Mum just dropped a bombshell "found a lump"
04 March 2010, 12:31 PM
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Oooooooooooook this is how it goes.
Finally got her to the hospital, parked as close to the dept as possible for her, only to find they have moved it lol. Sister helped her there while I got parked properly and not pay extortionate rates for parking.
Lovely new department, in the new wing, so no more dark broom closet anymore.
Running a bit behind, but got seen within an hour of the original appointment time. Me and my sister waited while she saw the doctor, then when she came out, I popped in. I was welcomed by the doctor and specialist nurse who sat me down and filled me in on the whole matter. Mum had apparently said no to me sitting in previously.
Suprisingly on the journey home she was 100% straight about almost everything said, which was pleasent.
So, the prognosis, outcome, road ahead.
The right side has become very large now, and radiotherapy is not considered a viable option. Chemo "may" have a partial effect, but the preferred treatment is now surgery only. HOWEVER, her COPD is in the way of that, with her breathing being considered borderline too bad for general anaesthetic, so she has to have a complete medical inc scans, xrays etc to see if she is fit enough to even be considered for surgery... not that she has accepted having surgery, but they are thinking ahead.
Unfortunatly, due to the size of the lump now, it would be a more intrusive surgery, with the breast being removed, and her requiring a skin graft to cover it up and help it heal. Given that she was against a simple lump being taken out, I cant see her going for this at all. Myself, the doctor and the nurse are all in agreement that she has made a very rational decision to let the cancer take its course, and to see it to the end with no further treatment. So I am grateful to the doctor for continuing to pursue the surgery route even though its an outside chance.
The COPD is what is causing all her main symptoms at the moment, for which she needs to go back to the GP, so I am in the middle of trying to get that sorted out for her too. Once again, unfortunatly she is unlikely to take on board much of what they say or give her, so the condition will get worse. Amazingly with full blown cancer, its the COPD making life awkward for her now. So hopefully we can get some help for her there, and make life a little better for her, a little mobility and freedom. But the harsh reality is, she is going to need to be watched much closer again now, with the risk of her passing out again.
So the road I forsee is as follows.
Refusal of any other treatments, and letting the cancer take its course.
Supervision from the hospital, and pain meds given to make things comfortable.
Reluctance to get anything done about the COPD
Breathing getting worse and worse.
Hopefully she is "friends" with the doctor again now, and will continue to go there and get help from them, inc pain relief.
Next appointment has been set for within a couple of weeks time, to go to Guys to see the specialist there. Updates to follow.
Finally got her to the hospital, parked as close to the dept as possible for her, only to find they have moved it lol. Sister helped her there while I got parked properly and not pay extortionate rates for parking.
Lovely new department, in the new wing, so no more dark broom closet anymore.
Running a bit behind, but got seen within an hour of the original appointment time. Me and my sister waited while she saw the doctor, then when she came out, I popped in. I was welcomed by the doctor and specialist nurse who sat me down and filled me in on the whole matter. Mum had apparently said no to me sitting in previously.
Suprisingly on the journey home she was 100% straight about almost everything said, which was pleasent.
So, the prognosis, outcome, road ahead.
The right side has become very large now, and radiotherapy is not considered a viable option. Chemo "may" have a partial effect, but the preferred treatment is now surgery only. HOWEVER, her COPD is in the way of that, with her breathing being considered borderline too bad for general anaesthetic, so she has to have a complete medical inc scans, xrays etc to see if she is fit enough to even be considered for surgery... not that she has accepted having surgery, but they are thinking ahead.
Unfortunatly, due to the size of the lump now, it would be a more intrusive surgery, with the breast being removed, and her requiring a skin graft to cover it up and help it heal. Given that she was against a simple lump being taken out, I cant see her going for this at all. Myself, the doctor and the nurse are all in agreement that she has made a very rational decision to let the cancer take its course, and to see it to the end with no further treatment. So I am grateful to the doctor for continuing to pursue the surgery route even though its an outside chance.
