Cycle 4 – Getting Over The Hump!

Hello! It seems like forever since I was last here but I’ve reached the end of another cycle 🙌 I’m awake early with a headache and sore throat so I thought I’d sit in bed with a cuppa and update you all!  It’s true what they say each cycle gets tougher and this has certainly been the case with cycle 4, the toughest yet mentally and physically but I’m over the half was point or the hump as I call it!

I had a 2 week rest period at the end of cycle 3 due to my low blood platelet count and I think that made going into cycle 4 a lot harder as my body was starting to feel a bit ‘normal’ again.  Similar to previous cycles my arm was a bit paralysed for a few days but heat packs and hot water bottles certainly helped.  My veins are starting to hide, took 3 attempts to get the cannula in my poor hand was very bruised! The fatigue has really hit me this time and for the first time since I’ve started chemo I’ve been having the occasional nap.  Anyone that knows me knows I don’t do sitting around and I keep going but I’ve had to listen to my body as I’ve felt physically very weak, it’s hard to describe but it’s a general yucky feeling all of the time.

The side effect that has the biggest negative impact at the moment is the tummy pain and feeling bloated, my stomach is tender to touch, when I eat it hurts, when I go to the loo it hurts, it puts me off eating but I need to eat for energy but the chemo drugs make the diarrhoea worse and then I end up de-hydrated so it’s a bit of a vicious  circle.  My stomach sounds like a gurgling drain a lot of the time it’s quite embarrassing in a quiet room 😂 I spoke to my Oncologist about this and he said that the chemo drugs are compressing my small intestine so there is more pressure and this will cause the pains and gurgling.  At least I know it’s the drugs and not an issue with my Frankenstein like insides 😂

So that’s the depressing stuff 😂 I have done some positive things this cycle too! I went with a friend to a yoga and Pilates therapy centre and I did a taster session of each and really enjoyed it, it’s something I want to incorporate more into my life now and beyond chemo my poor aching body can certainly use it as well as my mind  🙏.  I had a lovely night out with a friend we went to Barnacles an amazing fish restaurant and stayed at a hotel for some r&r and we may have gate crashed a wedding reception at the hotel 🙈 but turns out my friend knew some of the guests 😂 so it was all good! Recently I had a day of self care I was sick of my hair looking drab as they generally advise against colouring during chemo due to sensitivity but I went for some highlights that avoid the scalp and had a good 3 inches chopped off the length, followed by a lash lift, brow shape and tint and red toes.  It so important to take time for yourself, it did wonders for my mind and gave me a boost when I’m having a tough time accepting all the bodily changes I’ve gone through.  I think we are pretty bad as a nation at putting ourselves first and it’s ok every now and then to be totally selfish and do what makes you feel good, re-charge the batteries and look after number 1.

There are 2 things I plucked up the courage to do in the last 3 weeks.  Firstly I took the decision to tell the kids about my cancer.  They know I’ve been poorly and have probably heard conversations and I wanted to explain it to them rather than hear it from someone else in the playground etc.  I bought them each the star of hope pin page this is the symbol of the bowel cancer UK charity so they could pin them to their school bags.  I explained what the badge represented and that it was important to me as mummy has Bowel cancer but that I was getting better thanks to all the medicines.  They took it really well, my eldest who is nearly 9 did ask if I was dying and I immediately expelled that thought and then he said but you haven’t lost your hair! In the eyes of a near 9 year old cancer means hair loss and dying but what he can see now is that it’s treatable and mummy can still do things. I know many people might disagree with my decision to tell them as we always want to protect our children but I am always honest with my children about things that happen in life and I want them to come to me with questions and they are excited about helping me fundraise next year.

The second thing I plucked up the courage to do was to seek some counselling, this is something I probably should have done years ago due to past life events but I’ll admit I’d rather put things to go back of my mind and plough on with life, this is another thing I think we are bad at as a nation!  We always say we are ‘ok’ but it’s ok not to be ok and to talk about how we feel is so important and it encourages others to do the same.   I think getting diagnosed with cancer and all that uncertainty it brings about life I finally made the decision that I need to work through and process all the things that have had a profound effect on me.  I got in touch with a brilliant charity called Coping with Cancer and I visited their Leicester branch.  They have centres in many locations and offer support to patients and family members.  Counselling, holistic therapies, yoga, workshops, drop in meets the list goes on.  To anyone that is going through the cancer journey or may have finished or friends and family that need support I really recommend looking at the services they offer.  I have been for an initial chat and I’m not on the waiting list.

