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Every science lesson we were told you have to have: apparatus, method and conclusion. Well you’ve had my apparatus – the cancer and my breast, method – surgery, chemotherapy and radiotherapy, I haven’t done my conclusion. so here it is.

It was 7 years ago yesterday that we were told my cancer was more aggressive than originally thought and I needed chemotherapy as well as the surgery and radiotherapy. I do not need to tell you what happened then as I have written about it in this blog. I wanted to share now.

The last few years have been tough, emotionally as well as physically. I am classed now as in remission but the fear of it coming back is always there. Every twinge, every pain. It never goes. But, I am still one of the lucky ones. I only have to have mammograms the same as everyone else, every three years.

The casualties of my cancer; yes there were always going to be causalities, I just wasn’t prepared for some of them. Three years ago my wonderful, beautiful friend had a very short ‘journey’ with her cancer. I wasn’t ready to say goodbye, none of us were. The last thing she said to me was ‘I just want you to be happy’. You may think that is a strange comment, all will be revealed shortly.

I have survivor’s guilt. Yes this is definitely a thing and I live it daily. I feel guilty that I am still here and she isn’t. I feel guilty mine was treatable and hers wasn’t. I feel guilty the pain she went through. I feel guilty when I see her family. I feel guilty for feeling guilty as it isn’t about me.

A few weeks after her diagnosis I had one of my ‘intuitions’. I know I’ve spoken about these before, my youngest wouldn’t be here if I hadn’t acted on one and I wouldn’t be here either.

My intuition this time was my husband wasn’t where he said he was. Very long story short. Rob had been having an affair with one of my very best friends. This started while I was in hospital with neutropenic sepsis.

I could understand this happened one time. Maybe they found comfort with each other while I was so poorly; but it should have stopped, never happen again. Sadly it didn’t and it went on for years.

My other friend was who I told first, she was devastated. In denial like we all were. She was the glue to our friendship circle and now, obviously the dynamics of our friendship group has changed dramatically. If she was still here, things would be different in every single way…

But, everything happens for a reason (I am yet to find the reason for her passing) but three years on and I am very happy. I met a wonderful man whilst I was volunteering at a charity shop in my spare time. Amazing what you can pick up in those places! After a whirlwind romance, we were married last October.

Rob helped me through my cancer and I thank him for that. He and my ex-friend are still together and I do really hope they are happy.

I joined a single friendship group on Facebook and I have met some wonderful people. Have made friendships for life. It is sad some of the people who were there through my cancer who are no longer around but I am grateful they were then. I still have my truly amazing teacher friends, whom I love dearly. They are going nowhere!

Health wise, I’m doing pretty good. I have lost 6 stone, finally a size 10/12 but the best bit is my diabetes levels are at 42. I am still on insulin but wow, they were 118 at their worst!

I have fibromyalgia and an arthritic ankle and I am currently weighing up whether to have the surgery which has been offered, ankle fusion. Less movement but no pain or movement but in constant pain??

Hopefully I will never have to come back and post on here so this is me saying, thank you and goodbye xx

On Thursday it will be three years since I was called back and told there was something looking very suspicious like cancer on my mammogram.  Was another week before the biopsy results came back and I was told that tiny 13mm tumour was an aggressive grade 3 tumour.

Was three years ago Thursday that I was sucked up into that torpedo of hospital appointments, surgery, chemotherapy, radiotherapy, weight gain, medications, pain and more pain.

Three years on and it still feels so raw.  Even more so this year.  Every time I get out the shower I am reminded, of my wonky boobs – the one which had surgery is in the right place, the other one is typical of a 47 year old – so I guess also in the right place!  I know I am very lucky I kept my boob and my surgeon was amazing but there’s still a part of me missing.

Every time I look in the mirror I’m reminded of my cancer.  Maybe my mirrors are magic and I can see inside too but I’m definitely not the same person.  My hair reminds me, my body shape, the gap in my eyebrow which has never grown back.  I do not feel as feminine anymore.  I had hair extensions put in last month to see if that helped.  Probably did for the first few days but then no.  I feel like a flump and a fraud.

I am being told ‘look how far you’ve come’ which is very true but I wish I never had to ‘come’ at all.  I know so many people have not survived this and I do feel very selfish when I feel like this.  Every cancer is unique to that person, some may have the same size tumour and grades etc but all our cancers have our very own DNA so all different.  We all cope and differently.

