Yesterday I found out that I have a couple of readers that I wasn't aware of ....you know who you are and I just wanted to say 'Welcome to my world' :-))
Everyone and anyone is welcome to comment on anything they read on my blog. I'm glad you guys found it interesting and as time goes on hopefully less upsetting for you and more uplifting - fingers crossed.
I've had the offer of good quality home grown veg now from one of my anonymous readers and some relaxation sessions too. Thank you xx
Life can only get better eh.
About Me
- Carole
- I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..
Saturday 31 July 2010
Since my last post.....
Since the last post I've been doing 'stuff' - not exciting stuff as such but necessary stuff.
Cancer changes some things but life goes on in much the same way as before, you still have to deal with the day to day things in life and to be honest it's good to have normality.
Just when you think that financially things can't really get worse the damn boiler decides it's finally had enough. Totally and completely died on Monday, no warning just...gone, finished.
Two years ago we spent a small fortune getting it working again so this time that's just not an option. Therefore my week has been spent contacting tradesmen, plumbing/heating engineers and sorting out quotes for a replacement.
We finally decided on the one we were happy with and it's being fitted on Monday. So that's taken up a chunk of my week.
Now there's a positive and a negative way of looking at the boiler's death...firstly the negative is, of course, the cost!
But the positive is that at least it's summer now and no heating hasn't been a real pain.... Also it COULD have decided to give up on us when I got out of hospital and needed a constant supply of hot water or even worse during my recuperation period - which goes into the winter months and then we'd have had no heating or hot water.
So after weighing it up, I'm glad it's happened now and not then.
Went off to Morden Park on Thursday afternoon with Sarah and Dj. The idea was to try to find natural resources for his art project that he's doing for his new Secondary School. They wanted a piece of homework on 'You' - it could be a written piece, painting, drawing, model, power point document, but had to reflect themselves and provide some information.
Dj decided he wanted to create a piece of art by enlarging a photo of himself then covering it (mosaic style) in things like bark, leaves, plants and then have some bubbles around with information such as 'I like....' and 'I dislike......'.
His new school are heavily into art so that seemed a good idea.
So off we went, armed with a very healthy picnic to eat in the summer air and hunt for resources. Only things didn't exactly turn out like that!
3 bites into a sandwich I suddenly realised that I'd left my lentils simmering on a low heat in the kitchen at home - sheer panic! We'd left home at 2.30pm and it was now 4pm OMG! Visions of the flat burning to the ground, worse still our gorgeous little Dizzie suffocating to death in thick fumes.
Now I can look back laugh about it - it was like something out of a comedy film...
I throw my sandwich down, jump up and say
'Oh my God! I have to go NOW!' ......
Sarah jumps up and says 'Ok, lets go then' (no questions at all, just Ok let's go then - LOL)...
Dj (bless him) looks completely confused and say's 'WHAT on earth is going on?'...
I say (well, babble nonsense really) to Sarah...Stay here with Dj, I'm going on the train it's faster, my lentils are cooking in my kitchen, my cat is going to suffocate and my kitchen must be on fire by now...
She say's 'Ring Jacqui and go quickly'....So I ring Jacqui - I have no idea what I expected her to do, but I rang her anyway. Jacqui being her normal sensible self says 'I'm going to check your place, you get on the train, I'll sort it out'...
I'm sitting on the tube waiting for it to move thinking I'm going to throw up at any second now if this bloody train doesn't start moving when I suddenly realise that I can feel so much discomfort from the tumour site. This area has been OK lately, but at this moment I realise the pain, discomfort and therefore the tumour are definitely still there.
I'm not sure which I'm more upset about at this point but to be honest I think it was the idea of Dizzie choking to death (I knew I wouldn't be lucky enough to be free of this damn tumour really - I'd just been trying to kid myself).
Jacqui rang me just before the train left Morden and told me she's outside my place, no smoke coming from the windows, no smoke alarm going off and no Dizzie frantically pawing at the window - this reassures me that I've got at least enough time to get back before too much damage is done. I arrive home about 20 minutes later to find that (unbelievably and luckily) there is STILL water left in the pot so panic over.
One thing I'm now sure of is that stress DEFINITELY is linked to pain.
I've seen Sarah everyday which has been lovely and was what I needed to start sorting out my head a little. It's been good to be able to bounce ideas off her and listen to her suggestions too. For instance, I was really struggling with one of the supplements, the Superfood (it was making me feel so sick) and she suggested a different way to get it down and it's worked. Sometimes you need someone else to say 'try this instead'...Thanks Sis x
Sarah actually tried some and said it tastes like drinking the contents of a dirty fish tank so it must be good for you, because anything that tastes like this must be good... LOL....
Cancer changes some things but life goes on in much the same way as before, you still have to deal with the day to day things in life and to be honest it's good to have normality.
Just when you think that financially things can't really get worse the damn boiler decides it's finally had enough. Totally and completely died on Monday, no warning just...gone, finished.
Two years ago we spent a small fortune getting it working again so this time that's just not an option. Therefore my week has been spent contacting tradesmen, plumbing/heating engineers and sorting out quotes for a replacement.
We finally decided on the one we were happy with and it's being fitted on Monday. So that's taken up a chunk of my week.
Now there's a positive and a negative way of looking at the boiler's death...firstly the negative is, of course, the cost!
But the positive is that at least it's summer now and no heating hasn't been a real pain.... Also it COULD have decided to give up on us when I got out of hospital and needed a constant supply of hot water or even worse during my recuperation period - which goes into the winter months and then we'd have had no heating or hot water.
So after weighing it up, I'm glad it's happened now and not then.
Went off to Morden Park on Thursday afternoon with Sarah and Dj. The idea was to try to find natural resources for his art project that he's doing for his new Secondary School. They wanted a piece of homework on 'You' - it could be a written piece, painting, drawing, model, power point document, but had to reflect themselves and provide some information.
Dj decided he wanted to create a piece of art by enlarging a photo of himself then covering it (mosaic style) in things like bark, leaves, plants and then have some bubbles around with information such as 'I like....' and 'I dislike......'.
His new school are heavily into art so that seemed a good idea.
So off we went, armed with a very healthy picnic to eat in the summer air and hunt for resources. Only things didn't exactly turn out like that!
