Mission Remission Achieved !

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I haven’t posted on my blog since I finished chemo at the end of Feb and that’s because… there’s not really been that much to talk about. Life has continued, I’m getting stronger (and fatter) by the day and generally I’ve just been enjoying being able to do simple things like going to the supermarket, being able to walk around without feeling like I’m about to collapse and eat all things dairy!  It’s weird how much all these things mean to you when they’ve been taken away for so long.

Anyway, I digress. The reason for this post is I got the results back yesterday from my CT and MRI scans that I had in April and as you’ve probably guessed from the title of my post… they were both CLEAR! It’s official, I’m in remission from this cancer!

I have one more little procedure to go in July to correct an issue with my graft after last year’s surgery but then no scans for another year! And thankfully no more colonoscopies for another three years (if you’ve ever had one of these you will understand how grateful I am for that!).

Woo hoo! Happy times.

 

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26 Feb 2016 30/30 DONE!

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My last chemo!

So, this is the day that I’ve been imagining for nearly 18 months. My goal. My reason to have kept going through all the gruelling treatments, surgeries and body transformations. Today I am no longer a cancer patient. Today I completed my last chemotherapy treatment. My 30th chemotherapy (40 if you count pre surgery).

I’m sitting at home propped up in bed, writing this and I cannot even describe the emotions that are going through my head. A mixture of excitement, elation, sadness that I won’t see my nurses anymore, feeling a little lost that I don’t have the same regular protective hospital bubble around me along with the familiar wave (or more like Tsunami) of slight nausea and fatigue from the chemicals pulsing through my blood stream. There are tears streaming down my face as every single moment of this journey flashes through my brain and I realise how much a life can change in such a short amount of time.

I’m proud of myself though. I did it. I didn’t give up and I’ve learnt to accept my new normal. I’m even more proud of all my family and friends who have supported me through each stage of my treatment. Especially my husband, how one man can give up life as he knew it to look after me, cook for me, clean up after me, wipe away my tears, bear the brunt of my chemo tantrums and still work a stressful full-time job is beyond me. I love this man with all my life.

I still have to have a CT and MRI scan towards the end of March which will officially confirm my remission but from today I start my new life free of cancer. I’ve been gifted a future and I can’t wait to see what this brings.

What I’ve learnt from this is don’t take life for granted.Cheesy I know. Be happy. Always tell those you love how much you love them. Don’t wait to make your dreams come true. Live the life you want now, don’t wait for things to happen. Anyway enough of the soppy, cheesy shit.

I JUST F***ING BEAT CANCER’S ASS!

All I Want For Christmas Is To Be Better

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I’m back on chemo after a two week break and oh how I have missed that crushing fatigue and deep depressive state that follows a dose of good old bleach.

These last few weeks have been tough. I’m having issues at the moment with my haemoglobin (red blood cells) regularly dropping off the face of the Earth leaving me so exhausted I can barely talk and so out of breath that walking up the stairs is a struggle. Not an ideal state to be in when you’re trying to hold down a full time job. It would seem that it is probably a combination of chemo and my kidney failure that is causing this but they can’t be sure as neither the chemo or my kidneys should be affecting it that badly.

My white blood cell count and my platelets are also struggling at the moment leaving me at risk of infections and bruising and bleeding easily hence the reason why I needed this break.

I’ve managed to reach the 20 chemos stage which means I’m now two thirds of the way through treatment. 10 treatments left to go. It’s getting hard now with all the chemo backed up in my system and I’m getting really bored of discovering new intolerances to food. Lactose has become a new enemy. I also seem to be lacking in the eyelash and eyebrow department and my hands, feet and around my stoma area are permanently bright red and feel like they’re itching and burning all at the same time – another beautiful side affect of the 5FU.

The reality of the past year feels like it has set in too. I think that I’m just starting to realise the enormity that all these changes to me physically and emotionally are here to stay. I feel self conscious about my colostomy and it’s something that is always in the back of my mind. I feel insanely jealous that most people don’t have to shit uncontrollably from their stomach, change bags constantly or worry about making loud noises in quiet places. I’m also still not fully healed from the surgery and it’s getting frustrating after 8 months. I find that I get easily irritated by the everyday. If your life’s worries are solely your hair, make up, nails and what you’re going to wear next weekend to get drunk in, then I probably don’t have much time for you. Let me know when you’re bowel is sewn to your stomach. Or you could just realise that again, I’m just jealous that I have more than that to deal with.