Finally I want to dedicate this blog to the amazing Rachael Bland (bigclittleme.co.uk) many of you may have heard that the five live broadcaster died this week.  Unfortunately she had an aggressive form of breast cancer diagnosed 2 years ago.  This lady has done amazing things to demystify the stigma of cancer and get people talking about it through the brilliant podcasts – you, me and the big C. bbc.co.uk/youmebigc. I encourage you all to have a listen you don’t have to have had cancer or know anyone that’s had it to enjoy the pods.  It’s funny, heartfelt and informative and she has left an amazing legacy! When I heard she had died it did have a profound affect on me, I cried on and off all that day, I know it sounds silly as I didn’t know her but I felt like did know her and that is testament to her and the way she was able to make people feel.  Obviously it’s a subject close to me and I think when you have stared at your own mortality it gives a strength I can’t describe and I hope non of you have to face it but it’s part of my journey and im learning so much.  I’ve moaned quite a lot this cycle feeling ill but the fact is I’m still here and have another shot, Rachael no longer has that option so rather than hope they stop at 6 cycles instead of 8 I’ll take whatever they give me and will be thinking of you Racheal, brave, beautiful lady.

So that’s the latest, cycle 5 on Monday on a reduced dose to try and help alleviate the side effects.  See you all soon have a fab weekend!

 

The Fear!

I was going to write about ‘the fear’ at a later date but it seems appropriate to write about it now after this week.

Firstly cycle 4 was delayed by a week due to my blood platelets being too low, this means my blood won’t clot so I’m at an increased risk of bleeding heavily so they wouldn’t want to run the risk of doing the chemo.  This is frustrating as it delays the end date but I have to listen to body and it’s a sign it’s starting to get tired of the chemo.  It is possible I may only have 6 cycles instead of 8 but I will see what the blood tests reveal.  It’s been confirmed today that chemo is going ahead on Monday so it’s back on track.

This week I saw a genetic counsellor to discuss genetic testing.  This meeting contained a lot of overwhelmingly complicated genetic information so I will try to summarise.  They mapped my family tree based on the information I had supplied, this was sketchy due to limited information I had about family history particularly as my dad is adopted.  There is a history of cancer in the family but not Bowel cancer, one of the first things she asked me was whether all my family were as freckly as me.  I thought this an odd question but I said my kids and my brother are freckly and has probably come from my mother’s side.  She said that there is a genetic link between overly freckly skin and Bowel polyps 😳 so those cute freckles might not be that cute after all! Don’t panic if you have freckles it doesn’t mean you are at risk.

As I have mentioned previously during all my investigations they found a large number of polyps in my colon (Bowel).  The geneticist said that the proteins in my tumour were tested for lynch syndrome (a genetic condition that increase the likelihood of bowel cancer) this accounts for around 60% of diagnosed cases. In my case my proteins didn’t show evidence of this, so it is likely that I might have a rarer genetic mutation inherited from mother/father, this would mean my brother has a 50% chance of having inherited the same gene and I might have passed this gene to my children! 😢.  My DNA is going to be tested for several polyp related conditions.  One of these conditions is called Familial adenomatous polyposis (FAP) is a rare condition that can run in families. Affecting 1 in 8500 people (30 % of bowel cancer cases due to this). It can also affect people who do not have a family history of it. FAP causes hundreds or thousands of small growths called polyps to grow in the large bowel. If these polyps are not treated, some of them are likely to develop into cancer which is what happened in my case. If you want to read more about it follow the link

https://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/genetic-testing-and-counselling/fap.html

I am being tested for the FAP gene, if I found to have it my brother and children will also need genetic testing and regular screening.  I am also being screened for rarer conditions that affect around 10% of people.  The geneticist was very careful in asking me if I definitely wanted the screening as it might reveal other cancers I am at an increased risk of developing but as of yet there is no routine screening for as technology isn’t advanced enough.  I already know I’m at an increased risk of certain  cancers (liver, rectum, lungs, womb) but most of these I will be screened for over the next 5 years.  It is scary to potentially find out I could develop rarer cancers and all I can do is look out for symptoms and this is the first time I’ve really felt the fear.

Anyone that has been through cancer will know about ‘the fear’ that when this is all over another cancer might be looming round the corner.  I think the most traumatic experience is the thought of a reoccurrence, the emotional pain of this journey is far worse than the physical pain.  It’s something that survivors live with, it’s something you put on a high shelf somewhere but it’s never really out of sight or out of mind!

