Next scan

new news, good and bad

2010-07-28T10:32:42Z

so I had my results fro my second lot of Sirtex treatment, but it ended up being more about what else had happened since then.

Turns out that whilst the radiation seems to have worked very well on at least some of the tumours in my liver, the chemo (irinotecan specifically) has stopped working entirely between the 2 lots of scans which were only really 8 or 9 weeks apart. I now have over 10 tumours in each lung, where I had none before. To say I was shocked to hear that is an understatement. That wasn't part of the equation.

So I had no chemo this week as my Oncologist s away and we need to talk about what they are gonna try with me next to deal with this.

I just can't believe that my Liver is finally heading in the right direction only for this to happen. my mum was already convinced it must have spread as I have been so unwell over the last couple of months now. The 2 aren't actually connected as the doc said I wouldn't have felt much of a difference if at all, the fluid and nausea etc are more of a coincidence, but that's how she worked it out in her head and who can blame her.

I just want to get better and that light at the end of the tunnel just seems to keep going out on me.

Am hopefully going away this weekend with a friend to the coast to get away from it, hoping it will be nice an sunny, but as long as i can chill and not think about it for a bit that will be enough for me.

tough couple of weeks

2010-07-20T13:05:21Z

Hi Everyone,

I hate coming on here and moaning but the last few weeks have been a bit rubbish. A couple of weeks ago I ended up with loads of fluid gathering in the space around my gut. I ended up looking about 7 or 8 months pregnant I was so inflated with the stuff and there was no shifting it. It was so uncomfortable, even finding a comfy sitting position was difficult.

Anyway they finally 'drained' me last wednesday and got 4.5 litres of fluid out of me! and that wasn't even all of it! Because I am on Avastin my Oncologist was reluctant for me to have a tube poking out of me for too long because I could have trouble healing, so there was some left in there. It's still noticeable but will hopefully now disperse naturally. then having dealt with that, just 2 days later I ended up with severe hiccups. After 2 days of constant hiccups I just couldn't take anymore. My stomach muscles were killing me from the fluid and now the hiccups. Thankfully the meds they gave me worked pretty much straight away. My muscles still ache and I still can't seem to walk in an upright position but I'm getting there.

Anyone had any of this? and once you've had it once did you find it happened repeatedly? just want to know what to expect. Am getting so fed up of the tiredness coming from one thing or another. Would be so nice to have a couple of weeks (or longer!) of normality when I could go out with friends and do fun stuff.

Mich x

Moving forward

2010-06-10T22:59:50Z

I have good news lately with the new that the first Sirtex treatment worked, to what extent they didn't really tell me. Second dose results are still a good 8 weeks away, so I will be probing them more. I'm hoping that most of them, like 90% will have shrunk and be responding. If not I think I am still in a fair bit of trouble.

When i first spoke to the oncologist about my scans and the tumours, I had the number 5 in my head. It seems to be my unlucky number. That would have been a result, as the number he actually came out with was 20. 20 tumours. And then it got worse when they realised that the oxiliplatin wasn't working. I'd had 4 doses by then so in the mean time the existing tumours had grown and I had also developed new ones. Brilliant. So it shouldn't be too much of a surprise how hesitant I am about how many have responded. People think I'm being negative about it. I'm not, it's just from what I've read about others who have had the treatment it doesn't always work on all the tumours, and I really need a bg number to respond or a resection will never happen, and the writing will be on the wall. Other people can't see that bit, but it's all I have in my mind. I so need this to really, really work.

I am so tired of all the scans and appointments, and ops. not to mention the chemo which kicks in again next week. I'll be up to cycle 21. A whole year with barely any break.

I am trying to do some creative writing about all of this so I can get it all off my chest and say how it all really feels. Haven't got too far yet as I keep going back and changing things and I haven't got past the day I found out yet. But hey I'm hoping I've got time to finish it in my own time.

I seem to be the only person my age on here who is this advanced in bowel cancer. My Liver is just riddled with tumours and the joke is I barely had any symptoms. And to have no history of it in my family it's not like I would have been alive to looking out for signs. I wouldn't wish this on anyone, but it all feels so unfair that I found out so late. Everyone seems to have had pain for ages and were still no further than stage 3. Granted that is still quite advanced but you can come back from it. I felt like I was done for from the start. It's only now that I have a flicker of a candle at the end of the tunnel that I'm clinging on to.

It's amazing how much you take for granted when you're well. I miss going out with my friends so much, but barely have the energy anymore. And as for romance, well, if you don't leave the house then that's never going to be an issue. Some what gutting when there is someone you really like, and have done since before you got diagnosed, but you know it would just be heartbreaking to start as you're lucky to have the energy to cook for yourself let alone go out on dates and maintain a relationship. I hate how much this illness has taken away from me. The one amazing thing it has given me is the biggest support group of friends ever. I never knew people could care so much, let alone about me.

I still haven't cried in front of my mum. I know how scared she is but I don't want her to see that I am too. I hope i never have to tell her I'm not going to get better.

Amazing!

2010-04-29T14:39:11Z

So finally got the results on Monday and was so so scared with every day running up to it, and could not stop the feeling of sickness on the way to the hospital.