The COPD is what is causing all her main symptoms at the moment, for which she needs to go back to the GP, so I am in the middle of trying to get that sorted out for her too. Once again, unfortunatly she is unlikely to take on board much of what they say or give her, so the condition will get worse. Amazingly with full blown cancer, its the COPD making life awkward for her now. So hopefully we can get some help for her there, and make life a little better for her, a little mobility and freedom. But the harsh reality is, she is going to need to be watched much closer again now, with the risk of her passing out again.
So the road I forsee is as follows.
Refusal of any other treatments, and letting the cancer take its course.
Supervision from the hospital, and pain meds given to make things comfortable.
Reluctance to get anything done about the COPD
Breathing getting worse and worse.
Hopefully she is "friends" with the doctor again now, and will continue to go there and get help from them, inc pain relief.
Next appointment has been set for within a couple of weeks time, to go to Guys to see the specialist there. Updates to follow.
05 March 2010, 06:29 PM
#304
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You are all having a tough time, and I am sure you are well prepared for the road ahead. My my had COPD as a result of pnemonia, but she is a lot younger, but I can see how (Cancer aside) that in itself is a great struggle The only thing that keeps my mum on track is her daily visits to the gym and other specialist appointments.
Unfortunatly my friend saw the cancer right through until the end, and it was hard, but it was her choice and everyone supported her.
I also lost my grandmother to ovarian cancer several years ago, it's hard for everyone involved, but you will be surprised at how strong you can and will be.
Just remember that there are a great bunch of people on here who will help you out and listen, even if you just want to let off steam or have a rant. Sometimes a problem shared is a problem halved.
Unfortunatly my friend saw the cancer right through until the end, and it was hard, but it was her choice and everyone supported her.
I also lost my grandmother to ovarian cancer several years ago, it's hard for everyone involved, but you will be surprised at how strong you can and will be.
Just remember that there are a great bunch of people on here who will help you out and listen, even if you just want to let off steam or have a rant. Sometimes a problem shared is a problem halved.
05 March 2010, 09:08 PM
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Cheers guys.
Les, mum has to pass a POP medical (I think thats what they called it) to check her fitness for anaesthetic, which the cancer specialist said he thinks will be a struggle quite frankly. He did say that the medical will help show up any spreading and any underlying causes for the breathing issues though, so worth doing.
Hysteria, yeah the COPD is like a constant bad asthma attack. Having asthma I can understand the panic and frustration/distress its causing her, but cant imagine being like that every minute of the day. She does not help things by refusing things like nebuliza's and other meds, as well as continuing to smoke. The reality is mum just going as she is at the moment, and a slow(ish) decline, which is very say indeed. I really never wanted to see he get to the stage where she can do nothing and will be on oxygen constantly.
The only thing I have left on my side now is her reluctance to be in hospital. So staying in better shape will give her the "freedom" she wants. For a while anyway.
The main concern now is the tumour bursting/weeping/leaking. It was doing this before, when she was first diagnosed. Before she even admitted having it, it was bleeding. The doctor expects it to happen again this time around, but due to its growth the rupture will be more serious, and the real pain and problems will begin. Unfortunatly, as she is on warfarin for her blood clotting, a bleed is quite dangerous, especially if her count has risen. So its something to watch out for closely.
Thank you to everyone for their kind words. Just blurting all these thoughts and facts out and knowing someone is reading is a great relief. I have gone back to blogging too as a release.
Thank you
Les, mum has to pass a POP medical (I think thats what they called it) to check her fitness for anaesthetic, which the cancer specialist said he thinks will be a struggle quite frankly. He did say that the medical will help show up any spreading and any underlying causes for the breathing issues though, so worth doing.
Hysteria, yeah the COPD is like a constant bad asthma attack. Having asthma I can understand the panic and frustration/distress its causing her, but cant imagine being like that every minute of the day. She does not help things by refusing things like nebuliza's and other meds, as well as continuing to smoke. The reality is mum just going as she is at the moment, and a slow(ish) decline, which is very say indeed. I really never wanted to see he get to the stage where she can do nothing and will be on oxygen constantly.
The only thing I have left on my side now is her reluctance to be in hospital. So staying in better shape will give her the "freedom" she wants. For a while anyway.
