August & September 2018!

I think I am very lazy at the moment, my motivation seems to of disappeared for a little while.  I feel that I’m struggling on a day to day basis and Im not sure why?  I’m incredibly busy, promoting awareness of bladder cancer during Urology awareness month, trying to write articles, being a wife (failing on that one right now), being supportive and caring, and having a good nights’ sleep.

Don’t get me wrong, I sleep better now than I ever did with my bladder in.  I guess I keep waking up in the night because I’m a fidget! I toss and turn all night long, driving myself bonkers as each time I turn over, I semi wake up as I check my night bag tube. So although Im not getting up to pee each night, I am still waking up.  And I feel exhausted, yet when I try to have a nap in the day my brain won’t let me.  Figure that one out!

Anyways, August and September have been great, I have been meeting more people and getting out of my comfort zone, which is a big thing for me.  I know that I always come across as confident but this couldn’t be further from the truth and I’m struggling with this at the moment with anxiety getting the better of me on a few occasions.

A few weeks ago I felt a “tightening” around my rib cage, my boobs became really sensitive and sore and then a sharp pain appeared in my scapula.  I underplayed this, as I hate having a fuss made.  I went to bed and was finally able to sleep, in-between the pain and being uncomfortable.

I woke up the next morning, still uncomfortable and now also having a “dead arm” with tingling fingertips. I tried not to let it bother me however as time went on and the Hubs left for work, it became increasingly worse.  I was breathless, hot and panicky.  I called 111 as didn’t think it was an emergency however I was becoming really worried I was having a heart attack.  I just wanted some advice.

Long story short, an ambulance was sent out and I had the nicest paramedics ever.  It was a panic attack, not a heart attack.  I felt out of control, I felt dizzy, my heart was racing and could hardly catch my breath.  I then felt terrible for calling them out when actually there was nothing wrong with me, well apart from the biggest panic attack I have ever had in my life.  I can’t believe just how debilitating it was.  it took me a few days to get over feeling so emotional.

A huge thank you goes out to my to lovely paramedics who sat with  me and calmed me down, and even said hello to Sherlock as I couldn’t lock him away.  they also told me that with my medical history I did the right thing.  I still felt a little foolish.

Anyways…. moving on.. I have been helping to promote all things urology as September is #Urologyawareness month.  I really had no idea just how awful my bladder was until I had it removed.  I now realise that not only did I suffer with incontinence, I had internal cystitis as well and the usual nocturnal peeing 6-7 times a night.  We need to make others aware that we don’t have to put up with this and that there is help out there.  For more information please see http://www.theurologyfoundation.org

Fight Bladder Cancer info stand at Royal County Hospital, Winchester

Don’t suffer in silence, talk to your GP, your Urologist and talk to other people as well, you will be surprised that, having urology issues, are more common than you think.  We need to stop feeling embarrassed after all we all have to pee!

I did have a little “accident” on my way to Winchester Hospital this week. I set off in plenty of time however I forgot that I am taking diuretics to help with the fluid on my lungs, due to the heart failure. Anyways I got to Four Marks (about 20 mins away from home) and realised my bag was filled to bursting point. I had no choice but to carry on until I found a lay-by, by this time it was too late and pee was seeping out of the bag all over my jeans.

I had wipes and was able to clean myself up and change my bag. The poor Hubs had to bring some clean trousers as I don’t take extra clothes with me anymore as I thought I had this “bag thing” sorted! That will teach me for being so cocky!

Changing my bag in my car!

Now for the exciting news…. I have been invited to the Houses Of Parliament, in October, for a giant Macmillan coffee Morning and have been asked to do a little speech eeeek! How flippin exciting? Little old me at the HoP, I can’t quite believe it, what an honour.  What a wonderful way to be able to spread awareness!

I found the most amazing dress from Tesco, its floaty, its autumn colours, it has a handkerchief hem… and have set my heart on wearing this for my speech.  Ala,s all my lovely dear friends went looking in their local Tescos and we just couldn’t find it in any store.  I contacted Tesco via FB and twitter asking them to help me.

