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.
Joe 10 Adam 6 Zak 2
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!
Zak 11
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 5
Zak 13
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.
Zak 8
He is lovely though with his big brown eyes and shock of curly hair, a heart breaker in the making!

Wednesday 21 November 2012

This one's for Suzanne......Cousins

Me and Suzanne.
Suzanne wanted to know when she would appear, so this is her spot.

I have Six first cousins and none of them live in England!!!

Me Auntie Joan, Uncle Joe and John
John and his mandolin
John is the son of my mum's brother. We are at opposite ends of the scales he being the oldest cousin and me being the youngest. John grew up loving wildlife and music and to that end departed to Scotland a number of years ago to become Senior Countryside Ranger at Calderglen Country Park. He plays mandolin in a folk band called Cockalorum. He is the cousin i know least, i was the bridesmaid at his sisters wedding in 1973 and never saw him again until his dad became ill in 2006 i was with my cousins and aunt at the hospital the day he died and later saw him again at the funeral. We got on very well at that point i guess the years that were between us until then had melted away and i am now in contact with him more especially since Auntie Joan died in 2009. He is now in the process of selling up and moving to the isle of Skye with his girlfriend Carmen, even further! away.

This is Val
Valerie is John's sister, she was the only bridesmaid at my mum and dad's wedding and i in turn was the only one at hers. out of all my cousins we are the most alike, in looks and in character. Val's daughter came over a few years ago and couldn't get over how alike we were. Oh Val emigrated to South Africa after marrying in 1973.
And this is me
Val and Melinda who has the genes too.
For a few years before her parents died Val would come over and do some work for an agency supporting people in their own homes over the summer, this gave her the opportunity to visit her parents and earn some money too. Val divorced from her husband after having two daughters Melinda and Sandy, she spends the majority of her time with the local church. Val graduated from the guildhall school of music as an opera singer and continues to play guitar and various other instruments whilst singing for the church, i have an album of worship songs that she made. Val is lovely, there are ten years between us but again the age gap that was there when i was a child has gone. It's a shame that we are so far away from each other but we text now and again. Oh and the things that make us alike....timekeeping, leaving things till the last minute, Val was still making her wedding dress the night before her wedding! Not wearing shoes, whilst clearing her mums flat after her death we both trotted up and down stairs barefoot. Music though our tastes vary and looks we are very much alike especially now we both have short and grey hair.
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
Katherine, dad's older brother Gerald moved to Paris soon after the end of the second world war, he met my Aunt Annie there during the liberation of Paris. Katherine is the same age as Val and there is a photo of her and Val on another post when they both visited in the sixties. In my teens i spent a lot of time in Paris visiting them after staying in Ramboulliet with a pen friend. At that point i knew Paris far better than i knew London. Over last year Uncle Gerald was unwell and we got into a habit of emailing each other and sadly he passed away in December. Auntie Annie therefore is the last of my aunts and uncles remaining she is 93 her mother lived to 100 so i imagine she is going to be around a while longer.
Stephen on the right with Helen and Keith Winnie and me 
Stephen This is the oldest child of my dad's youngest brother John, who married Winnie i think first or second cousin to him through her mum's father. He is an interesting individual, he works in a tax office in Australia and lives about an hour's drive down from Sydney. He likes Shakespeare, medieval music and world war history amongst other things. He is the clumsiest person i know, and someone with loads of knowledge and no common sense. He has visited the UK a few times in the 90's but is not the easiest house guest to have. But he is my cousin and i keep in contact with him infrequently now because he doesn't seem to have internet access at home.
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.
Richard and Helen
Helen is Keith and Stephen's sister. I don't have as much contact only through Facebook, she has two boys Joel and Simeon and is married to Richard, i only found out a while back that we shared the same initials HJW she saved me from the name Helen so i got Hazel instead, which i prefer. She was two on the day my parents married which makes her my nearest cousin at 3 years older. Unfortunately she doesn't get on with Keith and they don't speak. Her and her husband moved to Hong Kong about three years ago to do mission work. Er i didn't take to her husband when i met them in 1997.
So that's it my cousins!!!!........................

Janet
Zak and Walter
Ok so there is!!! one more......she isn't my first cousin though, she is my second cousin i think, anyway her mum Janet was my dad's cousin. Suzanne and i share great grandparents, Her grandad was my grandmothers brother.
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

Suzanne and Brother Derek
Suzanne
I think where we got to know each other better....and Suzanne i am sure you will correct me if i am wrong is after i got married, i took pics down and then Mum and Dad moved to North Yorkshire and would visit me and whenever they did we would go down to Sussex too. Then we realised how well we got on not least because only  6 months after my Joe was born Suzanne had Percy. Then she had Fred in 95 and i had Adam in 96........ then i called her to let her know i was pregnant again and she said well so am i!!!! and Walter was born a week to the day before Zak in November. So we both had three boys around the same ages. She lives in a beautiful area of Sussex, and i live in the City. She had support with childcare where i had none, my boys basically no medical issues, Suzannes boys.....well where do i start!!!!????? They certainly make use of their NHS! Our boys don't get on as well as we do, in fact there was a time when they positively disliked each other!..well Adam and Percy. I lie Zak and Walter get on when they are together very well.
Walter
Suzanne over the years has become more like the sister each of us never had. She lives not too far away unlike all my other cousins! and for me is the only family outside of my boys that i have left here. We have never argued, though Suzanne will tell me what is what and that is fine with me, she knows me too well and she knew my parents well which is helpful when wondering what to do sometimes.
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.
Me and Suz my thin years and a year before finding out i had cancer
We are quite capable of talking about tough things without us generating into tears and more often able to have a great laugh together. So there you are my sister from another mother and the closest to me of all my cousins.

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.


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

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
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!

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!!

Me and Caroline from school
So at 5am on the 25th October this year 2012 i made it to fifty!!!! i am quite happy to reach this milestone even more so since being diagnosed. Every time i see an older person i think how lucky are you!! to still be here and to see your children grown and your grandchildren and to know that if you die today that although they will be sad they are positioned to be able to cope as they are adults and this is how life is our parents go before us but not until they have spent a good amount of time with us.
All my friends from Beating Bowel Cancer
I don't know either
Anyway as usual i left things to the last minute. I arrived back from Florida on the 23rd Florida will appear in another post and spent the 23rd surviving jet lag. On the 24th i did more surviving and then on the 25th my actual birthday started to bake for the party as i had left that too late to out source but i like baking so it was ok. First were 100 vodka jellies using a litre and a half of vodka then about 100 profiteroles from scratch then bed the following day i made lemon cupcakes and got a few more bits and pieces luckily i had the presence of mind to ask a friend to do some food and she made a load of chicken pieces and potato salad and coleslaw for me.
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!
Dafyyd and I
I managed to get everything out and hook my i pod up to the PA and we were away!
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.
Not drunk just busting some moves!
I danced most of the night and tried to spend time with everyone who came. Lorna made me a huge and gorgeous cake but i didn't get to cut it in time to give everyone a piece! Joe announced the singing of Happy Birthday and ended up dancing with me in front of everyone which was quite fun and everyone said what a lovely boy he is.....which is true! I got sooo many presents which was lovely but not what the evening was about i just wanted to celebrate making 50 with good friends.

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.