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

Following advice or ignoring it & doing your own thing ?

One thing I've discovered since being diagnosed with cancer is the conflicting advice on offer...
For instance my colorectal cancer nurses informed me that I should eat ice-cream, cream cakes, very high fat foods, doughnuts, McD milkshakes and chocolate because they were worried that I would lose weight after the surgery in September....

Then when I met with the Clinical radiologists they tell me 'No! don't put on any weight because we've done your tatoo marks now and it's important to keep your weight stable during Radiotherapy'...

Then I read up on numerous internet sites about healthy stuff and cancer and find that time and time again I'm seeing that sugar is possibly one of the worst things to indulge in - cancer feeds off the sugar - along with 'bad fats' (hydrogenated and trans fats for example).

Now some people may say all this faddy food diet stuff actually means nothing, just eat what you want it makes no difference to cancer..... Well, of course that maybe true BUT when I lost my appetite back at the end of last year (2009) at times my body was giving massive signals that all I wanted was sugar and bad fats - coincidence maybe or possibly the bad cells asking to be 'fed'?

I don't really know - but what I do know is that I've put myself onto my own type of healthy eating plan which will consist of fresh fruits/vegetables, rice, lentils, flax oil and seeds, Chlorophyll supplement as I've been advised this is good as well for increasing the oxygen in blood and cancer doesn't like excess oxygen. It won't cure me but it sure as hell won't kill me.

I started this a few days ago and it's gone ok - apart from yesterday when I struggled to eat much, so instead of worrying about it I made some of Tony's healthy green drink (and forced Rab to have some too, LOL) and ate bits of fresh fruit all day.
Yesterday I could so easily have eaten something rubbishy like burger and chips because that's what my brain was telling me I needed - well, no chance tumour!! You're getting green veg, fresh fruit and healthy stuff from now on....if you're not happy with that you can always leave :-)

Jacqui got me a yoghurt maker for my birthday and yesterday I made up the first batch which was then ready today.
It was lovely, probiotic homemade yoghurt which I served with fresh raspberries, strawberries, chopped nuts - it was easy to eat and delicious. I shall be using this gadget lots. Rab was impressed and said it tasted much nicer than what you get in the shops - next batch I make will be a Greek bio-yoghurt :-)

Tonight I made a nice vegetable lasagne with salad, feta cheese, olives and a beetroot/bean side salad. I didn't manage much of the lasagne but did at least eat some - then I made some juice out of apples, pear, orange and carrot so at least getting some good vitamins inside me - even if it is only in juice form.

I'm also reading the book that Sarah sent me this week (thanks Sis x ) 'Anti-cancer a new way of life by Dr David Servan-Schreiber'....good reading and gets you into a more positive frame of mind which was exactly what I needed.

I've now completed 10 sessions of Radiotherapy - 15 more to go which means that next Wednesday I'm more than half way there.

Review of my Chemo plan...

Yesterday had my 7th session of Radiotherapy....(7 down 18 to go!) - my skin is already quite burned and they think it will remain scarred afterwards however not many people get to see my bum so I'm not that bothered :-)

It isn't actually too sore or painful (from the burns anyway - it's only the 'usual' pain caused by the actual tumour site) so just sticking with the Aqueous cream and hoping it doesn't get to be unbearable uncomfortable.

Met with the Consultant afterwards and had already made up my mind earlier in the day that I didn't want to continue with the Chemotherapy treatment.
My gums bled badly again Tuesday morning, inside of my mouth is still painfully sore, the chest 'ache' is easing a bit but still a bit of a concern and after weighing up the percentage odds of it either killing me or possibly helping (or not) in the long run I decided the risk to my overall health is too great a price to pay.

I expected some opposition simply because Doctors/Consultants are the ones who know what they're talking about, whereas with me it's just a feeling that it's not the right treatment.

I got no opposition whatsoever, he completed agreed with my reasoning and logic and said he personally was 100% comfortable with my decision.
He also admitted that they don't really know for sure whether it does actually make any difference - in some people it possibly helps and in others it causes different problems so on those grounds he was happy for me to refuse to continue Chemo.

He also said that it is important to remember that Chemotherapy is a very powerful poison that just doesn't suit everyone (*personally I'm surprised it suits anyone never mind everyone*) and that he would expect to see some of the symptoms I've had (gums/chest discomfort/rashes) towards the END of the treatment and certainly not at the beginning

We then discusssed that should a new tumour surface, Chemo could/would then still be an option - I agreed that this could be a possible consideration in the future (just not now).

Left the hospital feeling like a weight had been lifted off me :-)

My next plan now is to tackle the eating problems I've been having and go onto a healthy eating plan involving Flax Oil & Flaxseeds/Linseed and Green vegetables....before anyone starts wondering if I've lost it completely - it's NOT a cure, it's a plan, there's a difference!

2nd Week Started....

