Pain Management plan.....

Today, Tuesday, is the day when I get to see the Clinical Radiotherapy (CR) staff to discuss anything I'm either worried about or struggling with - so after my session took place (17th - 8 more to go) I met with one of the really helpful CR's.

Told her that I really can't tolerate the pain any longer and it's been a battle to even attend the appointment for the last few days. She asked if she could examine the area - I agreed as long as she promised no poking around at all, literally just look no touching! (it's really *that* painful).
So she looked and said My Goodness! I'm not surprised you've been thinking about not coming, I definitely need to get a Dr to have a look and decide what we can do to sort this out today for you'...

I cried and she gave me a hug and said she thinks I'm being really brave by even showing up for the appointment after seeing the way in which I've now burned.
Told her I felt like a big baby and said that plenty of other people are probably putting up with way more pain than me without complaining - she looked genuinely shocked and said
'Carole, you have serious burns causing you massive pain and what has happened here is rare so I really don't think you are a baby at all - I actually think you're being very brave' - I felt better knowing that she didn't think I was just whinging about it all and could see that it was genuinely a severe problem.

Anyway, Dr then came and looked - said pretty much the same as the Clinical Radiologist - serious burns, need to get it healed asap, proper pain relief needed and review at the end of the week. Treatment may be stopped if we can't get it under control as the damage is extensive at the moment.

I asked her if she felt the bowel was maybe inflamed and if that was what was causing pain on bowel movements and she said
"The bowel is now badly inflamed without a doubt, inflamed, sore and causing me concern about long term damage now"

I realised that if I hadn't been told up-front in April that I was going to end up with a permanent colostomy bag, I probably would have been told that today, as she went on to say that normally this sort of burn damage around the muscle area causes long term permanent 'control' damage to the rectum and sphincter.
She went on to explain that it's unavoidable because the tumour is lying so low down in the rectum, it's impossible to treat it without causing other damage to the surrounding area....

Dr prescribed a mixture of Morphine and a healing gel called 'Nu Gel'. I have to break open the Morphine capsules and mix it with the gel daily and cover the burns with it as often as feels necessary.

They also gave me:
stronger painkillers and said I have to take them regardless of the appalling dreams (that'll be another post another time),
some medicated strips that can be placed against the skin without sticking (thank goodness for that!)
syringes and needles for getting the Morphine out of it's little containers,
sterile wooden sticks for mixing my gel mixture up daily
small pots to mix up my 'healing gel mixture',
a special bin thing to put all used needles and morphine bottles into,
and a selection of health shakes in various flavours as they are concerned because my weight has dropped off a little - it's currently 51kg.


When I left I looked like I'd just robbed a Pharmacy department - Dj was fascinated by all the various bits and pieces when I got home anyway, especially the 'Sharp' bin and syringes :-)


So am hoping that this will make some difference because the pain has been really bordering on being totally unbearable this last week and although I've managed to muddle through, every day has been so hard.
My CR said it isn't an instant cure but I should notice a gradual lessening of pain over the next few days - certainly by Friday I should be able to say I'm noticing a difference - apparently. I really hope so anyway.
Dr said that if the pain is still as hard to manage by the end of the week, then she'll be looking at Morphine by mouth and stopping treatment.
I want to get to the end of this now because I don't want to have a break, start healing then start burning all over again.
8 more to go.....fingers crossed that I can do it.

I did go.......:-)

Just wanted to add onto the previous post, I did go for my zapping session today - 9 more to go now.

Had a chat with the Radiotherapy staff before the treatment and they said that it's important to hold onto the small things, like NOW I'm in 'single figures' with remaining sessions - until 4pm today it was still double figures :-)

She also said that they do know it can be extremely painful for some people, they do really feel bad when they know a patient is in constant discomfort but it's for your own good :-) That made me smile.

She asked me to visualise the tumour during the remaining sessions and imagine it reducing in size each time - whether it DOES reduce or not is not the issue, it's the mental state of mind imagining that it will.

She was a sweetie actually and made me feel a little better about things.

So, I'm back on track - 9 more to go then I'll be able to relax and repair. I truly didn't know that Radiotherapy could hurt so much though, I thought it was just like having an x-ray with few or nil symptoms - I've learned so much since my diagnosis.

