In January I was due to have an op a pelvic excenteration to remove the pelvic tumour that had been discovered....the oncologist cancelled it....a year on and the tumour is playing up more than the ones in the lungs, so now I can have it done!
I went to see Mr George again to discuss whether he would do it, last January despite the condition of my lungs he offered me a 'second bite of the cherry' this time he was at pains to explain that he would not in anyway be curing me.....I knew that last time but you would never tell a doctor not to tell you everything is going to be ok even though you know it won't be. I nodded and agreed yes it isn't going to cure me but somehow a slow painful death seems preferable to a ........slow painful death. The tumour has for the last couple of months been making itself known just a bit painful here and there and affecting my bowels, but nothing I can't handle but I don't want it to get the point where I can't manage it at all.
So last time I was offered a choice of a bag or not....this time it doesn't seem worth having that option , if I have an ileostomy with a view to a reversal I might or might not manage the output that I would have with chemo and it may not be successfully reversed and I would be stuck with an ileostomy and it also takes time out of chemo in order to have the op to be reversed. So a permanent colostomy it is then....something I really didn't want at all.
Everything is to go .......a once in a lifetime offer, a hysterectomy, a colostomy and no repair vaginally as of course it isn't worth doing with a life sentence hanging over my head....this was on offer last time, but i do get the offer of keeping my bladder. This is just a keep you going a bit longer without pain job. Yes I knew this and no Mr George wasn't dismissive with me at all he was charming and helpful and to the point, but you can't help feeling that you've been put out to grass. All I will be good for is looking after my boys which is of course the whole reason that this surgery needs to happen. But I don't like it and I don't want it, except that I do want it.
The other pissy thing is the timing, I go in on the 24th jan which means that there is no way I can be around for joes 21st on feb 8th, he says its ok but I am gutted!!!
The one consoling thing is that I hope this produces another dramatic loss of weight, there has to be something to gain from this, oh apart from getting rid of a life threatening painful tumour.
Occasional thoughts from a crabby mother of three boys, living in a menagerie and with bowel cancer.
Monday, 17 December 2012
Thursday, 22 November 2012
22.11.99
Today was Zak's 13th birthday, another teenager in the house after i managed to get rid of one when Joe turned 20 earlier in the year.
It doesn't seem 13 years ago that i was in Lewisham hospital waiting for Zak to make his appearence, even more astonishing that Joe is on his way to 21!
Joe was due on the 26th January, but it wasn't until the 7th of February 1992 that i started to feel the twinges in the morning that would gradually increase in force until at around 10pm that evening i called the hospital to say that i thought i should come in.
Rachid Joe's dad prayed after i told him it was time to leave, later in the evening he was to tell me that the baby would be born at 2am, i didn't really take much notice of this until a few days later when he told me that when he prayed he was told your son will be born at 2am.....that was even more intruiging as i was told at the scan that he was a girl!
After i arrived at the hospital i was examined and found to be 8 centimeters this was around 12am, less than two hours later at 1.57 on the 8th Feb 92. Joe was born like superman with one hand infront of his head, causing me to have 16 stitches. He also weighed 9lb 8 ounces, a big baby.
Adam four years later was a different affair altogether, i felt my waters go in the morning of the 15th April but didn't have any pains, we walked Joe to my friend Jaqui's and carried onto the hospital on a lovely bright spring morning. When i got there she examined me and said no not yet and the waters haven't broken, well i hadn't wet myself! Turned out it was the hind waters.
I went up to the ward and settled in around 5pm whoosh! the rest of the waters went, i pressed what i thought was the help button, turned out to be the panic button and to my horror four nurses came charging up the ward towards me! i only wanted the sheets changed!
The pains started rolling in then, at 9pm hey felt like the ones i had with Joe at 8 cm examined and no not in labour yet only 4! what!!!!!!???? i asked to go to the labour ward and they reluctantly allowed me to. The midwife warned me that she had another lady there and it was likely that i would be sent back to the ward she didn't think he would come until 6am probably......i couldn't take that in it sounded impossible to me that i would manage the pain that long. I lay on the bed and somehow the valves and pins on the top of the gas and air bottle beside the bed felt really comfortable, to anyone else my head crooked sideways hanging off the bed and lying on a hard clylinder i must have looked like i needed saving which is what rachid did, again and again the third time he was told to f ing leave me alone!!!!!
