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

Bone Scan update........Friday PM.....

As you know from the post below I got my CT scan results via email yesterday.

Since then a few emails have gone backwards and forwards to my nice colorectal nurse, L....

I mentioned to her that I'd appreciate them (colorectal dept) contacting my GP to advise on the bone/bone scan issue as he was waiting to hear from them and wanted advice on referring me first. I also mentioned to L that my Osteopath is now sure it's bone related and most definitely NOT muscle issues.

L emailed me back this morning and said GP could refer without their say so but if I wanted her to then she would ask the CT Radiographer to review my recent CT scan as sometimes bone changes do show up on CT'. She mentioned that although they'd not commented on anything they were concentrating on the left lung area - so she could ask them to review the scan just in-case.
So I decided that yes, I did want her to.
I also said that if the Radiographer was sure and the CT showed nothing untoward then I'd put the idea of a bone scan on the back burner for now and concentrate on my Osteopathy for a while. I said I didn't want any unnecessary scans but that I did really need definite answers - so if I could get this from the CT then this would obviously same time (and money)

Fast forward to this afternoon and L again emailed me and said Radiographer had got back to her after fully checking the CT and has seen nothing to raise concern HOWEVER he has stated he would fully support the decision to refer me for a bone scan so.... 'would you like me to go ahead and organise this for you Carole'........

Now, let me think about that for a minute.....Ummmm, YES! Yes, I think I would :)

Sorted :)

Yay to my Radiographer and also to L, my Colorectal nurse - and to Martin the Osteopath for confirming it's not muscle pain - and big Yay to me for continuing to be a persistent nuisance - lol :-))

Recent Scan results...

No, not the BONE scan because people still have to discuss this!  These are my CT results from the 19th of this month.


"the CT scan showed very little change but commented that the area on the lung we're following may be slightly more prominant. We asked our collegues in the lung team to review for us and they have suggested we repeat the CT scan in 3/12 as these changes are so slight and not conclusive"


So no real news, still 'inconclusive' and I'll be rescanned on 19th December. I still live in Limboland :)


I have replied to the email and asked if a PET scan would now be an appropriate next step....They did offer me an appointment with their lung team but as they've already said it's 'inconclusive' there doesn't seem much point in going down that route just now.
I've also asked about my outpatients appointment being put back to the 28th November and stressed that I am not at all happy about this. It appears that my colorectal nurse was not aware of the change in my appointment as she mentioned the original October date and the 'possibility' this may have to be altered. Seems I'm ahead of them with appointment news then!  


Apart from that news, I had a repeat Osteopathy appointment on Wednesday. Since then I've not been comfortable at all. So that was short lived relief - lol. 
My Osteopath is now sure that the problem is NOT muscle related, it's the bones in the rib area that are causing pain - so it could be Radiotherapy damage? 
I'm seeing my GP on the 4th and will again ask about the bone scan. I've also asked my colorectal team to advise my GP accordingly (as he feels he needs their 'go-ahead' before he books me in for one). 


Weather here is lovely and if I felt better I'd be doing some gardening - however as I have limited movement it seems futile to even try, so instead I'll just try to get some sun on my achy bones whilst it lasts. 


Have a nice weekend everyone and if you're lucky enough to be in a sunny place, enjoy the last of the summer sunshine.


Catch up soon xx

Time is fast approaching........

It's almost October and therefore the time is fast approaching when I'll be asking you all once again if you'll consider buying one less pack of Christmas cards, or one less roll of wrapping paper, or even one less box of Chocolate biscuits and instead considering donating the couple of pounds you save to Trinity Hospice (link on the left hand side of my blog)..........BUT.........It's not *that* time just yet, it's too early to be asking for Christmas donations - so I found another way you could help, if you wanted to.

It doesn't even cost a pound and will take just a few short moments from your day.

Please vote for Trinity Hospice in this NatWest initiative. If they get enough votes they'll be awarded £6,000...more on this link. All you have to do is register and then vote for them. You actually are allowed 3 votes so after you've voted for Trinity have a look and see if there's anything local to you that you'd also like to vote for.

For this one you DO have to reside in the UK...so my oversea's friends can't help but all you UK based ones can make a difference. Please give up two minutes of your time, register and vote for Trinity (just to make me happy if nothing else - lol)
I had over 600 page hits from the UK last week  - if just a fraction of you take the time to register and vote it could make the difference between them gaining enough support to get this award.

Also, if any of you use Twitter, please would you consider spreading the word on there too (I don't 'do' Twitter) and your Facebook pages?

Have a read of what they do on this link below and I'm sure you'll see they are a worthy cause....

http://communityforce.natwest.com/project/2202

Thank you xx

Osteopathy saves the day?.......

Okay, so I ignored medical advice and went ahead and booked an appointment with an Osteopath locally. I used the clinic that I used some years ago when Dj needed some work doing - they were good at the time and although their Osteopaths are now different people I knew their reputation was still sound.

So, got myself an appointment on Friday afternoon. Had a nice chat initially about my past history, explained that my GP felt it wouldn't be useful however there was no way I could continue with this ongoing pain without at least attempting to help myself in some way.
Martin, my Osteopath explained that if the pain was due to joint issues (displacement), muscle issues (strain or injury) then he could definitely make a difference however if it was due to cancer (secondary bone) then what he did would not make a jot of difference. He explained that he wanted me to understand this before we went ahead. Seemed sensible to me.
He also explained that because of the question mark around cancer, he would only do a very gentle form of Osteopathy as doing anything 'vigorous' could of course damage fragile bones.

