Fear

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Yesterday I had an appointment with my renal team to check up on my kidney function. This is something that doesn’t generally bother me as my kidney failure hasn’t really changed in the last few years.

Sunday night though, I found myself feeling gradually more and more stressed about the thought of going to the hospital. It just feels like a place now where I experience pain and distress and I’m always waiting for the next piece of bad news. My husband knowing me pretty well could see I was getting more anxious and upset as I couldn’t even make up my mind whether to drive myself there or get the train, so he took the decision out of my hands and took me himself.

The thing is this fear is becoming a recurring theme and often visits me in my sleep at night. I regularly dream about being in pain in hospital and about being in ICU. Random conversations that I think I had in my drugged up state pop into my brain and take over my thoughts. I feel like I’m constantly reliving bad memories.

More upsetting for me are the dreams that take me to a future where my cancer has returned, usually in my liver and lung. I think that’s being over prepared with information as I know that bowel cancer will normally metastase into the liver or lungs. I feel angry that my biggest fear in life is getting cancer again. I constantly try to reason with myself that I’ve had every possible surgery and treatment to not only treat but prevent a return but I still have that nagging in my head that it’s not a guarantee. I don’t want to live my life  always feeling scared of what’s around the corner. I want to look forward to things, make plans and even do stupid stuff like go out and get drunk without worrying about what effect it may have on my colostomy or chemo. I want to be happy and not feel worried by life. I get irritated when I’m told to relax. I can’t relax…that’s when you let your guard down and bad things happen.

I guess it’s part of being a grown up though. Everyone has stresses and worries. I just feel like I’ve had more than my share now.

Wow, all that from one insignificant medical appointment. So how did it go? Well as usual it was fine. Nothing dramatic to report.

Stupid fear.

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Chemo & Cabin Fever

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July has been a busy month! There has been lots of birthdays including my husband’s and outings to go with them too. I’ve also managed to fit in a concert and a mini break to Cornwall so I haven’t really given chemo a chance to get to me.

I’ve felt pretty good really. Maybe just a little tired especially in Cornwall last week. Up until then I hadn’t really had chance to stretch my walking legs beyond up and down the stairs in our house, so meandering around the local harbour towns got me a little out of puff.

I’m suffering a bit this week though. I’ve developed a really strong metallic taste in my mouth which makes all my food taste crap, I’ve felt a bit sick, my stomach is not happy and I have really strange neuralgia types pains in my left leg in particular and burning in my hands and feet. I’m not sure if the pains are linked to chemo though as 5FU doesn’t tend to affect the nerve endings. It could be linked to my kidney function which has dropped to 16% since my surgery or my anaemia. It could also be because I’ve had the chance to stop and mentally I’ve allowed myself to feel a bit shit rather than push it away. A bit like when you work your butt off all year and the minute you step outside the office on annual leave, you get hit with illness.

Despite this week, the last few chemo weeks has led me to a decision…maybe it’s time I went back to work? How do I know that I’m ready? Well, I’m getting to the stage where cabin fever has well and truly set in and not having a ‘normal’ working life is sending me a little crazy. I don’t have a routine at the moment and it’s getting harder to find a reason to get out of bed each day and I feel that I need that sense of purpose, so maybe that’s a sign? The extra income would also be a big bonus as it’s getting harder to live on one wage and the tight arse benefits that I’m entitled to. Seriously, how do people live their lives on it?

I have a job interview this week doing a similar role to what I was doing before I fell ill. Whatever the outcome, it’s a positive step forward although a scary one. I do feel nervous about being back in a working environment especially with the new plumbing changes to my body. I’m confident I can do this though, I just need to give myself a firm shove in the right direction and remind myself of how well I’ve done so far.

I know it won’t be easy but hey, nothing about the last 9 months has been easy. Now where did I put those brave girl pants again?

Book Review – The Fabulous Woman’s Guide Through Cancer, Nicola Bourne

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I jumped at the chance to review this book by Nicola Bourne as I’m always interested in an alternative perspective to cancer, especially those of other women who are/have been on a similar journey. Myself and Nicola have had similar experiences in having bowel cancer that has resulted in a colostomy, so I was extra interested in this read!

The book that Nicola has written is less about her personal cancer battle and more of an uplifting book full of useful tips on how to make your cancer journey a less negative experience. It’s a great little reminder that you may be ill, but it doesn’t mean that you can’t have fun and live your life whilst you’re undergoing treatment. I loved the tips on how your can (safely) pamper yourself, on how to party without the stress and the mess and most importantly of all that you don’t have to face cancer alone. Your family and friends will want to help you. Nicola reminds you of this and how to divide those tasks so that you can make the most of that help without feeling guilty.

If you’re going through cancer at the moment, I recommend this as a read. It’ll give you the lift you need and leave you feeling more positive about the road ahead.

The Beginning Of The End

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Well, last week I had to have the dreaded colonoscopy. Up until this point, I had miraculously managed to avoid one…even the Gastroenterologist was impressed that after 8 months of having bowel cancer that I had skipped past this not so pleasant test.