The main concern now is the tumour bursting/weeping/leaking. It was doing this before, when she was first diagnosed. Before she even admitted having it, it was bleeding. The doctor expects it to happen again this time around, but due to its growth the rupture will be more serious, and the real pain and problems will begin. Unfortunatly, as she is on warfarin for her blood clotting, a bleed is quite dangerous, especially if her count has risen. So its something to watch out for closely.
Thank you to everyone for their kind words. Just blurting all these thoughts and facts out and knowing someone is reading is a great relief. I have gone back to blogging too as a release.
Thank you
06 March 2010, 08:00 AM
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snazy, I know exactly how you feel and it's not easy at all. You should be proud of yourself for knowing that you'll be accepting your mum's decision (however hard and painful it is for you) and just being there to support her and do what you can.
Please feel free to PM me if you ever want someone to chat to. My dad had carcinoid syndrome-a very rare form of cancer which he admirably fought for 4 and a half years. He developed Diabetes because of the cancer which really complicated things. It's tough but you will get through it and your mum will be happier once her decision has been made as to what she will do.
Chin up mate!
Please feel free to PM me if you ever want someone to chat to. My dad had carcinoid syndrome-a very rare form of cancer which he admirably fought for 4 and a half years. He developed Diabetes because of the cancer which really complicated things. It's tough but you will get through it and your mum will be happier once her decision has been made as to what she will do.
Chin up mate!
06 March 2010, 12:00 PM
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Cheers Ritchie, hows the pooch by the way? Still nervous or getting better now?
Im quietly proud, but nothing much has really happened yet, the hard parts are yet to come, and who knows I could fall apart at the next hurdle (hoping not to though)
You are right, support is all I really can do, in her choices and in life in general. Just annoying there are so many things I want her to be able to do, and it cant happen.
Sounds like you really went through it with your dad. My friend has a terrible time with both his parents and their medical issues. His dad has been fighting everything life threw at him for over 20 years now, still going but down to 6 stone, poor sod. Makes me realise its not SO bad what I have to try and deal with.
Head high, eyes skywards .. thats me
Im quietly proud, but nothing much has really happened yet, the hard parts are yet to come, and who knows I could fall apart at the next hurdle (hoping not to though)
You are right, support is all I really can do, in her choices and in life in general. Just annoying there are so many things I want her to be able to do, and it cant happen.
Sounds like you really went through it with your dad. My friend has a terrible time with both his parents and their medical issues. His dad has been fighting everything life threw at him for over 20 years now, still going but down to 6 stone, poor sod. Makes me realise its not SO bad what I have to try and deal with.
Head high, eyes skywards .. thats me
snazy, I know exactly how you feel and it's not easy at all. You should be proud of yourself for knowing that you'll be accepting your mum's decision (however hard and painful it is for you) and just being there to support her and do what you can.
Please feel free to PM me if you ever want someone to chat to. My dad had carcinoid syndrome-a very rare form of cancer which he admirably fought for 4 and a half years. He developed Diabetes because of the cancer which really complicated things. It's tough but you will get through it and your mum will be happier once her decision has been made as to what she will do.
Chin up mate!
Please feel free to PM me if you ever want someone to chat to. My dad had carcinoid syndrome-a very rare form of cancer which he admirably fought for 4 and a half years. He developed Diabetes because of the cancer which really complicated things. It's tough but you will get through it and your mum will be happier once her decision has been made as to what she will do.
Chin up mate!
07 March 2010, 12:36 AM
#312
Good luck to you and your Mam Snazy.
I don't really know what else to say tbh. Not like me.
Keep talking as much as you want, sometimes just venting helps. It doesn't make all this go away, but it provides at least some release.
Ultimately it's up to your Mam how she wishes to proceed, and all you can really do is support her, and hopefully your sister will take some of that on board too.
Take care, and know we are here for you, even just as a shoulder/ear.
I don't really know what else to say tbh. Not like me.
Keep talking as much as you want, sometimes just venting helps. It doesn't make all this go away, but it provides at least some release.
Ultimately it's up to your Mam how she wishes to proceed, and all you can really do is support her, and hopefully your sister will take some of that on board too.
Take care, and know we are here for you, even just as a shoulder/ear.
17 March 2010, 05:26 PM
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Crikey, time for an update I guess.