He then got me to bend over in front of him, with my back to him and immediately said 'That tell's me plenty, you are completely unaligned, your hips, shoulders and spine need adjustment and you are not a quick fix but I think we can do something here'...
We discussed that during my operation (which was when the shoulder pain started, the following day) I was probably pulled around for hours, they are not exactly gentle when they do surgery on you and you can't let them know if something is uncomfortable because you're 'out of it' - so they do their stuff and you get pulled and yanked about...

Anyway I let him do his stuff - which 'feels' like he's actually doing nothing but of course he is. I know this from when Dj had his work done, at first you question what 'holding' someone's head or placing their hands under your ribs and moving their hands around slowly can actually do - but of course they are really doing much more than this.
I already know that this treatment can have amazing results, we saw the difference in Dj within two sessions so I was hopeful it would work on me also.
My session lasted 40 mins and when I left there I was (as expected) much more uncomfortable than when I arrived. Every single part of me felt stiff and sore - however the test would be over the following few days. If it was going to make any difference I would know then as bit by bit I'd start to feel better.

And I do! Yay! So much better that I was able to get out of bed on Saturday feeling stiff but not frozen, I managed to get out shopping to buy Dj new school shoes, then we went to see mum and dad for a couple of hours. We were out from 2pm til around 9pm and I coped well.
A few days before there was NO way I could have done this as standing even for a few minutes was just becoming way too painful.
Today I've managed to get out of bed stiff but again not in agony, and got through quite a bit of outstanding housework - there are still things I can't yet do but today there were things I COULD do - so big YAY to Osteopathy and the best news is that as it IS working the chances are that it's nothing to do with cancer because as Martin said 'It won't help at all if it's secondary cancer'

So, I'm not fixed and I accept I'm not a 'quick fix' but I'm probably fixable - good news I think.

At the end of this I'll be poor but not sore :) That's the current plan anyway :)

Catch up soon xx

This one's for you Angel........

Hoping for your rainbow to surface ....'after every rainfall must come a rainbow'........

Angel is my blogging buddy and her blog can be found here:

http://todaywasntallaboutcancer.blogspot.com/2011/09/town-flat-rescue.html

About Angel:
I have cancer that cannot be cured and a big gap in my life where friends and family used to be. Inspired by the book Why Kindness is Good for You, my aim is to raise oxytocin levels primarily by sharing my thoughts on things that make me smile, but also when I’m sad to tell you why and give you the opportunity to give me a virtual hug!


Pop over and say Hi to Angel. After reading her blog tonight it's apparent she is in need of little lift and a lot of virtual hugs right now.  

Scan Day.....

Monday was scan day - rescan the lung/chest area to see what is (or hopefully isn't) happening there.

My appointment was 9am which means that I need to be up hours beforehand so that I can get mobile before I need to leave the house.
In the 'old' days I'd have been able to reach over, turn off my alarm get out of bed and do the stuff you need to do before leaving for the appointment...these days I need to find a way to turn over to even get to the alarm, then it takes me a further ten minutes to actually get out of bed followed by another half hour to 45 mins before I can get mobile enough to move around.
Attempting to do normal things, like bend down and pick up the cat bowl so that he can be fed is just not an option now for at least the first half hour. It seems that I completely stiffen up during the night and everything then takes time to register that it needs to move again. Even lifting the kettle to make a cup of tea causes me intense shooting pains throughout my back/rib area. I'm shuffling around like a 95 yr old...

Anyway, got to the appointment on time, got scanned. Told them I couldn't raise my left arm above my head like you're supposed to do for the scanning process - the Radiologist is lovely and said it really didn't matter, down by my side would be just fine.
I didn't mention my back problem to him at all and here's the odd thing....after my scan he removed the needle stuff from my arm then said 'Wait, take my arm so I can help you up..is your back very painful?'........Oh shit!.....then you start to think 'What did he see on the scan, how did he know about my back'..(but they can't tell you anything about the results) maybe he's just psychic eh :)

After the scan my back was a million times worse than it's ever been. I literally hobbled down the road and eventually got to work...every single step sent a shooting pain through my whole rib area, my head was still dodgy from the migraine the day before and truthfully I felt crap on Monday. Had a chat with H when I arrived at work and she suggested I went home and tried to relax to get rid of some of the pain. I slept during the afternoon sitting up in the chair.
Today it's been painful but not like Monday - today I've been able to work through the pain, take painkillers and clock-watch until home time..but then it doesn't help that it's 'home-time' because wherever I am, home, work, walking, sitting, standing, laying the pain is still there all the time now...(actually laying down is by far the worse pain).
I realised recently just how much I'd deteriorated, during the summer holidays I was able to walk around London with Shents and the kids for hours - we met up around 10am and I didn't get home until 7pm, we walked around for most of that time and I was fine, now I can't walk to work without pain and that's a 10 minute (well, it WAS taking me 10 minutes in the past, now it takes me 20 minutes) walk...

Okay, moan over :)..... just got to wait for the results now which I'll be asking for via email in two weeks rather than waiting 2+ months.

Going to investigate an Osteopath tomorrow to see if that might help.