I am waiting for it to return.  Not one person can tell me it 100% will not. Every twinge, pain, swelling I think is it back?  The other month I got out the shower and noticed a dent in my breast.  WTF? was my first thought.  I saw my breast care nurse that week who said I needed a scan.  I had a dent and my breast tissue was thickened – all the signs of breast cancer.  10 days later I had my scan and it was clear but the worry never goes away.

The kiddies are still a constant challenge.  ADHD, Asperger’s and hormones just do not go together.  I’m hoping, in time, all will calm down, just not in the foreseeable future.

On the plus side, since I last posted I have a new job (started in the new year) which I absolutely love.  I miss my old colleagues but some of them have become life-long friends (whether they want it or not) but I am so lucky that my new colleagues are also now life-long friends.  I do not feel it is a co-incidence that everywhere I work the people are so lovely, I’ve come to the conclusion it must be me – nice people attract nice people haha!

Mumbled on for long enough now.  Don’t forget, check your breast regularly, in the shower, in the bath, in bed, sitting on the loo… Stroke them and play those breasts like a piano!  Most of all, go with your instincts.  Unfortunately for me, what saved me is now my biggest downfall.  Sometimes your mind can go into overdrive!

It was two years ago today the results of my biopsy came back: invasive ductal carcinoma, oestrogen positive and grade 2 (later to be upgraded to a grade 3 and positive blood vessels).  Hopefully just a lumpectomy and radiotherapy.  Obviously I don’t need to remind you, as you’ve all read my blog (haha), that I did indeed need chemotherapy too.

So where am I at now?  A lot can happen in two years. I think I’m now considered as having ‘no active cancer’, I’m not classed as being in remission until I’ve had 5 clear mammograms.  These are done annually – I really wish they were 6 monthly.  I also have access to the Open Clinic, if I have any concerns, changes etc I can just phone and speak to my person.

What I wasn’t told was the paranoia I may have.  It’s like when you are pregnant or just had a baby, everyone wants to tell you their story, their awful birth, how their baby was an angel etc, it’s the same with breast cancer.  Everyone knows someone who has had it and wants to share their story, regardless of the ending.  I don’t know if people think they are being helpful telling you their relation died from it or whether they are just reliving the event?  I have found that the majority – not everyone – of people I have spoken to, who were classed as having breast cancer at a young age, have had it return.

I am now, kind of obsessed, thinking it will come back.  Maybe not straight away, but it will.  No one can tell me it definitely won’t.  Nights are the worse.  That elation when you’ve taken your bra off for the day is now overshadowed by that being the green light for me to check for lumps.  I’m checking as soon as that bra is off, as soon as I’m in bed: arm up, arm down, if I go to the toilet in the night, in the shower; any available opportunity whilst braless.  It makes it worse that, as you may remember, I never had a lump.  Even when the consultants knew where the tumour was, they still couldn’t feel it.  My boob is lumpy now from where they took a part away but at least I now know which lumps are my ‘normal’.

My breast is so painful, really really painful; like I need a plaster to make the pain go away – I wished that worked in adult life!  I am still numb under my arm from surgery, I doubt that will come back now after so long.  Funny, being numb doesn’t stop the pain from getting through!  My breast is a lot smaller too, I was never warned of that.  I had to go to the breast unit earlier this year because of pain, shape and I have indentation.  Apparently, all of the above can be a side effect from radiotherapy.  I’m still learning things and I’m not quite the expert on my own cancer yet!  I say ‘on my own’ because we are all different.  Even if the tumours are identical in definition, mine had my DNA too.

Chemo brain it is a thing and it seems to be still with me all these months after finishing.  I’m not as bad as I was during treatment but I still don’t feel 100% with brain activity.  Maybe I never was at 100%!  I’m reading again and go to monthly quizzes to help improve this – how to train your brain and all that!

Friends, now that’s a word I will use loosely!  People who were really good friends before I was diagnosed have faded.  It has brought some people even closer to me and good, forever friendships have formed.  There are some who were brilliant during treatment, have disappeared now and then I have my old muckers who will always be my friends whether they want to or not!  I know some people have struggled with this, it is not something that just affects the patient.

