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.

Sometimes you feel like SCREAMING!

Update from my GP as discussed in my last post..........

On Friday I finally managed to get hold of my GP and get an update - except there was no update. He said his email hadn't been responded to as yet so he was unable to tell me anything more and that he'd ring me on 7th October when he came back from holiday.
Oh cool.......yes, great, I'll just 'wait' then shall I? FFS!

So, keeping my cool I said 'What about this bone pain? I can't get a proper nights sleep, it's bothering me to stand/sit/walk/lie down, what shall I do until 7th October, I think I do need a bone scan'........he replied that he knows that I do need one, that I do need answers about this ongoing pain in the bones BUT he needs the hospital to say that I need a bone scan so that he can organise one....Pah! Back to square one then.
He then said that instead of ringing me on the 7th, come in to see him on the 4th October instead.
Ummmm........Thanks, have a nice holiday then.....

Arrggghhhhhhhhhhhh!

Anyway, moving on - tomorrow I've got a CT scan for the question mark on the left lung issue. They are rescanning me to see if the 'too small to call' spots have grown/stayed the same or best case scenario completely disappeared. I'll then email them in 2 weeks  and ask for the results because I'm not waiting until 28th November to find out the answer. (28th November is when they've moved my next monitoring appointment to)....

Today I've had a horrible migraine - woke up with it around 5.30am and took some painkillers then straight back to bed. Been in and out of bed all day and it's finally cleared off about 7pm this evening. Nice way to spend a Sunday :(

Yesterday I got up and my pain in the rib area was much much less than it has been so I started to wonder if maybe it IS a muscle related problem...then today when I woke up the pain was back with a vengeance so that little bit of relief didn't last long.
I know my GP said not to see an Osteopath but I'm thinking I might......just thinking about it at the moment..... because I feel I need to do something - something other than completely overdose myself on bloody painkillers all the time.

Catch up soon xx

GP appointment - Friday, 9th September 2011

As previously discussed in my last post I managed to get myself an appointment with the GP on Friday afternoon.

I explained that my list of issues was growing longer by the week and that I also still hadn't received the letter from the hospital team after my outpatients visit there in July. He had now received it and printed me off a copy.
So we sat and went through it together - not that there was much in it to actually go through!

I pointed out a number of things that I remain unhappy with (in this particular letter and with regard to my after-care)...first off it states in the letter 'completed Chemoradiation treatment in July 2010'......
........Chemo was stopped after just a few days and Radiotherapy was stopped after 18 sessions due to excessive burns and skin damage...NO mention of any of this and as far as I'm concerned that is important information for my GP to be made aware of.
Letter also goes on to say 'good response to neo-adjuvant RCT' which again was not what the surgeon told me back in September. He actually said 'minimal response - the Radiotherapy did not destroy the tumour and it is virtually the same size as pre-treatment'...

Then it mentions that Carole  'is concerned about her ongoing tiredness and weight loss'.......
No I'm not...I AM concerned about the overall fatigue I still experience at times but at no time did I say I was concerned about my weight and I've definitely NOT lost weight - I'm back to my pre-surgery weight which is where I've been all of my adult life.

The letter then gives two completely inaccurate dates for CT scan and MRI scan (both in August)...I informed the GP these were both wrong, did not take place and were never planned to take place.
I showed him my letter for my next CT scan (in September) then we discussed that my outpatient appointment had been moved to November - he was not happy with this decision and will be raising with the hospital team.

He was also concerned about the decision to rescan the pelvic area after Christmas, which will be 6 months after they noticed 'inflammation' in the original tumour site....again he is going to ask for clarification on that decision. He felt that if something had raised concern in that area a rescan should take place after 3 months - as is happening in the lung issue. I said I was definitely unsure that leaving it for 6 months was wise as if it was the worse case scenario, we are giving half a year for new growth to take place.

My letter ends with 'patient declined adjuvant chemotherapy due to significant toxicities with neo-adjuvant'...which is exactly what I'm pointing out to the GP - how could I have completed in July 2010 when in the same letter they point out the toxicity problems caused....

At no point in this letter have they mentioned the bone issues I've been experiencing, no mention of either the shoulder or rib area despite me raising it with the surgeon.
Also no mention of the rectal wound that still hasn't healed, no mention of my concerns that my breathing never did return to normal after my op, no blood test results reported to him.

The letter sent to my GP makes me sound like a completely healthy person who has complained of feeling tired and being skinny !!!
Oh wouldn't that be so bloody nice just to be 'tired' and 'thin'......

My GP is writing to them on Monday (email) and raising questions about my care plan and also asking about the bone issue - he is happy to send me for a bone scan but wants them to say it is advisable first (I don't know why - and to be frank, I don't much care, I just want to find out what is causing this ongoing pain).
I asked if I could go ahead and book a couple of osteopathic appointments whilst I'm waiting for him (GP) to get back to me - he said 'No, absolutely not - we need to wait and see what the scan shows first'...I asked him what his thoughts are and he said 'We have to consider all possibilities, including the notion of secondaries'.....My thoughts exactly - thank you GP :)

My GP is going to ring me Friday morning with an update of all issues raised and tell me what the plan is for a scan on the bones.

So in the meantime I'm taking over the counter painkillers at night, just to try to take the edge off it so I can get some sleep in. Update once I know more..

Going to do a separate post later on about other things going on in my life - unconnected to cancer things :)

Sometimes you have to tell it like it is.........

Okay, been  a while since I've done a really honest update on me....I've scratched the surface, ignored things over the summer and said 'Yes, I'm fine thanks' so now it's probably time for an honest update.

Over the past few months I've been waiting to 'improve' - before my surgery they said in three months I'd be back to fighting fit and wondering what all the fuss had been about :) If only.........