Come 11.30 i was good to go and the other lady was sent back to the ward. Adam made his appearence at 8 minutes past 12 on the 16th April. He had a shock of dark curly hair and i don't remember him crying he just looked around the room out of his cot taking it all in, i think Rachid said that he was still in the sack when he arrived a good omen in many countries.
Zak 13 years ago on November 22nd was not ready to relinquish his cozy home. He was due like the other two two weeks earlier on 6th november. I had some signs of movement around the 19th and was admitted Joe and Adam went to stay with my friend Sarah at this time. After an evening they sent me home as they were short staffed and nothing was likely to be done. On the Sunday i got a call from the doctors, haven't you had this baby yet?...no well you must come in this evening then!
I went in and spent the night with the young girl in the bed opposite in agony and not keeping it to herself. The next day nothing so around 3pm they took me away and appleied some gel to get things going.....nothing....a drip was put up and set on slow to start htings that way......nothing.....turned up.....nothing.......turned up again and around 7.30pm it all kicked off, at 8pm to the strains of Coronation st on a tv in the room that had been left on Zak came screaming into the world, a little red angry face at the indignity of being kicked out before he was ready.
I always said he had the look of someone who had 'been here before' indeed as he grew he was always older than his years and continues to be so. This stands him in good stead in some areas but at the moment answering back to his teachers because they are not being reasonable in his esptimation is getting him into a lot of bother... i hope that this is something he tempers and learns to respond more appropriately to adults.
He is lovely though with his big brown eyes and shock of curly hair, a heart breaker in the making!
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| Joe 10 Adam 6 Zak 2 |
Joe was due on the 26th January, but it wasn't until the 7th of February 1992 that i started to feel the twinges in the morning that would gradually increase in force until at around 10pm that evening i called the hospital to say that i thought i should come in.
Rachid Joe's dad prayed after i told him it was time to leave, later in the evening he was to tell me that the baby would be born at 2am, i didn't really take much notice of this until a few days later when he told me that when he prayed he was told your son will be born at 2am.....that was even more intruiging as i was told at the scan that he was a girl!
After i arrived at the hospital i was examined and found to be 8 centimeters this was around 12am, less than two hours later at 1.57 on the 8th Feb 92. Joe was born like superman with one hand infront of his head, causing me to have 16 stitches. He also weighed 9lb 8 ounces, a big baby.
Adam four years later was a different affair altogether, i felt my waters go in the morning of the 15th April but didn't have any pains, we walked Joe to my friend Jaqui's and carried onto the hospital on a lovely bright spring morning. When i got there she examined me and said no not yet and the waters haven't broken, well i hadn't wet myself! Turned out it was the hind waters.
I went up to the ward and settled in around 5pm whoosh! the rest of the waters went, i pressed what i thought was the help button, turned out to be the panic button and to my horror four nurses came charging up the ward towards me! i only wanted the sheets changed!
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| Zak 11 |
Come 11.30 i was good to go and the other lady was sent back to the ward. Adam made his appearence at 8 minutes past 12 on the 16th April. He had a shock of dark curly hair and i don't remember him crying he just looked around the room out of his cot taking it all in, i think Rachid said that he was still in the sack when he arrived a good omen in many countries.
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| Zak 5 |
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| Zak 13 |
I went in and spent the night with the young girl in the bed opposite in agony and not keeping it to herself. The next day nothing so around 3pm they took me away and appleied some gel to get things going.....nothing....a drip was put up and set on slow to start htings that way......nothing.....turned up.....nothing.......turned up again and around 7.30pm it all kicked off, at 8pm to the strains of Coronation st on a tv in the room that had been left on Zak came screaming into the world, a little red angry face at the indignity of being kicked out before he was ready.
I always said he had the look of someone who had 'been here before' indeed as he grew he was always older than his years and continues to be so. This stands him in good stead in some areas but at the moment answering back to his teachers because they are not being reasonable in his esptimation is getting him into a lot of bother... i hope that this is something he tempers and learns to respond more appropriately to adults.
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| Zak 8 |
Wednesday, 21 November 2012
This one's for Suzanne......Cousins
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| Me and Suzanne. |
I have Six first cousins and none of them live in England!!!
| Me Auntie Joan, Uncle Joe and John |
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| John and his mandolin |
| This is Val |
| And this is me |
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| Val and Melinda who has the genes too. |
The genes i think were particularly strong in mum's side of the family, certainly as i get older i look more and more like her. Adam has inherited them too.