Muddled through somehow.....

The weekend was spent trying to ignore the stingy pain (which makes it sound like a mild discomfort and I can assure you it's definitely not)... and distract myself as much as possible.
I was optimistic that without having the daily Radiotherapy sessions my poor sore bum would feel so much improved....sadly that's not the case.

Last night I laid in bed, had a short cry and discussed with Rab whether I even want to continue with the sessions - when I first went to Kings back in April my surgeon asked numerous questions and the answer to all was 'No'...
Such as;
do you have pain when having a bowel movement - No
do you have constipation one day then diarrhoea the next - No
do you have the feeling that you've not emptied your bowels fully - No
do you have pencil thin, hard to pass stools - No
do you regularly pass mucus in your stools - No
do you have discomfort in the anal area after a bowel motion - No
do you feel your bowels are blocked or restricted - No

NOW I can easily answer Yes to all the above......I thought treatment was supposed to make you better not worse :-(

Before all this 'treatment' started I had a sore bum that felt like piles and a small amount of bleeding after going to the loo - not an alarming amount just a bit after a movement - now I'm constantly wiping blood and mucus from a backside that stings to high heaven and literally drives me to tears and I'm wondering is this actually really helping me or not?

I asked the other day 'How do we know if the tumour is reducing in size, do I not have a scan half way or something to show us that it's starting to work?'...the answer was 'well, we don't know but we hope it's helping'.

So I then asked 'So how do we know that 25 sessions is what I actually need or is it just guess work?' *I can tell they're not happy at being questioned when they don't actually have the answers to hand*....
The answer was '25 sessions seems to be good for most people'...

to which I then said 'But if you don't scan half way through maybe people would only need 15 sessions or 20 sessions, isn't it a possibility that I'm receiving more Radiation than I actually need or want?'...

Anyway, I shall go for my appointment today - allow them to zap me again and see how I feel tomorrow. After today it'll be 9 more sessions to go.

I'd have liked this to have been a more positive update to my blog but if I said I feel great, soreness has gone, am coping really really well now it would just be a fairy story and not a true to life blog. I'll hopefully be feeling better by the next update.

Other stuff you might want to know :-)

Yesterday I had a phone call from Kings to confirm that they have booked me in for a new MRI scan on 10th August. I then contacted the CT scan department and asked if they could also do that one on the same day to save me travelling backwards and forwards.

So both scans booked for the morning of 10th August - these are the ones they will be looking at to see if the Radiotherapy has done a good enough job in shrinking the 'walnut sized' tumour (!) that was there at the end of April.
If it's worked then they'll be discussing surgery dates with me when I go for my meeting with the Oncology department on 25th August. If it hasn't, that'll be a whole new post....

Apart from that, I'm looking forward to a day of doing not much tomorrow as Dj is going to a paint-balling 11th birthday party.

Picture below added 29/6/10


He's really really looking forward to this, has known about it for months and has been soooo excited about it.

He has to be at A's by 10am and Rab's working tomorrow on a wedding so I shall have the day to myself to either catch up on some sleep or just potter about doing bits and pieces.
Weather is expected to be quite good still, so I may go for a walk on the common and just get a bit of fresh air - then sleep in the afternoon maybe.

I just feel glad not to be having any Radiotherapy for the next two days and giving my skin a break during which I can, hopefully, get back on top of things ready for next week.




Sunday is 'Race for Life' on Clapham Common (and various other sites as well - think Leanne said she's taking part in the Richmond Race for Life this year)
If the weather is still good and I feel up to it I may go over and cheer some of the 'racers' on...last year there was a lady of 85 who speed walked the 5k race, I thought she was brilliant.

End of Week 3 Radiotherapy....

Today was my 15th session of Radiotherapy and I (somehow) made it to the end of the third week...:-)

This morning when I got up I wasn't going to go for the treatment today because my bum hurt so much, I'd had virtually no sleep (certainly not proper sleep anyway, more disturbed 'dozing' really), doing everything hurt, standing - sitting - bending - making a cup of tea - going to the loo - literally EVERYTHING I did was uncomfortable so I went into 'defiance' mode and decided (like a grumpy 5 yr old child) I'm NOT going, so there!