It’s all ifs and buts at the moment, I won’t get the results for 3-6 months and whatever the results all I can do is live each day and be grateful for each and every day I get to live my best life.  It’s an awful thought that I might have passed something on to my kids and I think this thought has contributed to my irritability this week.  However, my decision to have the testing was an easy one because if it means my kids can be screened from an early age and hopefully prevent them from going through what I’ve had to endure then it’s 100% worth it even if it means me living with knowledge I can’t do anything about.   So that’s this weeks news, cycle 4 on Monday so I’ll update you all soon.

Cycle 3!

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So I’m coming to the end of cycle 3, and it’s been a rollercoaster of side effects and emotions.  I like the above quote I saw this when I was feeling rather low and didn’t want to take any more damn tablets that make me feel bad but it reminded me why I’m putting myself through this, my kids, my family and friends and all the things I want to do in this precious life.

My veins are slowly disappearing it took 3 attempts and 2 nurses to find a vein for my IV’S but they got one eventually.  This time round my arm was very sore and painful during the IV’S and for a few days my left arm was pretty paralysed and useless.  This is quite hard to deal with when you have 3 kids to run around after 😂.  You know you have good friends when they can take the pi#s out of you, a good friend of mine said I was like Jeremy Beadle with your arm like that 😂 you know who you are and I will get my own back when I have 2 arms that work properly 😁. The sore calves returned again, the oxoplatin does effect the muscles so not only was my arm a mess I was walking like John Wayne 😂 it’s all so glamorous!

The buscopan seems to be helping with the tummy pain and bloating but I do have pains most day that I’ve got used to and I’m being careful with the foods I eat.  The biggest battle this cycle has been the one inside my head, those closest to me know that I have had a lot to deal with in my personal life over the last couple of years well   I’ve actually been through quite a lot of traumatic events for my 36 years but you learn to take it on the chin but getting this diagnosis has been hard.  At times I feel I’ve had my fair share and it’s someone else’s turn.  I can’t change what’s happened so all I can do is push on, in a way I’m grateful as it’s reminded me what’s important in life and better things will come.   I have been overwhelmed with the support I am getting from friends and family and strangers, in the last couple of weeks I’ve had cards and flowers that have really cheered me up and I’m so grateful as it’s really picked me up at a low time.

Its not all been bad on this cycle I’ve created some great memories.  One of my closest friends that lives in Germany visited and to see her and her kids was brilliant and was just what I needed at the start of cycle 3! I took my kids to a theme park and we stayed overnight in a wizard themed room which was very magical and special.  I’m not going to lie taking 3 kids round a theme park on my own in 30 degree heat and on chemo did take it out of me but I was determined to do something with the kids in the holidays.  Unfortunately on our return my eldest was sick everywhere at 3am and was on and off the loo all night with the runs.  💩 Clearly I shouldn’t be dealing with sick etc but I had no choice the poor little thing.  By the Saturday I wasn’t feeling great I think I was exhausted so the kids went to their dads and I got some much needed rest.   Other highlights include water park fun with the kids, going to my Aunty’s wedding and a lovely weekend in Southampton visiting friends.  It is possible to do things on chemo and having things to look forward to really helps me to get through the bad days.

This week I had the pleasure of attending a workshop ran by the charity Look Good Feel Better.  They provide skin and beauty advice for men and women that have had cancer to help with confidence building.  We all got the most amazing goody bag of products (I’ll load a pic in the gallery) and we all looked amazing by the end of the session.  The nicest thing was meeting other people going through a similar situation. I would really recommend this to anyone in the same situation, your oncology team should tell you about it, it runs at most hospitals or cancer centres.  For more info check out their Instagram page @lgfb also on Facebook.   Following that I had a lovely day having lunch and shopping, it was lovely to do something that didn’t involve hospital appointments 😂

My mind has turned to fundraising as another way to focus on something positive.  Bowel Cancer UK run walk together month throughout September so I’ll be joining other people in London to walk around the amazing city.  In October I’m taking part in the Shine 10k night walk for Cancer Research and next year will be a big challenge, more about that soon.  Bowel Cancer UK have also just re branded and I’d like to thank all my friends that have been ordering wrist bands to show their support.  It happens to be my favourite colour too (pic in gallery of me modelling my goods lol)

So there we go cycle 3 in the bag, seeing the oncologist tomorrow and if all my blood results are good then cycle 4 starts on Monday, the half way point!! 👊 another step closer to ringing that 🛎

 

 

 

Bit of Education!

