![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Entry tags:
Tumour - pre biopsy consulation
Summary of this story (where you can read previous updates) at: http://www.livejournal.com/users/matthewp/157130.html
I thought the biopsy was today (well, yesterday as I write this), but it wasn't. Instead it was a prebiopsy consultation with the surgeon. They had pictures of the MRI scans which were interesting but scary too - moreso than the PET scans. I've asked for a copy of the MRI scans and hopefully they'll be sent to me. (Unfortunately the geek from before wasn't there so I can't be certain)
Next monday I'll be told when the biopsy itself will be; this will be under a general anaethetic as the area is too difficult to anaesthetise locally. That'll be sent off for analysis so that the know what type of tissue it is and about 2 weeks later I'll have the operation to remove the tumour itself. After that I'll spend about 5 days to 1 week in hospital and then be able to go home. I'll be weak for about 3 weeks and then i'lb e mobile again - whether this means in a wheelchair or on crutches I don't know.
Whilst I knew some of the posibilities, I didn't know all the details nor the likelihoods.
best case scenario is that they remove just the tumour and I walk with a bit of a limp (recovery time of a few months in a wheelchair/on cruches). That much I expected. Medium case scenario is that they have to amputate, for example if it's too ingrown and complicated. Worse case scenario is that the treat the current tumour but a secondary one appears elsewhere within a couple of years. if that happens then survival is 50%. THe odds raise to 90% after 5 years and then they deem me to be clear if no recurrance after 10 years.
I have youth on my side and a very strong immune system so I'm a bit suspicious of the figures the surgeon quoted.
My mum was with me and also asked a few pertinent questions. Contrary to my previous angst I don't object to her being there. It was difficult at first but this has (as I suspected) helped to bring us closer. And at the end of the day I came out to her and even told her about BiCon and![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
mhw. She's happy for me to stay in Manchester around my friends but natually wants the opportunity to look after me on occasion too. I'll not object to that, but she was in agreement of the tension between us in recent times and living together 24-7 would put a lot of strain on that.
Oh, what I didn't mention is that once again the film crew were with me. Several people have asked about this, and whether I mind. I don't. In some ways I welcome it because Paul (the director) during the interviews afterwards asks some quite personal questions and talking about things helps me to think about them and analyse them rather than just shelving them away and forgetting about them, only for them to explode uncontrollably later on. So the crew were there filming me being briefly examined by the surgeon and the discussion that ensued along with my options. Then we came back to my house and Paul interviewed the two of us just to get a bit more insight.
I'm not quite sure how this is affecting me. I'm still calm and collected; I've not cried or felt resentful of fate or been angry. (This is both on and off camera) Yes, I understand that those are normal reactions and are quite likely in terminally ill patients. (OK, so it's not definitely terminal but IHYKWIM)
I wouldn't say that I feel numb - I'm happy to talk about things whether on a medical, practical, technical or personal level. Perhaps it's talking to people and writing in this journal which helps keeps me sane. That and the extensive research I've been doing at most stages. Gareth (the consultant I saw last time) and Dr Paul (who I saw today - my surgeon) have both commented that I'm the atypical patient in this respect and that I'm asking complex and in-depth questions. I was speaking to Paul the director about this earlier today and asked about how much they'll need to write for the narrator to put in as background information, because a lot of the basic information I already know, but the TV masses might not necessarily, and this would therefore need explaining.
The point I was making above is that I'm a little surpised at myself that I've not yet had a 'strong' reaction. *shrug*
One of the questions that I was asked is what will I do with the rest of my life. (It wasn't phrased so flatly, but it's late and words are failing me - I'll end this post soon enough so I don't spout drivel) Anyway, assuming 2-5 years, I'd like to carry on with my current job for a few months and then move to Germany to teach English there. A couple of years ago I started saving in an ISA so have quite a bit put away. Inheritance tax is a stupid amount and I don't have any dependants anyway so it would be feasible for me to spend supplementing the pittance that (AIUI) ESL teaching pays. Other ambitions are to do a parachute jump and to visit Japan.
All that said, I don't know for certain it will be fatal. If I survive it would perhaps be unwise to have spent all my savings. Or would it? Many people cope without savings (living of wages as they come in) and that said I've been coping whilst adding to those savings. It's something I'll need to think about, certainly.
Lots of practical things to think about too - such as a will and possible housemove (to somewhere more suitable, such as a ground floor flat, low counter tops etc) and how this affects my current employment, assuming I don't leave and do ESL teaching.
In summary, bleaker than I expected but I'm still doing OK.
Random thought of the moment before I think about bed. Should I turn this story into a book?
