After my spinal biopsy last week I was quite sore around the spot where they'd taken their samples from, in addition to the 'normal' daily pain in my spine. I'm sure now it's a different type of pain because I had two pains at the same time - the draining, constant dull ache in the spine from the mets PLUS the soreness around the area of the biopsy...however, now I'm back to just the one pain, the soreness at least has eased off.
Saw the palliative care team on Monday and had the pain med's tweaked around a bit. We are reviewing in two weeks to do the same again.
Wednesday I met with the Breast Care (BC) team. Saw a very nice Doctor who discussed the MRI results with me. They showed 'a mass around and covering T9 with further limited spread into T10. Bone is impacted along with vertebrae around that area - but at the moment no spinal compression'.
MDT meeting on Friday decided after reviewing MRI that the way forward is Radiotherapy - 5 sessions over a week (Mon - Fri) starting this coming Monday.
The purpose of Radiotherapy is to reduce the 'mass' as much as possible and repair the damaged bone in that area.
The biopsy results are not yet back from the lab - however she feels that it will show the origin as being 'rectal' rather than a new primary.
We discussed why Cyberknife isn't an option and she explained that it is due to cost reasons. She explained that it hasn't been taken off the table but has been delayed for now because as it's an expensive treatment they would have to apply to the Cancer Fund for funding - the Cancer Fund would then refuse saying that they hadn't tried normal Radiotherapy on that area yet.
They would then have to do this first then reapply...all this would take at least 6 weeks, during which time I'd be having no treatment.
Therefore the MDT decided to go for normal high dose Radiotherapy and if they don't get a good enough result they WILL apply for funding for CyberKnife
We also talked about neurosurgery - she confirmed that they do not want to risk it at this point. The 'mass' is larger than they'd want it to be for surgery purposes and therefore they wouldn't be able to guarantee a good result with a positive outcome. It's major surgery and after weighing it up they've decided it's off the table for now. I really didn't want spinal surgery anyway.
After the Radiotherapy, they are interested in using Bisphosphonates
IF these treatments work she feels they can buy me time - 'possibly even as much as a couple of years compared to the alternative of months'....Therefore, much now depends on the Radiotherapy initially - then the Bisphosphonates afterwards.
However, if the Radiotherapy didn't work I'm not sure where we go from there - therefore it HAS to work this time :) Simple eh :)
Had my Radiotherapy planning meeting on Thursday. Four new tatoo's - so now I have seven in total :) Brief chat about side effects, usual stuff.
So, have Radiotherapy every day next week - side effects may include extreme tiredness, nausea and vomiting but NO burns this time :) Pain may well increase during treatment and for a week or so afterwards then if it's worked, pain should reduce dramatically or even disappear for a time.
Following Monday I have a follow up with palliative care. Then a further appointment with BC team on 30th November.
I also have a colorectal check up appointment on 28th but will probably reschedule this - because I've had scans recently, they've all been checked and double checked, my next CT is on 19th Dec to check the lung question so it makes sense for me to see the colorectal team AFTER they've got these results and we've got something to talk about, rather than me just stopping by for a chat about things that are already being dealt with now.
I just want this ongoing pain to give me a break now. I'm totally fed up with it...........
About Me
- Carole
- I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..
Sunday, 13 November 2011
Monday, 7 November 2011
Fundraising for Trinity Hospice
I just wanted to say a quick thank you to all those who have donated to my chosen charity Trinity Hospice.
Every single pound donated gives me a reason to say Yeah F*&k you cancer......I'm now up to 387 F*&k you's so far....I've plenty of breath left to add on more :)
So, a reminder that if Christmas means more to you than just the manic shopping, gift buying, wrapping and cooking (and eating too of course) - would you consider buying maybe just one less pack of cards, or one less roll of wrapping paper, or one less stocking filler and instead donate £2 to Trinity Hospice?
Again, many thanks to all those who have donated - and here's hoping for many more F*&k you cancer opportunities.
xxXxx
Every single pound donated gives me a reason to say Yeah F*&k you cancer......I'm now up to 387 F*&k you's so far....I've plenty of breath left to add on more :)
So, a reminder that if Christmas means more to you than just the manic shopping, gift buying, wrapping and cooking (and eating too of course) - would you consider buying maybe just one less pack of cards, or one less roll of wrapping paper, or one less stocking filler and instead donate £2 to Trinity Hospice?
Again, many thanks to all those who have donated - and here's hoping for many more F*&k you cancer opportunities.
xxXxx
Saturday, 5 November 2011
Biopsy Day.......
Spinal biopsy day was Thursday...it feels like lots happened in just a week :)
I wasn't looking forward to the biopsy, was quite scared to be honest, but I knew it had to be done so plucked up the courage and went on Thursday for this procedure.