So onto dad's side
| Uncle Gerald Katherine and Annie in 2010 |
| Stephen on the right with Helen and Keith Winnie and me |
Keith The second child of three and the naughtiest one when small. He couldn't be more different from Stephen, he is a builder married to Margie with Mark and Naomi their children. I get on with him quite well and keep in more regular contact. I visited Austraila in 1997 with mum and the two older boys. Keith lives in a lovely little town called Tumut somewhere between Canberra and Melbourne. His son Mark and his wife Haley have a little girl Aliza and at the time of writing is expecting again.....everyone is hoping for a boy as if not the Willards will eventually die out. The Hawells' on my mum's side will disappear with John he is the only one left.
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| Richard and Helen |
So that's it my cousins!!!!........................
| Janet |
| Zak and Walter |
I used to see her about once a year when my dad would take us down to visit his relatives, Suzanne is 9 months younger than me so we used to be left together whilst the adults did their catching up chatting thing. We got on ok i remember but never really spent enough time to know each other very well. I do! remember her brother at age 11 and me 9 driving me furiously around her grandfathers field in a clapped out van i think it was.
| Percy and Walter |
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| Suzanne and Brother Derek |
| Suzanne |
| Walter |
When i was taken ill she came to visit in the hospital and made sure i had what i needed. She has continued to be a great support and has become involved with the bowel cancer community.....she is Suzfitzy on twitter.
When dad died she and her mum attended the funeral which doubled the family attendance, and when mum died she came up to help to clear mum's house with me, which consisted of a trip to the charity shop, a cup of tea in the cafe, trip to the charity shop, cup of tea in the cafe.
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| Me and Suz my thin years and a year before finding out i had cancer |
Thursday, 15 November 2012
The Cancer Rollercoaster.
As promised this afternoon Mr Smith called and gave me the results of the MDT meeting regarding the possibility of surgery. They say yes!!! well that's one hurdle passed he will send a FAX to refer me back to mr George at Guys for an appointment to see if he will take on board this surgery. As he was very positive about doing it in January i am hoping that things haven't changed too dramatically and that he will agree to go ahead. It is odd to feel so pleased that such an invasive surgery is going to be completed, up till now the tumours have not made any real impact apart of course from the operation i had back in Aug 07 but i bounced back from that to carry on as normal until now. I don't somehow feel the same will apply to this, but already i am experiencing changed in bowel habit and period like twinges and back ache due to my current situation.
They couldn't determine a great deal from my CT in terms of the pelvis, apart from some rectal thickening, they never can, but i know that it is grumbling and will have more CT's and MRI's at Guys if he decides to operate, if he doesn't i will be in a bit of a predicament and would expect i think to experience more pain and.............. well i think this isn't even worth contemplating.
They could see my lung mets and they have grown slightly, largest being 9mm which isn't so bad and certainly not big enough to affect the anaesthetic apparently, something i had not even considered.
So now i await the appointment to see Mr George. I do wonder if having this in January would have been better in hindsight, but i guess i understand the Onco's reasons for not wanting it done, this is all a bit of a guessing game in the end.
I did what you tell everyone not to do this evening and looked up images of pelvic excenteration, not!! a pretty sight, i also noticed high morbidity rate....but i think i am strong enough to get through this.
It does though affect any plans i might have had to travel more, i don't know what the lead up to the op is so if i can get away for a week even somewhere i might look into it, trouble is most people i know can't afford to go away and i would likely have to travel alone, but i have done that before its not that bad, you meet people along the way.
i had tentative thoughts about going over to Australia to see my two cousins and family and then going to New Zealand to see my very good friend who emigrated out there only a couple of months after my op. She was the one who took the boys for me as she met me at the airport with my car, instead of a drive home she got a week full of boys, having two of her own at the time. Since moving to NZ she has had a little boy and then a girl who i have not seen yet. I also have a friend in East Timor who has invited me over to visit him, now what and adventure that! would be i could fit it in along the way, or if i could fit in a trip like that at all!! looking very unlikely.