3 bites into a sandwich I suddenly realised that I'd left my lentils simmering on a low heat in the kitchen at home - sheer panic! We'd left home at 2.30pm and it was now 4pm OMG! Visions of the flat burning to the ground, worse still our gorgeous little Dizzie suffocating to death in thick fumes.
Now I can look back laugh about it - it was like something out of a comedy film...
I throw my sandwich down, jump up and say
'Oh my God! I have to go NOW!' ......
Sarah jumps up and says 'Ok, lets go then' (no questions at all, just Ok let's go then - LOL)...
Dj (bless him) looks completely confused and say's 'WHAT on earth is going on?'...
I say (well, babble nonsense really) to Sarah...Stay here with Dj, I'm going on the train it's faster, my lentils are cooking in my kitchen, my cat is going to suffocate and my kitchen must be on fire by now...
She say's 'Ring Jacqui and go quickly'....So I ring Jacqui - I have no idea what I expected her to do, but I rang her anyway. Jacqui being her normal sensible self says 'I'm going to check your place, you get on the train, I'll sort it out'...
I'm sitting on the tube waiting for it to move thinking I'm going to throw up at any second now if this bloody train doesn't start moving when I suddenly realise that I can feel so much discomfort from the tumour site. This area has been OK lately, but at this moment I realise the pain, discomfort and therefore the tumour are definitely still there.
I'm not sure which I'm more upset about at this point but to be honest I think it was the idea of Dizzie choking to death (I knew I wouldn't be lucky enough to be free of this damn tumour really - I'd just been trying to kid myself).
Jacqui rang me just before the train left Morden and told me she's outside my place, no smoke coming from the windows, no smoke alarm going off and no Dizzie frantically pawing at the window - this reassures me that I've got at least enough time to get back before too much damage is done. I arrive home about 20 minutes later to find that (unbelievably and luckily) there is STILL water left in the pot so panic over.
One thing I'm now sure of is that stress DEFINITELY is linked to pain.
I've seen Sarah everyday which has been lovely and was what I needed to start sorting out my head a little. It's been good to be able to bounce ideas off her and listen to her suggestions too. For instance, I was really struggling with one of the supplements, the Superfood (it was making me feel so sick) and she suggested a different way to get it down and it's worked. Sometimes you need someone else to say 'try this instead'...Thanks Sis x
Sarah actually tried some and said it tastes like drinking the contents of a dirty fish tank so it must be good for you, because anything that tastes like this must be good... LOL....
Monday 26 July 2010
Feeling well !!!
Ok, so this is probably not what you were expecting to hear....I'm feeling ridiculously well at the moment, no pain, no real discomfort to mention, no longer thinking about the damage caused by Radiotherapy (although internally it's still slightly uncomfortable at times).
I've been eating my healthy food, taking my (huge amount of) healthy supplements and it's obviously working because if it wasn't the summer holidays now I'd be asking to be signed off sick and be allowed to go back to work. Luckily it is the summer hols :-))
My Sister is here, she arrived on Wednesday and we got together on Thursday and every day since then.
On Saturday we all went on a day out to Golders Green park, lovely little park that not many people seem to have heard of unless they live in the area.
Auntie Sarah and Dj enjoying the walk in the park
We found it by accident last Easter (2009) and Dj had wanted to go back ever since mainly because they have this massively overgrown area behind the park where you can see and hear birds that you never usually find in London.
Wild Rosemary grows in abundance along with Wild Garlic, Thyme and lots of other plants..... *but this time we didn't go the 'Rosemary' way as we were exploring a different area*
A few weeks ago going to Sainsbury's exhausted me beyond belief - Saturday I spent 7 hours out of the house, walking in the summer sunshine and just taking in all the smells of various plants, hearing the birds, at times just listening to the silence....I came back tired but no pain and to be honest, no more tired than anyone else.
After walking miles and miles in the park we decided to stop off at a decent looking Italian restaurant on the way home....Here's Dj's impression of Charlie Chaplin (the restaurant was called 'Charlie's'....:-)
Off to drink some more Wheatgrass now and take my Algae :-)
Big loud 'Pah'! to all those who said I wouldn't feel better by making my own improvements. Just got to hope the scans show a massive difference now - keep your fingers crossed for me.
I've been eating my healthy food, taking my (huge amount of) healthy supplements and it's obviously working because if it wasn't the summer holidays now I'd be asking to be signed off sick and be allowed to go back to work. Luckily it is the summer hols :-))
My Sister is here, she arrived on Wednesday and we got together on Thursday and every day since then.
On Saturday we all went on a day out to Golders Green park, lovely little park that not many people seem to have heard of unless they live in the area.
Auntie Sarah and Dj enjoying the walk in the park
We found it by accident last Easter (2009) and Dj had wanted to go back ever since mainly because they have this massively overgrown area behind the park where you can see and hear birds that you never usually find in London.
Wild Rosemary grows in abundance along with Wild Garlic, Thyme and lots of other plants..... *but this time we didn't go the 'Rosemary' way as we were exploring a different area*
A few weeks ago going to Sainsbury's exhausted me beyond belief - Saturday I spent 7 hours out of the house, walking in the summer sunshine and just taking in all the smells of various plants, hearing the birds, at times just listening to the silence....I came back tired but no pain and to be honest, no more tired than anyone else.
After walking miles and miles in the park we decided to stop off at a decent looking Italian restaurant on the way home....Here's Dj's impression of Charlie Chaplin (the restaurant was called 'Charlie's'....:-)
Off to drink some more Wheatgrass now and take my Algae :-)
Big loud 'Pah'! to all those who said I wouldn't feel better by making my own improvements. Just got to hope the scans show a massive difference now - keep your fingers crossed for me.
Wednesday 21 July 2010
Diet, supplements, nutrition and more advice :-)
As you know now I've been researching diet, nutrition and and supplements for the past few weeks.
What this has made me realise is that even if I HAVE to go ahead and have the full op done in September (or whenever) I need to ensure my body is operating at peak performance as this will assist in my recovery time.
Doctors have warned me that this operation usually takes at least 4 months to start recovering from so I figure if I'm healthy then maybe my time to get (literally) back on my feet can be at least a little faster.
Also I'm still working on the added advantage that maybe it will assist with reducing the tumour and maybe I won't have to have the 'full' op.
Last night I had a consultation with a Doctor who deals with nutrition, supplements and holistic care.
