My experience of travel insurance with a cancer diagnosis.

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I was diagnosed with stage 2 bowel cancer in March 2018 at the age of 36.  It came as a total shock as I hadn’t been un well and I was what I considered to be a healthy individual.  I exercised,  I was a healthy weight, didn’t smoke or drink much.  I was in a low risk group without a family history of the disease.

I work as an account manager and I am single mum to 3 amazing children.  Family holidays are really important to us as it gives us time to relax and spend quality time together.  Unfortunately when cancer hit thoughts of a holiday were put on hold.  I had a holiday booked to Turkey in the June but had to cancel and I hadn’t taken out travel insurance so I lost my money.  I did what a lot of people do and was leaving it until nearer the holiday to book insurance.  An expensive mistake I won’t make again, especially since having cancer.  I can no longer take those risks as you never know what’s round the corner.

It was a difficult time for my family especially for the children having to see me go through an operation and 6 months of chemotherapy. My thoughts turned to holidays as something to look forward to once I’d finished treatment.  I wanted to take my children to Disneyland Paris and friends of ours were getting married in Cyprus in October 2019 and I was determined to make it as a family.   

My attention turned to travel insurance, I waited until I’d finished active treatment and began to get quotes on various comparison sites. I couldn’t believe the prices I was being quoted once I had declared the Bowel cancer.  I was looking at around £3000-£4000 for one weeks holiday in Europe and some companies wouldn’t insure me at all.  I began to think I wouldn’t ever be able to go on holiday again.  I live for the sunshine and warm weather so this just wasn’t an option for me.

I turned to social media to ask people I had made friends with since being diagnosed who they recommended for insurance with a cancer diagnosis.  ‘Insurancewith’ was one of the most popular responses so I decided to contact them.  They were really helpful when I called and I went through all the details and I made it clear I had finished treatment but at that stage I hadn’t been given the all clear from follow up scans and tests. They didn’t mind this, all I had to do was to inform them of any new changes from what I had declared.  I managed to get myself and my children insured for a year for under £300, I couldn’t believe it! It gave peace of mind knowing I was covered should anything happen especially health related.

I am happy to report that in 2019 we made it to Disneyland Paris, we made it to the wedding in Cyprus and I even got 2 trips away to Spain.  I certainly made up for lost time!  Cancer doesn’t have to stop you doing what you want and trips away and making memories are even more important to me now. I am coming up to my second cancer anniversary and fingers crossed I remain in remission.  Travelling has its issues post diagnosis mainly with diet and the risk of bowel obstructions but that won’t stop me and knowing I am covered means I can go and live life to the full.

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1 year since diagnosis!

This picture was taken 1 year a go today, when I got the biopsy results that officially gave me my grade and stage of cancer. It is also Mental Health Awareness week so I’m reflecting on the impacts cancer have had on me. I had been told from the start it was very likely to be Bowel cancer so I wasn’t shocked when they confirmed it was but I was shit scared to find out how far it had spread. I can picture the phone call so vividly my heart beating out of my chest, ears pounding and sweaty palms. The tumour was contained in the Bowel and hadn’t spread to any of the 22 lymph nodes they removed. I was officially diagnosed with stage 2 Bowel cancer (T3 M0 N0). For the first time since the journey began I’d heard the words you have cancer and it hit me like a speeding train the sudden realisation that holly shit this is real! I sobbed properly for the first time since it all began!

Fast forward a year and I’ve been through 6 months of gruelling chemo which battered my body and mind but I actually felt my strongest mentally during treatment because I had a focus and a reason why I was going through this treatment to extend my life and be there for my children. Don’t get me wrong there were dark days but I can look back now and say the toughest part has come after you get told your done go and go crack on with life.

I’ve spoken before about the pressure to get back life to ‘normal’ once treatment has finished but nothing feels normal. I make myself feel guilty that 6 months post treatment I’m still really struggling with the mental side effects of let’s face what is a really traumatic event (I know 6 months is nothing). I want nothing more than to embrace life but the mental scars are getting in the way. There’s not a day that passes that I don’t think about cancer in some form and through work, 3 kids and being a single parent into the mix it’s all a bit overwhelming! It’s very hard to explain it and unless you’ve been through it I appreciate it’s hard to understand.