I thought the biopsy was today (well, yesterday as I write this), but it wasn't. Instead it was a prebiopsy consultation with the surgeon. They had pictures of the MRI scans which were interesting but scary too - moreso than the PET scans. I've asked for a copy of the MRI scans and hopefully they'll be sent to me. (Unfortunately the geek from before wasn't there so I can't be certain)
Next monday I'll be told when the biopsy itself will be; this will be under a general anaethetic as the area is too difficult to anaesthetise locally. That'll be sent off for analysis so that the know what type of tissue it is and about 2 weeks later I'll have the operation to remove the tumour itself. After that I'll spend about 5 days to 1 week in hospital and then be able to go home. I'll be weak for about 3 weeks and then i'lb e mobile again - whether this means in a wheelchair or on crutches I don't know.
Whilst I knew some of the posibilities, I didn't know all the details nor the likelihoods.
best case scenario is that they remove just the tumour and I walk with a bit of a limp (recovery time of a few months in a wheelchair/on cruches). That much I expected. Medium case scenario is that they have to amputate, for example if it's too ingrown and complicated. Worse case scenario is that the treat the current tumour but a secondary one appears elsewhere within a couple of years. if that happens then survival is 50%. THe odds raise to 90% after 5 years and then they deem me to be clear if no recurrance after 10 years.
I have youth on my side and a very strong immune system so I'm a bit suspicious of the figures the surgeon quoted.
My mum was with me and also asked a few pertinent questions. Contrary to my previous angst I don't object to her being there. It was difficult at first but this has (as I suspected) helped to bring us closer. And at the end of the day I came out to her and even told her about BiCon and
mhw. She's happy for me to stay in Manchester around my friends but natually wants the opportunity to look after me on occasion too. I'll not object to that, but she was in agreement of the tension between us in recent times and living together 24-7 would put a lot of strain on that.Oh, what I didn't mention is that once again the film crew were with me. Several people have asked about this, and whether I mind. I don't. In some ways I welcome it because Paul (the director) during the interviews afterwards asks some quite personal questions and talking about things helps me to think about them and analyse them rather than just shelving them away and forgetting about them, only for them to explode uncontrollably later on. So the crew were there filming me being briefly examined by the surgeon and the discussion that ensued along with my options. Then we came back to my house and Paul interviewed the two of us just to get a bit more insight.
I'm not quite sure how this is affecting me. I'm still calm and collected; I've not cried or felt resentful of fate or been angry. (This is both on and off camera) Yes, I understand that those are normal reactions and are quite likely in terminally ill patients. (OK, so it's not definitely terminal but IHYKWIM)
I wouldn't say that I feel numb - I'm happy to talk about things whether on a medical, practical, technical or personal level. Perhaps it's talking to people and writing in this journal which helps keeps me sane. That and the extensive research I've been doing at most stages. Gareth (the consultant I saw last time) and Dr Paul (who I saw today - my surgeon) have both commented that I'm the atypical patient in this respect and that I'm asking complex and in-depth questions. I was speaking to Paul the director about this earlier today and asked about how much they'll need to write for the narrator to put in as background information, because a lot of the basic information I already know, but the TV masses might not necessarily, and this would therefore need explaining.
The point I was making above is that I'm a little surpised at myself that I've not yet had a 'strong' reaction. *shrug*
One of the questions that I was asked is what will I do with the rest of my life. (It wasn't phrased so flatly, but it's late and words are failing me - I'll end this post soon enough so I don't spout drivel) Anyway, assuming 2-5 years, I'd like to carry on with my current job for a few months and then move to Germany to teach English there. A couple of years ago I started saving in an ISA so have quite a bit put away. Inheritance tax is a stupid amount and I don't have any dependants anyway so it would be feasible for me to spend supplementing the pittance that (AIUI) ESL teaching pays. Other ambitions are to do a parachute jump and to visit Japan.
All that said, I don't know for certain it will be fatal. If I survive it would perhaps be unwise to have spent all my savings. Or would it? Many people cope without savings (living of wages as they come in) and that said I've been coping whilst adding to those savings. It's something I'll need to think about, certainly.
Lots of practical things to think about too - such as a will and possible housemove (to somewhere more suitable, such as a ground floor flat, low counter tops etc) and how this affects my current employment, assuming I don't leave and do ESL teaching.
In summary, bleaker than I expected but I'm still doing OK.
Random thought of the moment before I think about bed. Should I turn this story into a book?
no subject
Rooting for you!
*big hug*
no subject
no subject
no subject
have you had opportunity to discuss the likelihood of the tumour being benign or malignant? are there any guesses at the minute? and if malignant, what kind of tumour it might be, and the relative treatability of it - it seems like you've discussed some of this in the 'worse case scenario'. i know from my experience of others' experiences with tumours, benign and malignant, there is a guge variation.
all of the above questions are 'answer at your discretion' (if that needs to be said), and come from a genuine interest on my part, not a have-you-thought-of-this-have-you-thought-of-that place. if my interest/the expression of it is not-constructive for you and/or insensitive in any way to where you might be at, please let me know.
you are so right that youth and a healthy immune system are very in your favour *smile* imo these would make me hopeful of a bengin tumour rather than malignancy (given a good immune systme especially), and the best recovery possible.
no subject
no subject
no subject