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Monthly Archives: March 2011

Rectal Cancer doesn’t just happen to old people

Today we meet LIsa who had Rectal Cancer in her 30’s which spread to other areas.  Now 40 years she shares her story with us.  Lisa’s blog can be found at http://loopy-cancer.blogspot.com/

I turned 40 in October 2010.  It wasn’t quite the celebration it was meant to be.  My best friend (who I still haven’t quite forgiven for moving to France) decided we’d spend about a year with various trips to Paris, New York celebrating our 40th birthdays which are 3 months apart.
 
However after 3 years of having no evidence of disease on my 6 monthly scans, multiple lung tumours and 2 liver tumours showed up.  I wasn’t entirely shocked, I “knew” the cancer hadn’t gone and was making its presence known again.  I got the news on 28th July 2010 and continued to work and “be positive” and carry on my life as normally as I could until, I think reality set in and I  was crying every day whenever I was alone at work.
 
Following a tearful telephone call one night in September, with the promise of my mortgage paid for 3 months, my mum persuaded me to go to the GP and take time off sick to get my head round it all.  By this time my daughter who lived with me (my son with his dad) had gone to live with her dad too.  Essentially we were exhausted with the travel arrangements getting her to college down to 35 miles away – her dad lives half the distance away.  They are 16 and 18 so they were old enough to understand what was happening when I was initially diagnosed but my son for reasons I’ll never know for sure found it too much and after a particularly scary time in hospital for another operation hadn’t seen me for over 2 years.  Nothing is ever straightforward, but to think I may never see my son again, to die when he is so vulnerable because of teenage anger or confusion was my biggest fear.  More for what it would do to him as an adult if he didn’t see me before it was too late.
 
Blogging wasn’t something I ever did until I got ill.  For some reason I started to record what was happening back in the autumn of 2006 when the pain started, followed by bleeding and 12 daily trips to the toilet.  It started on Myspace to keep friends and family up to date without everyone having to ring me or each other.  It seemed like the easiest way to tell everyone where I was at, how I felt without blubbing down the phone and I know to at least 3 people who have told me so, it has been a helpful source of information and helped other patients to know they are not alone.  Colorectal cancer is a most humiliating distressing cancer.
 
My life now and always will revolve around being near a toilet, being careful what I eat.  It will now always include pain on differing scales but more than anything it is full of love.  Love for my children, my family and those few close friends who insist on living miles away.  Love from all of those people and from strangers too.  I do not believe in any traditional god, but I finally found a piece that was missing from my life.  An acceptance that each day will bring what it brings and I have absolute power to decide how I react to it.  I choose to smile at the birds and the sunshine, to laugh whenever possible and to cry only when I really, really have to.  As I said to our lovely Bec when she knew she may only have a few months left, NEVER cry for more than 3 days in a row, anything more is just wallowing and a waste.

To follow Lisa’s story visit her blog at http://loopy-cancer.blogspot.com/

 
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Posted by on March 30, 2011 in Cancer

 

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The first time I mentioned Cancer

Today we launch our support section on the blog with a guest post from a lovely lady called Carole who was diagnosed with Rectal Cancer in her 40’s.  Carole’s blog can be found at  http://caroleandcancer.blogspot.com

I remember clearly the first time I mentioned cancer. It was back in January 2010 when I was sitting chatting with my friend Jacqui, moaning about feeling under the weather for months now, always tired, headaches and just generally lacking energy. I then told her I also had developed ‘piles’ (hemorrhoids) now, then joking said ‘Don’t worry, I’ve convinced myself I have bowel cancer now’.

We both laughed at my latest dramatic theory and moved on with the conversation.

Deep down though I had been concerned about the slight blood loss I’d recently noticed on tissue after a bowel movement. Concerned enough that I’d googled the symptoms of both hemorrhoids AND bowel cancer – but after reading up I DEFINITELY had the symptoms for hemorrhoids not cancer.  So, I put it to the back of my mind and got on with life – working, shopping, cooking, cleaning, washing, ironing, bringing up our son, organising my husband and all the normal day-to-day stuff that takes up 99.9% of our time.

