Know Your Chemo from your Radio

Cancer & Me

One of my lovely readers emailed asking if I could explain the difference between chemo and radiotherapy.  So here we are…

Chemotherapy

Chemotherapy is traditionally given via intravenous drip administered in hospital but you can now get chemotherapy tablets that can be taken at home.  Once in your blood stream, chemo can be taken the whole way round your body, treating cancerous cells, anywhere.

Cells divide themselves to reproduce, which is usually how we retain a healthy body but when we have cancerous cells dividing and reproducing, cancerous tumours form and spread.  Chemo stops your cells dividing and reproducing.  The only problem is, it stops your healthy cells as well, which is part of the reason people on chemo get so ill.  But the healthy cells will get better, the cancerous cells won’t – take that cancer!!

Personally I had both.  An intravenous session followed by two weeks of taking tablets everyday at home.

If you want more detailed information on chemotherapy, Macmillan have this wonderful leaflet…

Radiotherapy

Radiotherapy is literally a radiation ray or beam that targets the sight of your cancer.  It is given via a large x-ray type machine.  Radiotherapy is usually given daily over a period, in my case it was every day for six weeks.

Unlike chemo, it usually only affects the area it targets.  You will be given a scan to determine exactly where radiologists will be aiming the machine, then you are given tiny tattoos so that they get the exact place every time.  There will always be some healthy tissue damaged by radiotherapy but the precise nature of scans and tattoos is to ensures its minimal.

Radiotherapy can burn the skin quite badly, in my case it was very uncomfortable as it burnt my undercarriage but the physical effects are generally easier than with chemo.

If you want more information about radiotherapy or internal radiotherapy, have a look here at Macmillan’s website….

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Cancer, the Benefit of Hindsight and the Lowest of the Low

Any Human Heart, Cancer & Me

A lady wrote to me recently praising my positive attitude to having cancer.  This lady also went on to say that her son had cancer and that he was in a very negative place and she had tried encouraging him to read my blog to gain a different perspective but that he wasn’t interested and so fearful for the future and asked if I ever felt like that?

I wrote back saying YES!

But her question made me think how important it is to discuss the lowest lows that you go through when dealing with cancer.  I have a wonderful friend who stayed so positive throughout her whole treatment.  She had breast cancer and has been all clear for years but looking back she says she never allowed herself to think the worst.  She felt remaining positive was integral to her getting better and she never allowed negativity to creep in.

I did not feel like this.

I felt utterly lost in the darkest depths of an abyss.  Like one of those little sea-creatures that lives in a place so dark its blind and has no idea which way is up or down, that was me.

I honestly think that the reason that I am able to speak about cancer so positively now is because it all turned out fine and I’m cancer free.

People generally (myself definitely) have an incredible knack for looking back on experiences and extracting meaning and positivity from them.  That doesn’t mean the ‘meaning’ was obvious at the time.  Or even there necessarily.

There were points when all I wanted to do was hide away.  I didn’t want to see people, speak on the phone, anything.  Treatment and bed, that was it.  At some points that was all I was physically able to do but at other points, it was a very useful excuse.  There were times when I would tell family not to come round and they would anyway.  I must be honest, I usually felt a lot better for seeing them and having a chat about whatever my fears, or purposefully choosing not to talk about my fears.  As I started to recognise this pattern, I tried to keep plans, or even invite my dad or sister round, which did help.

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In hospital about a week after my operation.

The lead up to my twelve-hour operation was mind-crushingly hard.  I was petrified I would go to sleep and never wake up.  I was so scared, I couldn’t even discuss my fears with anyone, I couldn’t say them out loud.  In the end I had to push myself to tell one of my closest friends how scared I was because I wanted her to be able to pass on messages to my husband and children should my worst fear be realised.  I don’t think anyone will understand the physical internal pain caused by fear that I went through in the weeks between radiotherapy and my operation.

My lowest of the low actually came towards the end of my treatment which might sound strange – it certainly did to those around me.  I reached a point where I couldn’t fight anymore.  I had already had three months of chemotherapy, three months of radiotherapy, two operations, followed by weeks in hospital.  The thought alone of going back to have another three months of chemotherapy, knowing how sick it was going to make me, was too much for me to bear.  I was so physically and mentally tired, I didn’t have any more fight left in me.  People kept saying ‘but you’re so close to the end,’ but all I could think was ‘I can’t have another three months of chemo.’

I reached a point where I would rather give up completely than even thinking about keeping going.

I spoke to my oncology nurse about it and she was very understanding.  I think sometimes in cancer care we think our reactions unique, but clearly nurses see this all the time.  She advised antidepressants to give me the boost that I needed to get me through the last few months.  Previously I had been quite ‘anti’ antidepressants but at that point, I was on so many tablets counteracting side-effects from the cancer and treatment I figured what’s one more tablet a day?!  Plus I acknowledged, I needed extra help.  The antidepressants did help and got me through the end of my treatment.  I’m not suggesting antidepressants are the answer for everyone, but for me they were and still are.  I am sure there are more examples of feeling lost that I could give but I’m sure you get the idea.