Walked Dj to school (somehow) and Nayla (Dj's friend Aatif's mum) walked back with me and asked how I was getting on. Told her about the pain, soreness and that everything hurt. She said to go round to her place in an hour and she'd cut me off some of her (magical) Aloe Vera plant and I could give it a go and see if it helped abit. After using just ONCE the soreness started to subside within 5 minutes - total relief from the persistent and ongoing discomfort.
So I DID go to my Radiotherapy appointment after all....

After being zapped for the 15th time, I met with one of the Clinical Radiotherapy staff and we discussed the discomfort and damage being caused.
She said she was 'quite taken aback' by Dr's advice on Tuesday to use Sudocrem as it is completely useless in Radiotherapy damage and sometimes makes things feel MORE uncomfortable.
She asked me if I was sure he'd said Sudocrem not Aqueous Cream - I said I wasn't just sure, I was 100% positive because he'd been really clear about stopping the Aqueous Cream as 'it's not exactly helping much' and changing to Sudocrem.
She then checked my notes and found he'd written it in there as well.

She then told me that she would never suggest Sudocrem as it's a barrier cream and not suitable for the job at all, I told her about using the Aloe Vera plant earlier in the day and she said that was a great idea, far more useful than using a barrier cream!
She had a look at the sore area/s and said it was definitely being caused by the Radiotherapy and wasn't a new outbreak of the Shingles virus - so at least there's some good news going on :-)

So the plan now is to continue with the Aloe Vera plant and she's also given me a local anaesthetic gel and suggested I could use it during the night if the stingy pain disturbs my sleep OR I could use before using the loo to stop the manic stinging/burning pain immediately afterwards and use the Aloe Vera plant during the day for general relief. Either way a combination of the two is what she's suggesting and leave the Sudocrem alone!

We had a chat about my new healthy eating plan and I told her about my book that my sister sent to me - she thought it was all positive and a good idea to try to get myself as healthy as possible by eating well.

Then she asked how I felt about not having the Chemo. Told her I was relieved and felt better off without it, one poison at a time in my system feels more than enough for me and she smiled and said 'I couldn't agree with you more'.
It's funny because I really expected at least one person to say 'You really should reconsider the Chemo, you're not giving yourself the best chance etc etc' BUT Dr, Clinical Radiotherapy staff and Radiology staff have all said 'Think you're doing the right thing'...makes you wonder if they just give it for the sake of giving it really.

So today turned out to be not such a bad day after all.

I've cried loads of times this week but it really was just because the pain was really becoming unbearable. I'll have a much more positive week next week now I've got a solution to it - apologies to everyone left feeling upset by seeing me upset, I do try to stay positive and in control but it's not always possible.

My sore bum !!!

Update from Radiotherapy yesterday as promised......

After my zapping session I met with my consultant Dr L. We discussed the sore areas and in particular the two patches that are having trouble healing at the moment.
He had a quick peep and said 'Oooooh, now THAT looks very sore and uncomfortable' (that's what you call an understatement!).

We then had another chat about the way forward, he said we could delay treatment for a week or a fortnight BUT feels that the skin may well flare up again more or less immediately as soon as we start again - or we could continue and see how things go for another week and try to get through the remainder of sessions if possible THEN let the skin heal once all Radio sessions are finished.

I decided that I will continue for now and we'll review in a week to see how the skin is doing with regard to repairing itself.

Dr L suggested that the aqueous cream is not helping enough so to try using Sudocrem instead and maybe a bit of neat Lavender to see if that helps.
So last night I bathed the area in a strong salt solution, plastered it with Sudocrem and dabbed some Lavender oil onto the non healing patches - managed to get 4 hours sleep before the awful stinging pain started again then got up for a while, took more painkillers and smothered the whole area with more Sudocrem.
Will stick with this routine for a few days and see if there's any improvement....keep your fingers crossed for me :-))

Today the weather is lovely here again, totally blue sky with not a cloud in sight. Temperatures expected to get up to about 27c and continue for the rest of the week. About time we had some sunshine that lasted more than a day at a time :-)
Anyway we have to make the most of it in London because Wimbledon tennis has now started and it's impossible to think that it WONT rain by next week - it's traditional to rain during Wimbledon and disrupt the whole thing!