Today, Monday, 14th June, was the start of the second week of my 5 week Radiotherapy treatment. Went fine today pretty much in and out inside an hour - so all good :-)

Tomorrow after Radiotherapy I have to meet with the Clinical team and also the Doctor to review my Chemo treatment. I've given this so much thought over the past 5 days but am still no nearer to really knowing what I want to happen next (although I'm fast learning that it doesn't really matter what I want to happen, because things just crash along - completely out of my control lately)

I've read up on stuff that says having the Chemo gives you a slight increased chance of the cancer not returning in the future - but then I've read stuff that says the Chemo itself can and does cause different tumours in the future.

I was on Chemo for only two days last week and that resulted in the onset of a shingles type viral attack, my gums have now bled for the past 3 days, the inside of my face is sore and uncomfortable, I have a dodgy 'ache' type feeling on the left side of my chest....and I have no idea how my body will/would/could react to a further 28 days of Chemo tablets. Like I said, I don't really know how I feel about it all now so I'll wait and see what they say at the hospital tomorrow and take it from there.
I'm confused.co.uk tonight and just want it all to go away and leave me alone.

On a brighter note, had a visitor from work pop in to see me this evening, Sophie, one of the young teachers at our school. She came round to drop off a present from the Office Crew which was a bright red ENGLAND shirt.
They thought I'd like to have it to wear during the next match, it's part of the Bobby Moore Bowel Cancer Campaign so I shall wear it with pride. Sophie tells me that the girls in the office have got themselves one each and will be wearing them when England play :-)....Let's hope it makes the difference eh.



Rab's still smarting from the Algeria match yesterday - apparently the Ref's a cheat and blind and biased !!!
I've managed not to laugh in front of him though because he SOOOO wants them to do well (not a hope of course but he's optimistic at least).

Djamel's already told him 'Daddy, I'm supporting England during the World Cup and I hope you can live with that'...L0L....

As for Greece???? Manolis, what on earth happened there

Dj's new room :-)

As you all know, Dj went off on a trip with the school on Monday 7th June to Wales for the week.
Whilst he was away James, Jawad, Terry, Leanne decided to sort out his room. So James took everything out (a major achievement alone!) and the front room was like Hamleys Toy Shop for a few days.
He has boxes that have never been opened simply because he has too much in too small a space and generally can't get to some of his stuff :-(

Anyway, room was painted - ceiling, walls, doors, skirting - then shelves were put up, furniture re-organised, new PC and table placed into the corner, new cabinet built and placed into room numerous games and pieces of plastic junk found their way to the charity shop (thank you Pat for collecting and getting rid of piles of toys before he came back and found them all)..
Leanne put up the new curtain rail and hung his lovely green (favourite colour) curtains on Thursday evening and then on Friday me and Rab got the last of the stuff back into the room, washed the floor, wiped away dust from drilling and waited til he came back.

After being back at home for a while, he suddenly remembered that he'd overheard me and James talking about 'sorting' his room while he was away and asked 'By the way....what did you do with my room, have you touched any of my stuff, you didn't move anything did you or break anything?'....I said 'when you feel ready go and have a look'..
Seriously you would think he was being sent to face a firing squad - any type of change just really does worry him :-) So off he goes to his room, takes an audible deep breath and tentatively pushes open his door and steps inside then.....silence....complete silence for about 90 seconds then I hear this little voice that says (to himself, not really for our ears) 'Actually I quite like this'...
YAY! Result, no tears, no fuss, no distress and threatening to leave home - just simply 'I quite like this'...Brilliant. :-)

Later on we have a long chat about the benefits of having a more grown up room, more organised space to do homework in and sometimes just chill out in and he admits that he's wanted to get rid of stuff for ages but it's something he finds too difficult so he's totally relieved that we've gone ahead and made the decisions for him.

Note to everyone - NO MORE LARGE PRESENTS PLEASE because he'll just feel he has to keep them and get himself overwhelmed all over again :-)

Finally a huge thank you to James for all the work you've put in (e.g. moving stuff, painting ceiling/walls/paintwork, putting up loads of shelves, buying the DIY stuff, building cabinets) and making his space a nice relaxing place for him;
Terry and Jawad for helping James out with your painting skills;
Leanne for your exceptional PC chair building skills and putting up the lovely curtain rail;
Jacqui for drilling the holes for Leanne's curtain rail and helping to find new homes for some of the better stuff that needed to go;
Pat for collecting all the stuff that would have been put immediately back into his room if it was still in the house when he got back
....Great team effort and very appreciated.

1st Week of Treatment......

Hi all,
I've not updated my blog since last Friday simply because I was too tired each day after getting back from various appointments, and some days I was just too uncomfortable to sit at the PC for any length of time.

So, here's where I'm up to now.....Monday went off to the first Radiotherapy appointment (1.10pm) at St Thomas'. Rab came along with me which was nice, I'd already decided to go on my own but he said he wanted to come and had taken the day off work so I gave in :-) Lots of sitting around and waiting then more chatting about the treatment, side effects etc then finally the first treatment takes place.

After that have to sit and wait in a different area to collect Chemotherapy medication - by 4pm both of us were getting hungry, grumpy and tired. Finally got seen around 4.30pm - more chatting about the side effects and then eventually off to another room to be issued with the Chemotherapy medication - 70 doses (140 tablets) over 35 days of toxic poison....lovely :-)
More booklets to read, warning signs to look out for, a special card to carry in your purse which warns health staff that you are toxic (only joking, it's to warn them that you are on Chemo in-case you collapse somewhere during your treatment period).