I’m emotionally unstable the mood swings are awful I’m tearful one minute, angry or happy the next. People disappear and get on with their lives but I still feel stuck in a hole, isolating myself and lacking motivation. Every appointment I attend reminds me of this awful disease and what it’s done to my body and mind. This week is mental health awareness week I accept I’m going through a period of recovery and I need to give myself time and I hope sharing this makes other people see they aren’t on their own. The hardest thing about having a cancer that’s been treated hopefully successfully is the expectation to be ‘grateful’ it wasn’t more advanced and ‘I’m lucky’ nothing is lucky about having any form of cancer and the impacts are very real no matter what the prognosis.

I’ve struggled to get my emotions under control recently and I’ve no shame in admitting I’ve seen my GP for some help and I have some antidepressants to get the ball rolling & hopefully get better control over my feelings. It’s still early days in the recovery process but I hope it helps others to realise it’s ok to struggle and it’s ok to ask for help. It’s not all doom and gloom it’s recognising it takes time to heal and there’s no time limit,
have the down days let the feelings come and then release them. Next week I go away for the first time since the diagnosis to get some much needed r&r putting my mental and physical health at the top of my priority list. Having things to look forward to really helps me get through the tough days.

Age of diagnosis
Showing my support for the never 2 young campaign aimed at raising awareness about bowel cancer in younger people

The struggle is real…..take care of yourself!

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I am writing this blog in response to messages I have received firstly asking for advice and tips on anything that can help with the side effects of chemo and generally anything that helped get me through the continuous cycle of treatment. Secondly I’m writing this in response to messages I’ve had about people feeling alone and isolated particularly after treatment and not knowing where to turn.  I’ll address the practical stuff first.

Cancer treatment can send your body into a tail spin of side effects, I often woke up thinking what new strange thing will happen to my body today, side effects all vary depending on the treatment so I can only go from my experience. Over the months whilst on chemo I built a tool kit that I carried everywhere or items I kept at home to help.  Pictured above were my go to items, I’ll list each one below:

1. Nivea care & colour lip balm – Dry mouth/lips is very common so always handy to have these stashed in every bag.

2.  VI Poo Spray 🙈 fellow Bowelies you will understand this 😂 I didn’t have a stoma when I had my surgery but because they removed all the bowel I do get frequent bowel movements and they can be quite acidic and not pleasant smelling because it doesn’t hang around for long in my body as I’m missing the bit that processes the waste.  This can be quite embarrassing when out and about, but this little bottle of magic neutralises smells when you spray it in the toilet water before doing your business.  It really works, lemon I think is the best one I recommend it to anyone even without your bowels missing.

3.  Anti-Bac hand gel –  An obvious one but very handy to keep everywhere especially when in public places where you might not have access to water and soap. Chemo weakens the immune system and can leave you prone to infection, you are generally encouraged to avoid crowded places but this isn’t always practical so this pot of gel was very useful.

4.  Moist Toilet wipes –  Not much explanation needed but very handy especially if soreness is an issue.

5. Bio oil –  Helps to reduce the appearance of scars, I used this on my incision sites once they had fully healed and it is also a great all over body moisturiser.

6. Palmers coconut oil conditioning shampoo & repairing conditioner – Hair loss is a side effect most people associate with chemo and so did I so I was surprised to learn that on my treatment regime I might not lose my hair, but it might become patchy and thin.  I was lucky that my hair remained and I didn’t notice much change in texture or patching.  However during chemo I made some changes to my regime, I used to wash my hair several times a week but I began only washing it once maybe twice using the palmers shampoo and conditioner which contains no sulphates, parabens, no dyes, no minerals and the ingredients are sustainably sourced.  I also tried to limit the use of hair dryers/stylers and hair products so that my hair was left as natural as possible avoiding most chemicals that dry and damage the hair. I still use them now and have stuck to these changes.  The advice is not to colour your hair during treatment and for up to 6 months afterwards, but girls we know we like to have nice hair especially when feeling the effects of chemo.  About half way through chemo I decided to have my hair highlighted avoiding contact with the roots, I needed a pick me up and I decided it was worth the risk.  Luckily it all turned out fine and I had a full head colour shortly after treatment and it has been fine.  It comes down to individual choice about how strictly you stick to the advice.

7. Aveeno daily moisterising lotion –  Cancer treatments can really dry out the skin and it becomes more sensitive. I found this un-perfumed body lotion with natural ingredients really lovely and I’ve kept using it.

