About Me

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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..

Tuesday, 22 February 2011

Blood Test Results & Beans and Pulses :-)

Today I went to the GP to get the results of my recent blood tests.

Good news is that my Vitamin D level is 'very good'. In fact the GP said it was the best levels he'd ever seen in ANYONE in this country! Yay, I have good Vitamin D levels :-)

Haemoglobin levels were 'a bit low at 11'...told him they dropped to 4 after surgery (hence the blood transfusions) and then stabilised at 11.5 a few days after.
After hearing that he feels that 11 is probably normal for me - taking into account a transfusion only pushed them up to 11.5

My CEA level was 5 prior to any treatment commencing - he confirmed that it is now 3.7....

Soooo, following major surgery and removal of the tumour it's dropped by only 1.3 which is 'disappointing'* ......his words - mine involved the F word rather than *disappointing*

However, we had a long chat and he said that because they (hospital) didn't do the CEA marker after surgery he has no idea what he's comparing this current test to -his theories are as follows:

could be that my body is still adjusting after surgery;

could be that I have a higher natural CEA level (which made little sense to me because it only went to '5' with a stage 3 tumour present);

could be that I'm one of those few people who do not show accurate results for cancer in CEA marker tests (although it's fairly reliable it's not set in stone which is why they don't use it for screening purposes);

could be that there's still cancer somewhere in my body.....

So, lots of could be's but no definite answers yet.

How do I feel about this? Okay actually - I'm thinking that we test again in June and see what's going on. Now I've got a level to compare to we can see what's happening (or not happening) in a couple of months time

Until then, don't ask me if I've still got cancer because the answer will be the same as last month, truth is I don't know - and neither does my GP (and the hospital definitely can't know because they've not seen me since December and won't be seeing me until June)

Anyway, what other things have I found out for sure recently?....Well, I know that Broad Beans now give me an awful stomach ache....Green Beans make the stoma fart (a lot!)....Baked Beans are fine (amazingly)...Puy Lentils give me a pain in the whole colon, Green and Red Lentils give me no problems at all....Lentils, nuts, seeds pass through your system exactly as they enter your body - in other words swallow a whole peanut by mistake and you will 'find' the same peanut later :-))
Actually that last bit about the peanut made me think....they tell you to eat nuts because they are full of protein and some contain selenium HOWEVER if they pass through your body exactly as you eat them, they don't break down at all, then HOW does the protein/selenium actually get into your system to provide you with any health benefits?
Answers in the comments section please :-o)

I've had a pre-assessment with the Counsellors and am waiting on a date for the sessions to start. He's trying to organise around the 3rd week of March.
Some days I think I don't need to see a Counsellor at all, other days I know that I do....Is the inability to make a decision dealt with in counselling? Lol :-)

Apart from all that, my lovely nurse J is back YAY!...she checked the wound and confirmed that it IS healing well - although still not healed it IS on the right path.
I definitely still have nerve damage in the posterior area - some parts are numb, some parts are sore & sting, some areas ache when I sit...
Sounds weird to talk about having an 'ache' in your bum, it's not a place you would normally get an 'achy' pain - if you know what I mean?.... When did you last say (people with bums this is for) 'I've got such an ache in my bum?'...See what I mean? It's not 'normal' to ache there...:-)

Moving on....chatting with J my nurse yesterday for a while after she checked the wound and she asked if I'd like to see the photo's of the friends wedding that she went to (for her 2 week holiday when she went away and LEFT ME with 'M').:-)))
So sitting looking through Face-book with her and see a lovely bride, gorgeous little bridesmaids, J was Bridesmaid too - and then the best man...
J tells me he's her very best friend and such a lovely man - I said "I know, he was my Anaesthetist, B"...Small world eh :-)

Now I know he'll get my message of thanks for his help and caring during my time in hospital.

S'all good - much luv to all xxx


  1. Good update Carole - thanks. Where the hell have you been finding all the sunshine for your vitamin D?!! We are all suffering from rickets up here in the north!
    Re the peanuts...do you chew them before you swallow them or are you hoying them all down your throat whole?! When my little Lizzie swallowed a penny when she was 2, it also came out in one piece (thankfully!) If she'd munched on it first then maybe she'd have a load of copper and brass in her system. So my answer to your question, which I bet you're wishing you'd never asked now, is give the nuts a bloody good chew before you swallow them...!(but remember I'm a sportologist not a biologist, so its just my own theory!)
    Re the numbness - One year after the nodes were taken out from under my arm - I still have numbness and a bit of tightness in that area. I'm pretty sure after all the surgery, our bodies take a good while to really recover.