After feeling more and more tired over the past week or so, at the end of last week mum felt really poorly, and the decision was made to call NHS Direct. After a chat with them the guy recommended she see the GP asap. I placed a call to the GP and made the appointment for the afternoon.
4pm appointment, so I decided to leave work for 3pm to get to her in time to get her there. And also asked my sister to be there earlier to help mum get ready.
On my way home I got a text from my sister saying mum said she was not going as she was too ill. So on getting home I questioned her on what she wanted to do, go hospital etc.
About 2 mins after getting home, mum was sitting at the window in a chair when she suddenly went blank and started fitting. I grabbed my phone, and got my sister and her boyfriend to help her to the floor and get her in recovery.
4 paramedics and 20 mins later and she was coming around and stablising and on her way to hospital in the ambulance.
On my arrival there 30 mins later I was ushered into the family room and told to wait for the doctor, as mum was in the resuscitation room. Naturally it got me a little worried, waiting for the somber faced doctor to come and sit with me.
Thankfully this was not the case.
About another 20 mins passed and the doctor came to see me. He explained what their main concerned were, and that she had had a massive internal bleed, losing approx 4 units of blood in the process, so her HB and BP were right down, causing all the symptoms.
That night she went up onto the ward, and they started a transfusion. For the next couple of days she had transfusions, as well as an endoscopic investigation, which found no bleeding in the throat/stomach areas.
By Monday they were still no clearer on where the bleed was, but decided to discharge her pending a colonoscopy (date tba)
Then we get to today. She had an appointment with Oncology at Guys. Plan was to get a train as normal, but she said she felt poorly, so I decided to drive her there instead. I pulled up at the main entrance doors to Guys to let her out. Half way out the door her legs gave way, and she just caught herself. I dragged her back into the car on to the seat, then checked she was ok, before going for help.
I went straight to Oncology who sent a nurse out with a wheelchair. Sharon, you are an amazing nurse with the patience of a saint and the spirit of an angel. (sorry I just had to get that in there) She took care of mum, arranged bloods and other tests to be run immediatly and didnt drop the ball for a second.
After an hour or so of testing etc they decided she was dehydrated and a little malnourished, so have got her on lots of liquids and will finish running the bloods and get back to me asap with the results.
She is back home now, awaiting the date for the colonoscopy, so i will be watching her like a hawk from now on. I did ask my sister to pop round to check mum while I am at work, but apparently she is a bit busy and has dinner to cook, so can only pop her head in the door at about 4pm! Thanks!!!!
So thats the update for now.
Spoke to the Oncology Doctor re a prognosis, they are not sure right now, but are ordering scans etc to see if there is a spread, or its in her bones yet to help determine a better prognosis.
After feeling more and more tired over the past week or so, at the end of last week mum felt really poorly, and the decision was made to call NHS Direct. After a chat with them the guy recommended she see the GP asap. I placed a call to the GP and made the appointment for the afternoon.
4pm appointment, so I decided to leave work for 3pm to get to her in time to get her there. And also asked my sister to be there earlier to help mum get ready.
On my way home I got a text from my sister saying mum said she was not going as she was too ill. So on getting home I questioned her on what she wanted to do, go hospital etc.
About 2 mins after getting home, mum was sitting at the window in a chair when she suddenly went blank and started fitting. I grabbed my phone, and got my sister and her boyfriend to help her to the floor and get her in recovery.
4 paramedics and 20 mins later and she was coming around and stablising and on her way to hospital in the ambulance.
On my arrival there 30 mins later I was ushered into the family room and told to wait for the doctor, as mum was in the resuscitation room. Naturally it got me a little worried, waiting for the somber faced doctor to come and sit with me.
Thankfully this was not the case.
About another 20 mins passed and the doctor came to see me. He explained what their main concerned were, and that she had had a massive internal bleed, losing approx 4 units of blood in the process, so her HB and BP were right down, causing all the symptoms.
That night she went up onto the ward, and they started a transfusion. For the next couple of days she had transfusions, as well as an endoscopic investigation, which found no bleeding in the throat/stomach areas.