I'm now 10 months post surgery and my list of 'issues' seems to get longer each week/month.
Apart from the fact that the rectal wound still hasn't fully healed - and probably won't now - the ongoing ache in the original tumour area is a real question mark. I know they said 'inflammation in the area that could be due to treatment' but seriously, I'm 14 months post Radiotherapy now and 10 months post surgery why would there still be 'inflammation' there? Puzzles me for sure.

It's not a noticeable problem until I sit upright for long periods, like when I'm at work sitting in one position for a long time. It's a dull draining ache just around the tail-bone of my spine and previously I could ease it by walking around and stretching but now that's not so easy.
This is because the rib pain/back pain has increased and now walking, stretching, bending, sitting and (most of all) lying down, are all really painful - sigh........The shoulder issue is a nagging ache but as long as I move the arm slowly and do not overstretch it, it's not a huge problem as such - the back pain is more limiting now. Once I get into bed at night it's impossible to turn over without waking because the pain is intense - and getting mobile in the mornings is taking longer as each week passes. When I first get out of bed I'm like a 90 yr old woman shuffling around and struggling to do basic things, such as bend down to pick up the cat bowl so that he can be fed or going downstairs to let him out and each step on each stair sends jolts right through my whole spine - the only way I can describe it is like electric shocks going through the whole body as the foot takes the weight, the spine reacts....
So.......am going to try again tomorrow to get an appointment with my GP to see what can be sorted out.

Another thing that recently pissed me off was I told you all back in July that I'd been moved to 'closer monitoring' due to the currently 'too small to call lung spots'....because of them they moved my monitoring from 6 monthly moderate monitoring to 3 monthly close monitoring. Okay, that all 'sounds' good, yes?...

I was last seen mid June and scanned around the 3rd week of June so my next CT scan is booked for 3rd week in September - all good so far.........

My next consultation with them, to report the results of the scan and 'check me' was sent and is towards the end of October - Soooo, I get scanned then wait 6 weeks (!) for results on potentially serious issues with the lung - in fact, let's use proper English here rather than medical 'chat - potential serious issues with the lungs = possible tumours on a vein around the left lung area - ...

I wasn't particularly happy with the 6 week wait after the scan - but it gets worse, 2 weeks ago they then write and say my October appointment is now cancelled and my new appointment is end of November - so, I'm having a scan 19th September then (supposedly) waiting more than 2 months for the results and THIS is 'close monitoring' ? ...............I was due to be seen again in December anyway under moderate monitoring  (ie: no issues on scans, bloods all good, everything seems clear so see you in 6 months = moderate monitoring)
Being seen in the last week of November does not say 'close monitoring' to me....

So guess what this means? .........Yes, I have to become an official nuisance all over again, I have to email my nice colorectal nurses and insist that my scan results are reported to me via email rather than waiting for 2+ months, I have to feel and behave like a nuisance again to get any answers - as if things just aren't hard enough some days :(

I read a report on-line the other night (you know how I like to 'know' things - lol)....the report was about a study they've been doing with MRI tests pre-surgery on rectal cancer. To cut it short, the idea was to see if MRI could reliably predict outcome and life expectancy depending on the effect that Chemoradiation had on the original rectal tumour.
Seems that my 50/50 chance of surviving for 5+ years has now been slashed to around a 27% chance of survival.........LOL, serves me right for wanting to know too much, eh :) ....Anyway, all that means is there is now something else I need to prove them wrong on :)

On another note, I read a different report which stated that over 50% of rectal cancer patients die within a year of diagnosis....Up yours! I'm still here......16 months post diagnosis and counting :-)))

Catch up soon
xx

Happy Birthday to my Youngest Son :)

Today was Dj's 12th birthday - we asked him what he'd like to do on his special day and his reply was 'just spend it with Nan & Grandad and keep it quiet' - so that was what we did.

He was pleased with his presents, mainly books and Xbox games from us - although Rab did get him his BB gun that he'd been virtually begging for. I was against the idea but it is only small plastic pellets and does look far less realistic than it appeared on-line.
He loves shooting things (not people - lol, just plastic bottles, tin cans, targets etc) and has a huge collection of Nerf guns, catapults, sling-shot, potato gun, cap gun....sigh.... so although I don't like the whole gun thing I was democratically outvoted on this one...Not to worry I generally do win, so occasionally it's right that I'm over-ruled and outvoted :) And he's happy.

Apart from that he received gift vouchers from Nan & Grandad, Sarah & Louise (thank you all) and also a set of books from  Nan & Grandad...lovely T-shirt and hoody top from his brother & Leanne plus they've given him an IOU for a trip to Thorpe Park (Theme park with rollercoasters etc) as they are away at the moment...Jacqui got him a lovely set for his WWII collection which included a replica Identity Card and Rations book...My Mum's friend sent him cash...and he has other bits on their way at a later date.

So the answer to 'What did he get?' is, probably too much as usual - but he doesn't get (expensive) presents at times other than Christmas and Birthdays so I figure it's okay to 'spoil' him twice a year - plus a very large portion of his presents is made up of reading material and I think you simply CAN'T spend 'too much' on books. His love of reading is well worth the cost in my opinion.

He had a small cake and I found a 'sparkler' in the drawer that I knew he'd be happy to light whilst we sang Happy Birthday to him - he twirled it around and this is how it came out in the photograph....

On Saturday he's going to spend the day with his best mate, A...they are going to have an 'Xbox Halo day' apparently..(he's absolutely mad on anything 'Halo') then the following Saturday we are taking him and four of his friends out for pizza and maybe cinema afterwards.

I asked him tonight what was the best part of his birthday and he said 'I'm not going to lie, it was the presents' ........LOL!

So all in all, a good day  :)