Had a chat with the Doctor who would be doing this beforehand and although still apprehensive, I knew he'd get it right. I was given the option of either sedation or general anaesthetic - so chose the general. I told him there was no way I could do this under sedation as I remembered the whole conversations of the staff who did my colonoscopy - I recalled them planning their night out on the Friday because J was leaving the department and going to work up North...I really didn't fancy recalling anything to do with needles being poked into my spine - so took the cowards route and had a general.
The procedure took about an hour and I was then back in recovery. During my recovery period I developed a stinking headache that made me feel really sick - like an early stage migraine. This was because I was dehydrated and once I got back home and got some fluids in me, whilst resting in bed, it then went off and I managed to get up, eat some toast and peanut butter (yum) and had a cup of tea - then went back to bed until 10.30am next day. How can you sleep that long and STILL feel tired!
Had a phone conversation with one of the Breast care nurses on Friday afternoon. She told me that they'd had their weekly MDT and they'd discussed what they want to do. Firstly they've looked at the MRI I had done on Saturday to check that there was no risk of immediate spinal compression (it is this that causes problems such as bladder incontinence and paralysis of the lower limbs)...luckily it was felt that at the moment there is no immediate danger of this - however they've instructed the other hospital to contact me immediately with regard to palliative Radiotherapy sessions. She wasn't sure about how many or over which period of time but I'll sort that out with the Radiology team at the other hospital.
I asked if cyberknife had been considered as an alternative and she informed me that yes, they had investigated this option, it had been discussed with the head of the cyberknife team but was decided that I'm not suitable for this - they also felt the same about spinal surgery. I'm unsure as to exactly why at the moment but will be having a meeting with them hopefully next week.
So the reality now is that the option available to me is palliative Radiotherapy and possibly biophosphates (not sure of the exact spelling and right now, can't be bothered to google it LOL)...more will be revealed next week when I meet with them.
Best case scenario is that the Radiotherapy will reduce the tumour and stop it from growing for a while....worst case scenario is that Radiotherapy does nothing to the tumour. Time will tell but obviously hoping for the best case scenario right now.
Breast care nurse T, let me know that the pain may well increase for a short time during the Radiotherapy sessions but after a week or so the pain should subside dramatically. The purpose of Radiotherapy is two fold, to attempt to reduce the tumour by killing off as much of it as they can and to attempt to repair some of the bone damage that has been caused. I'm just hoping that it responds this time to Radiotherapy because it didn't last time. After my 18 sessions of Radiation last time there was very little difference made to the original tumour - so if it is from the same original tumour, it may be stubborn - on the other hand it may just completely die off and I'll be sitting here saying 'Amazing, all gone' :-))
Now THAT would be a nice post to write for sure :)
After my biopsy he warned me that I had to rest for at least a week - as much laying down in bed as possible - no lifting, no carrying, no excessive bending or stretching as after a biopsy on the spine there is a slight risk of bone breakage. So, I'm taking it really easy for the next week or so and doing as I'm told, resting a lot.
Apart from that I have an outpatients appointment with the palliative care team on Monday to discuss tweaking pain meds and such stuff.
Dj has gone to spend the weekend with his big brother and the lovely Leanne. They are taking him out somewhere for firework night, it's always been a tradition that they take him to the fireworks every year and I'm hoping that even when Dj is 30 and J 49 yrs old they will still get together every November 5th :)
Because J has taken him for the weekend I can take the daytime dose of tramadol because if I need to sleep I can - when he's here I don't want to be constantly sleeping so reduce the dosage, but that of course increases the pain somewhat.....catch 22 eh!
So, that's what's going on at the moment - I am okay, if I can get rid of this pain I'd be able to say 'I'm good'...strangely enough I'm the best weight I've been for years, my skin and hair are in great condition, I eat well and if I didn't have this pain I'd be able to just get on with doing things...living my life...and just 'doing'..
Big hope for no pain soon so I can do exactly that :)
My lovely sister, Sarah, is coming over at the end of the month and I'm really looking forward to that. I've not seen her since March when I was over in Rhodes so will be great to be able to properly catch up again. I've also not managed to catch up with mum or dad lately simply because I've not been able to do the train journey to them, mum broke her hip a short while back so she's only just started getting a bit more mobile - I'm hoping to be able to see them next week once I've sorted out my treatment days etc...I know my dad's feeling neglected :-))
Oh and for all those who know me in real life.....Dj doesn't yet know about the spinal mets...he (obviously) knows I've had problems with my back, he knows that I've had 'some fluid taken with a needle to see if they can work out what is causing the pain'...and that's ALL he knows at the moment. I wanted to wait until after Christmas to talk to him about what is going on - if possible - I also want to make sure I have all the facts first so that I can tell him what the plan is.
Catch up soon - much luv to all xxXxx
I wasn't looking forward to the biopsy, was quite scared to be honest, but I knew it had to be done so plucked up the courage and went on Thursday for this procedure.