There are days I seem to walk around like the Pink Panther with an enormous cloud over my head.  I struggle going out socially still.  I hate the way I look, I don’t feel comfortable.  Chemo has exacerbated an underlying condition in my back/hip.  The shock of the cancer has left me with fibromyalgia so I am in a lot of pain.  My medication and lack of cooking has gifted me with lots of extra pounds.  Simple tasks seem to be a huge chore at times yet, in my eyes, no one elses life around me has changed.  I’m sure it has but not really that obvious.  Rob still plays his sport at every given opportunity, still wants to go out socially (and does), doesn’t seem to understand why I don’t want to.  Hopefully it’s a Shallow Hal situation, he doesn’t see what I see when I look in the mirror.  I am still a mother, the children have to be run around here, there and everywhere!  Although my son did accuse me of being a cat recently; sleeping all the time! Like a lot of people think, as soon as treatment has finished, that’s the end of it.  Life back to life before cancer but there will never be that life again because we have had cancer.

This isn’t going to all be a miserable doom and gloom blog.  There are lots of positives, although I always promised to remain truthful on here.  I’m still here seems to be the main one.  I know I’ve come on so much and some people don’t get given that chance.  I survived a whole school year at work, not having to take time off because of this (only shingles and an admission to hospital with suspected heart attack).  My work friends (I did type colleagues but then changed it), have been amazing from day one and still continue to be.  They laugh and cry with me.  Banter all the way haha!

Night sweats and hot flushes seem to have eased, only sweating the same as every other lady over 40 has done during our heat wave!  Last week my friend took me to get measured properly for a bra, in a shop that only sells bras!  I did have a little cry getting my boobs out – just shows how much this has affected me, I’ve never had a problem in the past!

I’m still taking each day at a time.  It’s ok not to be ok every day.  I’ve gone through a lot and I’m here to tell the tale, just sometimes, I’m reminded it wasn’t just a piece of my boob that was taken.

 

 

 

 

 

 

 

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I keep being asked how am I doing and told how much people have enjoyed reading these blogs, (still don’t know if I’m doing them right!) so thought I’d update you. Seems apt today as my time hop on Facebook has just told me this time last year was my 20th and last radiotherapy. Well tomorrow is but my Facebook thinks it’s an hour ahead.

I’m still working, well I show up haha no, I’ll have you know I work very hard. I still love being in the school though it seems by body isn’t as keen. November I came down with shingles. Boy do they hurt, like constant tiny bees stings. I recovered from that (well I think I have), then broke up for Christmas with a bladder infection. Christmas was going to be amazing this year after nearly not making it last year. But alas no, in bed Christmas Day then for the whole of the holidays. Both ears infected, throat infection and chest infection. Finally got down to just coughing 10 times a day and whack, I literally get knocked down with Aussie flu. I’m still coughing and phlegmy (yuck) but on the mend.

Hubby doesn’t seem to understand why I’m always ill. If I’m honest, I’m not enjoying it myself! I don’t know how long my immune system is compromised or if it’s just a coincidence. I’ve read about the delayed fatigue from both chemo and radiotherapy. On top of them I’ve been diagnosed with fibromyalgia and my diabetes makes me tired. I’m impressed I even get up at all!

I’m still in a lot of pain and on way too many drugs which I’d like to come off. I’m having a block put in my back next month. I can’t wait, I have everything crossed it will work. I kneeled down the other day – big mistake. As I attempted to get up it felt like every ligament and nerve ripped apart in my feet! I’m struggling big time with my hands, my thumb is now stuck, the joint clicks and feels like it’s being run over by a steam roller every time I move it. Makes most things very difficult to carry out. I struggle to use my stick as the pressure on the hand is too much, especially with my weight! Name any part of my body and that will no doubt be painful too. I am very fed up with this all. The other day I even googled how many of my tapentadol I could take without finishing me off. Just a few pain free hours would be good. I’m not sure if it’s the letrozle (cancer drug), the fibromyalgia or if I’m just getting old. Probably a combination of all!

That garland of ulcers in my mouth which I used to talk about during chemo is still there. They aren’t as painful, unless I bite them in my sleep, which I do frequently!

