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..

Monday, 31 October 2011

At last....some positive news :)

I don't have Breast cancer :)

On Friday, I had my mammogram and appointment with the Breast care clinic. Met with a lovely consultant, Mr R, who I had a long chat with prior to the mammogram and asked him if it would be possible to get my results same day. He said that normally they wouldn't do this - however because he felt that I had more than enough to be dealing with he agreed that he would get the result for me that day.
After my mammogram (which if you've not had one before was uncomfortable but not painful in any way) I met with him again and he informed me that it was, as I'd expected, completely clear.
Therefore it appears that the tumour on my spine has indeed come from the original rectal tumour and has found itself a new home in my spine.

Mr R was the most lovely man and we had a chat about 'options' now. I told him I'd done some research myself on cyberknife treatment. I expected him to say this wouldn't be available to me but he actually said that as far as he's concerned 'all options are now on the table - including cyberknife'. He informed me that he wants to take my case on as his department deal more often with spinal mets than my current colorectal team.
Spinal mets in Rectal cancer are relatively rare - less than 4% of cases worldwide - therefore he feels that his team are better equipped to deal with this and has agreed to take me on, regardless of the absence of any breast tumours.
He feels I'm a bit of a puzzle and therefore interesting to him...it's not only unusual for spinal mets to develop from Rectal cancer, it's also highly unusual for this to happen so soon after my original surgery and without the appearance of mets to the liver first. Therefore as I'm unusual the 'NHS resources are now at my disposal '....:)
I really liked Mr R - felt confident with him and I know he will do his best to provide me with a quality of life.

We discussed what my priorities are and I explained that I'm fully aware of the seriousness of spinal mets, I accept this and my main priority is now removal of the pain.
He feels that he can achieve this - at least in the short term. We talked at length about a couple of options, cyberknife, radiotherapy, short term chemo or neurosurgery....Now, I admit I took a very deep breath at the thought of surgery on my spine BUT if it makes a difference to my quality of life and he feels that is the best option then this is the path I will have to follow - but I admit to being totally scared about spinal surgery!

He assured me that now I'm officially under his team, things will start to happen quickly.... He explained that things HAVE to happen quickly now because spinal compression can cause damage that absolutely cannot be reversed therefore it is essential that things now happen fast.
He also insisted that I could not leave his department on Friday without first seeing the Palliative care team so that they could start working on immediate pain relief. (I had previously been referred by my colorectal team but was waiting to hear from them). He contacted them and asked that they come down to his department and meet with me today as he felt that it is completely unacceptable to be in this much pain

So I waited and met with a lovely doctor, Dr D, from the Palliative care team who talked through the pain symptoms with me and tweaked various medications to give some immediate relief from the CONSTANT pain I'm now in. He also carried out some neurological tests to ensure that the reflexes were behaving as they would expect and that there was no sign of imminent damage being caused...he explained that if he was concerned about this I would have been admitted on Friday. However, so far things are 'okay'...
I've been warned about signs to look out for and instructed to get myself to A&E immediately should I notice any of them.

So, to relive the pain I'm now on 5 different types of medication - short term - whilst they make decisions on what to do. Mr R's team are meeting this Thursday to make decisions on the next step/s.
He feels that in the short term I am 'fixable'...in other words they can do stuff to reduce the tumour and relieve the pain. What they probably can't do is completely remove the tumour - but they can try to control it and therefore give me back some quality of pain free life for as long as......So for now, I'm concentrating on what they can do rather than what they can't do.

I got home just after 6pm after being at the hospital from 10am - so a very long, but extremely productive day.

By the time I arrived home there were three messages on my ansaphone asking if I could come in for an MRI on Monday...so true to his word, things are happening now 'urgently'...Then later on in the evening I received another phone call asking if I could come in for the MRI at 12.30 on Saturday instead!.

So on Saturday I had my 45 minute MRI to check the spine area again. Mr R wants to see how deeply into the bone the tumour has embedded itself and also wanted to check the vertebrae involved. The Radiologist informed me that I was back in on Thursday 'for a procedure' that Mr R has organised! I told her I wasn't yet aware of this....she smiled and said Mr R works fast, you'll be told next week.
She then asked if I wanted to know what I was booked for and then told me that it was for a spinal biopsy.... GULP...really scared now!

I've spent the weekend feeling really drugged up but definitely in less pain now. The pain med's are working but the result of this is that I'm dizzy constantly, feeling sick 24/7, and need to sleep much more than normal - however the pain is less than it was prior to Friday.
I'm meeting again with the Palliative care team on Monday next week to see what needs some more tweaking med's wise.
I'm hoping that as the med's get into my system I may feel less nausea - or at least it might not be ALL the time. Right now concentrating on anything beyond a few minutes is difficult, because I feel completely spaced out all the time therefore I've decided to take this week off work and get the pain med's sorted first. I'm hoping to be able to go back next week because if I'm working then things are 'normal'...and I want to stay 'normal' for as long as possible.