She has discussed with me at length the supplements that I need to put into place (some I already had, others are now additional) and a large part of this will involve Wheatgrass, superfoods, Algae, and a healthy diet rich in nutrients.
Now, what harm can this possibly do? ;-) It's making me feel better, I'm back in control and taking responsibility for my own health and recovery time - all good.
She has also suggested that I should be contacting my GP and asking to be referred for a 2nd opinion as the surgery currently being discussed is so very drastic. She feels that I will be able to face the operation with more acceptance if I receive a 2nd opinion and it is the same as the 1st - I'm in agreement with that so I shall be seeing my GP this week and requesting that they organise this.
Doctor K is also putting me in touch with another patient of hers, living in London with rectal cancer who is a similar age to me.
Initially this patient was told she would have to have the full APR surgery and permanent colostomy bag - however since being referred to another Doctor and having her 2nd opinion consultation, he felt that there was another less drastic option available to her.
I'm looking forward to having a chat and seeing if there are enough similarities between our cases - either way I think a 2nd opinion is a good idea.
My sister arrives today - I'm so pleased about that. I wanted her to come over so much but it didn't make any sense for her to rush straight over.
It's the summer season now in Greece and M needed to get into his working routine - now that he has hopefully he'll manage ok without my sister for a few days :-)
James and Leanne are due back from Ibiza today - hope they're both OK after their robbery disaster :-( and managed to enjoy the rest of the break regardless
(More than anything, hope they had insurance - considering J's job I'd assume they would have)
Apart from that, last week of Primary school for Dj this week. Leaver's assembly on Thursday afternoon which he's actually agreed to take part in this year!
Hopefully good weather will continue over the weekend and I shall get out and soak up some 'good for you' Vitamin D :-)
I have tons and tons of stuff to read from Doctor K, need to get a folder and organise everything and ensure I've got my new daily plan into place by Monday.
That's it for now :-)
What this has made me realise is that even if I HAVE to go ahead and have the full op done in September (or whenever) I need to ensure my body is operating at peak performance as this will assist in my recovery time.
Doctors have warned me that this operation usually takes at least 4 months to start recovering from so I figure if I'm healthy then maybe my time to get (literally) back on my feet can be at least a little faster.
Also I'm still working on the added advantage that maybe it will assist with reducing the tumour and maybe I won't have to have the 'full' op.
Last night I had a consultation with a Doctor who deals with nutrition, supplements and holistic care.
She has discussed with me at length the supplements that I need to put into place (some I already had, others are now additional) and a large part of this will involve Wheatgrass, superfoods, Algae, and a healthy diet rich in nutrients.
Now, what harm can this possibly do? ;-) It's making me feel better, I'm back in control and taking responsibility for my own health and recovery time - all good.
She has also suggested that I should be contacting my GP and asking to be referred for a 2nd opinion as the surgery currently being discussed is so very drastic. She feels that I will be able to face the operation with more acceptance if I receive a 2nd opinion and it is the same as the 1st - I'm in agreement with that so I shall be seeing my GP this week and requesting that they organise this.
Doctor K is also putting me in touch with another patient of hers, living in London with rectal cancer who is a similar age to me.
Initially this patient was told she would have to have the full APR surgery and permanent colostomy bag - however since being referred to another Doctor and having her 2nd opinion consultation, he felt that there was another less drastic option available to her.
I'm looking forward to having a chat and seeing if there are enough similarities between our cases - either way I think a 2nd opinion is a good idea.
My sister arrives today - I'm so pleased about that. I wanted her to come over so much but it didn't make any sense for her to rush straight over.
It's the summer season now in Greece and M needed to get into his working routine - now that he has hopefully he'll manage ok without my sister for a few days :-)
James and Leanne are due back from Ibiza today - hope they're both OK after their robbery disaster :-( and managed to enjoy the rest of the break regardless
(More than anything, hope they had insurance - considering J's job I'd assume they would have)
Apart from that, last week of Primary school for Dj this week. Leaver's assembly on Thursday afternoon which he's actually agreed to take part in this year!
Hopefully good weather will continue over the weekend and I shall get out and soak up some 'good for you' Vitamin D :-)
I have tons and tons of stuff to read from Doctor K, need to get a folder and organise everything and ensure I've got my new daily plan into place by Monday.
That's it for now :-)
Sunday 18 July 2010
The path to follow........
Over the past months since being diagnosed I've talked sometimes about the colostomy bag, removal of large parts of my body and how I'm not really dealing with the thought of all that too well :-(
I've tried to put it all to one side but to be quite honest, it's not possible to sideline this....it's always there in the back of my mind and as much as I try to push it back. it just resurfaces again.
I have these continual questions that surface again and again, such as what if they do this huge operation and this damn cancer reappears in my liver or lungs or bones or brain...I'd have had the op for nothing because the battle would start all over again with far less chance of sorting it out...
Other questions such as, in the US I'm finding information about giving 25 sessions of Radiotherapy and combined Chemo to SAVE the rectum/anus and concentrate on removing the much smaller tumour once it's shrunk. Here we're giving this huge amount of Chemo/Radiotherapy in order to then remove the rectum - no intention of saving anything.
I asked this question before my treatment started and the answer truly shocked me....
'Is there any chance that the Chemo and Radiotherapy could shrink this tumour enough to enable the rectum to be saved and just have the tumour removed with a decent safe margin?'
The reply was 'There have been cases where the tumour has virtually disappeared after treatment but it's unlikely that your surgeon would be prepared to take the chance on not removing the rectum just incase a single cell is missed and then the tumour could resurface'
He then went on to explain to me that there have been cases where the whole rectum and anus is removed and NO remaining cancer is found!
I don't know if that information just shocked you, but it definitely shocked me!
That information then gave me something to think about because quite frankly I'm not having a large part of my body removed 'just in-case'..that's like saying 'We'll take your eye in-case you go blind later on'....
I know that some people are going to find this hard to understand but I'm not prepared to have the operation under those circumstances. I've now decided that there are set circumstances that I AM prepared to have this surgery under which is:
Over the past few weeks I've researched everything I can on Cancer and Diet and there seem to be many connecting factors. Numerous information from different sources out there are continually pointing to the fact that you CAN make a difference by diet. The same food groups and supplements are mentioned again and again and it has to be more than just co-incidence?