I went on a Cancer Care course for younger women recently. Was a very emotional two days as obviously the only subject was cancer. Was nice to know I’m ‘normal’. The paranoia, tiredness etc, it’s all normal! I came away feeling so much better and met some lovely ladies too. My paranoia hasn’t gone about it returning. I still believe it will before I’m 50 but I’m not being all doom and gloom, will cross that bridge if it ever did.

My colonoscopy just showed diverticula disease so that was a relief.

Last Friday I actually put some make-up on and went out with my hubby. Something we’d not done for a while. Was nice feeling semi-human and something I hadn’t felt comfortable doing for a while. I’ve been making him go out on his own so I’m proud of myself.

I’ve dyed my hair so I don’t feel as frumpy anymore. Actually starting to like the curls. Still needs a style but this time last year I hardly had any!

Cancer is still affecting our lives daily. Wish life would go back to how it was before but we can never have our life before cancer. We need to try make it not take over (ok I do), I had it, I’m fixed. We just need to adjust a few things. We have more than some people do.

Tomorrow I’m going out with some of my lovely friends. Something a few months ago I’d never have thought I’d be able to do. I may even plait my hair, just because I can! One day at a time people and remember, life is precious, choose and live it wisely xx

I’m struggling to get motivated today. I’ve been up a couple of times this morning but currently laying in bed, grateful it is Saturday. My boob is so painful today. I feel like there is a band of durecel monkies marching around slamming their cymbals together, not in time! I can’t feel any lumps but it is too painful to touch too much. Does this dark cloud over me ever leave? I’m starting to have empathy for the Pink Panther!

I can’t really remember when I last updated you but these past few months have been challenging. My health is still no where near where it should be but I am loving being back at work. Some how for those few hours, once the children are in, I can switch off and just be me. Children are amazing, I don’t need to explain why I have to sit down for a moment, we make a joke about me having my fan on and moping my sweaty brow. For three hours I’m taken away from the pain and thoughts going around in my head. The people I work with are amazing. I don’t want to call them my colleagues, they are so much more. At times they are my sanctuary. I’ve never had so many conversations lately about bowel habits!

I saw a new doctor in the week. My good friend advised me to write a list. The surgery has a “one problem, one appointment” policy. My list was double sided but I gave it to her so she could choose what was most important. She was so lovely, she read it all and said she thinks it is a global problem, I don’t have 20 different problems, a lot can be put together. The pain with my back/hip can be dealt with at pain management – I’ll update later. She thinks I have an underlying condition which will tick lots of the list. I’ve made an appointment to see her next month to discuss that. This weeks appointment was to talk about gastro. Apparently blood in your stools for 7+ months, pain, bloating, incontinence etc is not really something to ignore. I’ve been referred for a colonoscopy and chasing up the scan. Obviously in my overactive mind, the cancer has come back. No one can tell me it hasn’t. The chances are it’s something minor but it’s the doctors that are getting me paranoid. When I had the head ct the first thing they said was there’s no cancer, I never thought there was but they’ve planted it in my head that they obviously thing it will be back.

My MRI of the spine showed a large bulge at T8/9 and one at L5 which is inpinching on S1 root. He was going to recommend a block to be put in. I’m due to see them again at the end of the month.

I am also having an EGM, think that’s what it’s called, in a couple of weeks. This one is from neuro to check nerve endings.

The family are all good. Well, from what I see of them. I get in from work and go to sleep, Rob wakes me for dinner, sometimes I get up, sometimes I stay in bed until the next morning. I am still in so much pain, on too much medication. I am not depressed but if this is my life, I do not want it. This is not a life. I will go to an appointment a day if I have to (feels like I do already), to make this better.

Life is too precious – today my beautiful friend is being laid to rest. She died suddenly at the beginning of the week. It just proves we do not know what is going on in anyone else’s life, mind. Even the most vocal do not share everything. Always be nice, I say it all the time, it costs nothing. If you have a spare couple of minutes, message that person you’ve been meaning to for days, months, years. You may just make their day.

This evening I saw an old school friend in Tesco (very unlike me as I tend to avoid going to public places as much as I can but Rob was at work and the kids were hungry!), she told me how well I was looking, asked about my treatment and was shocked that my chemo was a year ago and that I’m still in pain. So, I thought as you’d stayed and supported me this last year, it was only fair that I update you.

Obviously quite a lot has happened in the last four months so forgive me if I jump about; you probably know by now, this is my speciality.