8. Udderly smooth moisturising lotion – As I’ve mentioned above chemo can really dry the skin,  on the capox treatment my hands and feet were very dry and sore. I noticed on a forum that a lot of people recommended this cream so I gave it a whirl.  It’s a great barrier cream and really helped smooth my feet & I still use it now,  I found it to be cheapest on amazon.

https://www.amazon.co.uk/Udderly-Smooth-Extra-Unscented-Moisturising/dp/B001KYTVZ0/ref=sr_1_2_a_it?ie=UTF8&qid=1550180293&sr=8-2&keywords=udderly+smooth+moisturising+cream

9. Handmade naturals hand cream (lavender, orange, cocoa butter, almond and grape seed) –  A really lovely natural hand cream small enough to pop in your bag and smells yummy.

10.  Estée Lauder advanced night repair syrum – This is a splurge item, I was lucky that a lovely friend bought me this as a gift.  You pop a couple of drops in the palm of your hand and then smooth over face and neck when you go to bed.  It really helped to replace the moisture in my face that had been dried out by chemo, you only need a small amount so it lasts a long time, well worth it as a treat….you deserve it.

11. Thera Pearl hot & cold therapy –  I forgot to put this in the picture, I bought this reusable hot/cold pack to use on my really sore arms following the Oxaliplatin treatment.  It’s notoriously harsh on the veins and as treatment progressed my arm would be semi paralysed for a few days.  This handy sized pack contains gel beads you can pop it in the microwave and then use to ease soreness.  I took to hospital and used it on my arm during the iv’s and it came everywhere with me at home.

https://www.amazon.co.uk/TheraPearl-Reusable-Flexible-Compression-Arthritis/dp/B002OSWW34

A bit of self care is so important even more so when navigating the cancer minefield.  I tried to have something to look forward to on the breaks between treatment, cinema trip, dinner out,  getting nails done, buying some new make up, tea and cake even wine. Anything that you’d enjoy and celebrate the little milestones, even just making time for a bath and some you time.

That’s the practical stuff now for the important emotional stuff, I’ve had some messages from people and the overwhelming theme was feelings of isolation, feeling alone and struggling to adapt to life post treatment.

Can I just say YOU ARE NOT ALONE! I got told quite early on that whilst you are on the hamster wheel of treatment, blood tests, hospital appointments, scans etc you have a focus living one cycle to the next and as soon as it all stops (if you are in the position to have an end date) a massive void appears and the gravity of what you have been through hits you. At the time I didn’t know how it would affect me but now I have an insight into the aftermath.

I finished treatment 3 months a go and I will admit it’s been a real struggle, I grieve for the pre cancer me, is it possible to be the same again once you have been through something so life altering?  I stare at a body I don’t recognise and I argue with my internal monologue all the time.  I feel guilty that I haven’t immediately embraced life (that I’m lucky to have) but I’ve come to the conclusion that I put too much expectation on myself and it’s perfectly okay to take time to process what’s happened and allow my body to recover slowly.  I hadn’t realised how much of a security blanket hospital was until it all stopped, seeing the doctors was oddly comforting. I felt and still do feel a little lost, what do I do now? I can’t jump back into the old life so without really realising it I have been isolating myself and despite feeling lonely at times I didn’t want to see anyone.  As the time goes on contact from family and friends decreases and you can’t help but feel no one understands.

To those of you that feel alone there is a lot of help and support out there, I have made a host of friends through the online community, speaking to people who have been through similar is really comforting.  Most cancer charities will have an online presence so I suggest follow them on Twitter, instagram, Facebook etc and you will soon start to engage with people or at least begin to see a lot of your own fears are shared by others.

There are helpful forums on charity websites in their online communities that have blogs, groups, support lines, chat groups and discussion topics

https://community.macmillan.org.uk/?_ga=2.230140188.1661650056.1550183430-1946591558.1550183430&_gac=1.44705424.1550183430.EAIaIQobChMI66Pbo6O84AIVzp3tCh15ewZzEAAYASAAEgI8H_D_BwE

https://community.bowelcanceruk.org.uk/forum/

Sites like Macmillan and Bowel Cancer UK also provide information on support in your area, I accessed counselling through a local charity ‘coping with cancer’ in my area and you can look up what’s available in your area.  Many hospitals have started running post treatment support groups your local hospital should be able to tell you about what’s available.

Maggie’s centres support anyone affected by cancer, you can talk to and get support from a range of professionals. There are 21 Centres staffed by Cancer Support Specialists, Benefits Advisors, Nutritionists, therapists and Psychologists, all providing support in whichever way best suits you.  You can check if there is a centre near you on the website.

https://www.maggiescentres.org/

I don’t have the magic answer but I am taking small steps to build my confidence and navigate the new way of living.  Do whatever works for you but don’t feel you have to feel amazing straight away, getting to that embracing life stage can take time. We will get there and in the mean time you are not alone, I hope it helps and take care of yourself

xxx💕

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Reflections on a difficult year and lessons I’ve learned!