I must admit I have felt quite emotional writing this post.  Remembering and feeling that long dormant fear in the pit of my stomach.  But if you feel this way, or have a loved one who does, know that it is inevitably part of the process.

Me, walking with my family the day after I found out I was Cancer Free!

Me, walking with my family the day after I found out I was Cancer Free!

At the end of the day, I have turned out fine!  In every way I think my life is even better than before.  I have done things I wanted to do my whole life but never had the guts to do before (ironic as it was my guts that had cancer and are now gone – a little bit of ‘cancer humour’ there); like going to University and writing this blog.

One way or another the moment that you /your loved one is in will pass, but in the mean time be kind to yourself / to your loved one.

 

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Let’s Begin at the Beginning – Why I Have a Colostomy Bag

Cancer & Me, Colosto-ME, Writing & Blogging

MY LATEST POST ON WWW.MYOSTOMY.CO.UK

When I was pregnant with my second child, I knew that I had bowel cancer.
You know your body, you know if something is wrong, and I knew. This feeling combined with textbook symptoms and a basic knowledge of bowel cancer due to a strong family history (my mother, grandmother and great-grandfather all died from bowel cancer) left me convinced it was the only thing it could be. Even so getting a diagnosis was not as easy as it should have been.

I had been getting rectal bleeding on and off, since around 2006.
Over the years I had visited various GPs but they always said the same, that I was too young to have bowel cancer and if the bleeding went, there was nothing to worry about. The bleeding stopped so I breathed a massive sigh of relief, swiped the sweat from my brow and went on in the blissful ignorance that not thinking about things like ‘your health’ brings.

Read more……….

nicola-bio3

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Who Should Decide Your Cancer Treatment?

Cancer & Me

The story of Ashya King has been as shocking as it has been upsetting and has stirred up all sorts of thoughts and feelings.  Cancer treatment is something that I have looked at from different points of view.  Not only as someone with an advanced cancer that needed and received treatment, also as the daughter of a woman who had and then refused cancer treatment and in all honesty, it comes across like a bit of a minefield.

Back in my blissfully ignorant-about-disease days, I believed that cancer was cancer and treatment was treatment.  Now I know that is far from the truth.  There are numerous variations of both and combination options, and it’s essentially down to your doctor to decide the best combination for you, based on your illness, their experience and resources available.

I originally had a surgeon who wanted me to have the ‘standard’ colorectal cancer treatment plan.  I then saw another surgeon who wanted further testing.  As a result a much more extensive treatment plan was given to me.  I say ‘given’ because it was.  There was no discussion just this is what we are going to do.

Since recovering I often question, what if I had stayed with that original doctor?  I only changed because my brother-in-law worked at a different hospital, not because I was expecting better treatment somewhere else.  If I had stayed with the original surgeon and his plan, not all the cancer would have been removed and I would have only had half the amount of chemotherapy I ended up having.

As time went on other variations on my treatment plan popped up.  Should or shouldn’t they remove my womb, was it genetically problematic, the order of treatment, different doctors held different opinions.  It started to seems to me that cancer treatment is on a spectrum ranging from a very well-educated and resourced opinion to a blanket standard.  I have no doubt that I was getting the best and right treatment for me.  But what if you aren’t?  What if you believe there is a better or different way?  At what point do you stop trusting what you are being told and go out on your own?

Just a few of my Cancer Drugs

Just a few of my Cancer Drugs

After my operation I did not regain bladder function and was still using a catheter weeks later.  My surgeon explained the bladder is a very sensitive organ that doesn’t like being pulled around (I love this, makes it sound like stroppy teenager), and given time it would return to normal.  In the meantime I was referred to a urologist so I could learn how to insert a catheter at home.  I returned for my follow-up a few weeks later, believing it was just to check if I was getting on with the catheter’s OK, when they said they wanted to run a series of heavily invasive tests with a view to operate and create a second stoma for my bladder.  WHAT!  Firstly, one stoma’s enough.  Secondly, this went against everything I had been told up to then.  I was still having chemotherapy, still recovering from the 12 hour surgery I had only a few weeks before.  The thought of another operation and another stoma served as such an incomprehensible blow.  I asked if it would be worth waiting to see if I regained function as I had been told I would.  She was very matter of fact, this was her recommendation.  No discussion, no options.  I was devastated.

So what did I do?  I ignored it.  Not something I would advise with health conditions, but I did speak with another doctor who said they didn’t agree (alleluia).  She thought that I should wait, give my body a chance to heal.  I knew straight away in my heart that it was the right decision.  I did regain full bladder function over the coming months so in this case it was right, but what I did find shocking was the way I was cut off by urology.  I wasn’t following their treatment plan so that was that.  I never saw anyone in urology again.