    Much love Carole

    Shents xxx

    PS Glad you're getting the counsellor sorted.
    And nice to hear about the anaesthetist again. I remember you telling us about how fab he was.

  2. Uncertainty mixed with some positivity don't let the balance get too low on the uncertainty...

    As we have discussed many a time, that uncertainty will stay with you for many years as no-one can predict that we will all be fine.

    People like us will have a higher level of uncertainty through the rest of our lives and most 'normals' don't have enough uncertainty as why would we eat, drink and smoke the way we do, not forgetting the lack of exercise and not enough fun!

    I know someone with cancer that's been 'cured' will get less and less uncertain as the years pass to the magic 5 year marker...

    So my point is I understand that WE just have to live with the uncertainty and can get quite irritated by people who say we are all okay when we just don't know...

    Sorry for the ramble and the over use of the U word I promise not to use the word Uncertainty again...oops!

    T xx

  3. Yes Tony, bloody uncertainty - totally sums it up nicely I think.

  4. Hi Shents,

    I'm not eating them whole (well, not deliberately anyway)...if you crunch them into tiny pieces they go in that way and come out that way, whatever size goes in, same comes out...nothing is broken down into the body so how are they doing us good..

    LOL at Lizzie - face of an angel, mischief on legs :-) xx

  5. We can't get any news, good or bad, from our CEA. The highest it ever got was 3.5!!

    It is good to hear from you Carole and if you haven't seen already, Sheri's post talks of our next treatment plan.

    It is funny the small world; my sister Terri is a foot surgeon in the town where we had our first round of treatment and surgery and she knew our anesthesist for our surgery . . .in fact, he lived across the road from her!!

  6. Hey Carole!
    You comment on peanuts, I never thought of that! Lol! The do come out the same way that they went in...(I want to let you know, that as a person with a bum, I don't usually check my own)!
    I would be frustrated about not knowing if I still had cancer or not, but some people are happier not knowing..I get the impression that you would rather know.
    Some things are just plain 'unknowable'.
    You seem to be quite positive genarally in this post...that is good.
    Hope that your 'bum ache' and other discomforts leave you for good soon!
    Love Carol.

  7. like nuts, peas have the ability to regroup as well.

  8. Hi Carole
    Hurrah for your Vit D level. I’m up to 800 a day now, me being ultra-cautious with my poorly liver.
    Sorry to read your CEA level is not as low as you hoped. (I do feel awful when I post my tumour marker results on my blog because I want everyone to have the same outcome at this early stage!). The positive thing is it’s on the way down. Can you get it done again before you have your hospital check-up in June so you can take the result (and this one) with you and get an opinion. Rather than have your bloods done at clinic but have no results in your hand.
    I’m sure you have googled and trawled the internet for material on levels, normal levels etc. Seems that some labs have 3 as ‘normal’ in which case you are only a tad over ‘normal’. Also it seems poorly differentiated tumours, which if I remember yours was, put out lower levels of CEA so perhaps that explains the level of 5 prior to surgery instead of in the 100s. In other words, what I’m trying to say, very badly, is that perhaps the drop in level isn’t as dramatic as you hoped because of the type of tumour not pushing the CEA level particularly high? Just a thought.
    With my AFP (which should be zero) some people don’t have a visible tumour until their level is up in the 100s, with me it was 42. Some people who are 5 years survivors of a similar situation to me are relaxed about living with an AFP level in the 20s whereas I would be sh***ing myself!
    I asked my consultant about post op pain a while back and he said its difficult for a surgeon to avoid nerve damage, so many people have more pain after than before - sigh.

  9. Your anaesthetist, is he single? x

  10. Hi Carole,

    The sun just broke over the Oquirrh moutains east of our home and shone in through our bedroom blinds. As I lay here smiling I couldn't help thinking of vitamin D. :-) I'm not surprised you have the highest levels ever seen in ANYONE in the U.K.. You remind me of a song in our church hymnal.

    "Scatter sunshine all along your way;
    Cheer and bless and brighten
    Every passing day."

    I love your legume observations. And I'm with you all the way on the ins and outs of nuts and seeds. Stomas are very educational. I have a whole new perspective on sesame seed buns and honey roasted nuts. Never tried a whole peanut, though. :-))

    Let's hope your CEA levels continue their downward trend. Glad you have a new baseline to work from.

    Keep scattering that sunshine around the cyber community!