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I’ve always maintained this is my open diary so here are my honest reflections on a difficult year and what I have learnt. Some of it I’ve never spoken about before but it seems fitting as I leave this year behind me. I hope there is some wisdom in there for you all!

2018 has undoubtedly been one of the worst years of my life so far. I started the year with love in my heart and making plans for the future then in March comes heart break, I know ultimately I dodged a bullet but there’s been a lot of shrapnel damage.  Heart break is hard at any time but being deserted 2 weeks after being told you have cancer was so hard to deal with at a traumatic time, that person should have stepped up but their actions are a reflection of their character and I’ve learnt some valuable lessons.
LESSON: You can’t control someone’s loyalty, the right people will come into your life and stay so pay attention to those people. 

April consisted of the major surgery to remove my colon and the nasty tumour and all the difficulties that entails with the recovery and adapting to life with a major organ missing.  Then in May I got the confirmation that I had Bowel cancer, hearing the words out loud time just stood still. Facing uncertainly is awful and the utter disbelief that it’s happened to me.
LESSON: Your health is a very precious commodity that we take for granted.

In June I was then faced with the decision about having chemotherapy, signing myself up for 6 difficult months receiving toxic drugs and a whole host of nasty side effects.  I had to do it to give myself the best shot of a longer life and time with my kids.  As you all know it’s been a complete rollercoaster and one of the hardest things I have ever been through.  In the meantime I have to adapt to the new normal, work on my fitness and crack on with life but just with a nagging ‘what if’ at the back of my mind.
LESSON: Sometimes we have to do things in life that are difficult but it directs us to where we need to be going.

That’s the rubbish stuff now for the positive! Although it’s been a horrendous time I’ve learnt so much about myself. I’ve had to find strength I never knew I had to get through each day it’s been the hardest physical & mental battle and I’ve been in some dark places where at times I wasn’t sure I could get out but each day is a new start and guess what I got through it.  Digging deep and pulling up my big girl pants as the next treatment loomed knowing exactly how it was going to make me feel with all the side effects but having little choice about it.  I do feel a sense of pride in myself, I feel if I can get through this I can face anything.
LESSON: Strength is in all of us and when we are at our lowest that’s we realise how much strength we have.

This year has brought a few firsts that I’m proud of, never did I imagine that I would have the opportunity to do tv, newspaper and radio interviews about my experience of cancer and helping to raise awareness about symptoms and improving access to diagnostic tests and highlighting the importance of donating blood.
LESSON: Good things come from a bad situation

I have been blown away with the kindness of strangers who have shown their support through messages on my blog, especially people newly diagnosed who have messaged to say the blog has been really helpful, that makes it all worth it. To my friends and family I simply couldn’t have got through it without you. I’ve been totally overwhelmed, it’s true what they say….during the worst times of your life you see the true colours of everyone and it’s touched me beyond words.  This experience has also meant I’ve made a new group of friends through Bowel Cancer UK. These people who have a common connection with me are simply amazing and the charity has been so supportive and I’m so excited to be involved with charity moving forward. I have some exciting ideas I plan to put into action next year off the back of my experience and I will be clogging up Facebook with fundraising pleas 😂
LESSON: During the worst times in your life you work out the people who really care. 

I now look at life in a totally different way, we rush through the day, the week the months and the years roll by. Sometimes we barely look up from our feet or our phones.  Take the time to enjoy the simple things in life.  Make memories, take the trip, spend time with loved ones, tell people how you feel.  We don’t need possessions they won’t mean anything when you are gone. Life is so very precious don’t forget to live in the moment don’t just go through the motions.  Keep healthy in body and in mind, making time for you isn’t selfish it’s necessary.  If you were told you had a few months to live what would you make your priority? Don’t wait to hear that news and start doing it now!
LESSON: The past is done, we don’t know what the future holds all we have is now!

My goals for 2019 are to work on my own happiness, don’t chase it it’s got to come from within and only when you are happy with yourself can you open up to other possibilities that will come to you. I want to prioritise the things that matter to me, making memories with my family, spending time with the right people, working on being the best version of myself by doing things that feed my soul.  2019 undoubtedly involves more scans & tests but next year I prioritise working on me!
LESSON: Happiness starts with you!

Wishing you all a happy and healthy 2019 💕

 

Genetic results – more confused that ever!