Firstly, my annual mammogram in August was normal. I still have pain in my breast and on my scar from the lymph nodes under my arm. It’s so tight and feels bruised. My boob still has a tiny bit of the blue dye left on it and is now lumpy from scar tissue underneath. I’m very lucky I still have my boob and my surgeon was amazing. If it wasn’t for the fading tan from the radiotherapy, the tiny tattoo dot constantly reminding me and me pointing out my nice neat scar around my nipple, you may not even notice I’ve had surgery. When I raise my arm I now have an indented line going from 7 o’ clock to my nipple, that was never there before but, as I always say, I’m one of the lucky ones.

Right that’s enough about my boob and if all my work colleagues could remove the image of my nipple from your mind, that would be great – haha who am I kidding, I’ve shown most of you!

My hip/buttock/back/calf pain. Yep it’s still there, 11 months later. I’ve had X-rays, CT scan, MRI of lower back, pelvis and last week while spine.

I am currently taking two slow release opioids in the morning and three at night. Another three tablets for the nerve endings, two blood pressure tablets, one statin, letrozole (anti-cancer drug), some tablet for my bones and of course my insulin injections (6 a day). Think that’s it, good job B12 injections are only every 10 weeks!

I still have to have help every day to get dressed. I’m gutted my flip-flops are going to have to be put away, socks and boots are a complete no no. I struggle cooking, standing for longer than around 10 minutes makes me cry but sometimes sitting hurts too. I’m in constant pain, every day about a 6/10 but then it does go up to a 10 most days. I have to use my stick when walking outside; at home and School I use walls and tables to get about (that’s touching them not climbing!)

I sweat buckets at just doing the smallest movements. Luckily I have a handy fan on my desk! During the night it’s awful, I have to get up and ‘dry’ myself at least three times a night. When I’m asleep I’ve started getting involuntary movements with my hands, arms and legs. I have no control over them and they move about as if all the bones have disintegrated. My hands start spinning. It is really scary. I’ve nearly fallen out of bed a few times but it stops seconds after it’s woken me up.

I am suffering from severe fatigue. Not tiredness, it’s so much more. I drive with one eye closed at a time, I feel like there are weights on my eye lids, I physically can’t stay awake. Everything is a struggle but I have to keep going for the kiddies. They’ve already suffered so much.

My hair has a lovely curl about it. I can’t do anything with it so I moose it and put an Alice band in. When it’s wet it is like pubes on my head and when the moose has dried out, I’m more like Susan Boyle or the Governess off The Chase!

I really hate the way I look. I used to always match my eyeliner to an item of clothing I would wear but my eyes are constantly streaming so I can’t wear makeup. I feel so frumpy. I’m surrounded by beautiful people, all of whom I love dearly and would be shocked to read this I think.

As you have probably realised, I’ve gone back to work. I was really anxious to start with. Everyone was so excited for my return, I was worried I’d disappoint. My work have been amazing, I am incredibly honoured to work with such wonderful people. When I think about them I have tears in my eyes, they truely have been amazing every step of the way and they are continuing to be.

It has really helped me going back. I’d started just staying in bed all day, feeling sorry for myself which is so unlike me. I’ve put myself down for a few nights out too. I’m already getting a bit anxious because of my appearance but I know everyone will make it ok.

Oh my last MRI. Dr phoned Saturday to say results are back, it’s not cancer but can I come in Monday. I have a large bulging disc at T8/9 and L5 is pinching on S1 root. I think.

My dr sent me to hospital the other week, short version, I ended up having head CT. First thing when results came in, there’s no evidence of cancer. Every time I have a test, the first thing they are looking for, without me even saying anything, is cancer. I am therefore convinced it will come back. Maybe not right now but it will. No one can tell me it won’t.

Rob has been amazing too. Poor man had surgery himself last month. I came home from work, supposed to be looking after him. I fell asleep and woke up to the smell of dinner, ops! When I think I can’t love that man anymore, a new day arrives. I absolutely adore him. Cheesy I know but got to be said!

Ops maybe not leave it so long, I’m starting to realise why they used to call me ‘mumbles ‘ at my old work!

That is what I feel everyone thinks I should be doing and it’s not the lack of mobility which is stopping me!