Since having cancer I have met with some fascinating people who work in the cancer field.  Some have been surprised that I wasn’t aware of the treatment variations available.  I had no idea there were different kinds of cancer drugs with new one’s being developed and trailed all the time.  In my case, it matters very little.  I am happy with the decisions, but what if you’re not?

Should we look at doctors as all-knowing beings and be forced to place our health in their hands no matter what?  Even after going through cancer, I still only understand the tiniest fraction of the science, so surely people who have trained specifically in the illness know best?  Or should we be involved as patients, guided by but not bound to doctors expertise?  These are not rhetorical questions, I am genuinely asking because your health is to important not to be discussed.

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The Many Emotions Of Cancer

Cancer & Me, Journey Back to Health

Cancer is obviously an emotional roller coaster.  Not only for the person with cancer but for the people around them as well.  When you have cancer, some of the emotions you experience are one’s that everyone expects you to have – feelings like anger, sorrow, fear and a general feeling of being over-whelmed or worn-out with it all.  But there are so many other emotions, that you just don’t hear about as much.  I was speaking with a friend who has also had cancer recently, about all the other unexpected emotions we had felt and it turned out they were the same, it suddenly seemed strange that we had never spoken about it before.  And so (as seems to be a running theme with me at the moment) I think talking about these things so people are more aware is what can help, so that’s what I am going to do….

Personally I felt a certain amount of relief when I was diagnosed.  This may sound strange but I had known that something was wrong for sometime so to know that I wasn’t going crazy or not eating enough fibre (as the GP kept saying) was a strange sort of relief.  At least now I knew what it was, we could start trying to deal with it.

The Many Emotions of Cancer Word Cloud

Guilt.  This is a big one.  And many other Cancer Superstars I know say the same.  There are so many facets to the guilt as well.  Guilt that you are inflicting this illness on others.  Guilt if certain family members or friends are coping very well.  Guilt that you are doing better than the person sitting next to you having chemo.  Guilt over getting the all clear when someone else didn’t.  Guilt over not being around for your kids as much as you should have been  Guilt over eating red-meat or drinking bottled water or whatever the latest, ‘this will give you cancer’ is, that could have possibly brought you to having the disease.  Guilt over not acknowledging just how bad it was when someone else was going through cancer before you because you just didn’t realise how much they would be going through.  Guilt, guilt, guilt, guilt, guilt!

Whenever you mention this to anyone who hasn’t had cancer, again they look at you like you are mad.  To be fair, it does sound mad.  None of those things are your fault and thinking about it logically, by definition you should only feel guilty if you have done something wrong.

But that’s the amazing things about emotions, they can be completely irrational and yet retain their strength and conviction over the person who is feeling them.

The other funny thing is when you don’t have a reaction that others expect you to have.  For me it was it was the ‘why me’ emotion.  I never felt this.  People would say ‘you must be thinking why me’ and when I said I didn’t, people would look at me like I was crazy… or lying!  It was really strange. I did feel ‘why now’ and thought the timing was unfair given that I had a 3 month old and 2 year old when I was diagnosed but never why me.  My friend felt like she had to apologise for not being emotional enough and crying all the time.  I think people often think I’m strange that I am able to talk about it so matter-of-factly (is that a word) and not break down.  I don’t know why this is.  Just because I’m feeling strong at that moment, doesn’t mean I’m not going to break down later that day / weekend / whatever.  No one could sustain that level of heightened emotion with a constant outpouring of feelings when you are going through cancer.  Doesn’t mean you’re not feeling it though.

My 2 year old only has room for one emotion at a time so can go from a screaming fit to laughing in a nano-second but adults and especially one’s who have cancer don’t act like that.  The number of conflicting emotions that you can be feeling at anyone time when you have cancer is cataclysmic and enough to give you a serious headache.  Just like in the word cloud above that I made, to show how many different emotions can be in your heart at any one time.  But regardless there are no right or wrong emotions. Everyone is going to handle it differently depending on there constitution and circumstances.

I think if you are a Cancer Superstar, you just need to give yourself a break.  Whatever you are feeling is fine, no doubt it is something that all Cancer Superstars are feeling and it probably will pass onto another emotion soon enough.  If you are the loved one of a Cancer Superstar, be patient, don’t expect them to feel or think anything and work on the assumption there is even more going on in their head than they are probably talking about.  This may not be because they are trying to keep things from you, most likely because there are so many emotions happening at one time, it is hard to pull them all apart and explain.

If you are feeling seriously down and struggling to cope, speak with your doctor.  There is a lot they can do to help, don’t feel like you shouldn’t ask.

What emotion are you experiencing that you didn’t expect?  Doesn’t have to be cancer related…. let me know in the comment box x