I'm not saying I can 'cure' myself of cancer (although maybe I can, other people have done so in the the past) what I am saying is that this is a slow growing cancerous tumour, I've had it for years now and it's not going to kill me overnight - therefore surely I have time on my side to try to get it into remission myself or at least try to get it considerably smaller so that it's not affecting my life drastically or becoming life threatening by growing to a size where it will block the bowel.
I've tried to put it all to one side but to be quite honest, it's not possible to sideline this....it's always there in the back of my mind and as much as I try to push it back. it just resurfaces again.
I have these continual questions that surface again and again, such as what if they do this huge operation and this damn cancer reappears in my liver or lungs or bones or brain...I'd have had the op for nothing because the battle would start all over again with far less chance of sorting it out...
Other questions such as, in the US I'm finding information about giving 25 sessions of Radiotherapy and combined Chemo to SAVE the rectum/anus and concentrate on removing the much smaller tumour once it's shrunk. Here we're giving this huge amount of Chemo/Radiotherapy in order to then remove the rectum - no intention of saving anything.
I asked this question before my treatment started and the answer truly shocked me....
'Is there any chance that the Chemo and Radiotherapy could shrink this tumour enough to enable the rectum to be saved and just have the tumour removed with a decent safe margin?'
The reply was 'There have been cases where the tumour has virtually disappeared after treatment but it's unlikely that your surgeon would be prepared to take the chance on not removing the rectum just incase a single cell is missed and then the tumour could resurface'
He then went on to explain to me that there have been cases where the whole rectum and anus is removed and NO remaining cancer is found!
I don't know if that information just shocked you, but it definitely shocked me!
That information then gave me something to think about because quite frankly I'm not having a large part of my body removed 'just in-case'..that's like saying 'We'll take your eye in-case you go blind later on'....
I know that some people are going to find this hard to understand but I'm not prepared to have the operation under those circumstances. I've now decided that there are set circumstances that I AM prepared to have this surgery under which is:
- When I meet with the surgeon and his team on the 25th August and we discuss the latest MRI/CT scan results IF there has been NO reduction whatsoever in the tumour then I accept that I have no choice and have to go ahead with the op early September as planned
- If the tumour is actually larger than it was in April - no choice other than to go ahead with the op, early September.
Over the past few weeks I've researched everything I can on Cancer and Diet and there seem to be many connecting factors. Numerous information from different sources out there are continually pointing to the fact that you CAN make a difference by diet. The same food groups and supplements are mentioned again and again and it has to be more than just co-incidence?
I'm not saying I can 'cure' myself of cancer (although maybe I can, other people have done so in the the past) what I am saying is that this is a slow growing cancerous tumour, I've had it for years now and it's not going to kill me overnight - therefore surely I have time on my side to try to get it into remission myself or at least try to get it considerably smaller so that it's not affecting my life drastically or becoming life threatening by growing to a size where it will block the bowel.
So if it's reduced in size I intend on asking them for more time to see if I can make a difference before signing on the dotted line and allowing them to go ahead with the op. I owe it to myself to try IF it's smaller on the MRI scans.
I don't intend to play with my life here, if it's still large or worst case senario 'larger' than before, then I'll be a good patient and do as I'm told.
I don't intend to play with my life here, if it's still large or worst case senario 'larger' than before, then I'll be a good patient and do as I'm told.
Maybe you're sitting there thinking now 'She's lost it' 'Gone mad' 'Silly to take a chance like that' but I'm not bothered by that to be honest.....time will tell if I've 'lost it or not'.
For the past few weeks I've put changes into place food wise and over the last week I've now decided which supplements I think I should be taking in order to try to make things better - From two days after starting to take the supplements I've taken no painkillers at all - nothing. Not even a paracetamol because all of a sudden I've not needed them!
Maybe co-incidence who knows, but I've not needed them and that's relevant at the moment considering I've been on painkillers constantly since November 2009.
Today I've had enough energy to go out for lunch with Rab, clean the kitchen from top to bottom, do numerous loads of washing, sort out dinner later on, and I'm still awake now and have energy left over.
Yesterday my gums suddenly stopped bleeding and I'm seeing no blood whatsoever from other areas now.....the area where the tumour is sited is no longer painful to touch, I can suddenly sit in one position without feeling intense pressure on my spine...
If these improvements are real improvements and this is proved on the results of the MRI/CT scans then I shan't be rushing to have the operation.
Instead I shall be looking into seeing a Doctor who has been recommended to me with regard to nutrition and holistic care, sticking on my healthy eating and supplement plan, and asking them to rescan me in December...
So much now depends on those scan results I guess.
Comments anyone? :-))
Due to popular demand - LOL
As Louise is insisting on knowing about parents evening and Dj's internally marked SAT's results I thought I'd best put up the info in one place....so Lou, this one is especially for you :-)
Parents evening went very well, teacher is full of praise for Dj - pleasure to have in the class, excellent role model, absolutely no behavioural issues ever, always polite and helpful, matured so much over this year, worked exceptionally hard especially at things he found more difficult (writing/punctuation), homework always completed on time and to a high standard....I almost got bored listening it was all so good (not really, just joking on that one of course).
SAT's results were as I expected - based on the tests they did in school (SAT's papers from 2008) and Teacher Assessment (which I'm personally happier with anyway, the teacher knows them well enough to give a fairer overall assessment in my opinion).
So he got Level 5a in Science, 5a Reading, 4a Writing (huge improvement) 4a Maths (big improvement again) Art 5c, Design Tech 5c, History, Geography, Music all 4a, ICT 4b, PE 4c.
To explain the results above.....when children leave primary they are expected to be at secure level 4 (which is 4b) - therefore any subject graded 4a or level 5's are above the level expected.
Dj's only lower mark was in PE (4c) but considering the balance issues that he experienced and the fact he was only discharged from Occupational Therapy a year ago for balance and co-ordination, I'm more than happy with that grade.
He also received 'E' for Excellent effort in all subjects.
Teachers comments: Djamel this year has shown empathy, kindness and positivity in a variety of situations which has been delightful to see. He has many talents which he should be very proud of. Djamel should ensure at Secondary School that he maintains his confidence to allow him to continue to make progress. I have really enjoyed teaching Djamel this year and will miss his unique approach to learning and his jokes! Good luck Djamel!
Headteachers comments: A pleasing report, well done. All the very best in your new school.