It turns out that they don’t go up to the size I want, the size that I would feel comfortable in HOWEVER Tesco spoke to their suppliers who have made me one!!!  I cannot begin to tell you just how utterly amazed, thankful and shocked I am and also how happy I am.  I shall feel and look amazing on the day.  A HUGE THANK YOU to #Tesco for doing this for me.  I feel such a lucky girl.  I will post photos when I get it, as I was informed yesterday that its on its way… eek!

Well that is all for today, I think I now need to finish a few articles for Bladdercancer.net and work on my speech, which will be on “Incurable but Treatable Cancers”.

Wishing you an amazing day

love and hugs always

Anita

#kickingcancersbuttstill!

Im sick of this Cancer too!

At first , when you are diagnosed with any type of cancer, you will find amazing support.  People will come out of the woodwork, and send flowers and balloons to show their care. (I flipping love balloons) You will have soon much support and love, it will be mind blowing.

Once you have surpassed your ‘prognosis” people seem to think you are “cured”  or in “remission” and that you don’t need any support anymore.  They think you are fine.  This is NOT true.  It seems to get harder the longer I live.  There seems to be more emotions to deal with, not only yours but your close family and friends too.

They have all been on this hellish journey with you, they all expected you to be dead by now, but you aren’t so where does that leave them?   Of course they are happy that you are still alive and breathing, but this isn’t how it was supposed to be was it?  What exactly is gong to happen now?  “Who knows” is the answer.

We are living in limbo land, no mans land, the abyss….. You have to make some sense of it, somehow……

The Hubs is having a hard time right now, he is short tempered, he doesn’t have a lot of patience, he is struggling.  Helping him to see that there is a problem has had its downfalls.  He began to drink too much, even on a school night, he became someone I didn’t know as never having seen this side of him.

I would ask him what was wrong, and he honestly told me that he didn’t know, he was just enjoying ‘drinking”.  I feel it was an escape for him, an escape from this never ending  hell that we have found ourselves in. Too scared to plan for the future, as the future isn’t promised to me.  Too frightened to speak about what was really on his mind, incase he upset me.  This perpetual circle, going round and round and round….

If does seem funny, as my life is now filled with purpose and meaning.  I have found my place in the world, for now.  His life is not how he expected it.  How do you cope with being told your wife is going to die…. and then she doesn’t?  That has to mess up your mind at some point. I don’t think he is sat there with a voodoo doll and pins, and I know he is so grateful that I am still alive, it just doesn’t take way from the fact that he was told he would be spending his life on his own, the outlook was grim.

Its funny how your diagnosis can have such a traumatic affect on others. It isn’t just about me, its about everyone who knows me.  Who cares for me, who loves me. And whilst some can deal with it, others can’t.  I have to accept that.

I recently reconnected with a friend who I haven’t seen for over a year and a half. I always though that I had done something wrong.  I hadn’t, it was that she couldn’t cope with any more sadness in her life, having lost a few members of her immediate family, and distanced herself as she didn’t think she could cope with me dying as well.  It made me so sad to hear this.  She had to do what was right for herself and I totally understand her reasons.

So back to the Hubs.. he reached out to his boss, and is waiting for counselling.  It seems silly that I’m doing ok at the moment, and he falls apart now.  Yet for two and a half years he has remained strong, he has remained at my side.  Through all the health issues, the Raynaud’s, the Erythromyalgia, the moderate heart failure, the pancreas and the liver not playing nice, these are all reminders that Im not well.  These all impair my life, which in turn affect his life.

We have the reminders that the cancer WILL come back, small cell is sneaky, fast growing and aggressive.  The PET scans every 3 months so that when it does come back, we can jump on it fast.   My stoma and bag serve as a reminder of what we have both been though.  I cannot imagine what it must of been like for the Hubs, having to watch me go through something that he couldn’t help with.

One thing that I am so grateful for is that we talk.  It may take some time but we do eventually get there.  He is able to tell me how he feels, how helpless and lost he feels. How it isn’t fair.

Cancer isn’t fair!  We look to the future with a small amount of hope and faith….

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Road to self-love is a mess

Wow that’s all I can say… you are an amazingly strong young woman x

renegade7x

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Hey. Let me tell you short story or more like a confession of mine that I still can’t believe I’m actually gonna write all down after never ever speaking to anybody about this.