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I know this isn’t a very cheerful topic for a Saturday afternoon but I’m not feeling well and I’m getting bored of watching Netflix 😂 so thought I’d do a little education blog for you all.  I guess many of you myself included don’t know very much about bowel cancer.  It certainly isn’t where I expected to end up from having some anaemia.
Bowel cancer is the fourth most common cancer in the UK, after breast, prostate and lung cancers.  Over 41,200 people are diagnosed with bowel cancer every year in the UK.  More than nine out of ten new cases (94%) are diagnosed in people over the age of 50, and nearly six out of ten cases (59%) are diagnosed in people aged 70 or over. But bowel cancer can affect any age. More than 2,500 new cases are diagnosed each year in people under the age of 50.

This is what resonates with me, that young people are affected by this cancer too and I have learnt that our route to treatment and diagnosis is often more tricky.  I was very lucky that I had a great GP that meant I got appropriate tests in a timely manner despite the lack of obvious symptoms.  However there are many people that have spent a long time going back and forth to the doctors with symptoms like the ones mentioned above but were not taken seriously because of their age, often linking it to general ‘IBS’ symptoms.  Unfortunately for some of these people by the time they reach diagnosis the cancer has become more advanced.  Bowel Cancer UK and Beating Bowel Cancer are continually campaigning to help raise awareness of symptoms and better education for health professionals.

All I can really say is you know your body and if you feel something isn’t right you must be persistent and don’t allow yourself to be fobbed off because you are ‘too young’ and this isn’t exclusive to bowel cancer by any stretch of the imagination. Bowel cancer is treatable and curable, especially if it’s diagnosed early, almost 16,000 people die from bowel cancer in the UK every year. It is the second most common cause of cancer death in the UK, behind lung cancer. But the number of people dying of bowel cancer has been falling since the 1970s. This may be due to earlier diagnosis and better treatment and I hope this trend continues.

I can’t do this blog without shouting out a mention about the benefits of donating blood, as you all know I’ve gone on about it enough 😂  but honestly 1 pint of blood can save 3 lives and runs a health check for yourself which worked out very well for me!  700 new donors are needed everyday to replace those who can no longer donate unfortunately I can’t donate anymore so one of you lovely people have to take my place 😊

http://www.blood.co.uk

http://www.bowelcanceruk.org.uk

Cycle 2!

 

6077E31E-C3DB-428A-A2BF-D775BCCEC6CF  This quote made me laugh, it helps when I’m feeling low!

The second cycle of chemotherapy has been tougher than the first, the cycles have a cumulative effect so I might feel worse as the treatment progresses.  I’ve had the same side effects the numb/tingling fingers, sore veins, sensitivity to cold etc though seemed to last a little longer on this cycle. I’ve had a few new side effects this time, the first few days after the IV’S my calves were really tight and sore making it hard to walk.  I spoke to the chemo nurses and I had to see my oncologist as there is an increased risk of blood clots when on chemo.  Luckily it was just sore muscles which is quite common and it passed after a few days.   On the first cycle I didn’t really feel nauseous but I’ve felt it more this time round, it’s not been awful but has had an effect on my appetite.   The other most significant side effect has been the tummy pain, I’ve really suffered with griping stomach pains (IBS type symptoms)  particularly after eating and feeling very bloated, another side effect that is to be expected.  Some days this has made me feel quite miserable as it’s very uncomfortable.  I’ve been prescribed a couple of meds to try, and buscopan (commonly used for IBS) seems to be helping.

The resentment has kicked in a bit on this cycle, I’m young (ish) I lead a healthy lifestyle I don’t smoke, I’m not overweight, I exercise I don’t drink excessively (despite popular opinion 😂) why me? In all likelihood there is a good chance that it’s genetic and I couldn’t have done anything to prevent it.  Resentment and anger is very toxic and the thoughts pass quickly but I’d be lying if I didn’t admit I have days when I just want to stop and go back to normality.  I want to be able to dye my hair, go on holiday, have more than a sniff of wine, but these are temporary sacrifices to give me a better chance of being able to carry on doing the things I love in the future.