For those of you who don’t know what this test is, for most people it would include inserting a camera up the rear end to look inside your colon. For me, as I no longer have a bottom of the traditional sense, it means going through my stoma. It actually wasn’t as painful as I thought it would be and the feeling of being both drunk and high from the sedation certainly helps! By far the worst part of a colonoscopy is the ‘prep’ the day before. You get very closely acquainted with your bathroom!

If you read my last blog, I mentioned that I was having a colonoscopy  as I had been experiencing bleeding from my stoma and they wanted to rule out a genetic condition called FAP. The good news is that everything was clear apart from a small patch of inflammation just inside my stoma. So no FAP and no more surgery!

This means that chemo can start again and this Friday marks the beginning of the end. Life is beginning to look up again and everything is back on track. Roll on January 2016. If all goes to plan, I will finish chemo exactly a year after finishing chemo radiation.

The Good, The Bad & The Ugly

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About a week ago, I had a check up with my colorectal surgeon, Mr Suggett. For the most part it was positive. My graft is healing slowly without any signs of infection and the scar on my stomach has healed nicely, even if it does make me look wonky now! I still have quite a bit of internal healing to do and I’ve still got to get used to having no stomach muscles on the right hand side of my body. Sitting up and standing up is quite a balancing act at the moment. It’s getting easier to sit down but I still get quite achy and sore if I sit or walk around for too long.

The bad, I’ve been having issues with bleeding from my stoma. This has obviously panicked me as it’s one of the main symptoms of bowel cancer. As I only had CT and MRI scans back in March, my surgeon has said it is unlikely to be another tumour at this stage. He is concerned though, that I have a genetic condition called FAP (Familial Adenotous Polyposis). This is a condition that mainly affects your bowel and causes it to over produce polyps, these polyps can then turn into cancer. The bowel that was removed during the surgery showed a worrying amount of these polyps so now I’ve got to have a colonoscopy to check the little bit of bowel I have left. So what happens if I have this condition? Well, that’s the bad news, it means another surgery to remove the rest of my large bowel and create a new stoma from my small bowel called an ileostomy.

So maybe more surgery. I don’t know if I can do it again. I know it’s not a definite but it’s all I can think about. Recovering from my APR has been so hard both mentally and physically. How can I think about doing all that again? I know I need to try to push it to the back of my brain until I know that’s what it is. But I can feel it lurking in the background. It’s sat next to the cancer mocking me. It tells me that I’ll never be rid of this.

I also received the news that after a long battle with lung cancer, my uncle sadly lost his fight at the weekend. Cancer is just the ugliest of illnesses. It causes pain physically and mentally, strips you of your dignity, destroys your body and takes too many people. Even though I hadn’t been able to see or speak to my uncle for a while. He was in constant contact with my dad asking about me and offering words of encouragement. It was an unfortunate connection we shared. I’m disappointed that I wasn’t able to go with my parents to visit him a few weeks ago as I was still too ill from the surgery. I wish I could have thanked him for his concern and encouragement face-to-face.

These last few weeks have been weird for me. I feel like I don’t know what I have anymore. Can I be a survivor even though I still have treatment left? As soon as I knew I had cancer, I visualised a day where there was be this massive euphoria and this big announcement that I had beaten cancer. I haven’t had this and to be honest I feel a bit cheated and lost. As with a lot of things in life, I had fought hard to feel really deflated at the end of it.

I can’t help but feel…is that it?

Recovering & Getting Back On The Bleach

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On Friday I met with my new oncologist Professor Middleton to discuss the options available to me for my post op chemo. Professor Middleton is one of the top oncologists at the QE and treated Stephen Sutton during his battle with bowel cancer. We had a long wait whilst the team discussed whether they would use a single or combination treatment to blast any possible remaining cancer cells. My butt wasn’t happy with this wait though as I shifted around uncomfortably trying to find a way to sit down without, well, sitting down.

Despite the wait, Professor Middleton was really friendly and animated and explained in detail how they decide whether they should treat you with chemo even though you are NED (No Evidence of Disease). After the tumour was removed, they were able to properly grade my cancer which was a Dukes B. Bowel cancer has a slightly different staging then the standard 1-4 but was probably the equivalent of Stage 2, heading to a Stage 3 because of the size of the tumour. The main reasons for decided to go back to chemo seemed to be because of my age and the original size of the tumour. Being only 31, they want to make sure as much as they can that the cancer won’t return.

I had been a bit nervous about this appointment as being in contact with a lot of other bowel cancer patients, I knew the standard treatment seemed to include a drug called Oxaliplatin via PICC line combined with another chemo drug and from what I knew, people had suffered on this drug. It is vile.