Had a chat with the Doctor who would be doing this beforehand and although still apprehensive, I knew he'd get it right. I was given the option of either sedation or general anaesthetic - so chose the general. I told him there was no way I could do this under sedation as I remembered the whole conversations of the staff who did my colonoscopy - I recalled them planning their night out on the Friday because J was leaving the department and going to work up North...I really didn't fancy recalling anything to do with needles being poked into my spine - so took the cowards route and had a general.
The procedure took about an hour and I was then back in recovery. During my recovery period I developed a stinking headache that made me feel really sick - like an early stage migraine. This was because I was dehydrated and once I got back home and got some fluids in me, whilst resting in bed, it then went off and I managed to get up, eat some toast and peanut butter (yum) and had a cup of tea - then went back to bed until 10.30am next day. How can you sleep that long and STILL feel tired!
Had a phone conversation with one of the Breast care nurses on Friday afternoon. She told me that they'd had their weekly MDT and they'd discussed what they want to do. Firstly they've looked at the MRI I had done on Saturday to check that there was no risk of immediate spinal compression (it is this that causes problems such as bladder incontinence and paralysis of the lower limbs)...luckily it was felt that at the moment there is no immediate danger of this - however they've instructed the other hospital to contact me immediately with regard to palliative Radiotherapy sessions. She wasn't sure about how many or over which period of time but I'll sort that out with the Radiology team at the other hospital.
I asked if cyberknife had been considered as an alternative and she informed me that yes, they had investigated this option, it had been discussed with the head of the cyberknife team but was decided that I'm not suitable for this - they also felt the same about spinal surgery. I'm unsure as to exactly why at the moment but will be having a meeting with them hopefully next week.
So the reality now is that the option available to me is palliative Radiotherapy and possibly biophosphates (not sure of the exact spelling and right now, can't be bothered to google it LOL)...more will be revealed next week when I meet with them.
Best case scenario is that the Radiotherapy will reduce the tumour and stop it from growing for a while....worst case scenario is that Radiotherapy does nothing to the tumour. Time will tell but obviously hoping for the best case scenario right now.
Breast care nurse T, let me know that the pain may well increase for a short time during the Radiotherapy sessions but after a week or so the pain should subside dramatically. The purpose of Radiotherapy is two fold, to attempt to reduce the tumour by killing off as much of it as they can and to attempt to repair some of the bone damage that has been caused. I'm just hoping that it responds this time to Radiotherapy because it didn't last time. After my 18 sessions of Radiation last time there was very little difference made to the original tumour - so if it is from the same original tumour, it may be stubborn - on the other hand it may just completely die off and I'll be sitting here saying 'Amazing, all gone' :-))
Now THAT would be a nice post to write for sure :)
After my biopsy he warned me that I had to rest for at least a week - as much laying down in bed as possible - no lifting, no carrying, no excessive bending or stretching as after a biopsy on the spine there is a slight risk of bone breakage. So, I'm taking it really easy for the next week or so and doing as I'm told, resting a lot.
Apart from that I have an outpatients appointment with the palliative care team on Monday to discuss tweaking pain meds and such stuff.
Dj has gone to spend the weekend with his big brother and the lovely Leanne. They are taking him out somewhere for firework night, it's always been a tradition that they take him to the fireworks every year and I'm hoping that even when Dj is 30 and J 49 yrs old they will still get together every November 5th :)
Because J has taken him for the weekend I can take the daytime dose of tramadol because if I need to sleep I can - when he's here I don't want to be constantly sleeping so reduce the dosage, but that of course increases the pain somewhat.....catch 22 eh!
So, that's what's going on at the moment - I am okay, if I can get rid of this pain I'd be able to say 'I'm good'...strangely enough I'm the best weight I've been for years, my skin and hair are in great condition, I eat well and if I didn't have this pain I'd be able to just get on with doing things...living my life...and just 'doing'..
Big hope for no pain soon so I can do exactly that :)
My lovely sister, Sarah, is coming over at the end of the month and I'm really looking forward to that. I've not seen her since March when I was over in Rhodes so will be great to be able to properly catch up again. I've also not managed to catch up with mum or dad lately simply because I've not been able to do the train journey to them, mum broke her hip a short while back so she's only just started getting a bit more mobile - I'm hoping to be able to see them next week once I've sorted out my treatment days etc...I know my dad's feeling neglected :-))
Oh and for all those who know me in real life.....Dj doesn't yet know about the spinal mets...he (obviously) knows I've had problems with my back, he knows that I've had 'some fluid taken with a needle to see if they can work out what is causing the pain'...and that's ALL he knows at the moment. I wanted to wait until after Christmas to talk to him about what is going on - if possible - I also want to make sure I have all the facts first so that I can tell him what the plan is.