I won’t let cancer define me and that’s why I try to do as much as I can that I did before the diagnosis, it has undoubtedly shaped me as a person and I’m learning a lot about myself and it’s life changing but I’m grateful for what lessons it’s teaching me and puts a lot of things in perspective.

I am currently on my rest week before cycle 3 starts on 23rd July, it feels so nice to feel normal, my tummy is fine as I’m not taking the drugs, I don’t feel sick and all the other side effects have subsided.  It’s also a hard week as my kids have gone on the holiday I had booked with them but I’ve been unable to go due to hospital appointments.  The main thing is they have gone and are having a great time.  I’ve been busy at work and seeing friends, I’ve treated myself to a glass of wine and the biggest achievement has been getting back to the gym after more than 4 months of  no exercise.  I love group exercise classes and it felt fantastic to get back to it, I did body pump with light weights and then body balance to help stretch my muscles, increase flexibility and relax with the meditation.   I felt great afterwards, exercise really is great for mind, body and soul! I can barely walk today 😂 but it was so worth it.  So that’s me now up to date with the story so far so my future blogs should be in real time as things happen.   I’ll let you all know how cycle 3 goes!

 

 

 

 

 

 

 

 

 

 

 

 

Cycle 1: life on chemo!

The day following the chemo I had booked the day off work and I am glad that I did as I was feeling very tired.  My hand was very sore due to having sore veins,  my fingers were still numb and tingling, not constantly but I found touching metal door handles set it off, hanging out washing and going into the fridge or freezer.  For the first few days following the IV’S I had to grab stuff out of the fridge with my hand covered 😂. I remember nipping to the shops to get a few bits and I had to use a scarf to grab things from the cold fridges and freezers, people must have thought i was strange 😂 luckily I bumped into a friend and her daughter went round the shop with me getting what I needed.

The hospital encourages you to drink 2 litres of water a day to help flush the toxins, during the first few days this was hard because of the effect on the larynx making its not very pleasant to drink and everything had to be room temperature.  The first morning after the chemo I had very red flushed cheeks that felt warm, I wasn’t sure about this side effect so onto the forum I hopped on the beating bowel cancer page and I soon learnt it was the steroids causing it.  I only had to take them for 3 days to help boost energy.   I checked my temperature (thermometer goes everywhere with me) and it was fine.

Life carried on pretty much as normal for the rest of the cycle, I continued to work I haven’t asked to be signed off from work as I want to keep busy and working helps to distract from the side effects.  I hope this will continue as long as I am feeling well enough but I will listen to my body and I accept I might have to make adaptations.  I was still managing all the school runs and kids activities, don’t get me wrong I was heading to bed when they did but it was manageable.  The worst day I recall was 1 week into taking the chemo tablets, I woke up on the Saturday with every part of my body aching even my eye sockets hurt, I felt tired and had no energy I honestly felt I had the body of a 90 year old! Some how I managed to get my daughter to ballet and sorted the kids but in the afternoon whilst a friend was round I had a nap.  I think 1 bad day in the 2 week cycle was pretty good going.

Having chemo does place a lot of restrictions on you, not travelling, avoiding places at busy times, don’t go swimming, don’t let pets lick you, avoid people that are ill the list goes on.  However, I have found that I still felt well enough to go out with friends, go to work and I even managed my first bit of exercise.  I love working out and since all this cancer business kicked off I haven’t trained since March, I was used to going to the gym 3 or 4 times a week.  This was starting to make me feel miserable, as we all know exercise is great for body and mind.  During my rest week (no tablets or treatment) I went for a run I didn’t go far but it was a start but I found it set off the numb fingers and my bowels didn’t like it 🙈. The next day I went for a 20km bike ride with my brother.  Last year I did my first triathlon and it’s my goal to get back to competing next year, I love cycling and I found that it didn’t set off any side effects so I think cycling will be my exercise friend whilst on chemo.   I have a ‘if I can I will’ attitude and there was no way that cancer was going to dictate my life, I had to respect it but it wasn’t going to rule me!

 

 

First chemo session! (cycle 1)

 Having not had the best nights sleep due to the nerves of what was going to happen  I made my way to the chemo suite on Monday 11th June 2018.  I waited for around half an hour and I was called in, the suite was really busy so I was placed in a side room with my friend.   A lovely nurse came in to give me some anti sickness drugs and steroids prior to starting the iv drugs.  She knew it was my first chemo so she took the time to explain that I would be on one drip for approximately 2 hours, if I felt hot, or felt any pain or stinging once it started I was to let her know as some people turn out to be allergic to the drugs. 😬.  I was given a large bag of tablets (see pic) these were the chemo drugs I was to take at home over 2 weeks, plus steroids and any sickness pills.