By Monday they were still no clearer on where the bleed was, but decided to discharge her pending a colonoscopy (date tba)
Then we get to today. She had an appointment with Oncology at Guys. Plan was to get a train as normal, but she said she felt poorly, so I decided to drive her there instead. I pulled up at the main entrance doors to Guys to let her out. Half way out the door her legs gave way, and she just caught herself. I dragged her back into the car on to the seat, then checked she was ok, before going for help.
I went straight to Oncology who sent a nurse out with a wheelchair. Sharon, you are an amazing nurse with the patience of a saint and the spirit of an angel. (sorry I just had to get that in there) She took care of mum, arranged bloods and other tests to be run immediatly and didnt drop the ball for a second.
After an hour or so of testing etc they decided she was dehydrated and a little malnourished, so have got her on lots of liquids and will finish running the bloods and get back to me asap with the results.
She is back home now, awaiting the date for the colonoscopy, so i will be watching her like a hawk from now on. I did ask my sister to pop round to check mum while I am at work, but apparently she is a bit busy and has dinner to cook, so can only pop her head in the door at about 4pm! Thanks!!!!
So thats the update for now.
Spoke to the Oncology Doctor re a prognosis, they are not sure right now, but are ordering scans etc to see if there is a spread, or its in her bones yet to help determine a better prognosis.
18 March 2010, 11:29 AM
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I feel so sorry for your Mum and you Snazy, Very hard for you of course and terrible for your Mum. I hope things get easier for her.
Your sister is the bitter end!, but we knew that anyway.
Les
Your sister is the bitter end!, but we knew that anyway.
Les
18 March 2010, 11:45 AM
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Cheers Les, and John
A brief add on to it all. Just spoken to the Guys POPS clinic who want to do a full assessment of mum, top to bottom, scans, bloods, interview, ability assessment etc, which will give me some peace of mind, and will determine the next possible courses of action, and hopefully somewhere in there, a prognosis.
Hoping to get the date for that through soon, once they have spoken to Oncology about yesterday, and still waiting on the colonoscopy date too. Which I hope is quite soon now.
I am going to try again with my sister today, and impress upon her, I just need her to pop in twice or so while im at work if she can, just to pop her head in the door, see if mum needs anything and then she can go if all is well. She does not need babysitting, just a keen eye kept on her.
A brief add on to it all. Just spoken to the Guys POPS clinic who want to do a full assessment of mum, top to bottom, scans, bloods, interview, ability assessment etc, which will give me some peace of mind, and will determine the next possible courses of action, and hopefully somewhere in there, a prognosis.
Hoping to get the date for that through soon, once they have spoken to Oncology about yesterday, and still waiting on the colonoscopy date too. Which I hope is quite soon now.
I am going to try again with my sister today, and impress upon her, I just need her to pop in twice or so while im at work if she can, just to pop her head in the door, see if mum needs anything and then she can go if all is well. She does not need babysitting, just a keen eye kept on her.
20 May 2010, 01:47 PM
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Cor blimey guvnor, time for a brief update..
Just got back from one of the hospitals with mum. I was a bit confused at first, the doctor called her in, 20-30 mins passed, then he came out and called someone else. While I wondered if she had strolled off somewhere or something, Joan the nurse appeared and asked me to go with her... Uh-oh I thought.
We went into an office where mum was sitting, sat down, and the conversation started.
Her regular doctor was not in, and having seen a slightly stronger willed doctor he has reopened the suggestion of surgery for mum. So Joan wanted to sit us both down to talk it over.
Mum has been against any form of surgery from the start, although she was also against chemo and radio therapy, but ended up taking the treatments, so this could go the same way. I could see from the look on her face from the start that she was not too impressed at it being brought up again, but she weathered the storm and talked.
The suggestion they are making is to clean up the wound on the right side, which is starting to weep again, and will just get worse and worse, smelly, large and painful for her. It will involve removing a large section of the breast, and require a skin graft due to the loss of area skin. The graft is suggested that it will come from her thigh.
Now naturally she has done more negative thinking about the whole matter than the average human, and feels she knows every possibility, so is a tough one to break.
The nurse and surgeon will be discussing the matter at an inter-departmental meeting on Monday and seeing how they can best approach it. They will also be involving the plastic surgeon in the discussion to see how he wishes to perform the graft. So there are lots of decision and things to talk about before the day can come around.