Well done Dj xx
Parents evening went very well, teacher is full of praise for Dj - pleasure to have in the class, excellent role model, absolutely no behavioural issues ever, always polite and helpful, matured so much over this year, worked exceptionally hard especially at things he found more difficult (writing/punctuation), homework always completed on time and to a high standard....I almost got bored listening it was all so good (not really, just joking on that one of course).
SAT's results were as I expected - based on the tests they did in school (SAT's papers from 2008) and Teacher Assessment (which I'm personally happier with anyway, the teacher knows them well enough to give a fairer overall assessment in my opinion).
So he got Level 5a in Science, 5a Reading, 4a Writing (huge improvement) 4a Maths (big improvement again) Art 5c, Design Tech 5c, History, Geography, Music all 4a, ICT 4b, PE 4c.
To explain the results above.....when children leave primary they are expected to be at secure level 4 (which is 4b) - therefore any subject graded 4a or level 5's are above the level expected.
Dj's only lower mark was in PE (4c) but considering the balance issues that he experienced and the fact he was only discharged from Occupational Therapy a year ago for balance and co-ordination, I'm more than happy with that grade.
He also received 'E' for Excellent effort in all subjects.
Teachers comments: Djamel this year has shown empathy, kindness and positivity in a variety of situations which has been delightful to see. He has many talents which he should be very proud of. Djamel should ensure at Secondary School that he maintains his confidence to allow him to continue to make progress. I have really enjoyed teaching Djamel this year and will miss his unique approach to learning and his jokes! Good luck Djamel!
Headteachers comments: A pleasing report, well done. All the very best in your new school.
Well done Dj xx
Wednesday 14 July 2010
Improvements..........:-))))
Well it's now a week since I met with Dr L and he agreed no more Radiotherapy treatment due to the burns.
One week on I can now say that there is a great improvement, the external skin is healing and I've not taken any oral morphine since Sunday now.
Any internal burns are going to take a bit longer yet I think, still feels quite sore BUT definitely not unbearably sore like before.
I do think that possibly some damage been caused to my bladder - hopefully it's only temporary - as I have noticed that I'm having to get up regularly during the night (between 1.5 to 2 hrs maximum) to go to the loo...I'm hoping that it's a temporary problem, again due to the Radiotherapy and not permanent damage.
I'm still using the morphine and Nu-gel mixture on the skin as this has definitely helped with the healing process.
I'm tired but not as much as whilst the treatment was going on....if I could get a decent nights sleep I'd probably be a lot less tired! But I've been catching up during the day with an hour here and there when I've needed to.
James and Leanne are away in Ibiza at the moment - Stuart and Jodie are getting married out there this week so hopefully they're having a great time.
Mum and Dad are coming over for dinner this afternoon as Dj finishes school early today (2pm) due to Parents Evening.
Our Parents Evening appointment is tomorrow, we've already received his school report for the year which is (of course, as usual) excellent :-))
Tomorrow we should get his 'SAT's' results (it was 'pretend' SAT's this year in that they were marked internally by the school and not sent off for government data purposes).
I think he should have done pretty well - I'm expecting high Level 4's in English and Maths with secure Level 5 in Science....let's see if I'm right.
His reading level has gone through the roof, last time he was assessed he was at Level 5a which is brilliant (those who know Dj will remember how much he struggled with the whole reading process initially and how much things have changed over the past couple of years)
He's currently reading the 'Warhammer series, Imperial Guard Omnibus' - I thought it might have been a bit difficult for him but he's got into it really quickly...:-)
I always really wanted him to love reading, I used to read loads as a child/teenager and wanted him to have the chance to appreciate books - and he does, so much so that I'm now constantly nagging him at night that it's late and he needs to stop reading (how things change eh) :-)
So, to sum up....I'm coping OK at the moment, sorting things out for the end of term and beginning of the new term in the new school - life is pretty much as it should be and just waiting for the next stages now (scans on the 10th - meeting with surgeon on 25th).
One week on I can now say that there is a great improvement, the external skin is healing and I've not taken any oral morphine since Sunday now.
Any internal burns are going to take a bit longer yet I think, still feels quite sore BUT definitely not unbearably sore like before.
I do think that possibly some damage been caused to my bladder - hopefully it's only temporary - as I have noticed that I'm having to get up regularly during the night (between 1.5 to 2 hrs maximum) to go to the loo...I'm hoping that it's a temporary problem, again due to the Radiotherapy and not permanent damage.
I'm still using the morphine and Nu-gel mixture on the skin as this has definitely helped with the healing process.
I'm tired but not as much as whilst the treatment was going on....if I could get a decent nights sleep I'd probably be a lot less tired! But I've been catching up during the day with an hour here and there when I've needed to.
James and Leanne are away in Ibiza at the moment - Stuart and Jodie are getting married out there this week so hopefully they're having a great time.
Mum and Dad are coming over for dinner this afternoon as Dj finishes school early today (2pm) due to Parents Evening.
Our Parents Evening appointment is tomorrow, we've already received his school report for the year which is (of course, as usual) excellent :-))
Tomorrow we should get his 'SAT's' results (it was 'pretend' SAT's this year in that they were marked internally by the school and not sent off for government data purposes).
I think he should have done pretty well - I'm expecting high Level 4's in English and Maths with secure Level 5 in Science....let's see if I'm right.
His reading level has gone through the roof, last time he was assessed he was at Level 5a which is brilliant (those who know Dj will remember how much he struggled with the whole reading process initially and how much things have changed over the past couple of years)
He's currently reading the 'Warhammer series, Imperial Guard Omnibus' - I thought it might have been a bit difficult for him but he's got into it really quickly...:-)
I always really wanted him to love reading, I used to read loads as a child/teenager and wanted him to have the chance to appreciate books - and he does, so much so that I'm now constantly nagging him at night that it's late and he needs to stop reading (how things change eh) :-)
So, to sum up....I'm coping OK at the moment, sorting things out for the end of term and beginning of the new term in the new school - life is pretty much as it should be and just waiting for the next stages now (scans on the 10th - meeting with surgeon on 25th).
Friday 9 July 2010
Amusing things......
Just thought I'd share this thought with you all.
Dj always manages to make me smile, sometimes it's not intentional at all but it just happens that way.
The other day we were looking through some old photographs because he needed to take one of himself (as a baby or toddler) into school for a project he's currently doing 'Growth and Change' - which is the modern version of Year 6 Sex Education.