Going away for an extended period i think would also be good for the boys and their dad. I have been saying to him recently that he needs to do more, especially whilst i am still here to answer questions and so that the boys get used to him managing things. I can't get into the ramifications of him being in the house all this time and not doing anything, it's just how it panned out, but i guess now it is better that he didn't leave and can start finding out what is is like to run hearth and home. If i were out of the way he would just have! to get on with things, but then i guess if i am recovering from major surgery this would happen anyway. Personally i prefer the first plan of travelling in order to get this into place.
This is all kind of scary in a way but not so much that i can't deal with it, just it's like another big step in my cancer journey, not a word i like to use really but apt in this context. When i had my first op i didn't have time to think about it really, on the Tuesday i discovered that the op would happen and it went ahead on the Friday! whoooooosh it was all over.
So just need to get the go ahead, i really hope that he can do it, he did say last time that as the tumour is placed centrally i am very 'lucky' as this means that he can get margins ok........so here we go another round on the cancer rollercoaster!
Mr Mark George / Consultant General and Colorectal Surgeon
Mr Mark George qualified form St Mary's Hospital in 1991 and is a specialist in advanced primary and recurrent colorectal cancer. His higher surgical training was undertaken in the South East London Region. His research was performed at the Royal Marsden Hospital and Institute of Cancer Research and was awarded his Master of Surgery in 2002. He was appointed as a Consultant Colorectal Surgeon to Guys and St Thomas' Hospitals in 2003 and is lead clinician for colorectal cancer. He is interested in laparoscopic colorectal surgery and is a specialist in the treatment of advanced colorectal cancer and is the regional anal cancer surgeon.
Qualifications
2002 Master of Surgery. University of London
2001 F.R.C.S. (Gen). Subspecialty: Colorectal surgery
1995 F.R.C.S. (Eng)
1991 M.B. B.S.
1988 B.Sc. FIRST CLASS HONOURS in Physics with Medical Application
2001 F.R.C.S. (Gen). Subspecialty: Colorectal surgery
1995 F.R.C.S. (Eng)
1991 M.B. B.S.
1988 B.Sc. FIRST CLASS HONOURS in Physics with Medical Application
Position held
President of SE London and West Kent ileostomy association
Council member, Coloproctology Section, Royal Society of Medicine
Chairman of South East London, Colorectal Tumour Working Group 2006-8
Council member, Coloproctology Section, Royal Society of Medicine
Chairman of South East London, Colorectal Tumour Working Group 2006-8
They could see my lung mets and they have grown slightly, largest being 9mm which isn't so bad and certainly not big enough to affect the anaesthetic apparently, something i had not even considered.
So now i await the appointment to see Mr George. I do wonder if having this in January would have been better in hindsight, but i guess i understand the Onco's reasons for not wanting it done, this is all a bit of a guessing game in the end.
I did what you tell everyone not to do this evening and looked up images of pelvic excenteration, not!! a pretty sight, i also noticed high morbidity rate....but i think i am strong enough to get through this.
It does though affect any plans i might have had to travel more, i don't know what the lead up to the op is so if i can get away for a week even somewhere i might look into it, trouble is most people i know can't afford to go away and i would likely have to travel alone, but i have done that before its not that bad, you meet people along the way.
i had tentative thoughts about going over to Australia to see my two cousins and family and then going to New Zealand to see my very good friend who emigrated out there only a couple of months after my op. She was the one who took the boys for me as she met me at the airport with my car, instead of a drive home she got a week full of boys, having two of her own at the time. Since moving to NZ she has had a little boy and then a girl who i have not seen yet. I also have a friend in East Timor who has invited me over to visit him, now what and adventure that! would be i could fit it in along the way, or if i could fit in a trip like that at all!! looking very unlikely.
Going away for an extended period i think would also be good for the boys and their dad. I have been saying to him recently that he needs to do more, especially whilst i am still here to answer questions and so that the boys get used to him managing things. I can't get into the ramifications of him being in the house all this time and not doing anything, it's just how it panned out, but i guess now it is better that he didn't leave and can start finding out what is is like to run hearth and home. If i were out of the way he would just have! to get on with things, but then i guess if i am recovering from major surgery this would happen anyway. Personally i prefer the first plan of travelling in order to get this into place.
This is all kind of scary in a way but not so much that i can't deal with it, just it's like another big step in my cancer journey, not a word i like to use really but apt in this context. When i had my first op i didn't have time to think about it really, on the Tuesday i discovered that the op would happen and it went ahead on the Friday! whoooooosh it was all over.
