biopsies, I developed a pulmonary embolism which stopped any treatment for six weeks, then the CT scan which was carried out to make sure the embolism had diminished identified another mass in the upper lobe of the same lung.
I'd hoped to have had surgery to remove the left lower lobe in September. Now I'm looking at surgery in December, if it's confined to the left lower lobe, or chemotherapy for a while if it isn't.
The medical profession, in my experience, can be a bit dictatorial. The trust dealing with me have their MDT's on a Thursday. They'll call you on a Thursday afternoon and demand that you go to hospital the following morning for something that showed up on a scan four days ago. I was away for a long weekend and told them I couldn't be there. I got so much grief by phone that I ended up making a 400 mile round trip to be told something that I could (and arguably should) have been told days before. I get the impression that arse covering is a higher priority than patient convenience.
It's all a massive pain in the arse. I've never been ill before, and I didn't know how to arrange repeat prescriptions. It's easier than I imagined, but it's something to learn. If you haven't already, get a medical exemption certificate for prescription charges.
Good luck with it, it's a f
king journey and a half.
If you get the chance to go to Cobalt in Cheltenham for it, it's fantastic. I fell asleep and had to be woken after the scan. You need to avoid children for a few hours afterwards.
Following the VATS biopsies, I developed a pulmonary embolism which stopped any treatment for six weeks, then the CT scan which was carried out to make sure the embolism had diminished identified another mass in the upper lobe of the same lung.
I'd hoped to have had surgery to remove the left lower lobe in September. Now I'm looking at surgery in December, if it's confined to the left lower lobe, or chemotherapy for a while if it isn't.
The medical profession, in my experience, can be a bit dictatorial. The trust dealing with me have their MDT's on a Thursday. They'll call you on a Thursday afternoon and demand that you go to hospital the following morning for something that showed up on a scan four days ago. I was away for a long weekend and told them I couldn't be there. I got so much grief by phone that I ended up making a 400 mile round trip to be told something that I could (and arguably should) have been told days before. I get the impression that arse covering is a higher priority than patient convenience.
It's all a massive pain in the arse. I've never been ill before, and I didn't know how to arrange repeat prescriptions. It's easier than I imagined, but it's something to learn. If you haven't already, get a medical exemption certificate for prescription charges.
Good luck with it, it's a f
king journey and a half.I live just North of Bedford. Bedford Hospital is attached to Luton and Dunstable hospital, who in turn are linked to Mount Vernon , Northwood, for scans, radiotherapy etc.
At least I know now that a PET scan is a good thing to have and will be useful,
It's the length of delay involved when I want surgery asap that's my concern. The surgery would be at Luton hospital too.
I don't think I'm well enough to drive myself there and back in a day, I hate driving at night anyway. So will have to go by taxi, or stay overnight in a hotel and drive back the following day.
At least I know now that a PET scan is a good thing to have and will be useful,
It's the length of delay involved when I want surgery asap that's my concern. The surgery would be at Luton hospital too.
I don't think I'm well enough to drive myself there and back in a day, I hate driving at night anyway. So will have to go by taxi, or stay overnight in a hotel and drive back the following day.
s2sol said:
I was fortunate enough to have a PET scan for my lung cancer in July this year. I had to have the VATS biopsies taken at a hospital in a different trust at the end of August. The trust that carried out the biopsies have never been able to view the PET scan, apparently. It was my choice to have the biopsies outside of the trust I would be covered by. On reflection, I'd rather have waited.
If you get the chance to go to Cobalt in Cheltenham for it, it's fantastic. I fell asleep and had to be woken after the scan. You need to avoid children for a few hours afterwards.
Following the VATS biopsies, I developed a pulmonary embolism which stopped any treatment for six weeks, then the CT scan which was carried out to make sure the embolism had diminished identified another mass in the upper lobe of the same lung.
I'd hoped to have had surgery to remove the left lower lobe in September. Now I'm looking at surgery in December, if it's confined to the left lower lobe, or chemotherapy for a while if it isn't.
The medical profession, in my experience, can be a bit dictatorial. The trust dealing with me have their MDT's on a Thursday. They'll call you on a Thursday afternoon and demand that you go to hospital the following morning for something that showed up on a scan four days ago. I was away for a long weekend and told them I couldn't be there. I got so much grief by phone that I ended up making a 400 mile round trip to be told something that I could (and arguably should) have been told days before. I get the impression that arse covering is a higher priority than patient convenience.
It's all a massive pain in the arse. I've never been ill before, and I didn't know how to arrange repeat prescriptions. It's easier than I imagined, but it's something to learn. If you haven't already, get a medical exemption certificate for prescription charges.
Good luck with it, it's a fking journey and a half.
You may wish to contact Macmillan charity. They offered amazing help to my sister recently. They appear to have very good contacts with local government / NHS / DWP and were able to arrange all sorts of benefits for her in very short time. Sadly, last month, she lost her battle with cancer which had been ongoing for a few years but their help in the last months of her life made a real differenceIf you get the chance to go to Cobalt in Cheltenham for it, it's fantastic. I fell asleep and had to be woken after the scan. You need to avoid children for a few hours afterwards.
Following the VATS biopsies, I developed a pulmonary embolism which stopped any treatment for six weeks, then the CT scan which was carried out to make sure the embolism had diminished identified another mass in the upper lobe of the same lung.