There will be a lot of trigger warnings in this article and probably a lot of judgement of my person and that’s totally ok. So here I go:

Based on the title of this article you might have guessed correctly that this will be about how I become more self-aware, self-confident, proud of myself for everything I came through and everything I  become. It wasn’t pretty road but it was mine and it was the one that led me to this confession moment.

Since I was a kid I was always a little overweighted, nothing serious just maybe 5 kg over the standard. I had genetically wider hips and all my fat would attack to my lover…

View original post 2,345 more words

Living Life to the Fullest – Sometimes its Hard!

Amazing Women

Over the past few weeks I have been lucky enough to meet and chat with some amazing people.  There is the lovely Rachel, who is living with two stoma’s.  She is such a gutsy young lady, who promotes awareness and volunteers in her spare time.  It is such an honour to meet other people who have overcome adversity in their lives and live their lives with such passion and valour.

I was also lucky enough to interview the wonderful Karen, who had no symptoms of bladder cancer and was only diagnosed after being told that they thought her symptoms were “women’s issues”. Karen unfortunately became very unwell with her BCG treatment and now cannot have anymore.  She is such a fabulous woman!

It got me thinking, I wouldn’t have met either of these lovely ladies, had I not been diagnosed with Bladder Cancer. So many exciting things have happened since my diagnosis, and although I would rather not have bladder cancer, I am grateful for everything that I am experiencing right now.

Worlds Biggest Coffee Morning

I have been asked to go the Worlds Biggest Coffee morning, at the Houses of Parliament, in October and have been potentially asked to speak about what its like having a “treatable but not curable” cancer.  Wow, little old me, I am truly speechless. And a little bit scared!

So Why Am I Down?

So why do I feel so miserable?  Why cant I even “fake” happiness today?  I have the world at my feet, I am living an amazing life and yet I feel so close to tears today.  I then feel guilty for feeling this way.   How ungrateful am I?  I should be bouncing about like Tigger and most days I do, just not today.

I’m breathless at lot of the time, huffing and puffing like an old women, this is due to the moderate stage of heart failure I’m in. It scares me.  Not all the time, just some days.  It seems strange that something that saved my life, also damaged my heart. I have an awful dry cough that wakes me up at night although this could be down to the medication I’m taking.

We all have down days I guess, and I tell myself that its ok to feel this way and to just go with the feelings. I worry… I worry about my Husband, he isn’t coping that well at the moment and I feel so helpless, there doesn’t seem to be anything I can do to help. We talk and chat, he tells me he is ok, but I can see he isn’t. He isn’t well himself and I am concerned that the pressure of the last 2 and a half years may finally make him crack up. And who could blame him?

We have gone from ” your wife is going to die very soon” to “wow she is still here, who knows whats going to happen, although she is still considered terminal” how can that not mess with anyones head?  All this pressure as well as holding down a full-time job,  both physically and mentally demanding.

It is emotionally draining.  We have another Pet scan coming up soon, I feel its going to be “no evidence of disease” again, which leaves us in ‘limbo’ land again and although this will be great news it does mess your head up.

We try to live in the “here and now”.  Its difficult at times, sometimes we get really cocky and plan things 6 months in advance and try not to focus on the “will I still be alive then”.  I guess with the heart failure in the picture now it is very “real” that I wont be living into ‘old age” that makes me sad.  Sad for what I will miss

I feel incredibly guilty about feeling down as I have so much to be thankful for. Waking up each day, still breathing, life flowing through my veins, I don’t have a right to feel down.  There are so many other people who are having a really rubbish time right now, what the hell have I got to feel sorry for myself for?

Naughty Step!

Have taken  10 minute “naughty step” to stop myself from moaning…. Let’s hope that it has worked.  I sat outside in the sunshine, listening to the birds, watching my gorgeous fur baby sleep.  I took 10 deep breaths with my eyes closed and reminded myself that the world is my oyster.

Sometimes we have to recognise those sad feelings and then let them go….

I Choose To Be Happy!

Today IS going to be a good day, only I can make that choice.  I can choose to be happy or I can choose to still feel sad. I choose happiness.  Life is so much better when we are smiling.  I have amazing people in my life, I have an amazing life. whats not to love?