Catch up soon - much luv to all xxXxx
Monday, 31 October 2011
At last....some positive news :)
I don't have Breast cancer :)
On Friday, I had my mammogram and appointment with the Breast care clinic. Met with a lovely consultant, Mr R, who I had a long chat with prior to the mammogram and asked him if it would be possible to get my results same day. He said that normally they wouldn't do this - however because he felt that I had more than enough to be dealing with he agreed that he would get the result for me that day.
After my mammogram (which if you've not had one before was uncomfortable but not painful in any way) I met with him again and he informed me that it was, as I'd expected, completely clear.
Therefore it appears that the tumour on my spine has indeed come from the original rectal tumour and has found itself a new home in my spine.
Mr R was the most lovely man and we had a chat about 'options' now. I told him I'd done some research myself on cyberknife treatment. I expected him to say this wouldn't be available to me but he actually said that as far as he's concerned 'all options are now on the table - including cyberknife'. He informed me that he wants to take my case on as his department deal more often with spinal mets than my current colorectal team.
Spinal mets in Rectal cancer are relatively rare - less than 4% of cases worldwide - therefore he feels that his team are better equipped to deal with this and has agreed to take me on, regardless of the absence of any breast tumours.
He feels I'm a bit of a puzzle and therefore interesting to him...it's not only unusual for spinal mets to develop from Rectal cancer, it's also highly unusual for this to happen so soon after my original surgery and without the appearance of mets to the liver first. Therefore as I'm unusual the 'NHS resources are now at my disposal '....:)
I really liked Mr R - felt confident with him and I know he will do his best to provide me with a quality of life.
We discussed what my priorities are and I explained that I'm fully aware of the seriousness of spinal mets, I accept this and my main priority is now removal of the pain.
He feels that he can achieve this - at least in the short term. We talked at length about a couple of options, cyberknife, radiotherapy, short term chemo or neurosurgery....Now, I admit I took a very deep breath at the thought of surgery on my spine BUT if it makes a difference to my quality of life and he feels that is the best option then this is the path I will have to follow - but I admit to being totally scared about spinal surgery!
He assured me that now I'm officially under his team, things will start to happen quickly.... He explained that things HAVE to happen quickly now because spinal compression can cause damage that absolutely cannot be reversed therefore it is essential that things now happen fast.
He also insisted that I could not leave his department on Friday without first seeing the Palliative care team so that they could start working on immediate pain relief. (I had previously been referred by my colorectal team but was waiting to hear from them). He contacted them and asked that they come down to his department and meet with me today as he felt that it is completely unacceptable to be in this much pain
So I waited and met with a lovely doctor, Dr D, from the Palliative care team who talked through the pain symptoms with me and tweaked various medications to give some immediate relief from the CONSTANT pain I'm now in. He also carried out some neurological tests to ensure that the reflexes were behaving as they would expect and that there was no sign of imminent damage being caused...he explained that if he was concerned about this I would have been admitted on Friday. However, so far things are 'okay'...
I've been warned about signs to look out for and instructed to get myself to A&E immediately should I notice any of them.
So, to relive the pain I'm now on 5 different types of medication - short term - whilst they make decisions on what to do. Mr R's team are meeting this Thursday to make decisions on the next step/s.
He feels that in the short term I am 'fixable'...in other words they can do stuff to reduce the tumour and relieve the pain. What they probably can't do is completely remove the tumour - but they can try to control it and therefore give me back some quality of pain free life for as long as......So for now, I'm concentrating on what they can do rather than what they can't do.
I got home just after 6pm after being at the hospital from 10am - so a very long, but extremely productive day.
By the time I arrived home there were three messages on my ansaphone asking if I could come in for an MRI on Monday...so true to his word, things are happening now 'urgently'...Then later on in the evening I received another phone call asking if I could come in for the MRI at 12.30 on Saturday instead!.
So on Saturday I had my 45 minute MRI to check the spine area again. Mr R wants to see how deeply into the bone the tumour has embedded itself and also wanted to check the vertebrae involved. The Radiologist informed me that I was back in on Thursday 'for a procedure' that Mr R has organised! I told her I wasn't yet aware of this....she smiled and said Mr R works fast, you'll be told next week.
She then asked if I wanted to know what I was booked for and then told me that it was for a spinal biopsy.... GULP...really scared now!
I've spent the weekend feeling really drugged up but definitely in less pain now. The pain med's are working but the result of this is that I'm dizzy constantly, feeling sick 24/7, and need to sleep much more than normal - however the pain is less than it was prior to Friday.
I'm meeting again with the Palliative care team on Monday next week to see what needs some more tweaking med's wise.
I'm hoping that as the med's get into my system I may feel less nausea - or at least it might not be ALL the time. Right now concentrating on anything beyond a few minutes is difficult, because I feel completely spaced out all the time therefore I've decided to take this week off work and get the pain med's sorted first. I'm hoping to be able to go back next week because if I'm working then things are 'normal'...and I want to stay 'normal' for as long as possible.