I’ve just got back from my appointment where I received the results of the genetic testing that was done as a result of having bowel polyps and bower cancer at 36. They tested all of the genes that are known to have links with polyps and Bowel cancer.  I was as shocked as the geneticist when she revealed that they hadn’t found any gene changes that would explain why I had polyps or cancer from the genes that were mapped.  I felt a sense of disbelief as I was convinced they would find something that might give me an answer as to why I’ve had Bowel cancer so young.  On the one hand I should feel pleased that at the moment there isn’t any immediate concern for my family but I feel cheated, of course when you have cancer you want to know why and I’m still left hanging and it’s made me feel quite emotional as now I’m faced with uncertainty.

The key phrase is ‘the genes that we know of’ genetics is very complicated and advances are being made all the time in research.  They still strongly believe that it’s likey a gene change has caused the polyps and the cancer but it might be a gene that they just don’t know about yet. Maybe in 5-10 years they will know but that doesn’t help me or my kids right now in trying to understand why all this happened to me.  The fact is I had hundreds of polyps in my colon and that isn’t normal and the geneticist agrees.

I feel like it’s somehow my fault, have I done something wrong in my life to end up in this situation? Even if the result had been bad news it would have at least provided me with an action plan and options.  Now I am left in limbo and completely  paranoid about the future.

I laughed out loud when they said that because no gene change was found the children would be screened from the age of 50 as the guidelines suggest.  Fuck the guidelines, I’m sorry but their mother has had Bowel cancer at 36 and you still strongly suspect a gene change somewhere and you think it’s acceptable to make them wait until they are 50.  No way, I will fight for my kids to be screened at an earlier age below 30 if I can help it.  They’ve agreed to speak to the Bowel cancer screening team about the situation.

There has to be a reason why myself and so many others are getting Bowel cancer at a younger age when there isn’t a family history of that cancer or associated conditions such as chrone’s or colitis. This is why raising funds for cancer research is so vital so we can begin to understand more about cancer and it’s causes and how it can be prevented.  I can’t change the fact I’ve had cancer and I don’t know why I’ve had it, I hope that one day I will know as medical advancements are made and that’s why fundraising for these research projects are so vital.

 

 

 

 

 

Cancer takes a piece of you!

I told you it wouldn’t be long before I would be back writing again! 😂

I made quite a powerful statement in my counselling session last week ‘cancer takes a piece of you’ and it really resonated with me and gave me a lot of clarity.  It can take away your freedom as your life becomes restricted by not living beyond one appointment to the next or in three-week blocks according to the treatment plan.  You have to cope with the side effects and grieve for the life and body you once had and somehow carry on with the here and now as life still goes on, it’s a lot to process all at once.   Although I’ve only just recently finished my treatment I can already see that the psychological impact of getting a cancer diagnosis will continue for a long time.  I’m now in the position that I’ve got to find a ‘new normal’ knowing my life will never be quite the same again and I’ll never be able to put it fully behind me.

I look the same to all my friends and family and strangers on the street wouldn’t know by looking at me that I’ve had cancer but for me I have a constant reminder I have a body that doesn’t work the way it used to.  I used to love going out to eat but now I have to scan menus to see what I can eat in order to avoid excruciating stomach cramps, bloating and multi toilet trips this usually results in picking something bland and boring and not choosing what I’d prefer to eat, I also have to Scan places to find the nearest toilets, all these things create a lot of anxiety and kills spontaneity.

I realise this all sounds very negative and to be honest it is as nobody would choose this, however how I chosen to look at it is that it’s only one piece of me, grief of losing a loved one takes a piece of you, heartbreak takes a piece of you or any other major life event.  All these events take a piece of you but they undoubtedly shape who you become.  Cancer will not define me but it has helped me to grow as a person, I will always have to live with the impact cancer has had on my body and mind and it will never be far from my thoughts with ‘the fear’ being one of the worst things to live with but I will learn to live with it.

Since finishing treatment I have been feeling very flat but now is the time to reset and focus on moving forward and adapting to this new body I have been given and build a relationship with it so I can I live my best life.

 

End of the chemo chapter but the journey continues!