I'd hoped to have had surgery to remove the left lower lobe in September. Now I'm looking at surgery in December, if it's confined to the left lower lobe, or chemotherapy for a while if it isn't.
The medical profession, in my experience, can be a bit dictatorial. The trust dealing with me have their MDT's on a Thursday. They'll call you on a Thursday afternoon and demand that you go to hospital the following morning for something that showed up on a scan four days ago. I was away for a long weekend and told them I couldn't be there. I got so much grief by phone that I ended up making a 400 mile round trip to be told something that I could (and arguably should) have been told days before. I get the impression that arse covering is a higher priority than patient convenience.
It's all a massive pain in the arse. I've never been ill before, and I didn't know how to arrange repeat prescriptions. It's easier than I imagined, but it's something to learn. If you haven't already, get a medical exemption certificate for prescription charges.
Good luck with it, it's a f
king journey and a half.I'm back from the discussion group. The cancer is very advanced T4, so the PET CT scan is needed to see if surgery is still possible. The good thing is that it is booked in for this Tuesday at Lister Hospital in Stevenage, which is a lot closer. It seems that as I'd be making my own way there, Lister became an option - I don't know why that hadn't been mentioned before, presumably because the cancer nurse didn't know.
Next team discussion will be Thursday morning so should hear soon after that.
Next team discussion will be Thursday morning so should hear soon after that.
Lister's a good hospital. Macmillan have a support centre onsite there: https://www.enherts-tr.nhs.uk/services/macmillan-i...
You should consider stopping in while you're there for a chat with them. Give 'em a call beforehand so they know you're coming.
Keeping my fingers crossed for you.
You should consider stopping in while you're there for a chat with them. Give 'em a call beforehand so they know you're coming.
Keeping my fingers crossed for you.
Thanks for the good wishes. The worse thing at the moment is that having been told to stop the steroids ( which did help ease the inflammation) my throat has sealed itself again so I can't drink anything. I try in the hope that some fluid will get through via osmosis. This inflammation will also close my airway, so I'm waiting to slowly suffocate. I've been told I'm to head to A & E for a tracheostomy before that happens.
I went to bed last night not expecting to be alive this morning - but I am.
I went to bed last night not expecting to be alive this morning - but I am.
Yes, that's why they put me on the steroids for a week - but then on Friday they said I was to stop taking them. The surgeons are more concerned about my airway than that I can't swallow - that's why they've said I'm to go to A & E for a tracheostomy if my breathing gets really bad. I need to be hydrated for the PET CT scan though, so I'm trying to find out if I can have an iv drip. A feeding tube was mentioned on Friday but not till after the PET scan, as if I had it before I wouldn't get the scan.
The annoying thing is that no one seems to work in Oncology or the hospital generally at the weekend.
The annoying thing is that no one seems to work in Oncology or the hospital generally at the weekend.
Camoradi said:
You may wish to contact Macmillan charity. They offered amazing help to my sister recently. They appear to have very good contacts with local government / NHS / DWP and were able to arrange all sorts of benefits for her in very short time. Sadly, last month, she lost her battle with cancer which had been ongoing for a few years but their help in the last months of her life made a real difference
Thanks very much. I'm still trying to ignore the fact that I've got cancer at the moment. I'm relatively young, and struggling to accept it. I'm sorry about your sister, and I'm glad that Macmillan were able to make things easier for her. I'm hoping for a prognosis in the next few days, then I'll have to acknowledge the facts.
I’m to have the scan lunchtime today, then be admitted to hospital for feeding tube, fluids etc. Stay there at least a week or more. Results of the scan will determine whether they can operate or palliative care. Up early this morning, to take a steroid (am now allowed ) and to try and get some water down my throat. This involves a steam head bath to open up the throat. Then short sips, chin down to try and force some water to the roof of the mouth, then down without getting the windpipe. Will have the iPhone with me so will be able to update from hospital.
condor said:
I’m to have the scan lunchtime today, then be admitted to hospital for feeding tube, fluids etc. Stay there at least a week or more. Results of the scan will determine whether they can operate or palliative care. Up early this morning, to take a steroid (am now allowed ) and to try and get some water down my throat. This involves a steam head bath to open up the throat. Then short sips, chin down to try and force some water to the roof of the mouth, then down without getting the windpipe. Will have the iPhone with me so will be able to update from hospital.
All the best condor and thinking of you buddy All the best condor.
MIL is just over two years since being diagnosed with bowel cancer which had spread and things are looking well, stay positive!
Unfortunately our local landlord, who’s a friend of 15 years or so, has just been diagnosed, back pain led to hospital action and some sort of brain tumour, doesn’t look like he will see Christmas and he’s only 50 odd.
fk cancer.
MIL is just over two years since being diagnosed with bowel cancer which had spread and things are looking well, stay positive!
Unfortunately our local landlord, who’s a friend of 15 years or so, has just been diagnosed, back pain led to hospital action and some sort of brain tumour, doesn’t look like he will see Christmas and he’s only 50 odd.
f
k cancer. Edited by anonymous-user on Monday 6th December 09:28
Edited by anonymous-user on Wednesday 15th December 20:41
Condor, I have been worrying about what I, or anyone, could possibly say to you that would give you comfort in such straits, but I have failed. My thoughts are with you and sincerest hope that the progress of your condition causes the least possible pain and distress. I have no idea how you are bearing up as you are. Best wishes for your treatment and its much hoped-for success. Bon chance
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