So just need to get the go ahead, i really hope that he can do it, he did say last time that as the tumour is placed centrally i am very 'lucky' as this means that he can get margins ok........so here we go another round on the cancer rollercoaster!
Monday, 12 November 2012
Old Friends and Murderers
I arranged a few weeks ago to meet up with two former work collegues for lunch. Caroline who i have been in contact with since leaving my last job has been lovely and she was still in contact with John who i worked with 18 years ago in one of the homes. He was working in social care but really wanting to be an actor and he left after a few years and gradually we lost contact so it was about 16 17 years since i had seen him, but we picked up as though it were yesterday.
He made a meal for us at his place, was lovely fish followed by pasta, then cheese and finally a merangue. We talked and talked, John is now working in television, his background in social care combined with his acting experience lent well to working in documentaries and you may remember a dispatches programme he was in a couple of years ago playing an undercover social worker to find out how things were in that profession? He also put together a programme on Winnie, oh sorry i don't remember the surname but her son was killed by Ian Brady and geez my memory the woman ah! Myra Hindley. He was looking at the awful experience from the perspective of the victims, he found her unlike reported, to be very much together and tough even though she died before finding out where her son was buried she was not as sad and distraught as was muted he got to know her well and really liked her.
As part of the programme he wrote to Brady and got a reply, in fact he had these letters still and he showed them to us. It is a singular experience to have in your hands a hand written letter penned by one of the most notorious and reviled people in the country. In it he was commenting on all the programmes made about him and obviously sees himself as maligned by the law and process. He apparently is deeply psychotic and has no empathy, everything important in his life is about him and the letters themselves were even a bit of a game with him though John himself wrote in a way that he knew would elicit a response. Brady also in his letter alluded to a book on serial killers.... that he has written himself! i guess it's searchable on Amazon!?
The discussion on his programmes swept here and there to the point where between us we were thinking of ways that my experience with cancer could be used to some good. If anything helpful can come from my experience i am all for it, so we are going to get together to seriously consider what angle could be presented that the commissioners would see as a good programme. I have said we can do this as long as i can mention bowel cancer and beating bowel cancer somewhere in the mix.....we shall see how far this goes it is likely to be blown out of the water at the first hearing but you don't know if you don't try!
Incredibly the time flew by we arrived at one and then suddenly at 7.30 John's partner Bernardo arrived home and we realised how long we had been catching up on gossip, finding out the changes in each others lives and talking about cancer and death, sounds morbid but it wasn't just frank open discussion.
It was so so good to see John again and we are going to meet again soon, he was always someone i had no difficulty getting on with and it is great to have him back in my circle of friends again!
Thursday, 8 November 2012
50!!
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| Me and Caroline from school |
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| All my friends from Beating Bowel Cancer |
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| I don't know either |
There was enough in the end and i rolled up at 7pm with it only to find people in the bar above the venue waiting patiently for me......late again late to my own party!
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| Dafyyd and I |
All the people i would want to be there came, old work colleagues, a contingent from the road where i live, friends i had made through the boys and a school friend came all the way from Gt Yarmouth which i was really chuffed about.
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| Not drunk just busting some moves! |
Blagging it!
Well interesting day today. A couple of weeks ago i had my scan, about a couple of months ago i saw the doc and he said come back in November and i got the appointment through but as usual i lost it never recorded it and had a vague idea of when it was.
Over the last month or so my pelvic tumour was making itself known again with some bleeding certainly whilst on the chemo this had stopped and i was also having some period like pains here and there....nothing i couldn't manage.
So i had my scan and with the symptoms on my mind may have subconsciously decided to go on the wrong day, i have turned up at the wrong time, i have forgotten appointments completely {this was the point where the nurses worried that i was late for their appointment tried to contact me and Joe received a very stern call from the receptionist telling him that he must get me to call asap, when i finally turned up the chemo nurses told me that if i hadn't called back they were about to send the police out to track me down to make sure i was ok!} but i have never before turned up on the wrong day!.
When i arrived at the clinic i found that i should have been there on the 22nd but i asked if i could be seen today and the registrar Mr Smith who i have seen a number of times now and who knows my case, kindly agreed to see me at the end of the clinic at 5pm so i went shopping in the meantime.