Today is also the day when we find out if England are heading home from the World Cup!
Yesterday the French were on their way home after failing to go through to the next round - the French FA sent them home economy class (LOL - I personally think that's great and should England lose tonight I reckon we should send them back on RyanAir and charge them for the flights)...
Rab's still optimistically hoping against all odds that Algeria manage to pull off a miracle and qualify for the next round.

Lastly Manolis, bad luck for Greece last night - you hung on in there for a while but unfortunately it's all over for you guys now :-(
On a positive note, thought your Goalie did really well ...

Start of 3rd week of Radio....

Yesterday was the beginning of the 3rd week of Radiotherapy treatment.

Today, Tuesday, I have to see the Doctor and Clinical Radiotherapy staff (because that's what you have to do on Tuesdays).

When I had my Radio treatment yesterday the Radiographer said he was concerned about two patches of skin that are not healing (this is from where the shingles virus flared up) and wants me to see Dr L about it today because he feels that they may want to delay treatment to allow the skin time to heal a bit first. So, we'll see today what they say!

Apart from that I feel crap, have an upset stomach, sore bum/anal area, two patches of skin that won't heal, felt sick last night and bit of a temperature but that's subsided now.
Today I just feel like I have an upset stomach so have taken some of the anti upset stomach stuff they've given me and hope it helps, plus some painkillers for the soreness....
Also feel a bit down and quite tearful at times but this is apparently 'normal' for people having Radiotherapy.

Met Louise for lunch yesterday which was nice - lovely to see you Lou :-)
I didn't manage to eat much but at least managed to meet up, so that's an achievement in itself these days...
I'm sticking to my healthy eating plan but have no appetite again at the moment so forcing myself to drink decent juices and eat small amounts when I can.

Everything just feels like too much effort at the moment - you try to stay 'positive' but when everything hurts and feels uncomfortable, you can't get a decent nights sleep then it all starts again the next day it's bloody hard to keep in a positive frame of mind. That's not to say I'm in a negative frame of mind by the way, just that I'm fed up with feeling uncomfortable all the time.

Rab said on Saturday when I was trying to just keep going - you'll feel better when you have this operation because then you won't have this ongoing pain all the time...then I cried :-(
Feel sorry for Rab really because he doesn't know what to say to make me feel better.

He's right of course, once I have the operation I won't have this ongoing pain but I don't want the operation either so whatever he says it's 'wrong' really.
When I was at the hospital the other day I saw an man who was an inpatient walking through the shopping area with his drip attached, pyjama's wide open and huge colostomy bag sloshing around packed full of waste - I realised that soon that will be me and that was hard to see.
I didn't react at the time as I had Dj with me but it did hit me quite hard that is what MY life will be like in the next few months and really THAT was why I cried on Saturday when Rab said 'It'll be better soon'...

I told him about this man and Rab said 'Was he an older man?'...I said 'Yes, probably in his 70's', so Rab then said 'He's not bothered about hiding the bag because he's probably just glad to be alive for a bit longer, when you get old and then get saved you no longer care about what people think'... Makes sense I suppose but the truth is that I DO care about this huge change to my life, I do care that it will be different and there's nothing I can do about it.

Anyway, whinge over - I haven't got the bag yet so tackle that one later on, right now need to tackle the ongoing pain and discomfort. Let's see what the hospital say today about Radiotherapy continuing or not as the case may be!

Mum and Dad are coming over today to sort Dj out after school so at least I don't have to panic about being there for hours and being delayed - which I've now realised is 'normal' for Tuesdays.
The rest of the time I'm in and out within an hour now but not Tuesdays because there's so many other people to see as well as the treatment.

Spoke to Sarah last night which was lovely - can't wait til you get your internet up and running Sis, tell them laid back Greeks to sort themselves out :-)) and be careful on that Moped!

Finally wishing Leanne a very Happy Birthday for Monday, 21st June - hope you had a good day and got lots of lovely presents :-) xx