Having established that I am apparently my own jinx as everytime I rock up to these damn consultant appointments on my own they throw me 10 steps back into utter despair, I very wisely took a good friend with me. And I think I did the right thing as at last, something seems to be bloody working!!!!

The main tumour on the right side of my liver has shrunk by 10%, which the consultant said was a better response in the time frame than they would have expected. They didn't measure all the tumours( if only it was ever that simple eh?) but that was just so amazing to hear. The whole 'only 30% of patients at your stage get a positive result' thing was just such a scary thought. I had built a story in my head to how I wanted that afternoon to pan out, basically with me being able to go round to tell my mum, call my family and organise drinks with my work mates and I got to do all of it! I have to say I had about 3 glasses of champagne and a glass of wine, the most I have drunk since the night before my very first op nearly a whole year ago, and was ever so slightly tipsy. Had forgotten how that felt!

The left side, which only had a small amount of the dose didn't see any improvement so I'm booked back in for dose number 2 in 4 weeks. never looked forward to surgery so much in my life.

Yay!!!!!!

worried

2010-04-22T14:20:37Z

Next Monday I finally find out if my SIRT has worked. To say I am terrified is an understatement, even though I am trying not to think about it and stay positive.

They told me from the beginning that the odds were not in my favour with just a 30% success rate at my stage. Obviously not what you want to hear when it seems to be your last chance. I've been keeping myself busy and trying to plan in stuff all the time so I don't spend my time thinking about it, but as it draws this close, I can't help but feel like it's all too much.

Chemo since the SIRT op has really taken it out of me, especially my last cycle last week. Just seem to need more and more sleep and get tired so quickly. It's so alien when I've been able to keep on top of it until recently. Working is getting exhausting but I don't want to not come in as it's keeping me busy.

More and more little things seem to set me off now, luckily I'm at home mostly when it happens but just feel so overwhelmed. I don't want to worry friends and family as I don't think they can handle seeing me that way when I'm always so together. I know that sounds ridiculous as they'd be devastated to think that I was holding back for that reason but I don't feel like there's anyone I can just grab and cry with without anything being said and just allowing to let go of it all.

What's worse is it's almost a year exactly since I was diagnosed. I've got so many memories of the fun stuff I was doing just before it as well as the awfulness of what followed soon after and it's all coming to a head again this year.

Have told my family I'm getting the results later than I actually am. If it doesn't go in my favour I need to deal with it my head a bit before I can tell them. Don't know how I would even start that conversation.

over and out.

SIRT in the offing

2010-02-21T21:25:13Z

Well I've been 'prepped' for my sirtex treatment on Wednesday. It was a hell of a lot more traumatic than I was expecting as no one had mentioned needing metal coils inserted into my arteries and veins until 5mins before the procedure, and trust me to be complicated and needs loads of the damn stuff, not at all fun. hopefully all worth it.

Got chemo to go for the next 2 days and then step one of radiation treatment. they're treating one side of my liver at a time. not sure which now as I had an episode this week with my liver expanding leaving me in agony, but it was the opposite side to where the biggest tumour is so that could be up for debate.

only a 30% success rate at my my stage (which is very flaming advanced) but that's better odds than I've got without it so I will take my chances with this. apart from the pain this week and a couple of random small infections i've been absolutely fine even at this pretty advanced stage, much to the surprise of pretty much every doc so far, so you never know, maybe i've got a few more surprises up my sleeve yet.

hoping to go away in june to spain with some friends provided this all goes well, and have just moved to a fab new flat so nice stuff happening lately. hope it stays that way, could do with a good year.

getting very nervous

2010-01-30T21:50:03Z

I'm due to start SIRT at the end of Feb. 3 weeks later than it should have been which means I'm without any chemo for longer than I needed to be which is a bit scary in itself. I've had over 6 months of chemo and as much as you wish you didn't have to keep taking the drugs it still scares the hell out of you when you don't have it.

I have the 'dummy run' to check the radiation will go in all the right places on the 16th and pray to god all being well with that, the treatment kicks in the following week. pretty much my last hope. probably gonna feel awful for days if not weeks but I just hope it works. I can put up with sickness if they can tell me it's working.

I'm chemo resistant which does not go in my favour, so the idea of waiting for yet more results fills me with dread. but it's a necessary evil.

the success rate at stage 4 cancer isn't great, but they've only had 100 patients so far and everyone is different, I'm using that as my twinkle of hope that it might just work.

I move to a cool new flat in 2 weeks so hopefully that's the start of good things for this year. I had the best trip ever a couple of weeks back when out of the blue I was able to go on my company ski trip. Bearing in mind they had already flown out (I was gutted as I had missed out by a hair) to get a text saying 'book a flight we've got a space for you' made me the happiest I've been in months. I literally smiled all the way from london to saalbach. I was a very happy bunny. allbeit a bunny with a sore bum by the end of it thanks to having to learn to snowboard very quickly!

let's hope I having something else to celebrate soon

need some hope

2009-12-26T16:49:09Z

had more bad news last week. The Liver surgeon thinks I am inoperable, leaving me with only one other potential option, if I am a viable candidate, which is SIRT. I have asked for a second opinion from Dr Rees in Basingstoke and have to have an MRI to see what he thinks. Seeing the oncology team at the Hammersmith who deal with SIRT on the 4th.