I returned and he met with me and explained as i had thought that the tumours were a bit bigger, the biggest on my lungs is now 9mm which is still small in the scheme of things. There are signs of rectal thickening and certainly my bowels haven't been the best they could be.
I asked if my op could be reconsidered, the story to this succinctly being that this time last year i was having radiotherapy with a view to having a major op to remove the pelvic mets.
Unfortunately Guys and Lewisham weren't communicating too well and the surgeon at Guys was all for doing the surgery and getting rid of the cancer. My onco when he found my name on the radio list changed the dosage and in January told me that he didn't think i should have the op as my lungs were more of a worry.
So here i am with the pelvic mets causing more of a problem. The surgery is being considered by Mr Smith, however i know that the MDT may decide against it.
It is called a pelvic excenteration and involves removing everything that i can do without from the pelvic cavity.....but i am up for that, if it means more time with my boys then bring it on! As i said to Mr Smith i am strong and able to deal with the op.... i have done it before i can do it again. I may have to have a bag, i may not, i shall face these things when i have to if i get the opportunity.
It was interesting that Mr Smith did a little calculation without really thinking i think about me being there and it is fine, but he seemed to calculate 12 months before the lungs start affecting me and so was looking at this as a reason for the op to improve quality of life until then, then he made another suggestion that pelvic tumours can be difficult and painful..i am sure they are which is why i wanted the bugger gone in the first place!
As a doc he is very good a quiet plain young man who initially i felt was wishy washy and was reluctant to see him when Ben the quintessentially handsome tall medic was available too and was charming and had great social skills......but he left and Mr Smith stayed and i found that he was supportive, sweet, knowledgeable and slightly shy i guess.
Anyway we shall see what transpires he will see the team next week and call me i will still keep the appointment i have on the 22nd. I am glad that i got this sorted now and didn't have to wait another 2 weeks knowing that something is up.
I spoke to Joe this evening about it and he asked when i would tell his brothers, I am feeling that the time is coming to be honest with them so that they do have a reasonable time to adjust to the news that i am not going to get cured of this. There never seems a good time to tell them, Adam is doing A levels Zak is in year 8 my aim has always been to see him to 18 at least, that benchmark of him turning into an adult ......still possible in my head but i also need to be realistic too in terms of getting things sorted and at the right time. I wonder whether i should tell them before Christmas in case it is my last or after Christmas so that they can enjoy it without my illness in the background, Zak turns 13 on the 22nd Nov too so leave a window of opportunity leading up to Christmas is that fair? I think after Christmas during half term....oh i don't know but i am sure i will work out when.
We also discussed chemo options whether to have it before the op which might then render me to weak to deal with it but may reduce the tumour or soon whilst i am feeling well after having the chemo....i also have an option to have a bit more radio too....i shall leave it to the MDT.
In this situation i feel like i would like to be there when the MDT discuss my situation but i guess better without and Mr Smith knows my feelings on the matter that i would like to have the op.....like being the operative word!
After i left around 6pm i headed to the car park and just as i was about to pay the parking noticed a lot of people milling around, more than usual and suddenly clicked that this was the night of the meeting around the proposed closure of Lewisham's A&E services. The govt commissioned a report into how they could deal with the financial crisis at other hospitals in Greenwich Bexley ad Bromley his solution is to divert all A&E needs for he area to Woolwich, which would take at least half hour in an ambulance with blues and twos, and anyone who wanted to visit you there would have to trek miles and well the whole thing is idiotic but he will make his representation to Jeremy Hunt in February if we can't convince him to change his recommendations.
So i ended up marching half a mile up the road to the calabash centre as the room booked at the hospital couldn't hold the amount of people who had turned up!
The meeting was militant and emotive with speakers from the health service in the first half and then they swopped so that we then got the mayor of lewisham and Heidi Alexander one of the local MP'S there were about 5 other people that i knew there and hopefully we will do some information awareness in the local area.
Over the last month or so my pelvic tumour was making itself known again with some bleeding certainly whilst on the chemo this had stopped and i was also having some period like pains here and there....nothing i couldn't manage.
So i had my scan and with the symptoms on my mind may have subconsciously decided to go on the wrong day, i have turned up at the wrong time, i have forgotten appointments completely {this was the point where the nurses worried that i was late for their appointment tried to contact me and Joe received a very stern call from the receptionist telling him that he must get me to call asap, when i finally turned up the chemo nurses told me that if i hadn't called back they were about to send the police out to track me down to make sure i was ok!} but i have never before turned up on the wrong day!.