    Love ya, Steve xx

  11. Hi Carole,
    Good blog, as Tony says a bit of uncertainty but a lot of positives mixed with the wonderful Dizzie humour. I think after what you have put up with you are basically seriously scunnered which is a good Scots word, which, as with many Scots words conveys a lot of meaning in one word.
    Nice one about the nuts, although the theory with peanuts is that you shell them first Isn’t it amazing how once you get a colostomy bag you suddenly become aware of the range of products that pass through your digestive system without any noticeable change in their physical structure. Corn on the cob is another one. Moving rapidly on I would strongly recommend avoiding mashed turnip. I had some in January and for about two days if the wind production could have been harnessed I would have got a government renewable energy grant.
    I am not letting you have a sore bum on your own, I have as in the lyrics of the Billy Ray Cyrus song an achy breaky bum, I know he said heart but he meant bum. It is literally an ache and sometimes I think I will need to go and see about it and then it eases off a bit. It must be a deep wound if you look at the anatomy of the anal sphincter so it will presumably take a long time to really heal. I carry about a cushion I got from Argos to the office as sitting for a period is a pain in both senses of the word.
    Really pleased you have your nurse back and as you say isn’t it a small world with the anaesthetist. It reminded me of mine or both of them actually there was a wee girl as well and they were really great. Even came to see me after the op a couple of times and sat and chatted for a while. I am still struggling to get my blood results. I thought it was just a question of asking and next day I would have them but it doesn’t seem to work that way. I will get there though.
    It’s good to see you blogging like this and I am confident the sessions with your counselors are a wise move and will help you move forward. Thinking of you as always.
    Graham xx

  12. Hi Eric,

    Very interesting to hear that Sheri's results never went above 3.5...I'll be doing some more looking into this CEA thing and am wondering now if you get a more accurate reading with colon rather than rectal cancer.
    Let you know if I turn up anything worth reading.

    I'm up to date with both your blogs and just keep hoping for the best
    Much luv xxxx

  13. Hi Carol,
    You're right about some people preferring not to know the full facts, I'm indeed the opposite - I need to know everything NOW :-)

    I feel in more control of things once I know exactly what I'm dealing with - or no longer dealing with...I don't suit limbo-land.

    I've had a few days where not felt as stressed or 'down' but know I'm not out of the woods yet. Just taking things a bit more slowly at times and trying hard to be less impatient with healing, aches, tiredness.

  14. Anonymous....YES! Pea's also don't break down, it's true :-)

    Lou - no he's not single, has a partner and even if he was single you'd still be the wrong sex

  15. Hi Fiona,

    Thanks for the info on poorly differentiated tumours and the marker..I'd not turned that up on my many trawls through, so will definitely look up more info on that.

    Great news on your test results - don't you dare feel bad about having good news! We all NEED to hear good news.

    Hope you get your aches sorted soon because I know it's so draining. Good luck for the biopsy on Friday
    Hugs xxxx

  16. Hey Steve,
    You're right, stoma's are very educational - I now understand the notion of what goes in must come out and it's quite fascinating :-)
    Graham also mentioned sweetcorn as another non breaking down culprit - I'm starting to think that to get *any* goodness out of some foods you need to 'soup' them or blend them.

    Didn't realise you were so close to the Oquirrh mountains - there is a beautiful temple there. I remember it from talking to some Elders from SLC and seeing pictures of their homes. I met them here in London many years ago.

    Love the hymn verse - thank you.
    Love to you & Carla - keep well Steve xxxx

  17. Hi Graham,
    I have no idea what scunnered means but it sounds good - like a mix between 'stunning' and 'scatty' which is definitely me at times :-))

    I'll give the turnip a miss then - Dj said recently if you farted out helium after eating green beans you'd be able to fly!

    The bum ache is really annoying isn't it :-(...I asked my GP what he thought and he said it's generally a combination of the nerve damage (which can improve over time) and the normal healing process.
    Still early days for you yet Graham and you've done so well in such a short time it's not surprising that your bum still aches at times. Just remember to rest when you need to.

    Don't give up on getting those blood tests, pester them until they let you know. I don't get why it's so hard to get hold of our OWN data at times. It's like they don't realise how much more stress it puts onto you.

    Much luv xxxx

  18. Carole,

    Thanks for the update, it sounds as if you are at least headed in the right direction. Know you are always in my prayers. And maybe soon, there will be no more 'pain in the bum.' Love the digestive descriptors.

    Take care, love Rose Mary xoxox