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I don’t really know where to start with this blog, I really didn’t think I’d be writing about the end of chemo yet.  As you know from my last blog cycle 7 was delayed a week because those naughty platelets weren’t behaving.  When I saw my oncologist on Friday he said “I’m afraid your platelets are still too low and have barely increased in the last week so I’m ending treatment because I don’t want to put your body under anymore stress and cause any long lasting issues”.  Even though I knew it was a possibility it didn’t sink in that he had just told me your treatment is done I hope I don’t see you in here again 😂  He was happy that we achieved 6 cycles and reassured me that not having another 2 cycles won’t make a massive difference to my long term prognosis but I wasn’t to run any marathons yet 😂 as body is going to take a while to recover.  I was dazed and as it was a routine appointment I had gone on my own so I rang the bell to signify the end of my chemo journey with one of the lovely nurses.  The patients clapped for me and it reminded me when I had my first chemo session and hearing someone ringing the bell and thinking how good that must feel and it was a goal to aspire to.  I actually felt very numb and went and sat outside the waiting room staring at the wall thinking that’s it 6 of the most difficult months of my life is over.  I went up to the chemo suite and told them I’d finished treatment and I shed a tear and hugged the nurses that had given me such great care.  I got back in the car and cried most of the way back to work but when I got to work and walked through the door all my colleagues were clapping which set me off again it was so overwhelming, they’ve lived this journey with me through tears and frustration so I can’t thank them enough for their support.  We all raised a glass of champagne in classy Nescafé paper cups.

A tidal wave of emotions!

I pretty much cried on and off all day, so many emotions at once hit me like a train.  As anyone that’s had cancer and undergone treatment will tell you it totally consumes your life and you don’t live much beyond more than 1 appointment to the next and then suddenly it all stops.  I didn’t celebrate that evening I came home to an empty house and just sat, cried and reflected.  Cancer has been the focus of my life this year from investigations in January/February to discovering a tumour in March, having major surgery in April and adapting to life without a large Bowel, getting the cancer diagnosis in May and then chemo commenced in June and has taken me through to November and now there’s a void and I have to learn how to fill it.   I hate cancer it’s a vile disease and I hate what it’s done to my body and mind but I am also grateful for the lessons it’s taught me.  I’ve learnt a lot about myself,  when I was at my lowest and in pain I somehow found the strength to get up each day and get through it, cancer has given me a determination to appreciate life and those that I love on an entirely new level, it’s allowed me to be more open about my feelings more than ever before, raw emotions are just part of the cancer journey and it’s okay to admit you aren’t okay. Most importantly for me having Bowel cancer has allowed me to meet some amazing people through Bowel Cancer UK and through the online community that I can now call friends, we all understand each other’s struggles and for me having cancer has found something I’m now very passionate about.

What next…..?!

The chemo chapter has ended but I’m still on the cancer rollercoaster but for now the ride has slowed down a bit.  I joke that I’ve kicked cancers butt in reality I don’t really know if I have and once you’ve had cancer the fear of a recurrence will always live with you.  For now I get to have a break and begin to slowly get my life back on track with the new normal.  I’m hoping after a period of time I can start introducing more varied foods into my diet that wasn’t possible whilst on chemo, begin to exercise again, dye my hair 😂 and have a much needed holiday.

My genetic results that were expected last week weren’t ready yet so it’s likely to be December before I hear anything. This is currently my biggest worry, what the tests will reveal and if it will impact on my family.  My follow up scans and investigations begin in April 2019 one year after my surgery and will continue for the next 5 years, anxious times ahead but all I can do in the meantime is crack on with the life I’ve been given a second chance at.

The blog won’t stop here I will continue to share my journey partly because I can’t imagine not writing anymore.  I will continue to clog up your news feed with stats, education, awareness, donating blood etc etc 😂 I won’t apologise it’s a subject I’m very passionate about and I will now be a life long supporter of the Bowel Cancer UK, watch this space for my first fundraising challenge so have you 💰 at the ready 😂

Today I give Thanks to all those that have supported me on this journey

As I said before cancer is one shit of a disease (no pun intended 😂) but it’s shown my the kindest of the human spirit.  I really don’t know how to begin thanking people for their support and some will be personal but I’m so grateful for all of the words of encouragement and support, the cards, gifts, flowers and food, it means the world to me and has helped lift me out of some pretty dark places.   You are amazing and I couldn’t have done it without you all.  I may still need your support a while longer especially as the rollercoaster of treatment has finished and I’m now facing a void in my life that I have to re learn how to fill but I’m excited for the things to come.

xxx

Cycle 6, Five minutes of fame, fundraising & setbacks!