When i arrived at the clinic i found that i should have been there on the 22nd but i asked if i could be seen today and the registrar Mr Smith who i have seen a number of times now and who knows my case, kindly agreed to see me at the end of the clinic at 5pm so i went shopping in the meantime.
I returned and he met with me and explained as i had thought that the tumours were a bit bigger, the biggest on my lungs is now 9mm which is still small in the scheme of things. There are signs of rectal thickening and certainly my bowels haven't been the best they could be.
I asked if my op could be reconsidered, the story to this succinctly being that this time last year i was having radiotherapy with a view to having a major op to remove the pelvic mets.
Unfortunately Guys and Lewisham weren't communicating too well and the surgeon at Guys was all for doing the surgery and getting rid of the cancer. My onco when he found my name on the radio list changed the dosage and in January told me that he didn't think i should have the op as my lungs were more of a worry.
So here i am with the pelvic mets causing more of a problem. The surgery is being considered by Mr Smith, however i know that the MDT may decide against it.
It is called a pelvic excenteration and involves removing everything that i can do without from the pelvic cavity.....but i am up for that, if it means more time with my boys then bring it on! As i said to Mr Smith i am strong and able to deal with the op.... i have done it before i can do it again. I may have to have a bag, i may not, i shall face these things when i have to if i get the opportunity.
It was interesting that Mr Smith did a little calculation without really thinking i think about me being there and it is fine, but he seemed to calculate 12 months before the lungs start affecting me and so was looking at this as a reason for the op to improve quality of life until then, then he made another suggestion that pelvic tumours can be difficult and painful..i am sure they are which is why i wanted the bugger gone in the first place!
As a doc he is very good a quiet plain young man who initially i felt was wishy washy and was reluctant to see him when Ben the quintessentially handsome tall medic was available too and was charming and had great social skills......but he left and Mr Smith stayed and i found that he was supportive, sweet, knowledgeable and slightly shy i guess.
Anyway we shall see what transpires he will see the team next week and call me i will still keep the appointment i have on the 22nd. I am glad that i got this sorted now and didn't have to wait another 2 weeks knowing that something is up.
I spoke to Joe this evening about it and he asked when i would tell his brothers, I am feeling that the time is coming to be honest with them so that they do have a reasonable time to adjust to the news that i am not going to get cured of this. There never seems a good time to tell them, Adam is doing A levels Zak is in year 8 my aim has always been to see him to 18 at least, that benchmark of him turning into an adult ......still possible in my head but i also need to be realistic too in terms of getting things sorted and at the right time. I wonder whether i should tell them before Christmas in case it is my last or after Christmas so that they can enjoy it without my illness in the background, Zak turns 13 on the 22nd Nov too so leave a window of opportunity leading up to Christmas is that fair? I think after Christmas during half term....oh i don't know but i am sure i will work out when.
We also discussed chemo options whether to have it before the op which might then render me to weak to deal with it but may reduce the tumour or soon whilst i am feeling well after having the chemo....i also have an option to have a bit more radio too....i shall leave it to the MDT.
In this situation i feel like i would like to be there when the MDT discuss my situation but i guess better without and Mr Smith knows my feelings on the matter that i would like to have the op.....like being the operative word!
After i left around 6pm i headed to the car park and just as i was about to pay the parking noticed a lot of people milling around, more than usual and suddenly clicked that this was the night of the meeting around the proposed closure of Lewisham's A&E services. The govt commissioned a report into how they could deal with the financial crisis at other hospitals in Greenwich Bexley ad Bromley his solution is to divert all A&E needs for he area to Woolwich, which would take at least half hour in an ambulance with blues and twos, and anyone who wanted to visit you there would have to trek miles and well the whole thing is idiotic but he will make his representation to Jeremy Hunt in February if we can't convince him to change his recommendations.
So i ended up marching half a mile up the road to the calabash centre as the room booked at the hospital couldn't hold the amount of people who had turned up!
The meeting was militant and emotive with speakers from the health service in the first half and then they swopped so that we then got the mayor of lewisham and Heidi Alexander one of the local MP'S there were about 5 other people that i knew there and hopefully we will do some information awareness in the local area.
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