Thanks to all those who've messaged me, either via the blog or Facebook or email or text to ask how things are going. I know I've needed to do an update for a while now but haven't been in the right frame of mind - or had enough relief from the pain, to do so.
Tonight I've set myself the task of bringing you all up to date.
Last Monday I met with my Oncologist, Dr L - who is the same Oncologist I had last year for my pre-op chemoradiation. I like him and trust him totally and feel confident with any decisions he makes on my behalf.
He told me he feels really genuinely sorry to be seeing me again and really hoped that the last time he saw me, back in January 2011, would have really been the last time he needed to.
We discussed the spinal mets and he said he's quite taken aback by this development and it was completely unexpected. Told him I agreed completely, it wasn't what I was expecting either!
The current plan is that he has arranged for new CT scans to take place (this Wednesday) on my spine, thoraxic area and also my left hip to check to see what's currently going on. After he's viewed these I'll be meeting with him again in early January to 'discuss developments'. I told him I'm still quite chemo resistant and he's fine with that - but we'll make final decisions in January once we both know exactly what's happening for sure.
He told me that in his opinion chemo could potentially possibly provide me with some extra 'weeks' but it would come at a price. This is all based on my severe reaction back in June 2010...so we're back to that decision about quality vs quantity and I've made it clear that quality is my goal. Extra time being slowly poisoned is still not really negotiable for me at the moment - BUT it will depend on what he says in January when we meet.
We had an open and honest chat and he leaned forward, looked me in the eye and said 'I'm really sorry that I can't fix you Carole, I just can't stop the cancer'..I told him I do know that this is the case and my only real interest is to sort out the pain and see what options are on the table that probably don't involve chemo.
Today I had a follow up appointment for palliative care and pain management. The lovely Dr P has emailed a couple of her colleagues on my behalf and asked about a spinal operation that involves placing a 'cement' type product into the spine to try to mend some of the damage. They will review my bone scans and see what they think. I'll let you know what their opinion is about this once they've got back to me/Dr P.
I discussed today with Dr P what my life expectancy could be now - she said it's so difficult with cancer because things can change literally overnight - however at this stage of things she'd suggest I have "long months and short years". She then said to be blunt in the region of between 9-18 months would be a good estimate at this stage.
I want to be around for Dj's 13th birthday, if possible, so that gives me hope that that might be achievable (if things don't change overnight) :)
The pain has been a pain....not much more to say about that. Still tweaking the med's around to see if we can find a balance that works for me. Next appointment in mid January.
I'm meeting with Dr L, Oncologist again on 3rd January - then have a colorectal appointment on 4th January.
For now, everything is going on the back burner because it's almost Christmas and I intend to have a lovely time with my family - enjoy the festivities and make any decisions after the holidays.
Many people are in my thoughts at this time of year - especially my special friends Rose and David, whose families will be spending their first Christmas without them.
Also special thoughts going out to my lovely friend Kev over in Western Australia who will be facing his first Christmas without his wonderful wife, Joan.
Catch up soon xXx
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..
Tuesday, 20 December 2011
Saturday, 3 December 2011
A frustrating week all round........
I'm now two weeks on from the end of my palliative Radiotherapy. I think you'll remember that I told you that the best case scenario would be that 7-10 days on I'd be 'pain free' .....well, 14 days on I'm on middle ground.
The pain 'has' diminished slightly (and I do mean 'slightly').. at times but I still can't function without pain relief every 6 hrs. Yesterday was probably one of the best days so far and I felt quite optimistic that the Radio had kicked in, done it's job and killed the bastard tumour off to a point where it was no longer going to give me constant, persistent pain - but today I've been back on normal dose pain killers once again. Bollocks!
Over the past 10 days I've also developed a pain in my left hip that feels very very similar to the pain in my spine - double bollocks!
But being realistic, I guess I just have to be happy that I can cope with the pain and it might still reduce a little over the next week or so - hopefully.
Apart from that, lots has happened.
Had a follow up with palliative care for pain relief tweaking. Next appointment mid December to see how I'm getting on with that.
Also had a follow up appointment with the BC team on Wednesday. Felt really optimistic about this as they have been so so helpful to me since my nice colorectal nurse, L, referred me to them for support with the spinal mets. Sarah came with me for the appointment and I was so glad that she did because this time things really didn't go to plan.
Saw a different Doctor who was like an ice-maiden, cold, frosty and repetitive. She started our conversation by asking if I'd completed my Radiotherapy then said 'I don't know why you're here.....you don't have breast cancer'!