Basically, this Christmas I would trade every single present from Santa to just be well, to be able to ditch the chemo, to not have a permanent colostomy bag and to never have to deal with cancer again. Although feel free to buy me shoes…I like shoes.

 

Life Just Got So Damn Busy Again…

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It’s been over two months since my last post and I guess it’s because life just got so damn busy again.

I started a new job back in September and well, what can I say. It’s hard work. Juggling chemo, hospital appointments and a full time job is completely exhausting. At the moment, I spend my days dragging myself through the day praying I can make it through and my weekends are spent trying to recover from my chemo hangovers which are getting increasingly worse after each treatment, now that the chemo is building up. These last few weeks have seen hospital admissions, blood transfusions, tiredness, sickness, stomach pains and surrendering my eyelashes and eyebrows to chemo but I’m determined to keep going.

October marked one year since my cancer diagnosis and wow what a year. This time last year, I had no idea what my prognosis was and although I have been through hell and back, I’m so thankful that I can say that the cancer has now gone and I can (eventually) look forward to having  a happier and healthier life than just one year ago.

November saw my first ‘stomaversary’, yep, a whole year as a bag lady and even though my pink crinkly friend and I haven’t been seeing eye-to-eye recently (it’s not a fan of chemo), it was the first major step towards my life-saving treatment. I’ve learnt so much over the past year, including a whole new ostomy language (can anyone guess what a Dyson is!?), the most being acceptance of my new body and lifestyle, something which I have found very hard to do. Each new task is a challenge and I’ve had to resign myself to not being able to control every situation.

So the plan for now is to carry on. I’m just going to get myself through each day and be the best that I can. I know that’s not much and that my attempt to be ‘normal’ isn’t going how I thought it would. I still feel like I’m in my ‘cancer bubble’, it’s pretty lonely in there and I’m acutely aware that I come across as distant and unwilling to make new friends, as I turn down time and time again offers of lunchtime outings and night time parties. The truth is though, I’m still too ill to do these things. I’m also scared of eating out in case I embarrass myself (I can’t imagine exploding colostomy bags are a great conversation starter) and I can’t walk very far without getting breathless. I hope this changes over time, as I don’t want to be ‘that boring person’. It’s hard not to feel like a failure when things aren’t going as well as you want them to.

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The countdown is on  19 chemos down, 11 more to go. Roll on February.

A Letter To My Cancer

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Dear Cancer,

It’s been nearly a year since I found out that you had crept into my life, ripped through my body and changed my life permanently in ways that I wouldn’t have even thought possible.

You chose my bowel, you chose to make this both physically and mentally excruciatingly embarrassing from the beginning, as who likes to talk about ‘that’ kind of thing. I almost didn’t find out about you as you came to me in an odd way. I had misread your signals for months, the agonising back pain and all that time stuffing laxatives down my face thinking that my medication had stopped you from working. You got fed up of being ignored and mistook for other illnesses and decided to break free of my bowel and spread to the most private of spaces, making me bleed uncontrollably. I had to beg for you to be found.

You were found and they said they could get rid of you. It wasn’t going to be easy though. I had to go through intolerable pain, be burnt to a crisp,  have toxic drugs pumped into me and my body would physically change forever leaving me with permanent reminders that you had been.

You left me with a colostomy bag and with my uncontrollable bowel now sewed to my stomach. You caused me to go through seven hours of major surgery having half my digestive system and my BUTT removed for f*@ks sake, plus major plastic surgery to plaster over the hole you left. You left me in intensive care even though you know I hate hospitals. I spent months recovering from you, feeling frail and barely able to walk.

Most of all you made me feel completely alone and isolated even when I was surrounded and supported by all my friends and family. How could anybody even begin to know how I felt with all that you had done. How could they even comprehend what it was like to go from being ‘normal’ to shitting into a bag, how a control freak was not able to control what was happening to her body. How scared I am of you coming back and taking more of my body.