In the meantime she has to decide if she is ok with going ahead with it, or would rather the messy painful route.
The nurse will call me Monday afternoon to say what they have planned. She has already been deemed fit for surgery by the POPS team at Guys, so there is no delay there. Just got to hope she goes with it now. I know she is scared of the whole matter, but fingers crossed she will be brave and realise its a positive thing, not a bad thing.
This is NOT to remove the tumour, this is just to remove ulcerated tissue from around it to make life a bit more manageable.
So thats the update.
Oh the other bit is that she has decided that taking Folic Acid for her other conditions is now a no no, as she read somewhere that Folic Acid can affect SOME tumours, and the hospital could not reassure her enough that she would be unaffected by it. So thats another condition about to get worse again.
Mothers eh ! lol
Just got back from one of the hospitals with mum. I was a bit confused at first, the doctor called her in, 20-30 mins passed, then he came out and called someone else. While I wondered if she had strolled off somewhere or something, Joan the nurse appeared and asked me to go with her... Uh-oh I thought.
We went into an office where mum was sitting, sat down, and the conversation started.
Her regular doctor was not in, and having seen a slightly stronger willed doctor he has reopened the suggestion of surgery for mum. So Joan wanted to sit us both down to talk it over.
Mum has been against any form of surgery from the start, although she was also against chemo and radio therapy, but ended up taking the treatments, so this could go the same way. I could see from the look on her face from the start that she was not too impressed at it being brought up again, but she weathered the storm and talked.
The suggestion they are making is to clean up the wound on the right side, which is starting to weep again, and will just get worse and worse, smelly, large and painful for her. It will involve removing a large section of the breast, and require a skin graft due to the loss of area skin. The graft is suggested that it will come from her thigh.
Now naturally she has done more negative thinking about the whole matter than the average human, and feels she knows every possibility, so is a tough one to break.
The nurse and surgeon will be discussing the matter at an inter-departmental meeting on Monday and seeing how they can best approach it. They will also be involving the plastic surgeon in the discussion to see how he wishes to perform the graft. So there are lots of decision and things to talk about before the day can come around.
In the meantime she has to decide if she is ok with going ahead with it, or would rather the messy painful route.
The nurse will call me Monday afternoon to say what they have planned. She has already been deemed fit for surgery by the POPS team at Guys, so there is no delay there. Just got to hope she goes with it now. I know she is scared of the whole matter, but fingers crossed she will be brave and realise its a positive thing, not a bad thing.
This is NOT to remove the tumour, this is just to remove ulcerated tissue from around it to make life a bit more manageable.
So thats the update.
Oh the other bit is that she has decided that taking Folic Acid for her other conditions is now a no no, as she read somewhere that Folic Acid can affect SOME tumours, and the hospital could not reassure her enough that she would be unaffected by it. So thats another condition about to get worse again.
Mothers eh ! lol
20 May 2010, 02:46 PM
#320
Fingers crossed she will go for the surgery if it will make life more comfortable. She is obviously a fighter to have got this far, so boost her up and make her feel proud of herself for getting this far, it may spur her on. 
As for the other condition, is there anything else she can ake instead of folic acid that may help if she is not comfortable taking it any more? I can understand her worries, and if the docs can't reassure her enough, it sort of suggests there might be some risk. Even complimentary medicine? However I think you have to be careful with some of those whilst being treated for cancer so tread carefully.
Good luck and I really do hope she makes the right choice.
As for the other condition, is there anything else she can ake instead of folic acid that may help if she is not comfortable taking it any more? I can understand her worries, and if the docs can't reassure her enough, it sort of suggests there might be some risk. Even complimentary medicine? However I think you have to be careful with some of those whilst being treated for cancer so tread carefully.
Good luck and I really do hope she makes the right choice.
20 May 2010, 03:40 PM
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Cheers Lisa.
She has got to the point now where she reads every little word on the inserts in the medication boxes, and seems to assume that ANYTHING it says, she will be affected by. Its one of the complications of her and medication. I realise they have to take into account other meds she is taking, but care is usually taken when being prescribed.