I had my MRI on my hip, on the day it was booked just a little later in the day (up yours hackers). A few days later I received another appointment for an MRI on my pelvis. I hadn’t received my results by then so was a bit anxious as to why. I called the hospital and no one could tell me why. Obviously I’m panicking thinking they’ve found something horrible and need further investigation.

My appointment with the pain clinic couldn’t come quick enough. Yes they had found something but I am very relieved to say it isn’t the cancer. I have a torn muscle. I need the pelvic MRI as they couldn’t seen the whole muscle and need to know if it’s a complete or partial tear. Once this is done I will be referred to the surgeons. He also mentioned nerve damage but I’d sort of switched off by then at the thought of more surgery! He also said I’m on the right medication, just need to slowly double the dose.

So why am I not jumping for joy? It’s very hard when, even though the news was fantastic, it didn’t take away my pain. I still can’t put my knickers on. I am still sobbing every night as it hurts too much.

We have had half term this week. I’ve not been able to take the children anywhere. Yes I can now get about as I have a car, but I can’t physically do things. I’m not able to walk very far, sitting down on the floor is impossible, swimming a nightmare etc.

Then there’s the financial side. We never lived beyond our means (although some may disagree), but all our outgoing etc were based on two salaries. I’m desperate to get back to work. Not just financially but emotionally too. Unfortunately not possible as I can’t stand for too long.

I had to phone the breast care nurses this week. I’ve had twinges etc for a while but now it feels like I have a needle pushing my breast. Not any old needle, a thick, red hot knitting needle. After my surgery I developed a seroma under my arm. This is a fluid-filled sac that I needed to get drained. It looked like I had an orange under my arm. Well it feels like I have that back. It doesn’t look like I do or feel like there’s one there if you touch it. But my brain is telling me something is there. I have to phone back next week if it continues, which it is.

I also feel I can’t rejoice until I’ve had my first mammogram. Yes I’ve had surgery, chemotherapy and radiotherapy but no one has checked it since last August. I had clear margins after surgery and the amount of chemicals I’ve had will have killed everything – they nearly killed me! But until I have that first clear mammograms I’m still holding back.

My confidence has been knocked completely. I think I was so positive and upbeat in the beginning but now I seem to have taken a U-turn. My hair has grown so much but it looks awful. Not quite a whole curl, just a very fluffy wave. A good look if I was 30 years older! The medication, lack of movement and being unable to stand and cook, have all contributed towards weight gain. So I pretty much hate everything about the way I look and struggle going out. I’m not too bad going to friends’ houses but going out in public with people around I don’t know, makes me very uncomfortable.

The Tamoxifen isn’t my friend. This is the drug I’m on as it blocks estrogen. Even though I’ve had a hysterectomy, your body still produces it and my tumour was estrogen positive. Achy muscles, my lovely garland of ulcers have returned in my mouth but the best bit is permanent thrush. I get the odd week free when the meds kick in but it is no longer funny. I’m seriously considering stoping taking it and it will be the first thing I mention at my next appointment.

Rob is working constantly which means he’s not about much to help. It’s more emotionally I need him but until a game of cricket or golf is involved, he’s working! I can’t really moan, this has put a toll on everyone. We are awaiting an appointment for a scan for him too. After going through this, as soon as you find a lump anywhere it’s only natural to think it’s cancer. So people if we haven’t messaged you lately, don’t take it personally. We have a lot going on right now. I tell Rob pretty much every day, I am not depressed but, if I never woke up I’d be so happy as I’d no longer be in pain.

I am not leaving this on that note, I’ll leave on a positive. I am very excited to receive my new walking aid I’ve ordered. It has a seat so I can stop when I need to and the best bit – it’s a limited edition breast cancer pink!

I thought after my last post I should write some positives.

Last night I received a call asking if I’d seen the troubles on the news? Because of this, they can’t put their patients at risk and my MRI for this morning has been cancelled. Hopefully it will be sorted very soon. She said they will scan people in the evenings to catch up. As I’m still at home and not in the scanner, my lovely hubby is still sound asleep. He doesn’t get many lay-ins so I’m happy about this.

We had to re-arrange our weekend as I was having my MRI. We were supposed to be going to our caravan but now we aren’t, Rob can play cricket and I can sit and watch – think this is more of a positive for Rob but if truth be known, I don’t think he has any intention of coming to the caravan and missing a game!