So eventually we get out of the hospital at 5pm and home just before 6pm. Tired, hungry and irritated that it's all taken so long.

Tuesday........should be quicker I think before going ...hmmm - not really. After 2nd Radiotherapy appointment they tell me 'You HAVE to see Clinical Radiotherapy staff every Tuesday to review your treatment'....I remind them it only started yesterday and to be honest nothing has changed overnight! However I 'have' to see them so more waiting around, more chatting, more discussing side effects and when to contact hospitals/medical staff/999 etc....finally escape around 4.30 and arrive home just before 5.30pm - again tired, hungry and irritated that it's all taking up so much time at the moment.

Wednesday - MUST be quicker today eh....Well it probably would have been except I wasn't feeling well at all. Had a dodgy pain, odd rash and some small sores appear around the site that Radiotherapy is concentrating on at the moment. Spoke briefly with the Radiographers who decided they weren't happy with it - however we proceeded with 3rd treatment and then I had to wait to see Clinical Radiotherapy staff again. Actually wasn't so bothered by this today as was feeling quite unwell anyway and it made sense to see someone before leaving.
Saw Cathy, Radiotherapy nurse who confirmed that she also 'Wasn't happy with this at all' and decided to call down the Registrar from Guys hospital to have a look and decide what to do.

Senior Registrar arrives about an hour later on the bus from Guys :-) She's lovely and explains that in some rare cases (*sigh*) Chemo combined with Radiotherapy can activate the Shingles/herpes zoster virus and this is what they think has happened. So I'm thinking 'Oh ok, that's not so bad then?'.......WRONG!

It's so bad they've stopped my Chemo treatment and it will have to be reviewed next week. Apparently it's too risky to take Chemo with this virus because it can cause a type of blood poisoning and organ failure - so Chemo has been stopped, for now.
I'm now on a different type of drug (anti-virals) to try to get the virus back under control but she has already warned me that if this doesn't happen rapidly then the Chemo is not an option any more.
Pass me that brick wall so I can just smash my head into it at full speed please.....GRRRRRRR!



It feels like every time I get my head around doing something, it then bloody changes and I'm taking one step forward to two steps back all the time.
I didn't want the Chemo in the first place but they insisted it was essential to reduce the size of the tumour and to mop up any loose cells that may be heading to new resting places (mainly they are concerned about the liver/lungs next)....So, I eventually decide they're right and I have to take this blasted toxic stuff that will gradually poison me over the course of 35 days - in order to give myself maximum chance of recovery - THEN 'Sorry, you can't have it'.....Arrgghhhhh !!!

Thursday and Friday were both much quicker appointments. Both days the Radio was booked for around 11.30am and I was back home by 1.30pm.

And so ends the first week of treatment :-)
Will update next week as things develop.

Sunny Friday

Well, the weather in London has been lovely for the past few days again, warm summer sunshine but not too hot.
Sometimes London becomes totally suffocating in the summer heat but not yet :-)
I just wish my mood was full of summer sunshine because it's not. I can't seem to be bothered about pretending to be fine at the moment, I'm not fine!

I am in constant discomfort, feel totally fed up, can't be bothered to discuss ways to feel better because I don't want to feel better I want to be better - and that comes at too high a price right now.

I feel angry and irritated and I don't want anyone to tell me to 'pick yourself up' or remind me how much I should be feeling grateful for - I already know all that and I still feel depressed, uncomfortable and angry.
I don't want to talk about it - I just want to be left alone, I want to be depressed right now - being bloody positive all the time is just too hard.

Probably I'm feeling like this at the moment because the initial treatment starts on Monday and that of course takes me nearer to the next stage of treatment, the surgery.
I don't want the surgery, I don't want the damn bag and I'm tired of pretending it's all going to be OK because it's not OK...I don't want ANY of this - so today and until I feel like it I shall be staying in my foul mood.

Anyway, spent the day labelling clothes and starting to pack Dj's suitcase for his school trip.
He leaves at 11.30am on Monday 7th June and comes back about 5pm Friday 11th June.
James, Jawad & Terry are going to be tackling his bedroom while he's away so hopefully that'll be a nice surprise for him when he returns...... I say 'hopefully' because those of you that know Dj will know he really doesn't respond to change very well - so 'hopefully' he'll love his new style room (fingers crossed) :-)
My main concern about his room is that the vinyl flooring hasn't yet arrived - eeek! Oh well, if it doesn't turn up on time we can just sort that out when it does get here...

Dj has spent the past 3 days with James and Leanne to give me a break. He loves going there during the school holidays because Leanne takes him to work with her and that way he gets to play with other kids. He was supposed to come home yesterday but phoned and asked if he could spend one extra day. Leanne was happy for him to stay longer so I agreed.
Tomorrow he'll need to get his hair cut and then sort out his homework project (daft idea to give them homework when they're going on school journey next week, because no-one will remember and it won't get checked when they go back to school - which then means he'll feel like it was all a waste of time).

Apart from that, nothing special to do this weekend - just preparing for the trip really.