So we're browsing through lots of old photographs and he finds one of my nan (mum's mum - Edna Lea) and asks what did she die of mummy?
I told him she had breast cancer and unfortunately because it was so long ago they didn't really have so many options for treating her as they maybe would have done nowadays.
He then asked 'How old was she when she died?'....I told him she was 44 years old and he replied 'Blimey, you've had a long life compared to her then eh'....:-)))) LOL
One day I shall write a book and put all his little one-liners and amusing thoughts down in one place
Another one that comes to mind was recently when he came into the kitchen looking deep in thought and said
'It's a terrible world we live in isn't it? Some people are prepared to kill other people for stupid reasons...it was on the news that they are looking for a man who is killing people over breakfast stuff'....???
I asked him what he meant, what had he heard and he said
'It's TRUE mummy, they are looking for someone who is killing people over breakfast cereals'......
I laughed and said 'I think you'll find they're looking for a serial killer?'....
Him - big dramatic SIGH........'YES, well that's exactly what I said isn't it'
Again LOL.
Dj always manages to make me smile, sometimes it's not intentional at all but it just happens that way.
The other day we were looking through some old photographs because he needed to take one of himself (as a baby or toddler) into school for a project he's currently doing 'Growth and Change' - which is the modern version of Year 6 Sex Education.
So we're browsing through lots of old photographs and he finds one of my nan (mum's mum - Edna Lea) and asks what did she die of mummy?
I told him she had breast cancer and unfortunately because it was so long ago they didn't really have so many options for treating her as they maybe would have done nowadays.
He then asked 'How old was she when she died?'....I told him she was 44 years old and he replied 'Blimey, you've had a long life compared to her then eh'....:-)))) LOL
One day I shall write a book and put all his little one-liners and amusing thoughts down in one place
Another one that comes to mind was recently when he came into the kitchen looking deep in thought and said
'It's a terrible world we live in isn't it? Some people are prepared to kill other people for stupid reasons...it was on the news that they are looking for a man who is killing people over breakfast stuff'....???
I asked him what he meant, what had he heard and he said
'It's TRUE mummy, they are looking for someone who is killing people over breakfast cereals'......
I laughed and said 'I think you'll find they're looking for a serial killer?'....
Him - big dramatic SIGH........'YES, well that's exactly what I said isn't it'
Again LOL.
Wednesday 7 July 2010
Oh yes! and as for sleep.......
I had to add a post about this subject because on Monday I commented that at least the morphine would probably help me to get a decent nights sleep....
In true panto style 'Oh NO it doesn't'....Monday night I was awake every two hours or less, not through dreadful or unbearable pain just 'awake'. 2am awake to go to the loo, around 4am awake because I had another really mad dream, 5.30am awake because I needed to know what time it was! 7am time to get up - feeling dead to the world and wanting to sleep more........Grrrrrr!
Last night took the morphine later thinking it would kick in and help me to sleep longer...'Oh NO it didn't'.......
Had a relaxing bath around 11pm, smothered myself in morphine and Nu-gel mix, had a cup of hot chocolate then took the morphine around midnight. Went off to bed and laid there for what felt like ages - finally fell asleep. Woke suddenly and went to the loo - time 1.18am !!!! back to bed and back to sleep - woke at 2.23am...back to bed laid awake for ages, woke suddenly after dodgy dream 3.45...back to sleep on the sofa for an hour then back to bed at 4.45am. Woke at 5.15am when Rab got up for work - woke again at 6am when he was leaving for work - woke at 6.55am time to get up and again dead tired.
If morphine isn't going to make me sleep I guess I'm just going to have to get used to dozing on and off and put up with it until my system settles back into some routine.
In true panto style 'Oh NO it doesn't'....Monday night I was awake every two hours or less, not through dreadful or unbearable pain just 'awake'. 2am awake to go to the loo, around 4am awake because I had another really mad dream, 5.30am awake because I needed to know what time it was! 7am time to get up - feeling dead to the world and wanting to sleep more........Grrrrrr!
Last night took the morphine later thinking it would kick in and help me to sleep longer...'Oh NO it didn't'.......
Had a relaxing bath around 11pm, smothered myself in morphine and Nu-gel mix, had a cup of hot chocolate then took the morphine around midnight. Went off to bed and laid there for what felt like ages - finally fell asleep. Woke suddenly and went to the loo - time 1.18am !!!! back to bed and back to sleep - woke at 2.23am...back to bed laid awake for ages, woke suddenly after dodgy dream 3.45...back to sleep on the sofa for an hour then back to bed at 4.45am. Woke at 5.15am when Rab got up for work - woke again at 6am when he was leaving for work - woke at 6.55am time to get up and again dead tired.
If morphine isn't going to make me sleep I guess I'm just going to have to get used to dozing on and off and put up with it until my system settles back into some routine.
'to be or not to be THAT is the question'........:-)
Yesterday, Tuesday 6th July, I went to the hospital early as arranged the previous day. This idea of this was to get me to talk to Dr L and agree to continue the Radiotherapy treatment - 7 more sessions to go - after letting the oral morphine kick in and help with the pain.
Got in to see Dr L within 20 minutes of arriving (*weird really, you usually wait at least 2.5 hours in this particular department - I think they were scared I'd just disappear if they left me there too long*)...
He greeted me with 'Hello my most problem patient' and a big grin....I actually really like Dr L, he's down to earth and 'tells it how it is'.
He then said I usually see patients before their treatment starts and then catch up with them again after it all ends - you I'm seeing every flippin' week...
I told him 'You know you like to see me and you'd only be bored if I wasn't here' to which he laughed and agreed.
We then had a short chat about how the pain has been, what I'm most concerned about (internal and external burn damage), the fact that the ongoing Radiotherapy treatment makes no difference to whether I end up with the Stoma and colostomy bag. I said I'd felt really stressed yesterday when everyone was trying to get me back onto the zapping table - at one point suggesting that they could dose me up with morphine and get another session 'out of the way'...
He asked to see the burns and afterwards said 'No more Radiotherapy for you'... I was sooo relieved.
He said that after seeing the burnt area he's more than happy to draw a line under the treatment and accept that my body has taken as much as it could or should.
He also said that he admired me for continuing this far because I'd been in constant discomfort since the 3rd session and somehow I'd managed to get to the 18th session which is no small achievement.