The deathly silence at home through the week, at times extremely lonely, is also very welcoming. I love nothing more than to listen to my thoughts whilst playing Candy Crush. I’m on level 1721 which is a bit disturbing, think I need to start reading again!

Although I’m still using ‘chemo has killed a lot of my brain cells’, I am more educated medically. I never knew anything about cancer or what people do through.

As I can no longer have a bath, the statistics of me drowning in it have reduced dramatically!

The weight I’m putting on due to lack of exercise, medication, binge eating etc is also making me less of a target for kidnappers.

Insomnia and pain means get to hear the beautiful chirping of the happy little birds first thing in the mornings – where are all those cats that were fighting during the night? Haha only joking 🙃

Not being able to work means I can do the school run most days. Well more of a drive-by as it hurts to walk up the playground but I do actually stop the car and not just slow down to let her out.

My salt and pepper David Cassidy hair style is saving me a fortune in trips to the hair dressers, dyes, hair products etc. Although I did try and put some gel on it the other day, just to see what it looked like. Wet look, fluffy, tight pubes on my head was not the look I was going for 😳

The best thing about all this is you. I’m humbled by people taking time out of their busy days to message me. Sometimes to see how I am or just to say hi. Liking my status on Facebook tells me you’re thinking of me and that makes me happy. The quality time I’m spending with some wonderful, special people is just priceless xxx

Hopefully my next update will be another positive with the results of my MRI.

P.s. Hubby is still sleeping 😊

Was about to type wow regarding how long ago since I updated this but I think I’ve started the last two that way and although it’s always good to be consistent, this isn’t one of those moments!

It has been two months since my last update. Most weeks I think I will write on here but then I remember I have a hospital appointment coming up so I’ll wait for that and then update you all with what they have said – but it’s been nothing worth mentioning!

12 weeks after radiotherapy is the ‘normal’ time to go for your ‘what happens next’ appointment with oncology.  My oncologist wanted to see me before then because of the ongoing pain in my hip (still ongoing). So six weeks after my radiotherapy finished I went to see my oncologist.

Sorry if I jump about, this all makes sense in my head.  Just before I went to see my oncologist I received my referral for rheumatology.  My oncologist wanted me to see him because of said pain.  He thought my pain was bursitis.  From my understanding (that covers me if I get this completely wrong), we have fluid filled sacks which cushion our joints (bursas) but sometimes these get inflamed which leads to bursitis. He was very confident and gave me a steroid injection in my hip and said I would be pain free by the weekend. Wrong.

So off I went to see my oncologist.  As I was still in so much pain I was hoping he would refer me for the MRI which he was hoping my rheumatologist would send me for – although why he didn’t just send me in January when he suggested it I don’t know.  We walked in and it wasn’t him, it was his registrar.  I because all dizzy inside and my legs were wobbling.  I was aware my oncologist was leaving any day.  I knew him, we had a good relationship especially during my time in hospital over Christmas.  He was so caring.  The registrar did her job, she was nice too but she told me I would be referred into the care of the breast care nurse specialist.  This is protocol.  I just burst into tears.  Didn’t have a clue where they came from!  She said she didn’t have to and I could see them anytime but I wanted to see my oncologist, he knew me, understood me, had time for me.  I couldn’t stop sobbing, was feeling really pathetic as I hadn’t really cried up until that time.  She examined my breast, said it looked good and I’m to come back in three months to see the breast care nurse.  No mention of my hip.  I know I should have said something but I was still numb.

A few weeks later I went back to rheumatology.  Another stronger steroid injection given into my hip.  I will be pain free within a couple of days. Wrong again.

I went to my doctor after and explained it all to her.  She referred me for the MRI, or so I thought.  It was an urgent referral so I was seen within four weeks.  The results came through within 24 hours.  I was so impressed with the service I received and the speed at which my results came back.  My heart was racing when I saw my doctors number come up on the display.  I’ll finally know what the problem is.  Apparently there is nothing wrong with my lumbar spine.  I have a herniated disc but most people do.  Obviously there is nothing wrong with my lumbar spine as it isn’t there that I have the problem!  I was so angry my doctor had written lumbar spine on the form and not hip.