I was a little knocked off balance by this (because I KNOW I don't have breast cancer and so did the BC team) so replied that yes she was correct, however because of the spinal mets, my colorectal nurses had asked Mr R to look into my case and he'd said he wanted to take over my care for the mets - despite me not having BC.
She sat there stony faced and said 'Yes, but you don't have breast cancer and I don't know why you're here...why are you here today?'....
Told her she's the Doctor and she should know why they'd asked me to come back today...and then I started to cry because I could see that this was the time I was going to be told to clear off.
She then told me she'd met with Mr R that morning and he'd said he didn't want to see me in his department again.
More stuff was said - mainly by Sarah as I couldn't get my head together enough at this point to have a rational conversation and then we left, me still crying and Sarah furious (although she stayed completely polite and calm in the face of Ice-Maiden).
So, dismissed from the Breast care team and once again wondering where do I go from here. That was my Wednesday morning.
Then in the afternoon developed a really bad stomach upset which has lasted until today. Just about sorted it out now by eating only light meals and sticking to simple things like toast for a few days.
Thursday I received a letter from the Oncology dept at G hospital offering me an appointment BUT I'd said during the meeting with Ice-Maiden that I didn't want to go to 'that' hospital, I'd clearly said I wanted to go back to my original Oncology team at StT as I knew them, knew the way the dept worked and had got to know the staff there. She agreed at the time - then referred me to the one I'd specifically said I didn't want to go to. Cried some more - out of frustration really (and the cramps from the upset stomach didn't exactly help).
I'd also recently cancelled my out patients appointment on Mon, 28th Nov with the colorectal team because I'm having a staging CT scan on 19th Dec and it didn't make sense to meet with them before this took place. So I contacted the appointments dept and asked for a new appointment to take place after the scan on the 19th Dec....received that through the post on Friday - new date 28th MAY 2012! FFS......cried some more, again out of frustration more than anything.
Sat there thinking, been dismissed from one team, the other doesn't want to see me for 6 months, can't go where I want for Oncology, still got spinal pain, now developed hip pain and just felt that no-one gave a shit about me anymore :(
Then Friday afternoon received a telephone call from the lovely nurse at Beating Bowel Cancer (an amazing charity organisation). Spoke to the lovely Nurse L, who listened to all my moans and groans and gave me some really constructive advice and got me back on track with my next steps.
**see my note at the bottom of the page for other info about Beating Bowel Cancer............
Then later on Friday afternoon I got a telephone call from my nice colorectal nurse, L, who said she was a bit confused about a few things. She had thought that I had asked NOT to be seen any more by my original colorectal team as I was unhappy with my care. I informed her that was not the case at all, what I had said was that I was happy to stay with the BC team for the spinal mets as they have more experience in this particular area but I had not said I wanted to go elsewhere when dealing with the original colorectal issues, such as the ongoing lung questions etc.
We had a frank chat and I explained how frustrated I was feeling with everything that was going on around me at the moment. I did clarify that I wasn't unhappy with the care that she (L) and her colleague S (both colorectal nurses) had given me BUT I felt that the delay in referring me for a bone scan was wrong and that I'd felt at the time (back in June) that the surgeon should have taken me more seriously when I asked about the bone pain and told him I felt it could have been cancer related. I said I felt I should have been referred for a bone scan at that point, not sent away to see my GP about this.
She assured me that both she and S are on-board with me, willing to do the whole journey with me and will do whatever they both can to simplify things as much as possible.
She is now going to try to reorganise my Oncology appointment, get me seen again in the BC team (by a NICE doctor - not the Ice-Maiden) and also rearrange my 28th May appt to take place shortly after my latest scan in December. So all in all a constructive chat.
It's been a crap week to be honest - but I'm okay again now :)
** As mentioned above, I've recently had some great support from the lovely nurses at Beating Bowel Cancer. They are a charity organisation who assist anyone diagnosed with bowel/colon/rectal cancer including relatives etc..
My friend Alison's husband, Bob, is currently fundraising for this great charity. He's asking for sponsorship to grow his beard and all cash donated goes straight into the 'Beating Bowel Cancer' pot.
Personally I can't praise them enough - they are the most helpful, understanding and supportive group of people ever.