It's taken me two days to write this update...I've had to do bits and then go back to it later due to my lack of concentration and also needing to go back to sleep. But on a positive, at least I can now sleep without being in constant agony - and it's been MONTHS since I last managed to sleep without pain.

I feel very optimistic about Mr R and his team - so it's all good right now :).....still scared about a spinal biopsy though and even more scared at the thought of spinal surgery!

Keep things crossed for me eh? Much luv xxXxx

Thursday, 20 October 2011

So.....what now?

Yesterday when I got home from work there was a message on my ansaphone from my nice colorectal nurse L...she had tried to contact me to discuss the recent bone scan results.
Immediately I knew this was going to be dodgy news simply because if it was good news she would have emailed me rather than called...however, the voice of reason starts to think 'Maybe she just wants to offer advice regarding the pain' ..then the other voice starts hearing the conversation that is pending.

Anyway to cut a long story short, I got very little sleep - was up at 4am with a stinking headache and of course the now familiar pain in the back driving me to distraction. Then at around 9.30am this morning L called me and we discussed the scan.

The outcome is that I have bone metastases (spine T9 and T10) - probably from the original rectal tumour BUT she stressed that this is very very very unusual as there are no lymph nodes impacted anywhere in the body, joints are unaffected and although it's possible for rectal cancer to move to the spine, it's extremely unusual for it to go to the spinal region without going somewhere more common first.....
So, to make sure all bases are covered she is requesting an urgent mammogram just to check that there is no sign of Breast cancer.
L explained that bone mets (to the spine) are more common with BC rather than rectal cancer - the mammogram is therefore to make sure there definitely isn't a tumour in that area...The recent CT I had on the chest area didn't pick up anything in the breast area - but then again, it didn't pick up the spinal mets either - but the mammogram is precautionary more than anything.

Putting all that to one side, it changes very little. Bone metastases cannot be 'fixed', I'm no longer considered 'curable'.... but we discussed what we can do to regain some quality of life.
The short term plan is urgent mammogram and L is contacting the other hospital involved in my care to organise some Radiotherapy sessions to alleviate the pain I've been experiencing. My care team will be discussing me on Monday to decide on next steps.

As to the long term plan.......the simple answer right now is, I don't know.  I do know that my long term survival statistics have now dropped dramatically - I also know that right now I'm still here and that life isn't infinite for any of us..

How do I feel? Pissed off with it all to be honest - but I DID expect this result.
I knew that the pain in my rib/shoulder area wasn't a 'normal' pain, it wasn't a run of the mill aches and pains type of pain so I knew it would either be bone mets or the other possibility I was looking at was damage from the Radiotherapy (*but that would have been more likely to have been joint issues rather than mid spinal column).
I did what I always do when faced with something and researched beforehand....spinal mets from rectal cancer only affect a tiny amount of people, in the region of around 4% or less - and that small amount of people who are affected by bone mets tend to become so after numerous tumours move into the liver/lungs/pelvic area first - so I was a little hopeful that despite my concerns it might turn out to be nothing serious.
No such luck eh :)

I don't believe in God but if I did, I'd definitely now believe he's got it in for me for some reason.....

Bastard cancer!

Catch up soon xx

Wednesday, 12 October 2011

Bone Scan........


Today I had the much waited for, and needed, bone scan. Firstly they inject you with some nuclear material then you sit around and wait for about 3.5 hours for this to do it's work.
After that they take tons of pictures using this state of the art machine (thank you Philips) which will show if there are any 'hot-spots' in the bones.

Now I've just got to wait for the results - which the very nice Bone scan man said would be done 'asap' for me.

Fingers crossed for the best possible outcome :)

Bone scan man was very helpful and explained everything fully. He let me see the scan picture on the PC afterwards which was really interesting.
I stood staring at it, studying it for a while and he asked 'What are you thinking?'...I replied 'It's weird, I'm looking at future history....at some point in the future someone may dig up my bones and this is what they'll see...this is my mark on the world, this bunch of bones'......

Just to add, this picture above isn't REALLY me - this is just an example of what you see after a bone scan....:)

Much luv

Sunday, 9 October 2011

Can you trust your Doctor?........

This was the title of the Dispatches programme on Channel 4 this week 'Can you trust your Doctor?'..

Worth watching if you missed it - available here....... but I think you do have to be UK based to view


I found this programme interesting because it goes back to what I've talked about on previous occasions - taking responsibility for your own health, not just sitting and nodding if the Doctor appears not to be on-board or dismissive, not leaving the surgery with a prescription for painkillers instead of a referral for assistance...however in some cases on this programme people were left with no help at all.