Dr L feels that the important thing is to rest, repair and get the operation out of the way in September - further Radiotherapy is no longer important enough to continue with considering the external damage and probably internal damage caused.
He then said I'll be in for a painful few weeks now whilst everything heals up - but that I can cope with because at least I'm not allowing them to cause further daily damage to me now. At least I've got a chance to start healing now.
Feel happier and looking forward to getting back on top of things again.
Got in to see Dr L within 20 minutes of arriving (*weird really, you usually wait at least 2.5 hours in this particular department - I think they were scared I'd just disappear if they left me there too long*)...
He greeted me with 'Hello my most problem patient' and a big grin....I actually really like Dr L, he's down to earth and 'tells it how it is'.
He then said I usually see patients before their treatment starts and then catch up with them again after it all ends - you I'm seeing every flippin' week...
I told him 'You know you like to see me and you'd only be bored if I wasn't here' to which he laughed and agreed.
We then had a short chat about how the pain has been, what I'm most concerned about (internal and external burn damage), the fact that the ongoing Radiotherapy treatment makes no difference to whether I end up with the Stoma and colostomy bag. I said I'd felt really stressed yesterday when everyone was trying to get me back onto the zapping table - at one point suggesting that they could dose me up with morphine and get another session 'out of the way'...
He asked to see the burns and afterwards said 'No more Radiotherapy for you'... I was sooo relieved.
He said that after seeing the burnt area he's more than happy to draw a line under the treatment and accept that my body has taken as much as it could or should.
He also said that he admired me for continuing this far because I'd been in constant discomfort since the 3rd session and somehow I'd managed to get to the 18th session which is no small achievement.
Dr L feels that the important thing is to rest, repair and get the operation out of the way in September - further Radiotherapy is no longer important enough to continue with considering the external damage and probably internal damage caused.
He then said I'll be in for a painful few weeks now whilst everything heals up - but that I can cope with because at least I'm not allowing them to cause further daily damage to me now. At least I've got a chance to start healing now.
Feel happier and looking forward to getting back on top of things again.
Monday 5 July 2010
Monday blues.....:-)
Today I decided to go to the hospital early and see one of the Clinical Radiotherapy staff for some extra help with the pain and advice about treating the (still) extremely sore area.
I dropped Dj off to school then jumped onto the tube arriving at St Thomas around 10am. Got to see M within about half an hour - which was pretty good as I didn't have an appointment today officially today until 1.45pm....(makes mental note, turn up more often unannounced to queue jump - lol).
We discussed the ongoing pain, I said that although the Nu-Gel and Morphine mix had helped slightly it really was a minimal amount of difference. I still can't sit comfortably, stand comfortably, sleep without constant interruption and the continual burning pain is just totally wearing me down.
I also explained that I'm now scared about how much internal damage is being done - I can SEE the external damage but can only 'feel' the internal burns. I'm scared that this treatment is doing damage that cannot be reversed after treatment ends - basically I'm just scared and I've had enough. I told her I'm not continuing with treatment anymore.
Well, then everyone and his wife got involved....she talked to me, then she got a more senior Radiotherapist to talk to me, then a Registrar came along to talk to me - all saying the same thing, that to give myself the best chance of recovering from this cancer I HAVE to continue with the treatment. It's important that I finish the full course of 25 sessions.
I cried, they listened to all my worries, they talked some more, I still said No more treatment....round and round the houses we went really for an hour or more.
The registrar asked if she could have a look at the sore area again today - I agreed on the condition that she did not even attempt to touch.
After examining me she said
'Listen Carole, I'm going to be totally upfront with you...you are burnt, you are sore and the area is ulcerated, the pain relief you're taking just isn't strong enough and you now need to go onto oral Morphine today - then tomorrow you need to meet with Dr L and discuss how we can get you to continue your sessions.
They are important because without completing the course we have no idea if the tumour has reduced enough to go ahead with the op. Experience tells us that you do really need the full 25 sessions BUT experience also tells me that whilst you are in such pain it's not going to be a simple decision to continue'
So I agreed that I'd start taking the morphine by mouth today and meet with Dr L tomorrow morning around 9.30am and we'd take it from there. I don't want to continue but after all is said and done, I think I'll have to really. Another decision that seems to have been taken away from me :-(
We discussed that at no time was I informed Radiotherapy would or could be this painful. She said it is solely due to the position of the actual tumour being so low down in the rectum. If it was positioned higher then I wouldn't have burnt in this way because the rays would have been targeted away from the sensitive tissue areas.
I feel like nothing has gone right for me for ages now :-(
So, yes I am feeling quite sorry for myself really - and yes I do know that it's not exactly helpful to getting over this or sorting things out but the pain has been so draining.
The morphine has eased the pain off a little today - I'm not exactly happy about taking it but have given in simply because I do need the pain to stop now. I feel a little dizzy on it and tired (not exactly physically tired though more just 'dopey' tired) but have decided that I'll just have to sleep more over the next week or so until I get back on top of things.
Update tomorrow after I meet with Dr L....I'm hoping for a better nights sleep tonight at least. This getting up every two hours (or less) is just too much now and I never seem to sleep deeply any more because every single move I make during the night wakes me due to the ridiculous stingy pain that shoots up through my insides constantly.
Maybe the morphine will at least help me sleep eh :-)
I dropped Dj off to school then jumped onto the tube arriving at St Thomas around 10am. Got to see M within about half an hour - which was pretty good as I didn't have an appointment today officially today until 1.45pm....(makes mental note, turn up more often unannounced to queue jump - lol).
We discussed the ongoing pain, I said that although the Nu-Gel and Morphine mix had helped slightly it really was a minimal amount of difference. I still can't sit comfortably, stand comfortably, sleep without constant interruption and the continual burning pain is just totally wearing me down.
I also explained that I'm now scared about how much internal damage is being done - I can SEE the external damage but can only 'feel' the internal burns. I'm scared that this treatment is doing damage that cannot be reversed after treatment ends - basically I'm just scared and I've had enough. I told her I'm not continuing with treatment anymore.
Well, then everyone and his wife got involved....she talked to me, then she got a more senior Radiotherapist to talk to me, then a Registrar came along to talk to me - all saying the same thing, that to give myself the best chance of recovering from this cancer I HAVE to continue with the treatment. It's important that I finish the full course of 25 sessions.
I cried, they listened to all my worries, they talked some more, I still said No more treatment....round and round the houses we went really for an hour or more.