So, if you'd like to sponsor Bob to turn into a hairy man just in time for Christmas the link to his page is here....
http://www.justgiving.com/BobSelfeDecembeard
Much luv and catch up soon xxXxx
The pain 'has' diminished slightly (and I do mean 'slightly').. at times but I still can't function without pain relief every 6 hrs. Yesterday was probably one of the best days so far and I felt quite optimistic that the Radio had kicked in, done it's job and killed the bastard tumour off to a point where it was no longer going to give me constant, persistent pain - but today I've been back on normal dose pain killers once again. Bollocks!
Over the past 10 days I've also developed a pain in my left hip that feels very very similar to the pain in my spine - double bollocks!
But being realistic, I guess I just have to be happy that I can cope with the pain and it might still reduce a little over the next week or so - hopefully.
Apart from that, lots has happened.
Had a follow up with palliative care for pain relief tweaking. Next appointment mid December to see how I'm getting on with that.
Also had a follow up appointment with the BC team on Wednesday. Felt really optimistic about this as they have been so so helpful to me since my nice colorectal nurse, L, referred me to them for support with the spinal mets. Sarah came with me for the appointment and I was so glad that she did because this time things really didn't go to plan.
Saw a different Doctor who was like an ice-maiden, cold, frosty and repetitive. She started our conversation by asking if I'd completed my Radiotherapy then said 'I don't know why you're here.....you don't have breast cancer'!
I was a little knocked off balance by this (because I KNOW I don't have breast cancer and so did the BC team) so replied that yes she was correct, however because of the spinal mets, my colorectal nurses had asked Mr R to look into my case and he'd said he wanted to take over my care for the mets - despite me not having BC.
She sat there stony faced and said 'Yes, but you don't have breast cancer and I don't know why you're here...why are you here today?'....
Told her she's the Doctor and she should know why they'd asked me to come back today...and then I started to cry because I could see that this was the time I was going to be told to clear off.
She then told me she'd met with Mr R that morning and he'd said he didn't want to see me in his department again.
More stuff was said - mainly by Sarah as I couldn't get my head together enough at this point to have a rational conversation and then we left, me still crying and Sarah furious (although she stayed completely polite and calm in the face of Ice-Maiden).
So, dismissed from the Breast care team and once again wondering where do I go from here. That was my Wednesday morning.
Then in the afternoon developed a really bad stomach upset which has lasted until today. Just about sorted it out now by eating only light meals and sticking to simple things like toast for a few days.
Thursday I received a letter from the Oncology dept at G hospital offering me an appointment BUT I'd said during the meeting with Ice-Maiden that I didn't want to go to 'that' hospital, I'd clearly said I wanted to go back to my original Oncology team at StT as I knew them, knew the way the dept worked and had got to know the staff there. She agreed at the time - then referred me to the one I'd specifically said I didn't want to go to. Cried some more - out of frustration really (and the cramps from the upset stomach didn't exactly help).
I'd also recently cancelled my out patients appointment on Mon, 28th Nov with the colorectal team because I'm having a staging CT scan on 19th Dec and it didn't make sense to meet with them before this took place. So I contacted the appointments dept and asked for a new appointment to take place after the scan on the 19th Dec....received that through the post on Friday - new date 28th MAY 2012! FFS......cried some more, again out of frustration more than anything.
Sat there thinking, been dismissed from one team, the other doesn't want to see me for 6 months, can't go where I want for Oncology, still got spinal pain, now developed hip pain and just felt that no-one gave a shit about me anymore :(
Then Friday afternoon received a telephone call from the lovely nurse at Beating Bowel Cancer (an amazing charity organisation). Spoke to the lovely Nurse L, who listened to all my moans and groans and gave me some really constructive advice and got me back on track with my next steps.
**see my note at the bottom of the page for other info about Beating Bowel Cancer............
Then later on Friday afternoon I got a telephone call from my nice colorectal nurse, L, who said she was a bit confused about a few things. She had thought that I had asked NOT to be seen any more by my original colorectal team as I was unhappy with my care. I informed her that was not the case at all, what I had said was that I was happy to stay with the BC team for the spinal mets as they have more experience in this particular area but I had not said I wanted to go elsewhere when dealing with the original colorectal issues, such as the ongoing lung questions etc.
We had a frank chat and I explained how frustrated I was feeling with everything that was going on around me at the moment. I did clarify that I wasn't unhappy with the care that she (L) and her colleague S (both colorectal nurses) had given me BUT I felt that the delay in referring me for a bone scan was wrong and that I'd felt at the time (back in June) that the surgeon should have taken me more seriously when I asked about the bone pain and told him I felt it could have been cancer related. I said I felt I should have been referred for a bone scan at that point, not sent away to see my GP about this.