You may think that I’m sat here feeling sorry for myself by all that you have done. The fact is though that I WON. You are now gone and those toxic drugs that I’m having are stopping you from coming back. You gave me a bag but I decided to show it off and tell the world about it. I refused to be embarrassed by it. I chose to do that. I CONTROLLED that. My scars no longer upset me and I get stronger day by day. Now that you are gone I have decided to go back to my normal life and not let my physical differences beat me. I decided to write about you and out you in the hope that you won’t cause others to suffer as much as I did.

You have opened up my eyes, made me realise where my priorities lie and have given me strength that I never knew I had. I have learnt so much.

I may never be able to forget you, I don’t know if I’ll ever be able to forgive you but I do know that I’m better than you.

Tough shit cancer… you lose.

What’s in a Gene

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Just over a week ago I went to see a genetics counsellor to discuss whether I should go ahead with tests to find out whether my cancer could have been caused by a genetic malfunction or if it was ‘just one of those things’.

Although bowel cancer in the under 50s is on the rise, it is still considered to be rare and a lot of ‘young’ cases can be attributed to a specific change in their DNA code or a hereditary condition.

My dad came along with me and together with the counsellor, we went through our family tree. Although there has been a lot of cancer in my family, there has only been one other case of bowel cancer, which was my grandfather on my dad’s side who died of the disease when my dad was really young. As genetic testing wasn’t available then, it’s impossible to say whether there was a reason why he developed this. Based on our family tree as it stands and the fact that neither of my parents have shown any signs of bowel cancer or had significant polyps, there doesn’t appear to be much of a family link.

So why go ahead with the testing?

Well, following a further conversation this week with the genetics counsellor, my pathology report indicates that they found 29 polyps in the bowel that they removed from me during surgery. This is a significant amount for it to probably just be a random case and this tied in with the fact that I’m only 31 gives them a good reason to want to go ahead with the testing.

So what will they be looking for?

There are two main conditions that they are looking for in me. The first is the dreaded FAP (Familial Adenomatous Polyposis) again. I’ve already had a colonoscopy to check for any extra polyps that could link me to this and so far it’s been clear. I could still have this though. It’s caused by a dominant gene passed on usually by one parent and causes a break in the APC gene. I could also be the first one in the family to have this. If I do have FAP, then I’m back for more surgery to remove the rest of my large bowel, so we don’t want this!

The second is a condition called MAP (MYH Associated Polyposis). This condition presents in a similar way to FAP but usually with less polyps. This is caused by a recessive gene which means both parents would have had to pass me a crappy gene to cause a break in the MYH gene to cause the cancer. Regular colonoscopies  and endoscopies (cameras in both ends!)are usually the way to manage the condition.

It could be caused by a break in my DNA code that they don’t know about yet. Everybody has changes in their DNA. It’s what makes you, you. It would be hard for them to determine whether one of those changes is what gives me my personality or gives me cancer.

I think it would be good for me to be armed with this information. As well as determining whether there’s a possibility of me being prone to other cancers. I want to find out for my brother and sister (and their future children if they choose to have any) as well and make sure that if we do have these genes that they will never have to suffer the vile treatment I’ve had to cure my cancer.

Does My Bag Look Big In This?

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I’m having one of those days.

I’m struggling for clothes that fit comfortably around my stoma. I seem to either end up wearing clothes that make me look like a miniature tent or end up sitting uncomfortably in my favourite skinny jeans secretly undoing the top bottom to relieve the pressure off my annoying front butt.

But what to do?

My APR surgery in April pulled my stoma from its neat out-of-the-way left side position into the centre of my body  and it’s causing me great jeans angst. Not exactly the worst of my problems you may think. BUT it’s an annoying one all the same.

General advice seems to relegate me to a life of leggings and long baggy tops but I don’t want to give up just yet. Don’t get me wrong, it is a tried, trusted and comfortable combination but being only 4 ft 11 and 6 stone, aesthetics wise it’s just not the best. On the jeans issue, it has been suggested that I wear maternity jeans. This both horrifies and depresses me in equal quantities. Don’t get me started on high-waisted jeans either, they just squish everything wrong.

Dresses look better but I have this insane fear of my bag falling off and dropping to the ground, where as at least trousers hold it in. I’ve tried support tops to conceal my bag…yes they do conceal it but they also stop it from functioning and this has led me to some potentially messy situations.

Maybe I should take a leaf out of Homer Simpson’s book and just wear a poncho and be done with it…then again?

Any advice would be greatly appreciated!