I was kept waiting a while whilst they went and prepared my ivs, I was feeling anxious about how I was going to react to the drugs.  Once the cannula was in my wrist she ran a saline solution through to make sure it was cited correctly in my veins.  Then they brought out the bag of nasty toxic drugs, at this point I had a wobble and could feel a lump in my throat.  I knew I needed to have these drugs to help me get better but I didn’t want the toxins in my body that kill good cells as well as bad! I resented the whole situation but I put the smile on and told the nurse to get it going before I changed my mind.

Once it started I relaxed, the staff were so lovely and believe it or not it’s a nice environment despite what everyone was there for.  The first thing I noticed was that my left arm where the drugs were being pumped into my veins began to feel very sore and my arm looked like Popeye 😂 I also felt quite hot and flushed.  After about half an hour most of my body was aching.  Having a lot of fluid pumped into you makes you want to wee a lot so I toddled off to the loo with my drip 💧 😂 .  When I washed my hands it felt like ice was running over them, this was clearly the sensitivity to cold they had warned me about, I couldn’t believe how quickly the side effects could start.

I went prepared with magazines and my I pad to watch films but the 2 hours flew by, I spent most of it chatting to a lovely lady having her 3rd chemo for breast cancer.  She was on a completely different type of chemo but she was so positive and gave some great advice.  When someone finishes their final treatment you are offered the chance to ring the bell 🛎 on the suite 3 times to mark the end of your chemo.  Whilst  I was there someone rang the bell and it brought a tear to my eye, someone had finished their journey just as I was starting mine.  I can’t wait to ring that bell!

I had survived my first session and it had gone well and I was feeling ok, my fingers were feeling numb and were tingling and when I sipped water it felt like razor blades in my throat.  The oxoplatin can affect the Larynx, it’s all side effects I had been warned about so I wasn’t panicking.

I went home and immediately produced a spreadsheet (see photo) detailing what tablets I had to take on what days and all my up coming appointments, and stuck it on the fridge, there was so much to take in! and I do love a spreadsheet 😂 I felt pretty drained so for the rest of the day I rested and wondered what the next 2 weeks would bring.

 

 

 

 

 

 

 

 

 

 

Chemotherapy Nurse Talk!

The date was set, I was to begin chemo on 11th June 2018 😳 prior to starting the chemo I was invited to attend a chemotherapy talk with other patients also about to have chemotherapy! I absolutely hated the idea of this group talk it felt like I was being forced into a club I didn’t want to be a member of,  but I had to have an open mind and just take it as it came.

The talk was arranged for Saturday 9th June 2018 on the chemo suite at Leicester Royal Infirmary, we all arrived dutifully sitting there glancing at one another.  Before the talk each patient had bloods taken to make sure we were ok to commence chemo the following week.   We were shown the suite which was pretty pleasant I have to say, the set up is a bit like when going to donate blood with lots of rows of chairs and drips.  There was a kitchen where you could help yourself to food and drinks, a tv and pleasant waiting areas for family & friends.  All in all it was as nice as it could be for a clinical environment.

We were led into a lavender coloured room with a lavender field painted on the wall, I assume it was meant to induce calmness but it was giving me a headache 😂 The nurse that did the talk was perfect for the job, a very experienced nurse but with a great sense of humour, in her Afro Caribbean accent saying ‘don’t ask me no doctor doctor questions only nursy nursy questions’.  She went through a series of slides about how the day would run each time you came (in general terms as we would all be having different type of chemo) She handed out our chemotherapy record books, booklets on how to prevent infections, how to look after your mouth, how to keep well during treatment and the all important 24 hour Emergancy number that we had to ring should we experience symptoms such as blood clots, high or low temperatures, unexplained bruising or bleeding, sore mouth, extreme sickness or diarrhoea.   It was a lot of information to digest but it was delivered really well in good humour so we all had a bit of a laugh despite the shit situation we were all in, so my original scepticism had been squashed.