She assured me that both she and S are on-board with me, willing to do the whole journey with me and will do whatever they both can to simplify things as much as possible.
She is now going to try to reorganise my Oncology appointment, get me seen again in the BC team (by a NICE doctor - not the Ice-Maiden) and also rearrange my 28th May appt to take place shortly after my latest scan in December. So all in all a constructive chat.
It's been a crap week to be honest - but I'm okay again now :)
** As mentioned above, I've recently had some great support from the lovely nurses at Beating Bowel Cancer. They are a charity organisation who assist anyone diagnosed with bowel/colon/rectal cancer including relatives etc..
My friend Alison's husband, Bob, is currently fundraising for this great charity. He's asking for sponsorship to grow his beard and all cash donated goes straight into the 'Beating Bowel Cancer' pot.
Personally I can't praise them enough - they are the most helpful, understanding and supportive group of people ever.
So, if you'd like to sponsor Bob to turn into a hairy man just in time for Christmas the link to his page is here....
http://www.justgiving.com/BobSelfeDecembeard
Much luv and catch up soon xxXxx
Thursday, 24 November 2011
Trinity Hospice
Some of you may remember that Trinity Hospice recently asked for votes so that they could be considered for the NatWest funding initiative. Winners would receive just over £6,000.
This post is to thank those that took the time to vote and give you the updated news that Trinity DID win and have been granted the additional funding of £6,275 towards their community nurses. The community nurses help people in the local community cope with terminal illness - either in their own homes or if this becomes too difficult in the Hospice itself.
It is a service that at some point in the future I will be depending upon, so by helping them you're helping me - in the long term :)
I am so grateful to those who took the time to vote and also to those who have and who continue to support this cause via the Just Giving link to the left of this blog.
Remember one less pack of cards or one less roll of wrapping paper = a small donation to the Hospice
Many thanks again xxXxx
This post is to thank those that took the time to vote and give you the updated news that Trinity DID win and have been granted the additional funding of £6,275 towards their community nurses. The community nurses help people in the local community cope with terminal illness - either in their own homes or if this becomes too difficult in the Hospice itself.
It is a service that at some point in the future I will be depending upon, so by helping them you're helping me - in the long term :)
I am so grateful to those who took the time to vote and also to those who have and who continue to support this cause via the Just Giving link to the left of this blog.
Remember one less pack of cards or one less roll of wrapping paper = a small donation to the Hospice
Many thanks again xxXxx
Sunday, 20 November 2011
Radiotherapy done .........
All last week, Monday to Friday I had Radiotherapy daily. I have been warned that the side effects will probably increase for the next 7-10 days then hopefully ease off and take the pain along with it. The best case scenario will be no pain after this - middle ground will be some pain remains but is manageable with pain relief - worst scenario is that it does nothing to ease things.
Hopefully in about 10 days I'll be back here saying 'Wow! out of pain and feeling good' :)
Other news:
Went back to work on Tuesday last week and also managed to get in on Wednesday for a couple of hours. Sitting upright is bloody painful for long periods but I managed to get back for a few hours at least.
Planning on also getting into work this week - pain permitting.
Sarah, my little sister, is coming over on Saturday and I'm really looking forward to seeing her. I've not seen her since March when I was over there. I'm not sure how long she's staying over here at the moment but however long it is I'm really looking forward to spending some time with her and catching up properly.
Have now had a chat with Dj about the latest developments. He handled it really well, didn't cry just said he hates f*&$ing cancer and no, I didn't tell him off for swearing either! Bad mother eh :)
I told him because he asked about the amount of hospital appointments I've had recently and because he was already aware of the intense pain I was in every day recently. He knew I'd been off work again for the past two weeks and asked me at the end of last week what they were doing at the hospital about my back.
I told him that I was going to have 5 sessions of Radiotherapy to see if it could ease the pain....he seemed to just accept that and said he hoped it would help.
Around 5 minutes later he came back and said 'If you're having Radiotherapy does that mean the cancer is now in your back?'.....I told him that Yes, it was now in my spine and it was this that is causing the pain...He said again that he hoped it would help, then he stared me straight in the eyes and said 'This means you're terminal now then'........
I said what it means is that they can't cure the cancer now, but there are things they want to try - such as Radiotherapy and a drug that will help repair the bone damage...
He then said that if I was 'terminal' then that meant I'd die.......