The delay in my appointment was my consultant deciding whether to give me Oxi or not but luckily my crap kidneys are useful for something and he decided that I didn’t have enough function to cope with the side effects (Yay!). I will be continuing with the 5FU that I had during chemoradiation but instead of being hooked up to a drip or a pump, I will be having it as a weekly injection for the next 6 months.  Hopefully this will mean that the side effects should be minimal this way and I’ll be able to continue to recover from my surgery. I’m being transferred over to Walsall Manor for treatment so that I don’t have the pain of travelling across the city each week. At least if I do feel rubbish, I know I won’t have far to go home.

On the note of my surgery, I’m now 6 weeks post op and I’m starting to get much stronger and out and about a bit. I’m still struggling to sit down but the swelling from the graft is going down so that’s positive. I’ve been really nervy about my graft as I was told by a junior doctor that I had an infection on my skin. An anxious phone call to my Colorectal Nurse and two checks later and  they assure me that all is fine. Word of advice, Senior Nursing staff are usually more clued up than the doctors and more reassuring. If I’m worried about something, I will always go to them first! I’m really noticing the lack of stomach muscles and I find it difficult to sit up or get up without having to launch myself off the sofa or bed! I still get tired very quickly as well and I have to try to manage that. If I leave it too long before I go to bed, I end up a crying wreck and my body starts to ache.

All in all, I’m seeing some positive changes physically which is helping me heal mentally too. I hope to be feeling back to myself soon.

Out On The Other Side

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Well, it’s been nearly a month since I posted so I thought I’d update you all on how the surgery went.

I went in as planned the night before to receive fluids via a drip and I’m not ashamed to admit that I bawled my eyes out the entire night, terrified by what I was to face the next morning. The more messages of love I received that night, the more I cried.

I went down at 8.30am the next morning a little more calm and collected. Once down in anaesthetics, I was given an epidural to cope with the post-op pain. OH MY GOD, why did nobody warn me that having an epidural hurts like a bitch – that needle! Why do they do that to you awake!?

The surgery was due to take 4/5 hours but my husband who was casually waiting around that day (ha!) tells me it was closer to 7 hours. Reason being that the op was a little bigger than anticipated and I had a team of plastic surgeons reconstructing my body as well as my colorectal surgeons removing the cancer and  part of my bowel.

So here comes the technical bit (skip if you’re not interested in the surgery part). I had what is called APR surgery (Abdomino-perineal resection). This is where surgeons removed part of my colon, all of my rectum, the cancer, lymph nodes and a safe clearance area. I was cut from chest down to pelvis, my stomach muscles on the right and a strip of my skin was removed and used to create a muscle and skin graft to fill the empty space where my butt once belonged – and yes, it is as painful as it sounds.

In my last post, I mentioned that I might have needed to spend a night in Intensive Care. Well, that 1 night stretched into 9 nights plus an extra 4 on ward meaning I spent 2 weeks in hospital in the end – a lot longer than I anticipated. Coming round from the surgery was brutal and I was more tubes and wires than person. The first 3 days are a blur of being in a weird awake/asleep state, numb and unable to move my legs from the epidural and regularly topped up with liquid morphine to dull the pain where the epidural didn’t reach.

I can honestly say that this has been the hardest part of treatment so far. Both physically and emotionally. I wasn’t prepared for how hard the recovery is. After a week solid in bed without being able to move myself at all, I had lost the ability to even walk. My legs didn’t feel my own and I had to be propped up either side whilst I tried to bambi my way around the bed. Just over 3 weeks on from surgery and I still wouldn’t class myself as fully mobile. Just showering and moving around leaves me exhausted and I’ve lost all the weight  that I had put on before surgery that made me feel healthy. I feel that I have a long way to go.

Emotionally, this has hit me harder than the colostomy surgery. I feel that my body has been butchered and that I’m more patchwork quilt than body. I know that scars will fade and that hopefully the graft will settle down over the next few months. My head feels very overwhelmed by all that has happened in just 6 months and screams out that this is all too much and that I can’t do anymore. I seem to have a least one cry a day – sometimes hysterically. Problem is you can’t quit the recovery process, as much as I say ‘ok, this is too much, tomorrow I want to be back to normal’, I can’t have that and have to deal with each day as it comes.

Eventually I know I’ll find a new normal again but due to the surgery I’ve had, nobody, including the surgeons are sure what this new normal will be. I guess I’ll know in time.

In and amongst the low that I’m experiencing, I thought I’d save the best part until last. I am now CANCER FREE! My histology came back with clear margins and clear lymph nodes which is really positive considering how big the tumour was. I’m currently being investigated for a genetic condition called Familial Adenotous Polyposis (FAP) but don’t know anymore just yet. I will also have to have the final 6 months of chemo to avoid a return but I’ll update you once I’ve met my new oncologist in a couple of weeks time.

Finally, I would like to thank the amazing nurses that looked after me during my time in hospital. Particularly those in Critical Care B. I am amazed and humbled by the work you guys put in to care for really sick patients. Also a big thank you to the student nurses on ward 728 who looked after me and kept my spirits up whilst I was on ward. You will make amazing nurses once qualified.