I could let all those rubbish health things affect me or I can get on with my life with a huge smile on my face.  I know we are all going to die at some point, and the likelihood is that I will be going a lot sooner than I want too….. not today though so I shall make the rest of my life, the best of my life.

“Happiness is not something ready-made.  It comes from your own actions.” Dalai Lama. I think that says it all….

Thank you for reading this, and if you are having a hard time right now, please know that I send you lots of love and hugs.

 

 

 

 

 

 

 

 

 

 

 

 

“treatable but not curable” cancer.

A Year Ago…. Welcome Sally Stoma

Today I celebrate a whole year of having Sally Stoma. It’s surprising the difference a year can make. Whilst it was the BIGGEST operation I have ever had, it has changed my life so much… and for the better!

This time last year, my operation was underway, it may of been a “routine” operation for my surgeons and the Da Vinci robotic machine, for me it was a life saving operation. Don’t get me wrong, it wasn’t a life or death situation however this operation WOULD improve the quality of my life drastically.

The quality of my life had been impaired by chronic pain, having a pee was painful, and it was constant trips to the toilet.  Constantly waking up in the night, sometimes 5 or 6 times. Each time I woke, the Hubs would use the light on his phone to guide me.  Neither of us had much sleep!

I would sometimes would wonder how I would get through the day, the hours felt so long, and trying to function normally seemed beyond my control!  I tried to stay happy and appreciate the fact that, here I was still alive, despite my prognosis.  I tried to stay positive and I even tried telling myself that I wasn’t in pain.

Think of the worse pain you can.  Like toothache, it was constant, it was niggling, sometimes it waned.  Sometimes it made me cry.  It made me snappy, it took away my patience, it made living my life impossible.

I knew, deep down, that this was the only option I had.  My urologist has already told me that I couldn’t keep having “turbts”.  My bladder was in such a poor state, ulcerations that were not healing and causing me extreme pain.  This was my only option.

I had barely slept, listening to the noise of the fans outside of my window and my anxiety levels were rising with each minute that passed.  The Hubs and the Son has come over to see me, to show their support.  All I wanted to do was cry but not in front of them.  I had to show them that I really believed that this operation WOULD help me. Although at the time I didn’t believe it myself.

This photo was taken just before I left my room and walked down to the operating theatre.  Nerves had set in BIG TIME!

The time had come, I walked down down to the theatre with my porter, who was very jolly and happy, said my goodbyes to my boys.  The one thing that kept me going was that my wonderful Specialist Urology Nurse, Anita had asked to watch the operation, so I knew that I would see her friendly face.

Thank goodness Anita was there. I don’t think I have ever been that scared before.  She hugged me and held my face with her hands whilst the spinal anaesthetic was given.  Oh my, I had no idea that this was coming.  I also had no idea that they would have to do this whilst I was awake and sitting on the edge of the trolley.

I remember saying “Goodnight” as the drugs were given through my cannula… then nothing until I woke up in Intensive Care.

The Hubs and the Son, tackled sorting out the garage, trying to keep their minds off what was happening.  I cannot imagine what those hours felt like for them.

Thanks to my bladder removal, I am now living my best life, I am now “living”.

My quality of life is amazing, I get tired often, but who doesn’t? I am able to go out and meet up with friends.  I can do anything I want to do without being hindered by pain.

I now promote awareness of Bladder Cancer and I take great comfort in supporting those who have yet to have their “Radical Cystectomy“. Yes… it is a HUGE huge operation and recovery can sometimes be slow, 1 step forward, 2 steps backwards but you will get through it.

To all those who are having to make this difficult decision or have just gone through it, my words of advice are…

  • Take your time to heal and rest, listen to what your body is telling you at all times.
  • Don’t rush your recovery, just because Fred was out and about after 2 weeks doesn’t necessarily mean you will be to.
  • Take your painkillers until YOU decide that you don’t need them, don’t be a martyr and stop them too soon, you do not have to suffer and be in pain.
  • Eat little and often, yoghurt, jellies, rice pudding. To be honest you won’t feel like eating much at all, your bowels will be adjusting to all the changes.
  • Be prepared for that first bowel opening.. it feels very weird and you won’t have much control, this does take a while to sort itself out.
  • Be patient.. Rome wasn’t built in a day.. recovering from a major op won’t happen overnight.
  • Be kind to yourself, you WILL get back to being “you”, hang on in there, you HAVE got this!
  • I found having a V shaped pillow helped to support me in bed, and allowed me to sleep in a “sitting up” position, which eased the pain.