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Hi all, so another cycle in the bag I have to say it’s flown by with relatively little difficulty other than the usual side effects.  My poor old veins are struggling so much so that the nurses ended up putting the cannula in my thumb, yes there was swearing 😂 and it was by far the most painful round of the IV’s I’ve had to date.  Fortunately if I have any more rounds my consultant has agreed to site the cannula higher up in my arm which is something they don’t normally do due to the risk of tissue damage but he was clear it would be fine 😳. I have been frustrated this week at yet another set back in treatment, round 7 delayed by a week because once again my platelets are too low 🙄.  The goalposts keep changing, at the end of cycle 5 my consultant said if my bloods results aren’t good next time he would end the treatment but even though the result wasn’t good he wants to see me in a week to try again.  I know I’m lucky to have an end goal but it keeps moving slightly out of reach and I was fed up and frustrated and I really want the treatment side of things to end for Christmas so I can start 2019 with a new focus and hopefully it still will.  Once the initial frustration subsided I had a word and reminded myself that my treatment is to mop up any floating cells. I’m not on treatment indefinitely (not yet anyway) as my cancer isn’t advanced and for so many it’s ongoing to buy them time, yes it’s buying me time and I have other concerns with genetics and what implications that could have for other cancers and of course my family.  My journey has meant I’m now in touch with many other amazing Bowel cancer patients many of which have advanced cancer but they deal with it with such grace and dignity they are true hero’s in my eyes.

5 Minutes of fame! Some of you may have seen my TV interview on BBC East Midlands news talking about the waiting times for diagnostic tests and my experience. Obviously the ‘fame’ bit is a joke as I did the interview to raise awareness of this hugely important issue.  As you may know from my previous blogs so many people are waiting too long for crucial diagnostic tests, this is especially true in younger patients as there is still a tendency to delay referral as many GP’s don’t think Bowel cancer would explain symptoms in a young person.  I spoke about my experience, initially I was offered an endoscopy/colonoscopy 5 months after my referral I should have been seen in 2 weeks! I am very fortunate that my GP was fantastic throughout and insisted my tests were brought forward.  He has literally saved my life as had I waited 5 months my cancer would probably have been more advanced and potentially spread to other organs. Unfortunately this is what is happening to so many people so my mission is to help put an end to this crisis.  Waiting times are particularly bad in the midlands and Leicestershire hospitals have stated that they will try to address this.  Bowel Cancer UK have done fantastic work at pushing for the Government to create a fully funded action plan to address staff shortages and address the capacity crisis with access to tests.  I will do what I can to support the charity’s work and continue to raise awareness about symptoms and access to treatment for the rest of my days! Oh and have I mentioned please donate blood 😂

A bit of fundraising! In October a group of my amazing girlfriends collectively named ‘team Kate’ walked through the streets of Leicester (see pic) with all manner of glow sticks, flashing lights and leg warmers to raise money for Cancer Research UK, they do amazing work funding vital research so we can better understand and treat cancer. We raised over £500 and we had a great night walking, chatting and celebrating with a cheeky glass of fizz! Thank you girls and to all the amazing people who sponsored us your money will make a huge difference.

Lots of positive things in the last few weeks and some set backs but that’s the twists and turns of the rollercoaster of cancer! I will get my genetic results this week, not going to lie I’m really scared but all very necessary for future monitoring for me and my family.  I’ll update you all on that one soon.

Lots of love xxx

 

Climbing out of the ball pit!

Ever tried to climb out of a ball pit? You scramble about with the grace of a baby elephant and just when you think you’ve made it out your foot slips and you fall back in!  You are probably thinking what has this got to do with a blog about cancer. Well the ball pit analogy describes how I feel about my treatment at the moment.  I can see the end goal but it keeps moving slightly out of reach, I get near the top of the ball pit but I keep falling back in!

I should be at the end of cycle 6 but I haven’t even begun it yet, the first delay was due to my red blood cell count being extremely low resulting in me receiving 2 pints of blood via a transfusion to boost my chemo induced anaemia.  I am extremely grateful that I could receive this transfusion thanks to blood donors, I have now received which I think is karma for being a donor that ultimately saved my life! Please donate if you are able to❤️.  The following week my red blood count had increased by my platelets were too low so once again treatment was delayed.  It’s such a blow every time treatment is delayed and it takes it toll mentally as well as the physical effects that the chemo is having on my body.   Delays are quite common especially toward the end of treatment as the body gets tired of cumulative effect of all the toxic drugs.   This is why your blood is checked before every cycle to keep monitoring how the body is coping.