It's taken me two days to write this update...I've had to do bits and then go back to it later due to my lack of concentration and also needing to go back to sleep. But on a positive, at least I can now sleep without being in constant agony - and it's been MONTHS since I last managed to sleep without pain.
I feel very optimistic about Mr R and his team - so it's all good right now :).....still scared about a spinal biopsy though and even more scared at the thought of spinal surgery!
Keep things crossed for me eh? Much luv xxXxx
On Friday, I had my mammogram and appointment with the Breast care clinic. Met with a lovely consultant, Mr R, who I had a long chat with prior to the mammogram and asked him if it would be possible to get my results same day. He said that normally they wouldn't do this - however because he felt that I had more than enough to be dealing with he agreed that he would get the result for me that day.
After my mammogram (which if you've not had one before was uncomfortable but not painful in any way) I met with him again and he informed me that it was, as I'd expected, completely clear.
Therefore it appears that the tumour on my spine has indeed come from the original rectal tumour and has found itself a new home in my spine.
Mr R was the most lovely man and we had a chat about 'options' now. I told him I'd done some research myself on cyberknife treatment. I expected him to say this wouldn't be available to me but he actually said that as far as he's concerned 'all options are now on the table - including cyberknife'. He informed me that he wants to take my case on as his department deal more often with spinal mets than my current colorectal team.
Spinal mets in Rectal cancer are relatively rare - less than 4% of cases worldwide - therefore he feels that his team are better equipped to deal with this and has agreed to take me on, regardless of the absence of any breast tumours.
He feels I'm a bit of a puzzle and therefore interesting to him...it's not only unusual for spinal mets to develop from Rectal cancer, it's also highly unusual for this to happen so soon after my original surgery and without the appearance of mets to the liver first. Therefore as I'm unusual the 'NHS resources are now at my disposal '....:)
I really liked Mr R - felt confident with him and I know he will do his best to provide me with a quality of life.
We discussed what my priorities are and I explained that I'm fully aware of the seriousness of spinal mets, I accept this and my main priority is now removal of the pain.
He feels that he can achieve this - at least in the short term. We talked at length about a couple of options, cyberknife, radiotherapy, short term chemo or neurosurgery....Now, I admit I took a very deep breath at the thought of surgery on my spine BUT if it makes a difference to my quality of life and he feels that is the best option then this is the path I will have to follow - but I admit to being totally scared about spinal surgery!
He assured me that now I'm officially under his team, things will start to happen quickly.... He explained that things HAVE to happen quickly now because spinal compression can cause damage that absolutely cannot be reversed therefore it is essential that things now happen fast.
He also insisted that I could not leave his department on Friday without first seeing the Palliative care team so that they could start working on immediate pain relief. (I had previously been referred by my colorectal team but was waiting to hear from them). He contacted them and asked that they come down to his department and meet with me today as he felt that it is completely unacceptable to be in this much pain
So I waited and met with a lovely doctor, Dr D, from the Palliative care team who talked through the pain symptoms with me and tweaked various medications to give some immediate relief from the CONSTANT pain I'm now in. He also carried out some neurological tests to ensure that the reflexes were behaving as they would expect and that there was no sign of imminent damage being caused...he explained that if he was concerned about this I would have been admitted on Friday. However, so far things are 'okay'...
I've been warned about signs to look out for and instructed to get myself to A&E immediately should I notice any of them.
So, to relive the pain I'm now on 5 different types of medication - short term - whilst they make decisions on what to do. Mr R's team are meeting this Thursday to make decisions on the next step/s.
He feels that in the short term I am 'fixable'...in other words they can do stuff to reduce the tumour and relieve the pain. What they probably can't do is completely remove the tumour - but they can try to control it and therefore give me back some quality of pain free life for as long as......So for now, I'm concentrating on what they can do rather than what they can't do.
I got home just after 6pm after being at the hospital from 10am - so a very long, but extremely productive day.
By the time I arrived home there were three messages on my ansaphone asking if I could come in for an MRI on Monday...so true to his word, things are happening now 'urgently'...Then later on in the evening I received another phone call asking if I could come in for the MRI at 12.30 on Saturday instead!.
So on Saturday I had my 45 minute MRI to check the spine area again. Mr R wants to see how deeply into the bone the tumour has embedded itself and also wanted to check the vertebrae involved. The Radiologist informed me that I was back in on Thursday 'for a procedure' that Mr R has organised! I told her I wasn't yet aware of this....she smiled and said Mr R works fast, you'll be told next week.
She then asked if I wanted to know what I was booked for and then told me that it was for a spinal biopsy.... GULP...really scared now!
I've spent the weekend feeling really drugged up but definitely in less pain now. The pain med's are working but the result of this is that I'm dizzy constantly, feeling sick 24/7, and need to sleep much more than normal - however the pain is less than it was prior to Friday.