 

Bladder Cancer – Signs & Symptoms

If you live in the U.K, you may well of seen the #bloodinpee campaign, which was run by the PHE, Public Health England and the NHS, in July 2018. This is the fourth time that this campaign had been run and the message that they want to get across is that if you see blood in your pee, even if it is only once, then go to your Doctor. Early diagnosis saves lives!

With the tagline of “look before you flush“. Its aim is to get us more aware of our pee and to know what it looks like on a normal day.  Is it more orangey? Does it smell? Does it look like there is blood in there?  Lets be honest, how many of us do check our pee on a daily basis?  Or is that just “yet another” thing we are being told to start checking?

Does your pee look like this? If so, go straight to the Doctors!

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Over 10,000 people each year in the UK, get diagnosed with Bladder Cancer, and taking statistics from Fight Bladder Cancer website, it is the 5th most common cancer within the western world. So why aren’t we talking about this? What is it about pee that makes us embarrassed? Why are we sticking our heads in the ground and not paying attention? I have absolutely no idea.

A few years ago, Bladder Cancer was thought to be “an old man’s disease” as it appeared more predominately in males over 60, however due to lifestyles choices and possible environmental factors, more and more young Men, Women and Children are now being diagnosed.  Lets get on thing clear shall we, Bladder Cancer is a Killer Fact!  Once you are diagnosed, you have a 50% chance of survival, 50%!  Thats like the flip of a coin, are you going to die or are you going to live?

This Cancer costs the NHS, the most amount of money, out of all the cancers, due to its recurrence rates. People with Bladder Cancer are at the highest risk of it returning, and will often be monitored for the rest of their lives.

Women tend to be misdiagnosed, as Doctors often go down the “gynaecological route’ first and then by the time it is found, it has usually spread.  We need to start asking “Could this be Bladder Cancer?” as early diagnosis does indeed save lives! In fact, if you are diagnosed early you will then have an 80% chance of surviving, hence why it is so important to go to your Doctors as soon as you see blood in your pee or have any of the symptoms that I shall write about.

Sometimes there just aren’t any signs or symptoms!

We all need to take responsibility for our health, and not dismiss things. I know we all lead very busy lives, and sometimes it hards to get an Doctors appointment, juggling working and parenthood, however this is your life we are talking about. Work will always be there and to be honest, if a company isn’t that bothered about your health, then I personally, wouldn’t work for them.  You are always replaceable at work, however you are irreplaceable at home!

Signs & Symptoms of Bladder Cancer

Blood in your pee – this can be microscopic, unseen by the human eye, or it could be as red as claret, any blood in your pee needs checking out.

Peeing more frequent/painful peeing – pain is your bodies way of telling you  that something is wrong, pay attention, and even if you feel a bit silly about going to the Doctors, it is always best to get it checked out.

Ongoing UTI’s – if you are constantly getting infections, and they don’t seem to be clearing up, no matter how many antibiotics you are given, ask your Doctor for more tests, ask him/her if they think there is a problem.  A consultant recently told me that they consider 3-4 infections a year, a good reason to do some investigations.

Lower back pain/kidney pain – Again, any pain that you are having, should be checked out.

Tiredness/fatigue – if you have noticed that you are needing more naps just to get through the day, then something isn’t right. It could be a vitamin deficiency, see your Doctor.

Weight loss – Most Doctors use weight loss to indicate a sign of Cancer. This did not happen to me, or to many others I have spoken to. Any weight loss indicates that something isn’t right.

Swelling in the lower legs – Again indicates something isn’t right, usually sweeping happens when the Bladder Cancer has spread.

Bone Pain – If the cancer has spread it is likely that you could get bone pain.