She has numerous other conditions inc bleeding from the bowel which she is now 100% sure (and self diagnosed) that the Warfarin did that. Her COPD is playing up, but she refuses to have that treated as its steroids and she does not take them..... And so on lol.
With regards to the surgery she seems to be thinking it over, which like I say is a positive thing, as usually she just rejects it and its over with. So now we have to first see what the meeting throws up, and what suggests. Then she has to speak it over with the surgeon, then an appointment with the plastic surgeon.
Not sure of the time scale they have in mind for all of this, but from what the nurse was saying "we have a window of opportunity" it sounds like they want to get it done as soon as they possibly can. However this is where the waiting time thing comes into it. Im sure that it would be seen as urgent, and be quite swift, but getting all the departments together might slow it down a bit.
Selfish as it might seem, I am keen to find out timelines etc asap as i have a holiday booked up and need to know if I need to cancel, postpone or just go ahead with it. So that just adds an extra bit of stress to it for me.
Mum obviously comes first, but being able to plan would be cool too.
She has got to the point now where she reads every little word on the inserts in the medication boxes, and seems to assume that ANYTHING it says, she will be affected by. Its one of the complications of her and medication. I realise they have to take into account other meds she is taking, but care is usually taken when being prescribed.
She has numerous other conditions inc bleeding from the bowel which she is now 100% sure (and self diagnosed) that the Warfarin did that. Her COPD is playing up, but she refuses to have that treated as its steroids and she does not take them..... And so on lol.
With regards to the surgery she seems to be thinking it over, which like I say is a positive thing, as usually she just rejects it and its over with. So now we have to first see what the meeting throws up, and what suggests. Then she has to speak it over with the surgeon, then an appointment with the plastic surgeon.
Not sure of the time scale they have in mind for all of this, but from what the nurse was saying "we have a window of opportunity" it sounds like they want to get it done as soon as they possibly can. However this is where the waiting time thing comes into it. Im sure that it would be seen as urgent, and be quite swift, but getting all the departments together might slow it down a bit.
Selfish as it might seem, I am keen to find out timelines etc asap as i have a holiday booked up and need to know if I need to cancel, postpone or just go ahead with it. So that just adds an extra bit of stress to it for me.
Mum obviously comes first, but being able to plan would be cool too.
20 May 2010, 05:16 PM
#322
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Cheers Lisa.
She has got to the point now where she reads every little word on the inserts in the medication boxes, and seems to assume that ANYTHING it says, she will be affected by. Its one of the complications of her and medication. I realise they have to take into account other meds she is taking, but care is usually taken when being prescribed.
She has numerous other conditions inc bleeding from the bowel which she is now 100% sure (and self diagnosed) that the Warfarin did that. Her COPD is playing up, but she refuses to have that treated as its steroids and she does not take them..... And so on lol.
With regards to the surgery she seems to be thinking it over, which like I say is a positive thing, as usually she just rejects it and its over with. So now we have to first see what the meeting throws up, and what suggests. Then she has to speak it over with the surgeon, then an appointment with the plastic surgeon.
Not sure of the time scale they have in mind for all of this, but from what the nurse was saying "we have a window of opportunity" it sounds like they want to get it done as soon as they possibly can. However this is where the waiting time thing comes into it. Im sure that it would be seen as urgent, and be quite swift, but getting all the departments together might slow it down a bit.
Selfish as it might seem, I am keen to find out timelines etc asap as i have a holiday booked up and need to know if I need to cancel, postpone or just go ahead with it. So that just adds an extra bit of stress to it for me.
Mum obviously comes first, but being able to plan would be cool too.
She has got to the point now where she reads every little word on the inserts in the medication boxes, and seems to assume that ANYTHING it says, she will be affected by. Its one of the complications of her and medication. I realise they have to take into account other meds she is taking, but care is usually taken when being prescribed.
She has numerous other conditions inc bleeding from the bowel which she is now 100% sure (and self diagnosed) that the Warfarin did that. Her COPD is playing up, but she refuses to have that treated as its steroids and she does not take them..... And so on lol.