I'm meeting again with the Palliative care team on Monday next week to see what needs some more tweaking med's wise.
I'm hoping that as the med's get into my system I may feel less nausea - or at least it might not be ALL the time. Right now concentrating on anything beyond a few minutes is difficult, because I feel completely spaced out all the time therefore I've decided to take this week off work and get the pain med's sorted first. I'm hoping to be able to go back next week because if I'm working then things are 'normal'...and I want to stay 'normal' for as long as possible.
It's taken me two days to write this update...I've had to do bits and then go back to it later due to my lack of concentration and also needing to go back to sleep. But on a positive, at least I can now sleep without being in constant agony - and it's been MONTHS since I last managed to sleep without pain.
I feel very optimistic about Mr R and his team - so it's all good right now :).....still scared about a spinal biopsy though and even more scared at the thought of spinal surgery!
Keep things crossed for me eh? Much luv xxXxx
Thursday, 20 October 2011
So.....what now?
Yesterday when I got home from work there was a message on my ansaphone from my nice colorectal nurse L...she had tried to contact me to discuss the recent bone scan results.
Immediately I knew this was going to be dodgy news simply because if it was good news she would have emailed me rather than called...however, the voice of reason starts to think 'Maybe she just wants to offer advice regarding the pain' ..then the other voice starts hearing the conversation that is pending.
Anyway to cut a long story short, I got very little sleep - was up at 4am with a stinking headache and of course the now familiar pain in the back driving me to distraction. Then at around 9.30am this morning L called me and we discussed the scan.
The outcome is that I have bone metastases (spine T9 and T10) - probably from the original rectal tumour BUT she stressed that this is very very very unusual as there are no lymph nodes impacted anywhere in the body, joints are unaffected and although it's possible for rectal cancer to move to the spine, it's extremely unusual for it to go to the spinal region without going somewhere more common first.....
So, to make sure all bases are covered she is requesting an urgent mammogram just to check that there is no sign of Breast cancer.
L explained that bone mets (to the spine) are more common with BC rather than rectal cancer - the mammogram is therefore to make sure there definitely isn't a tumour in that area...The recent CT I had on the chest area didn't pick up anything in the breast area - but then again, it didn't pick up the spinal mets either - but the mammogram is precautionary more than anything.
Putting all that to one side, it changes very little. Bone metastases cannot be 'fixed', I'm no longer considered 'curable'.... but we discussed what we can do to regain some quality of life.
The short term plan is urgent mammogram and L is contacting the other hospital involved in my care to organise some Radiotherapy sessions to alleviate the pain I've been experiencing. My care team will be discussing me on Monday to decide on next steps.
As to the long term plan.......the simple answer right now is, I don't know. I do know that my long term survival statistics have now dropped dramatically - I also know that right now I'm still here and that life isn't infinite for any of us..
How do I feel? Pissed off with it all to be honest - but I DID expect this result.
I knew that the pain in my rib/shoulder area wasn't a 'normal' pain, it wasn't a run of the mill aches and pains type of pain so I knew it would either be bone mets or the other possibility I was looking at was damage from the Radiotherapy (*but that would have been more likely to have been joint issues rather than mid spinal column).
I did what I always do when faced with something and researched beforehand....spinal mets from rectal cancer only affect a tiny amount of people, in the region of around 4% or less - and that small amount of people who are affected by bone mets tend to become so after numerous tumours move into the liver/lungs/pelvic area first - so I was a little hopeful that despite my concerns it might turn out to be nothing serious.
No such luck eh :)
I don't believe in God but if I did, I'd definitely now believe he's got it in for me for some reason.....
Bastard cancer!
Catch up soon xx
Immediately I knew this was going to be dodgy news simply because if it was good news she would have emailed me rather than called...however, the voice of reason starts to think 'Maybe she just wants to offer advice regarding the pain' ..then the other voice starts hearing the conversation that is pending.
Anyway to cut a long story short, I got very little sleep - was up at 4am with a stinking headache and of course the now familiar pain in the back driving me to distraction. Then at around 9.30am this morning L called me and we discussed the scan.
The outcome is that I have bone metastases (spine T9 and T10) - probably from the original rectal tumour BUT she stressed that this is very very very unusual as there are no lymph nodes impacted anywhere in the body, joints are unaffected and although it's possible for rectal cancer to move to the spine, it's extremely unusual for it to go to the spinal region without going somewhere more common first.....
So, to make sure all bases are covered she is requesting an urgent mammogram just to check that there is no sign of Breast cancer.
L explained that bone mets (to the spine) are more common with BC rather than rectal cancer - the mammogram is therefore to make sure there definitely isn't a tumour in that area...The recent CT I had on the chest area didn't pick up anything in the breast area - but then again, it didn't pick up the spinal mets either - but the mammogram is precautionary more than anything.