The registrar asked if she could have a look at the sore area again today - I agreed on the condition that she did not even attempt to touch.
After examining me she said
'Listen Carole, I'm going to be totally upfront with you...you are burnt, you are sore and the area is ulcerated, the pain relief you're taking just isn't strong enough and you now need to go onto oral Morphine today - then tomorrow you need to meet with Dr L and discuss how we can get you to continue your sessions.
They are important because without completing the course we have no idea if the tumour has reduced enough to go ahead with the op. Experience tells us that you do really need the full 25 sessions BUT experience also tells me that whilst you are in such pain it's not going to be a simple decision to continue'
So I agreed that I'd start taking the morphine by mouth today and meet with Dr L tomorrow morning around 9.30am and we'd take it from there. I don't want to continue but after all is said and done, I think I'll have to really. Another decision that seems to have been taken away from me :-(
We discussed that at no time was I informed Radiotherapy would or could be this painful. She said it is solely due to the position of the actual tumour being so low down in the rectum. If it was positioned higher then I wouldn't have burnt in this way because the rays would have been targeted away from the sensitive tissue areas.
I feel like nothing has gone right for me for ages now :-(
So, yes I am feeling quite sorry for myself really - and yes I do know that it's not exactly helpful to getting over this or sorting things out but the pain has been so draining.
The morphine has eased the pain off a little today - I'm not exactly happy about taking it but have given in simply because I do need the pain to stop now. I feel a little dizzy on it and tired (not exactly physically tired though more just 'dopey' tired) but have decided that I'll just have to sleep more over the next week or so until I get back on top of things.
Update tomorrow after I meet with Dr L....I'm hoping for a better nights sleep tonight at least. This getting up every two hours (or less) is just too much now and I never seem to sleep deeply any more because every single move I make during the night wakes me due to the ridiculous stingy pain that shoots up through my insides constantly.
Maybe the morphine will at least help me sleep eh :-)
Friday 2 July 2010
I didn't go.........
Ok, update on treatment since Tuesday.
As you all know they gave me some morphine and gel stuff to apply to the broken skin. I then attended my appointment on Wednesday, struggled again all night with the ongoing pain and continual discomfort then made the decision on Thursday morning that I NEED a break from the treatment.
Contacted the Radiotherapy department at lunchtime on Thursday to let them know I wouldn't be coming for treatment on Thursday or Friday this week.
Spoke to a Radiographer who said she was obligated to tell me that missing two appointments could affect how well the overall treatment worked - I felt so pissed off at that comment that I responded with 'I'm obligated to tell you that actually I DON'T CARE!'...
It's funny how they can talk about possibly delaying my treatment to give me a chance to heal and that's ok but as soon as I say I want a break then I'm putting myself at risk.
Either way, I want and need a break now. My skin is too broken and sore to continue at the moment and I need to heal before I carry on.
Had a chat with James today and that helped a lot. I'm going to ring the Colorectal nurses at Kings on Monday morning if I'm not feeling better because I want to know HOW everyone is so sure that I 'need' 25 sessions when they don't actually know if the treatment is working, has worked really well, has made no difference etc....it feels like total guesswork to me at the moment and I've got this notion in my head that maybe the external burning is now so bad because the tumour HAS been reduced internally?...
What I do know is that I don't need anyone giving me a hard time over this because I've got more than enough pain to cope with at the moment.
I'm spending the next few days doing the bare minimum, concentrating on my burns and myself and sleeping if necessary to get through the pain.
Rab cooked a nice meal last night and is planning to cook again this evening - he's taken the day off work today because he feels it's better for him to be here at the moment - I know he's worried about me because I don't usually break down in tears on a daily basis but that's all he's seen now for the past two weeks.
James and Leanne have offered to take Dj out on Sunday and talk to him again because I know he's been feeling really worried about me being in so much pain. I try to hide it from him as much as possible but he's been aware this week that it's been awful and I can see he's feeling a bit scared at the moment. He didn't go to school today because his stomach was a bit upset during the night and he was feeling 'sickly' today - I think it might be because he's worried about things in general.
Anyway, will update my blog over the weekend to say if I'm feeling any better after taking a break from the zapping for a few days.
As you all know they gave me some morphine and gel stuff to apply to the broken skin. I then attended my appointment on Wednesday, struggled again all night with the ongoing pain and continual discomfort then made the decision on Thursday morning that I NEED a break from the treatment.
Contacted the Radiotherapy department at lunchtime on Thursday to let them know I wouldn't be coming for treatment on Thursday or Friday this week.
Spoke to a Radiographer who said she was obligated to tell me that missing two appointments could affect how well the overall treatment worked - I felt so pissed off at that comment that I responded with 'I'm obligated to tell you that actually I DON'T CARE!'...
It's funny how they can talk about possibly delaying my treatment to give me a chance to heal and that's ok but as soon as I say I want a break then I'm putting myself at risk.
Either way, I want and need a break now. My skin is too broken and sore to continue at the moment and I need to heal before I carry on.
Had a chat with James today and that helped a lot. I'm going to ring the Colorectal nurses at Kings on Monday morning if I'm not feeling better because I want to know HOW everyone is so sure that I 'need' 25 sessions when they don't actually know if the treatment is working, has worked really well, has made no difference etc....it feels like total guesswork to me at the moment and I've got this notion in my head that maybe the external burning is now so bad because the tumour HAS been reduced internally?...
What I do know is that I don't need anyone giving me a hard time over this because I've got more than enough pain to cope with at the moment.
I'm spending the next few days doing the bare minimum, concentrating on my burns and myself and sleeping if necessary to get through the pain.
Rab cooked a nice meal last night and is planning to cook again this evening - he's taken the day off work today because he feels it's better for him to be here at the moment - I know he's worried about me because I don't usually break down in tears on a daily basis but that's all he's seen now for the past two weeks.
James and Leanne have offered to take Dj out on Sunday and talk to him again because I know he's been feeling really worried about me being in so much pain. I try to hide it from him as much as possible but he's been aware this week that it's been awful and I can see he's feeling a bit scared at the moment. He didn't go to school today because his stomach was a bit upset during the night and he was feeling 'sickly' today - I think it might be because he's worried about things in general.
Anyway, will update my blog over the weekend to say if I'm feeling any better after taking a break from the zapping for a few days.
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