Haven't told mum yet. My cousins and some friends know. This is just getting so hard. Thinking I may not even see my 30th birthday is just so scary. Had plans to hit Vegas with some friends and none of it seems possible right now. Have cancelled my Jan ski trip, too much yet too little going on all at the same time.

I'm hitting a wall right now. Don't know how to stay positive anymore. Just can't seem to stop crying when I'm alone. I just want to be better.

Good day

2009-12-03T20:00:30Z

Today was a good day. Work was funny and productive, one of my Uni friends might be coming over from Tokyo to work in London and I got a fab wig that looks awesomely natural. Today I'm a happy bunny.

Got my scan tomorrow, and a nice lunch courtesy of a business contact and seeing Breakfast At Tiffany's in the evening. All round busy but nice hopefully. Gonna be knackered by 10pm! And I have to fit some birthday drinks on Saturday night followed by some indoor snowboarding on Sunday morning....what was I thinking when I organised this week. Good thing it's my 'safe week' so no nasty chemo effects, I'd be buggered otherwise.

get more and more anxious for each chemo session as the effects are starting to build up each time. hate the feeling of being hungover for 5 days, when I'm not even drinking!! not fair! hopefully not too many more before surgery is an option.

buying new hair...the perils

2009-12-01T22:03:00Z

So having got my head round the fact that my hair is gradually thinning beyond recognition, I decided to pre-empt patchy head syndrome and start hunting out 'new hair' in the way of wigs.

Took a trip to Selfridges as they have a little concession there used by Hot Hair, first on my own, the next time with a friend. You'd think that they would train the staff to understand that it won't just be girls looking for 'party hair' that will use their services....well the girl that served me was not only miserable and had to keep being chased to serve me, but actually really rude.

I had a list with me as I had looked on their website before my second visit and made a list of all the ones I wanted to try on, not more than 7 I think. Anyway I get about 4 in and the girl has the cheek to say to me " Are you going to buy one of these or are you just trying them on for fun". I thought my friend was going to deck her she was so livid. I'm 29 not 16 for christ's sake. I wasn't rude to her despite her lack of attentiveness and the massive chip on her shoulder that she was clearly carrying, and said yes I was looking to actually buy one but at over £100 a time I wanted to try the ones on my list to be sure that I was getting the that suited me the most.

Anyway, I try on a couple more, and get to the last one on my list and ask for that one. She turns around and says "I can't let you try on anymore"!!!!! I asked why, and she said they just weren't supposed to let us. Again I asked why, when they're all out on display. My friend piped up at this point, saying how ridiculous she thought that was and that I wouldn't be buying one without trying on all the ones I wanted to as I needed to be sure. The assistant conceeded, acting like she was doing me favour, with her last jibe "well this is the last one".

Why do some people find it necessary to be totally unsympathetic when all you want to do is get through what is a pretty hard thing to do and act like total arseholes? My friend convinced me to complain to the manager, who was very apologetic, but it was still totally out of order. I had told the assistant that I was losing my hair but that change her behaviour or attitude at all.

I have to say on the flip side, the assistants at Bloomsbury Wigs were brilliant and so much nicer and helpful. And the wigs are better there too. Would definitely recommend anyone who is thinking of getting one to go there. I'll be getting one from them this week, it's not the cheapest but they look so natural that's it worth that little bit extra to feel comfortable about how it looks.

Rant over.

staying positive

2009-11-29T17:41:17Z

Another few days before the next scan and then a few more days wait until the results. My Oncologist is going to get me an appointment with his Liver surgeon specialist to see what he thinks in terms of surgery.

As much as I'm dreading the idea of more major surgery, I know it's the only way that I'm going to shift this nasty disease which is determined to get rid of me, so the sooner the better I think. Hoping the tumour is down to at least 5 cm, effectively leaving me where I started before it was realised that the Oxiliplatin wasn't working but a lot closer to getting something done. never know, the surgeon may decide that's enough for him to get cracking. fingers crossed.

Taking inspiration from the people on here that have been through the same and are now recovering well and in remission. There is always hope.

Next Scan

2009-11-22T21:12:23Z

My next scan is in a couple of weeks and I'm starting to worry about if the Irinotecan will still be working. Will have had 8 doses of it when the scan happens, and the last scan after 4 doses showed it slowed right down in reducing the main tumour in my liver. I don't know if that's bad, normal or still good. After having had a failed result with Oxiliplatin after 4 doses it's all a bit scary. Not sure what they'll with me if it has stopped working. The idea that it might mean there's nothing they can do is ever so slightly terrifying.

Was aiming to start the Rave diet as it was recommended by a friend but not sure how I might react to it. It means cutting out all meat and fish, and that sounds not only impossible 7 days a week, but it could possibly have a negative impact on my overall health by doing it. Don't anyone who has tried it for cancer reversal purposes so no idea who to talk to about it.