Putting all that to one side, it changes very little. Bone metastases cannot be 'fixed', I'm no longer considered 'curable'.... but we discussed what we can do to regain some quality of life.
The short term plan is urgent mammogram and L is contacting the other hospital involved in my care to organise some Radiotherapy sessions to alleviate the pain I've been experiencing. My care team will be discussing me on Monday to decide on next steps.
As to the long term plan.......the simple answer right now is, I don't know. I do know that my long term survival statistics have now dropped dramatically - I also know that right now I'm still here and that life isn't infinite for any of us..
How do I feel? Pissed off with it all to be honest - but I DID expect this result.
I knew that the pain in my rib/shoulder area wasn't a 'normal' pain, it wasn't a run of the mill aches and pains type of pain so I knew it would either be bone mets or the other possibility I was looking at was damage from the Radiotherapy (*but that would have been more likely to have been joint issues rather than mid spinal column).
I did what I always do when faced with something and researched beforehand....spinal mets from rectal cancer only affect a tiny amount of people, in the region of around 4% or less - and that small amount of people who are affected by bone mets tend to become so after numerous tumours move into the liver/lungs/pelvic area first - so I was a little hopeful that despite my concerns it might turn out to be nothing serious.
No such luck eh :)
I don't believe in God but if I did, I'd definitely now believe he's got it in for me for some reason.....
Bastard cancer!
Catch up soon xx
Wednesday, 12 October 2011
Bone Scan........
Done......
Today I had the much waited for, and needed, bone scan. Firstly they inject you with some nuclear material then you sit around and wait for about 3.5 hours for this to do it's work.
After that they take tons of pictures using this state of the art machine (thank you Philips) which will show if there are any 'hot-spots' in the bones.
Now I've just got to wait for the results - which the very nice Bone scan man said would be done 'asap' for me.
Fingers crossed for the best possible outcome :)
Bone scan man was very helpful and explained everything fully. He let me see the scan picture on the PC afterwards which was really interesting.
I stood staring at it, studying it for a while and he asked 'What are you thinking?'...I replied 'It's weird, I'm looking at future history....at some point in the future someone may dig up my bones and this is what they'll see...this is my mark on the world, this bunch of bones'......
Just to add, this picture above isn't REALLY me - this is just an example of what you see after a bone scan....:)
Much luv
xxXxx
Today I had the much waited for, and needed, bone scan. Firstly they inject you with some nuclear material then you sit around and wait for about 3.5 hours for this to do it's work.
After that they take tons of pictures using this state of the art machine (thank you Philips) which will show if there are any 'hot-spots' in the bones.
Now I've just got to wait for the results - which the very nice Bone scan man said would be done 'asap' for me.
Fingers crossed for the best possible outcome :)
Bone scan man was very helpful and explained everything fully. He let me see the scan picture on the PC afterwards which was really interesting.
I stood staring at it, studying it for a while and he asked 'What are you thinking?'...I replied 'It's weird, I'm looking at future history....at some point in the future someone may dig up my bones and this is what they'll see...this is my mark on the world, this bunch of bones'......
Just to add, this picture above isn't REALLY me - this is just an example of what you see after a bone scan....:)
Much luv
xxXxx
Sunday, 9 October 2011
Can you trust your Doctor?........
This was the title of the Dispatches programme on Channel 4 this week 'Can you trust your Doctor?'..
Worth watching if you missed it - available here....... but I think you do have to be UK based to view
http://www.channel4.com/programmes/dispatches/4od
I found this programme interesting because it goes back to what I've talked about on previous occasions - taking responsibility for your own health, not just sitting and nodding if the Doctor appears not to be on-board or dismissive, not leaving the surgery with a prescription for painkillers instead of a referral for assistance...however in some cases on this programme people were left with no help at all.
'Anthony' went undercover to film one particular GP. This GP had been investigated in the past (2006) for failing to spot cancer...
'Anthony' presented with typical symptoms of bowel cancer, rectal bleeding, abdominal cramps, very bad constipation - he left the surgery with a prescription for laxatives and instructions from the GP to 'eat mangoes'...One month later Anthony goes back and informs the GP that the symptoms have not gone away - he then leaves with a prescription for stronger laxatives and instructions from the GP to 'eat green pears'....Two other doctor's that 'Anthony' presented to (different surgeries) immediately referred him for tests on his first visit to them.
GP's are informed of the 'typical' symptoms to watch out for with regard to colorectal cancers, it seems ridiculous that some are still not aware of the signs.
Another lady went to her GP 14 times after suffering severe breathlessness...she was diagnosed with 'asthma'. Sounds acceptable until you hear that this lady had no previous breathing issues and had breast cancer a few years prior to the breathing issues developing.