Following the group talk we all had a 10 minute slot to discuss our individual treatment, she basically went over what my oncologist had explained to me.  I would have my Iv’s through a cannula over 2 hours and then take the oral drugs home.  She recalled the side effects as I mentioned in the previous blog including limiting alcohol to ‘special occasions’ well that is very subjective 😂 every day ending in y is special 😉.  Some patients were being offered the cold cap treatment prior to their chemo, this is like a frozen hair cap that helps to retain hair follicles that chemo can kill off and cause hair to fall out.  A lot of people had come up to me since learning I had cancer to tell me about this,  but in truth not everyone loses their hair, there are so many different types of chemo and on my combo I wasn’t expected to so it wasn’t offered.  I know it’s very shallow but I was hoping that I wouldn’t lose my hair as it’s one of the most obvious signs of cancer & I knew I would struggle with that. However, if it did happen it’s all temporary and having seen some of the amazing wigs I wouldn’t hesitate.

The talk was done, and as it was my last weekend of relative normality for a while my friend and I had booked a spa hotel in Bicester for the night.  It was a lovely sunny weekend and I spent the rest of the weekend, enjoying the sun, eating nice food  having a few cheeky G&Ts 👍 a relax in the spa, breakfast in bed and some retail therapy at the designer outlet.  Pure escapism with the reality of Monday looming.

Oncology!

887353D0-6BFE-4E06-8D1D-F8723BAD1579On the 29th May 2018 I entered the oncology building at Leicester Royal Infirmary, a  building I really wished I didn’t have to enter but i couldn’t change it.   I’ll be honest I didn’t like it initially, there were people walking about hooked to machines & drips, a shop selling head scarves and a Macmillan information centre.  It all screamed you’ve got cancer and I wanted to run a mile!  I took a deep breath and entered outpatients department to wait to see my oncologist (An oncologist is a doctor that specialises in the treatment of cancer).

My name was called and I entered a room with my Godfather and was met by a lovely man that was to be my oncologist and a nurse that was to sit during the conversation.  A tip I had learned from following forums was to record the conversation so I could listen back to what was said as there would be so much information to take in, this was really helpful for me.

After the pleasantries he confirmed a few details about the surgery and went onto explain my diagnosis.  As I stated in the previous blog he confirmed that my staging  (T3, M0, N0) equated to stage 2 colorectal (bowel cancer).  He explained that he was recommending that I had 6 months (8 cycles) of chemotherapy, people who fit 2 or more risk factors are generally recommended for treatment. In my case my risk factors were my age (due to age could face another cancer in life time compared to someone over 60 for arguments sake) and the mismatch repair as explained in the previous blog that indicated my cells would be responsive to chemo!

I was taken a back initially thinking 6 months is a lot of chemo considering all the nasty stuff has gone and it’s not invaded any other part of my body.  He explained that there is always a chance of a rogue cell floating around and this is a catch-all scenario.  Statistically without chemo my chances of survival behind 5 years was quite good (not an easy thing to say) around 70% but with chemo I’d be increasing those odds to 80-90%.  It seems like a no brainer but I had to consider the impact on my quality of life for me and my family.

The drugs:

My combination of chemotherapy was Oxaliplatin (Intravenous) and capecitabine (oral tablets).  I would attend hospital once every 3 weeks to receive the IV drugs through a cannula in my hand direct into my veins for approximately 2 hours.  Then I would take the oral tablets morning and night for 2 weeks, have 1 week off treatment then start the cycle again.  Prior to each cycle I would have to get my bloods checked to make sure that I’m ok to have the chemo. The oncologist then went on to discuss the side effects 😳

Possible side effects: 

Risk of infection: The chemo can reduce the number of white cells in the blood making it more likely to get an infection.  I would have to keep a close eye on my temperature and contact the hospital immediately if I felt unwell even without a temperature, or have symptoms of an infection.

Bruising, bleeding, anaemia, tiredness, feeling sick, diarrhoea, sore mouth, skin changes, soreness & redness of palms of hands or soles of feet, watery eyes or sore & dry, headaches, muscle and joint pain, tummy pain, changes in the way the liver works.

Hair loss – with the combo of chemo I was planned to have it wasn’t likely that I would lose my hair but may thin.

Peripheral Neuropathy – numb or tingling hands or feet, these symptoms are caused by the effect of the oxaliplatin on the nerves.

Less common side effects – oxaliplatin can affect the area around the larynx and make it seem difficult to breathe or swallow, hearing changes, effects on nervous system (dizzy, unsteady), tightness in chest.

Other effects – risk of blood clots, can affect fertility and stop ovaries working all together (so blessed that I already have 3 beautiful children).