I also feel a lot of guilt that I have a moment of self pity regarding my delays, there are cancer patients out there that don’t have an end date for treatment and they will be on chemo or some form of treatment indefinitely as maintenance for advanced cancer.  I only have 8 cycles to go through, don’t get me wrong it’s tough as hell but there are people going through 20-30 plus cycles, numerous operations and procedures.   So yes I have my down days as I have to cancel plans and rub out dates on the calendar and the end moves that bit further away.  But I allow myself to feel what I need to as it’s relevant to me and my life and on World Mental Health Day I want to say it’s ok not to be ok, sit with those feelings but then get up and ask them to leave.  If you are newly diagnosed or even been on the chemo journey a while there is a wealth of support out there.  The online community on Bowel Cancer UK website is a great source of information and support.  Similarly Macmillan can point you in the direction of support in your area.  Today I had confirmation that my counselling through the charity ‘coping with cancer’ can start in a couple of weeks and it’s come at a good time.  Whatever you are going through there is always someone willing to listen whether it’s a friend down the pub, a family member or a professional but don’t suffer in silence, talking about our mental health should become a normal conversation without taboo, progress is being made through some amazing awareness with charities such as Heads Together but it’s up to us to open up.   As I’ve said before this blog is my outlet and it really helps but it will never replace human conversation with my nearest and dearest.   Have a wonderful day 😘

 

Cancer doesn’t have to stop you LIVING!

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It seems fitting on the 16th anniversary of my mum’s death that I talk about my thoughts on carrying on living despite the cancer treatment.  My mum didn’t have cancer and died very suddenly at only 52 when I was 20 years old.  Going through that experience made me appreciate how precious life is but it hit home even harder when my own mortality was threatened when I was diagnosed with cancer.

I don’t want cancer to be my entire identity, so I try to live as normal as I can and show others that you can get up and out, get your make up on and do things you enjoy as long as you feel able to.  I know for some people it’s not possible but this is how I deal with my treatment, I’m not very good at sitting still! You might be fooled if you look at my social media that my diagnosis is my identity but they are very different things. I use social media to shout from the roof tops about raising funds for vital research, raising awareness about symptoms and better access to treatment.  I want to show people you can LIVE with cancer, a lot of people say to me that I look so well, I can’t believe you have cancer.  Maybe that’s because I don’t fit the stereotyped image of cancer patient looking frail with a headscarf and I think that’s a positive thing to show to people.

I get told a lot I’m brave and to keep fighting, I’m not brave I have no choice but to put my life in the hands of the experts and take whatever treatment they recommend to prolong my life and do what I can to look after myself.  I can’t fight my cancer, that’s not within my control but together we can fight for awareness, treatment and more research.  That’s my motivation to keep going and maybe one day no one need die of this fuc**ing awful disease.

Cycle 5

It’s been a busy few weeks since my last cycle,  I’ve had my dose reduced to try and alleviate some of the side effects I haven’t noticed much difference, the same issues seem to occurring without much let up.  I’ve noticed with the change in the weather the neuropathy is increasing, on the chilly school run my hands are getting numb and my nose tingles.  I was also struck by a sickness bug that really wiped me out for a few days, lots of things going around at the children’s school I’m glad I’ve had the majority of my treatment over the summer and on the whole managed to stay relatively healthy.  Getting toward the home straight now but the end also makes me feel nervous for the future.

Lots of great things have happened this cycle, I feel proud to have supported Bowel Cancer UK with their walk together month.  I travelled with my friend to London to take part in a 5 mike walk along the Thames with other people affected by Bowel cancer raising awareness and funds at the same time. It was a beautiful sunny day and our teal green t-shirts stood out in the london crowds (see photos) and it was very humbling chatting to people who have had Bowel cancer particularly other younger people and those that sadly lost family members to the disease.  I have to say a big thank you to the lovely waitress that gave us a free glass of wine with our lunch because we were doing a charity event and to the kind stranger on the tube that gave me a £10 donation and of course the amazing fundraising team for putting on such a great event.  I think so far the walks in london, Edinburgh, Cardiff and Northern Ireland have raised well over £40,000. 🙌

The support of the local media has been fantastic, the Leicester Mercury wrote an article about my diagnosis and taking part in walk together and importantly wrote about the symptoms (see picture). I also appeared twice on BBC Radio Leicester breakfast show with Jimmy Carpenter, allowing me to share my story and raise awareness.  The charity is also using my story in various campaigns particularly the need to get people access to the right tests in good time to increase the chances of detecting things at an early stage.

Cycle 6 on Monday if my consultant gives the go ahead, let’s hope they can find a vein.  Have a fab weekend.