IF YOU HAVE ANY OF THE ABOVE SYMPTOMS, I URGE YOU TO GO TO YOUR DOCTOR AND GET CHECKED OUT! 

http://www.fightbladdercancer.co.uk & wwwbladdercancer.net are both amazing sites, with information on being newly diagnosed, what to expect? And patient experiences.  If you are worried then please contact either site for more information.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dear Bladder Cancer Friends..

Dear Fellow Bladder Cancer  …. well I’m stuck here… don’t want to put “sufferers” or “patients” so, I’m going to put “Friends” ❤️

The struggle is real….

As Bladder cancer Friends, we carry so much on our shoulders.. regardless of what “type”, “grade” or “stage” we are at.  Regardless of it being superficial, muscle invasive or rare, we all are too aware that the reoccurrence rate is HIGH.

Some may think it’s the “Cinderella” of all cancers, that it’s the “best” cancer to have (yes, really got told this), some may even think that it’s “not” a proper cancer.

Well let me educate you, I feel that we, Bladder Cancer Friends are one of the toughest people around, we have courage and strength bursting out of our souls. !

Why do I say this? We live in constant and perpetual fear of a reoccurrence, we face ongoing scans for the rest of our lives. I don’t like the word “warrior” being used for “cancer patients”, as I do not see myself as a “warrior” or “one of cancers little soldiers, I think they are patronising and condescending. For me, a “warrior” is someone who, Wears armour and protects their divine right to survive so I guess when I write it down, like that, in black and white, we ARE WARRIORS!

And it’s not like it’s the most “glamorous” of cancers really is it? It’s our bladders and pee, the things you shouldn’t speak about whilst at the dining table, not a great dinner conversation. But, perhaps that’s where the problem lies? We need to “normalise” it, we need to get others to speak about it and not be “embarrassed” by doing so.

As Bladder cancer Friend,  I bet all your families are aware of the signs, they know what “colour” our pee should be, they know the pain of having to get up 50 gazillion times a night, they know when you are in pain or discomfort, by the tone of your voice or the way you pull faces. I guess, just like my family, they are telling others about “your” journey, in doing so we ARE spreading the word, we ARE doing our bit to educate and warn others, just sometimes it doesn’t feel like I’m doing enough, I don’t know how you feel?

All too often, we have our bladders removed, which let’s face it IS a life changing experience, our bodies are “altered”. And whilst some of us opt for a “bag for life”, some opt for reconstruction, called a “Neo Bladder”.

I can’t tell you, from my experience, what a Neo Bladder is like as, I feel that I chose the easier option, however, from what I have read and heard from other patients is that, it does take while to get used to it. It involves “self catheterisation”, setting your alarm to wake you up in the night, to go to “pee”. What a reminder of what you have just had to go through! What a reminder of your journey with Bladder cancer… and it’s there for the rest of your life!

The alternative doesn’t really bear thinking about does it?, a bag of pee protruding from your tummy, or the self catheterisation every few hours… or death!

Even with a bag, the first few weeks and months are full of 2am leaks, you are still recovering from the operation, and having to deal with so much. All of this and no “help” to get used to your “new” self image.

We do all of this, to have our “normal” lives back. We have to live with the “black cloud of doom” that hangs over us, every single day, we undergo treatments that only give us a 50% survival rate for “normal” bladder cancer!. We live knowing that at any time, this evil and disgusting disease could show its ugly face.

We try for the most, to “get on” with life as we have no other choice. The road seems rocky, with such highs and super lows. We tell ourselves that “we are ok” and if we aren’t ok, then “it’s ok to be NOT ok”. Every twitch, every pain reminds us, that we have cancer. I guess that even at 5years, which is considered “remission” for a lot of cancers, we are aware that it could STILL come back!

We deal with a lot, physically and emotionally, day by day and week by week…  We smile and laugh, determined to make our lives worth living, and to remind ourselves to be grateful that we opened our eyes this morning. All whilst carrying the huge burden of knowing that we may never stay free of our cancer.

What a weight to carry….. so Bladder Cancer Friends…. I salute you, for staying strong, for adjusting well, for never giving up, even when you want too…  and just for being “YOU”

Love and hugs

Anita