Three weeks ago I went back to rheumatology.  I took a copy of the MRI of my lumbar spine.  He doesn’t think the slipped disc is causing the pain in my hip and now agrees with my oncologist and has sent me for an MRI of my hip to rule out that the cancer hasn’t spread there.  He prescribed me some slow-release morphine tablets to take in the meantime.  I’ve never had to show ID before when collecting a prescription, this must be the hard stuff!

I also went back to my GP who referred me for physio.  A few weeks ago I received a letter saying my GP had referred me for physio but they’ve triaged my referral and want me to see an orthopaedic specialist first.  I did this yesterday.  He too has said the herniated disc isn’t causing my pain and I really need the MRI to rule out it isn’t cancer.

So here we are today.  I am in so much pain still.  I need to phone my occupational health lady to see about getting the bathroom converted into a wet room.  I’ve been putting this off but after getting stuck in the bath last night I think it’s time to admit defeat.  I walk with a stick.  I need help to put my underwear on.  I’m desperate to return to work but I’m unable to stand up for very long so that’s a non-starter.  I feel like I’m trying to move forward but keep being pinged back.

It’s so hard to remain positive all the time when you are hurting so much.  I feel like I am broken and even though the light at the end is starting to shine, it feels a long way off.  I have the niggly pain back in my breast which lead me to getting the mammogram ten months ago.  I hate to admit it, but I am now thinking I haven’t got as long left as I originally thought.  I’m very tearful at the moment too.  All those months of being positive – some may even say in denial, have finally caught up on me.

I have my MRI on Saturday morning.  I will not get the results until my pain clinic on 22nd May but I’m hoping my next blog will be more positive than this one but I did promise you all I would be honest.

 

Wow it’s been over a month since I last ‘blogged’, no wonder so many are asking how I am!

I am good but tired, really, really tired. Exhausted actually but luckily for me I don’t have to do anything. I’m typing this from my sunbed in Gran Canaria (very thoughtful and much appreciated Christmas present).

We thought Gran Canaria would be a great choice. Although the closest of the Canary Islands to Africa (blog with facts haha), the temperature this week was supposed to be 21-25 degrees – perfect. There is in fact a heatwave this week and temperatures are between 30-40 degrees! Don’t panic, I have a pink cap, factor 50 and an umbrella!

As we’ve come away without the kiddies (one of the advantages of a broken home), we went for an adults only hotel. Oh my goodness I think Thomsons have teamed up with Saga! Still at least I don’t look out of place with my stick but I do think there’s an age where you should leave the bikinis at home – even I didn’t bring one! I’m not even going to talk about the topless OAPs although I do want to tell them to put it back on for different reasons than others may be telling them. Wish I had the confidence, even though I wouldn’t now.

This morning we went on a boat to apparently see the dolphins. I wasn’t quite sure. After a knickerbocker glory the a boat trip whilst in Cornwall as a child wasn’t very successful. I’ve always been a bit careful but had a successful boat trip in Turkey a few years back, surely this would be as calm as there. Wrong.

We sat right at the front as I thought we’d get a better view and tan. The sun was blazing on us and my friend, the breeze, would elegantly blow over me. The only thing we got was drenched. I thought it was hilarious as Rob was on the edge, he seemed to get wetter than me. Eventually he had enough and moved. Just in time as his seat became home to a puddle. Never laugh at your husband getting soaked, karma will come.

Apparently the dolphins weren’t coming out to play, I know this because I heard it over the tannoy. I didn’t know this from watching as I had my head in a mini bin liner throwing up for what seemed like an eternity sitting in the puddle of a Rob’s seat as I tried to make it to the toilet. Dolphins didn’tcome, karma did! Never again!

We are going home tomorrow. Back to doctor and hospital appointments. Only three next week. I’m hoping rheumatology will help this week. He didn’t last time. The pain in my hip is still excruciating and I’m unable to stand for very long. The nice lady at occupational health has loaned me two sticks and a panel to go over the bath to sit on. Rob refused the extra stair rail, I can carry on crawling up the stairs!

My right boob is still very brown after the radiotherapy. Was getting a little sore underneath but I was very good with my cream. It’s peeling off in its own time.

I’d better go in and get ready for this evening. Hopefully Rob won’t fall asleep in the middle of tonight’s show – there wasn’t two rugby matches on at the sports bar today which he had to watch but there were two football matches, equally as important! Take care xx