'Anthony' went undercover to film one particular GP. This GP had been investigated in the past (2006) for failing to spot cancer...
'Anthony' presented with typical symptoms of bowel cancer, rectal bleeding, abdominal cramps, very bad constipation - he left the surgery with a prescription for laxatives and instructions from the GP to 'eat mangoes'...One month later Anthony goes back and informs the GP that the symptoms have not gone away - he then leaves with a prescription for stronger laxatives and instructions from the GP to 'eat green pears'....Two other doctor's that 'Anthony' presented to (different surgeries) immediately referred him for tests on his first visit to them.
GP's are informed of the 'typical' symptoms to watch out for with regard to colorectal cancers, it seems ridiculous that some are still not aware of the signs.

Another lady went to her GP 14 times after suffering severe breathlessness...she was diagnosed with 'asthma'. Sounds acceptable until you hear that this lady had no previous breathing issues and had breast cancer a few years prior to the breathing issues developing.
Fast forward 9 months and this lady then demands a scan/x-ray as she remains unhappy with the 'asthma' diagnosis. The GP then fails to report the findings to her. Eventually she does obtain the results which show 'secondary lung cancer'. She passed away some time afterwards.
The GMC (General Medical Council) asked the GP to 'amend and improve practices'....

Young lady, 22 yrs old, presented to her GP with a lump in the breast that she was unsure about. GP examined her, said it was nothing to worry about, that it was probably because she was taking the contraceptive pill and she was too young for it to be anything serious.
Six months later she returns to the GP who decides she doesn't even need to be examined because she was previously examined 6 months earlier - sent away with reassurances of  'nothing serious' once again - despite knowing of a history of breast cancer in her family.
This time, her mother insisted she get checked out and she attended elsewhere - outcome was breast cancer, a tumour on her spine and further spread to the liver....

This programme examined how doctor's that are failing patients have very little to worry about. We are taught in life that our actions have consequences but in the case of GP's that fail patients it appears there can sometimes be virtually no consequences.
A three year old child died after the doctor on call did not attend to him adequately - the coroner reported 'failure to provide basic medical attention was total and complete. There was a clear causal connection between this gross failure and Joseph's death'...
So, you'd expect he would be struck off the medical register? Unable to practice again after such a damning report from the coroner? ....Well, you'd be wrong - because the coroner failed to inform the GMC and the local Primary Care Trust (PCT) also failed to inform the GMC so his consequences were? ...None.......

However, it's worth mentioning that around 800,000 people visit their GP's daily and by far the vast majority of patients ARE happy and DO get good care. But, if you find yourself thinking 'I'm not sure' after a visit then take responsibility and ask to be referred somewhere where you will leave thinking 'I'm now sure'......

Sunday, 2 October 2011

Side-effects of cancer treatment

I was given this article earlier today by a friend (Thank You C).... who thought I might find it interesting...that was like the understatement of the year.

This is well worth a read - not as a 'dig' at GP's or anyone else, but to make us all aware of the fact that we MUST take responsibility for our own care - we must step up and complain loudly if things aren't right, we must accept that GP's do not know everything and therefore push and push for access to those who can help.

Dealing with cancer is hard enough, dealing with the after-effects of treatment is a double blow

GPs 'failing cancer patients' by not spotting side-effects of treatment | Society | The Guardian

In short this article covers:
25% of symptoms are missed by GP's who are simply not aware of the side-effects of cancer treatments.
Poor communication between hospitals and family doctors meant signs of side-effects went undetected and caused patients pain, misery and discomfort
250,000 who have survived cancer have had symptoms such as osteoporosis, heart disease and bowel trouble not picked up by the GP.
Currently GP's are not recording who has had Chemotherapy or Radiotherapy, partly because they don't receive enough information from hospitals but also because they don't realise why it's important for them to do that!
NCSI estimates that between 20-25% of those diagnosed with cancer later experience a consequence of their treatment which affects their physical or mental health or quality of life.
GP's will not necessarily be used to the long term side-effects of many cancer drugs, so sometimes those effects aren't picked up by the GP and primary care team
The quality of information given by hospitals to GP's varies and sometimes there is confusion about who is looking after the patient - and the patient can get lost in the cracks

Definitely needs to be read so that should you be unlucky enough to find yourself with symptoms then you will remember that GP's cannot possibly know everything and sometimes need to be guided by us.

Also, this website is definitely worth a look...full of interesting information and facts.

The National Cancer Survivorship Initiative home page « National Cancer Survivorship Initiative

The National Cancer Survivorship Initiative (NCSI) originated from the Cancer Reform Strategy (2007). The NCSI is a partnership between the Department of Health, Macmillan Cancer Support and is supported by NHS Improvement. The aim of the NCSI is, by 2012, to have taken the necessary steps to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

At the bottom of the NCSI page are some supplements you can download - the HSJ Survivorship supplement is definitely worth reading, particularly an article contained within that called 'Forward Planning' - but in all honesty there was plenty worth reading in the whole supplement and on the whole website too.

Catch up soon x