With regards to the surgery she seems to be thinking it over, which like I say is a positive thing, as usually she just rejects it and its over with. So now we have to first see what the meeting throws up, and what suggests. Then she has to speak it over with the surgeon, then an appointment with the plastic surgeon.
Not sure of the time scale they have in mind for all of this, but from what the nurse was saying "we have a window of opportunity" it sounds like they want to get it done as soon as they possibly can. However this is where the waiting time thing comes into it. Im sure that it would be seen as urgent, and be quite swift, but getting all the departments together might slow it down a bit.
Selfish as it might seem, I am keen to find out timelines etc asap as i have a holiday booked up and need to know if I need to cancel, postpone or just go ahead with it. So that just adds an extra bit of stress to it for me.
Mum obviously comes first, but being able to plan would be cool too.
Thoughts with you and your mum
20 May 2010, 05:56 PM
#323
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She had a colonoscopy last week which came up with nothing conclusive, but because of this, and the fact she is not taking Warfarin right now, she is positive it was that.
She was in hospital because of the bleed a few weeks back now, lost 4 units and dropped like a stone. But the bleed has not come back, or not that she has told me.
I should say though, while on Warfarin, if she so much as scratched herself hard, she would get below the surface bleeding. But I certainly dont think it was the cause. And the removal of polyps from her bowel and inner workings leaves me wondering if the cancer is spreading now, the same route her sisters took 10 years ago.
20 May 2010, 06:10 PM
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Farkin hell mate, how long you been on that. She was on 5-6mg a day maximum, but because it was mentioned during a consultation that she was on Warfarin and it MAY have contributed, she just decided that was a good enough reason to stop taking it. Hospital adviced ceasing it until the cause was found, but she has just shyed away from being put back on it now.
She had a colonoscopy last week which came up with nothing conclusive, but because of this, and the fact she is not taking Warfarin right now, she is positive it was that.
She was in hospital because of the bleed a few weeks back now, lost 4 units and dropped like a stone. But the bleed has not come back, or not that she has told me.
I should say though, while on Warfarin, if she so much as scratched herself hard, she would get below the surface bleeding. But I certainly dont think it was the cause. And the removal of polyps from her bowel and inner workings leaves me wondering if the cancer is spreading now, the same route her sisters took 10 years ago.
She had a colonoscopy last week which came up with nothing conclusive, but because of this, and the fact she is not taking Warfarin right now, she is positive it was that.
She was in hospital because of the bleed a few weeks back now, lost 4 units and dropped like a stone. But the bleed has not come back, or not that she has told me.
I should say though, while on Warfarin, if she so much as scratched herself hard, she would get below the surface bleeding. But I certainly dont think it was the cause. And the removal of polyps from her bowel and inner workings leaves me wondering if the cancer is spreading now, the same route her sisters took 10 years ago.
been taking it for a year now, hopefully not for much longer, should be cardio-averted in 6-8 or so weeks. I take a big dose to get my INR with range (blood thinned to a certain level) and it has proved to ge harder to do over a period of time.
I am on a shed load of other meds as well, beta blockers, allsorts - hopefully this should all be done with once i get averted, or at least some of them as i hate taking tablets and what they do to me. This is all because my GP failed to spot (i went back to see her some 7 times in two weeks) that i had a real bad reaction to codeine which caused my lungs to fill with fluid and my heart could not extract the oxygen from my lungs and was beating at 180bpm just sitting still - peaked at 220bpm walking and i could not get more than 50 yds without a serious rest and had to sleep upright as i choked and could not breathe if i laid down.
Ended up in hospital in a really bad way with heart damage which is slowly getting better although the drugs have just about killed off my imune system. My heart on a failure scale of 1-0 10 being dead was an 8-9 when i was admitted for the first time, it is now a 2-3 so things are on the mend.
Anyway enough of me, me, me
Some people seem to be succeptable to the bleeding from what i gather chatting to my consultant and to the blood letting nurses and the INR clinic. I have blood drawn twice a week and it stops bleeding within a minute. Even so i would not blame the warfarin first off and get it looked at.
I lost my dad to Bowel cancer - primary cancer, saw him drop from 12 stone and an active chap to 8 stone and bed ridden in a matter of months which was heart breaking.