I told him that Yes, it does mean that, eventually - eventually this cancer will 'get' me and yes, I will die BUT not today, I told him I'm not going to go to bed tonight to die (well, at least that's not the plan so far) but that eventually, in the future, they would have to say there wasn't anything left to try and THEN we can worry about terminal. He asked me to promise that when they say this I tell him and don't pretend things are okay...I agreed. He didn't cry but I could see that he was struggling not to :(
This was when he said he hated f*&$ing cancer and I didn't reprimand him for it. Like I said, bad mother but I'm the best he's got :)
Since then things have been normal here - he's still spending too long on his Xbox or PC and less time on homework than we'd like, but he's happy and showing no signs of being overly stressed at the moment. So, all is good here.
Rab's been brilliant - he's doing the vast majority of housework, working full time, shopping and never complaining about how much he now has to do. I do what I can, when I can but I've been accepting my limits at the moment.
The thought of spinal breakage really stresses me - I'm aware that I now run the risk of snapping something and don't even want to think about where that leaves me - so, I'm accepting that I can do less and Rab will do what needs doing.
Many times in the past I've read about partners who leave because they can't deal with the stress, the continuing illness, or the extra demands on them - many times I've thought how utterly selfish these people are and rarely do I remember how lucky I am - so today, it's about remembering how lucky I am to have Rab who tries to make things easier (and gets the brunt of my bad moods as thanks!)
I hope one day he reads my blog and realises how much I did appreciate him :)
Catch up soon xx
Hopefully in about 10 days I'll be back here saying 'Wow! out of pain and feeling good' :)
Other news:
Went back to work on Tuesday last week and also managed to get in on Wednesday for a couple of hours. Sitting upright is bloody painful for long periods but I managed to get back for a few hours at least.
Planning on also getting into work this week - pain permitting.
Sarah, my little sister, is coming over on Saturday and I'm really looking forward to seeing her. I've not seen her since March when I was over there. I'm not sure how long she's staying over here at the moment but however long it is I'm really looking forward to spending some time with her and catching up properly.
Have now had a chat with Dj about the latest developments. He handled it really well, didn't cry just said he hates f*&$ing cancer and no, I didn't tell him off for swearing either! Bad mother eh :)
I told him because he asked about the amount of hospital appointments I've had recently and because he was already aware of the intense pain I was in every day recently. He knew I'd been off work again for the past two weeks and asked me at the end of last week what they were doing at the hospital about my back.
I told him that I was going to have 5 sessions of Radiotherapy to see if it could ease the pain....he seemed to just accept that and said he hoped it would help.
Around 5 minutes later he came back and said 'If you're having Radiotherapy does that mean the cancer is now in your back?'.....I told him that Yes, it was now in my spine and it was this that is causing the pain...He said again that he hoped it would help, then he stared me straight in the eyes and said 'This means you're terminal now then'........
I said what it means is that they can't cure the cancer now, but there are things they want to try - such as Radiotherapy and a drug that will help repair the bone damage...
He then said that if I was 'terminal' then that meant I'd die.......
I told him that Yes, it does mean that, eventually - eventually this cancer will 'get' me and yes, I will die BUT not today, I told him I'm not going to go to bed tonight to die (well, at least that's not the plan so far) but that eventually, in the future, they would have to say there wasn't anything left to try and THEN we can worry about terminal. He asked me to promise that when they say this I tell him and don't pretend things are okay...I agreed. He didn't cry but I could see that he was struggling not to :(
This was when he said he hated f*&$ing cancer and I didn't reprimand him for it. Like I said, bad mother but I'm the best he's got :)
Since then things have been normal here - he's still spending too long on his Xbox or PC and less time on homework than we'd like, but he's happy and showing no signs of being overly stressed at the moment. So, all is good here.
Rab's been brilliant - he's doing the vast majority of housework, working full time, shopping and never complaining about how much he now has to do. I do what I can, when I can but I've been accepting my limits at the moment.
The thought of spinal breakage really stresses me - I'm aware that I now run the risk of snapping something and don't even want to think about where that leaves me - so, I'm accepting that I can do less and Rab will do what needs doing.
Many times in the past I've read about partners who leave because they can't deal with the stress, the continuing illness, or the extra demands on them - many times I've thought how utterly selfish these people are and rarely do I remember how lucky I am - so today, it's about remembering how lucky I am to have Rab who tries to make things easier (and gets the brunt of my bad moods as thanks!)
I hope one day he reads my blog and realises how much I did appreciate him :)
Catch up soon xx
Sunday, 13 November 2011
Next Steps on the long winding road.........
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...........
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...........
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
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