Fast forward 9 months and this lady then demands a scan/x-ray as she remains unhappy with the 'asthma' diagnosis. The GP then fails to report the findings to her. Eventually she does obtain the results which show 'secondary lung cancer'. She passed away some time afterwards.
The GMC (General Medical Council) asked the GP to 'amend and improve practices'....
Young lady, 22 yrs old, presented to her GP with a lump in the breast that she was unsure about. GP examined her, said it was nothing to worry about, that it was probably because she was taking the contraceptive pill and she was too young for it to be anything serious.
Six months later she returns to the GP who decides she doesn't even need to be examined because she was previously examined 6 months earlier - sent away with reassurances of 'nothing serious' once again - despite knowing of a history of breast cancer in her family.
This time, her mother insisted she get checked out and she attended elsewhere - outcome was breast cancer, a tumour on her spine and further spread to the liver....
This programme examined how doctor's that are failing patients have very little to worry about. We are taught in life that our actions have consequences but in the case of GP's that fail patients it appears there can sometimes be virtually no consequences.
A three year old child died after the doctor on call did not attend to him adequately - the coroner reported 'failure to provide basic medical attention was total and complete. There was a clear causal connection between this gross failure and Joseph's death'...
So, you'd expect he would be struck off the medical register? Unable to practice again after such a damning report from the coroner? ....Well, you'd be wrong - because the coroner failed to inform the GMC and the local Primary Care Trust (PCT) also failed to inform the GMC so his consequences were? ...None.......
However, it's worth mentioning that around 800,000 people visit their GP's daily and by far the vast majority of patients ARE happy and DO get good care. But, if you find yourself thinking 'I'm not sure' after a visit then take responsibility and ask to be referred somewhere where you will leave thinking 'I'm now sure'......
Worth watching if you missed it - available here....... but I think you do have to be UK based to view
http://www.channel4.com/programmes/dispatches/4od
I found this programme interesting because it goes back to what I've talked about on previous occasions - taking responsibility for your own health, not just sitting and nodding if the Doctor appears not to be on-board or dismissive, not leaving the surgery with a prescription for painkillers instead of a referral for assistance...however in some cases on this programme people were left with no help at all.
'Anthony' went undercover to film one particular GP. This GP had been investigated in the past (2006) for failing to spot cancer...
'Anthony' presented with typical symptoms of bowel cancer, rectal bleeding, abdominal cramps, very bad constipation - he left the surgery with a prescription for laxatives and instructions from the GP to 'eat mangoes'...One month later Anthony goes back and informs the GP that the symptoms have not gone away - he then leaves with a prescription for stronger laxatives and instructions from the GP to 'eat green pears'....Two other doctor's that 'Anthony' presented to (different surgeries) immediately referred him for tests on his first visit to them.
GP's are informed of the 'typical' symptoms to watch out for with regard to colorectal cancers, it seems ridiculous that some are still not aware of the signs.
Another lady went to her GP 14 times after suffering severe breathlessness...she was diagnosed with 'asthma'. Sounds acceptable until you hear that this lady had no previous breathing issues and had breast cancer a few years prior to the breathing issues developing.
Fast forward 9 months and this lady then demands a scan/x-ray as she remains unhappy with the 'asthma' diagnosis. The GP then fails to report the findings to her. Eventually she does obtain the results which show 'secondary lung cancer'. She passed away some time afterwards.
The GMC (General Medical Council) asked the GP to 'amend and improve practices'....
Young lady, 22 yrs old, presented to her GP with a lump in the breast that she was unsure about. GP examined her, said it was nothing to worry about, that it was probably because she was taking the contraceptive pill and she was too young for it to be anything serious.
Six months later she returns to the GP who decides she doesn't even need to be examined because she was previously examined 6 months earlier - sent away with reassurances of 'nothing serious' once again - despite knowing of a history of breast cancer in her family.
This time, her mother insisted she get checked out and she attended elsewhere - outcome was breast cancer, a tumour on her spine and further spread to the liver....
This programme examined how doctor's that are failing patients have very little to worry about. We are taught in life that our actions have consequences but in the case of GP's that fail patients it appears there can sometimes be virtually no consequences.
A three year old child died after the doctor on call did not attend to him adequately - the coroner reported 'failure to provide basic medical attention was total and complete. There was a clear causal connection between this gross failure and Joseph's death'...
So, you'd expect he would be struck off the medical register? Unable to practice again after such a damning report from the coroner? ....Well, you'd be wrong - because the coroner failed to inform the GMC and the local Primary Care Trust (PCT) also failed to inform the GMC so his consequences were? ...None.......
However, it's worth mentioning that around 800,000 people visit their GP's daily and by far the vast majority of patients ARE happy and DO get good care. But, if you find yourself thinking 'I'm not sure' after a visit then take responsibility and ask to be referred somewhere where you will leave thinking 'I'm now sure'......
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