I sat and listened to the list of potential side effects and could feel my eyes welling with tears 😭 I was faced with a really unfair decision that either way had the potential for negative consequences.  I would have to cancel holidays, not make plans, I know these might sound like trivial things to have to do but I felt my life was out of my control.  Of course it was entirely my choice if I had the treatment or not and I could stop it at any point.

Feeling totally overwhelmed I asked if I could go and have a think for a few minutes  before committing to signing the paperwork.  I walked out of the building into the sunshine and burst into tears, my Godfather gave me the biggest hug I just wanted it all to go away and for my life to go back to how it was before all the turmoil.  I sat stunned in the hospital cafe fighting back the tears and people looking at me, I re read over the side effects and I began to think that I’ve been offered a treatment that can only do good by trying to give me the best possible outcome for the future for me and more importantly my children.  Yes it wouldn’t be easy, but it’s only 6 months of my life and then at least I can say I tried everything and if the cancer came back it’s just bad luck.  I felt that if I didn’t try the chemo and then I got poorly again at a later date I would kick myself for not having had that treatment.  Decision was made I went back and signed the paperwork ready to tackle the next hurdle.

The diagnosis!

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Almost 4 weeks after my operation on 18th May 2018 I received the phone call confirming my diagnosis.   The nurse explained that with cancer there is a grading system, my biopsy results confirmed my staging as T3 N0 M0, if you are like me you had no clue what that really meant.  I made the mistake like so many do that I assumed I had stage 3 bowel cancer.  Actually this wasn’t the case and with the staging I have it equates to stage 2 colorectal cancer.  Here is an explanation of the how cancers are graded:

Staging

The most common staging system is the TNM system.

TNM system

  • T (tumour) – how far the tumour has grown through the bowel wall
  • N (nodes) – whether the cancer has spread to nearby lymph nodes
  • M (metastases) – whether the cancer has spread (metastasised) to other parts of the body

T stage

  • T1 – the tumour is in the inner layer of the bowel
  • T2 – the tumour has grown into the muscle layer of the bowel wall
  • T3 – the tumour has grown into the outer lining of the bowel wall
  • T4 – the tumour has grown through the outer lining of the bowel wall

N stage

  • N0 – no lymph nodes contain cancer cells
  • N1 – cancer cells in up to three nearby lymph nodes
  • N2 – cancer cells in four or more nearby lymph nodes  

M stage

  • M0 – the cancer hasn’t spread to other parts of the body
  • M1 – the cancer has spread to other parts of the body, like the liver or lung

As you can see from the description above the cancer had spread to the outer lining of my bowel wall (T3) none of the 20 lymph nodes that were removed had vascular invasion (N0) and the cancer hadn’t spread to any of my other organs (M0). The diagrams above show the growth of each tumour stage and the related survival statistics (I will talk more about that in my blog about oncology).

It was a hell of a lot of information to take in, I had prepared myself for them to confirm it was definitely cancer as they had indicated this all the way along but the news still hit me like a train!  It was good news in so many ways it was such a relief that no lymph nodes has been invaded and that it hadn’t spread anywhere else.  The nurse went on to explain that there was clear margins around the tumour & everything was removed successfully.

Science bit:  She told me that there is a test they conduct called mismatch repair (MMR) the latest research in colorectal cancers has confirmed the importance of molecular screening of patients with colorectal cancer using immunohistochemistry.  This strategy managed to identify mutations in patients that otherwise would not have been detected. Therefore, it was recommended as a policy for all newly diagnosed colorectal cancer patients due to its important prognostic implications.

In lay man’s terms the research was looking at why some people respond to chemotherapy and why some people don’t.  The immunohistochemistry revealed that certain proteins in the body are deficient (not likely to respond to chemo) & proficient (likely to respond to chemo). In my case my protein cells were proficient and likely to respond well to chemo, on this basis they confirmed that they would make me an appointment to discuss the prospect of chemo with an oncologist.  I won’t lie I was upset that this wasn’t the end of the road, I was thinking surly it’s all gone what do I need chemo for?  Of course I was going to listen to the experts and would meet the oncologist with an open mind.  As I’ve mentioned previously there is a chance that my cancer could be a hereditary condition so I have also been referred to a geneticist to look into DNA and family history.

 

I came off the phone feeling totally overwhelmed with information, I had a cry as it all felt so unjust but it was the hand I had been dealt and I had to play that hand and I was prepared to do whatever it took to ensure I’d done everything to give me the best chance in the future for me and the kids.