By mid March I felt even more tired and drained than I had back in January and decided to take a week off work to rest and recover completely.  It made no difference and after spending my week off sleeping constantly I felt even worse. I then took myself off to the GP with my vague symptoms of extreme tiredness, constant headaches, achy joints, dull pain in my back and slight blood loss.  The GP felt I was probably depressed! I did ask if the blood loss could be anything to worry about and was told ‘No, you are the wrong age, wrong weight, wrong diet and wrong symptoms for anything too serious’. She prescribed some suppositories and cream and a certificate to take a further two weeks off work to recover.

Fast forward two weeks and I’m back in the surgery asking again for help to sort myself out.  Once again the initial suggestion is that I’m depressed (I think it’s worth me mentioning that I’ve never suffered with depression in the past).  This time though I insist that the GP – a locum this time – go through each of my symptoms with me and try to find an answer.

Luckily for me she agreed to do this. When we got to the blood issue she asked if I’d been examined previously and when she heard I hadn’t she then asked me the dreaded question

‘Do you mind if I have a look?’

Truthfully I did mind but I needed to know now that it really WAS piles and nothing more sinister.

So examination takes place, she’s chatty initially and putting me at ease then suddenly goes completely silent…it’s that sort of silence where you just ‘know’ something is not right. She asked me to get dressed and said we’d have a little chat.

Anyway the little chat turns out to be her telling me that she is emailing the hospital right now and asking for me to be seen urgently as there is a lump in the rectum that she is not happy with – she stresses that it’s probably nothing to worry about, it is rarely serious but just to be on the safe side…….

Just a week later I’m seen by a surgeon at my local hospital, a biopsy is taken and the words ‘probably a malignant tumour’ are mentioned for the first time.  OMG! I’m the wrong age, wrong weight, wrong diet, wrong symptoms and I have ‘probably’ a malignant tumour….. in my bum! OMG!

Two weeks later I return for the biopsy report to be told I definitely have malignant Rectal cancer, Stage 3, a tumour the size of a walnut has made it’s home in my bum!   I’m totally calm as he tells me all this – only because I’ve prepared myself over the past two weeks to hear the words ‘You have cancer’

Now all I really want to know is: has it spread anywhere else and how painful will it be when you cut it out? Yes, I really was that uninformed!  

My surgeon looks very uncomfortable at this point and I know there is something to come that I’m not going to like….but have no idea of what it is. He takes my hand, looks into my eyes and says ‘The good news is that as far as we can tell there is no spread to other organs but….(long pause)…. unfortunately Carole, because of the location of the tumour I have no choice other than to remove the whole rectal area, including the anus, rectum and approximately 15 inches of colon and this will result in a permanent colostomy. At this point I fall apart. This simply CANNOT be happening to me….but of course, it is. I didn’t even know it was possible to remove all of this and leave a person alive!

The hardest part was finding the right way to tell my youngest son. He’s 11 yrs old and has Aspergers therefore I knew I had to be careful with my choice of words (and my emotional state) when talking to him for the first time.

He sat there with quiet tears rolling down his face and said

“Just promise me mummy that you won’t die”

Damn! Not something I could do….I explained that I couldn’t make him that promise BUT assured him that I had a good medical team fighting for me and I would do my best not to die, however I couldn’t promise.  He replied “Good! Because if you’d said ‘yes’ I would have known you were lying.  No-one can make that promise with cancer, no-one can know for sure and if you’d said I promise then I would have known that you were lying and I wouldn’t have been able to trust you ever again”

I go through a massive range of emotions over the next few months whilst having Chemoradiation in order to try to shrink the tumour before surgery. At this point I’m still considering not having the surgery, I can’t find a way forward to seeing how I can live with a permanent colostomy…oddly enough, I’m not scared of the cancer, I’m scared of the bag!  They tell me that if I refuse the surgery they will still provide me with excellent palliative care. That’s a shock – yet I still consider not having the surgery. I ask how long will I live without the surgery, they tell me between 12 and 18 months!

Damn! That’s not enough time – I need to get my youngest through Secondary School first….

My emotions are all over the place, I now cry at the slightest thing, it’s not the idea of dying that is making me emotional just the thought of my life with a ‘bag’…. ‘Bags’ are for old ladies not me, I was 49 yrs old with an 11 yr old son there was no way I could do this.

My son put things into perspective for me when he climbed into bed with me a few weeks before the (dreaded) surgery and said

‘Mummy, are you still upset about the bag now?’…

I lied and told him no, I’d sort of got my head around it all now.

He replied ‘Good, because no-one cares about the stupid bag – we just need you to be alive.’

At this point I realised that I would do the surgery, I would live with the bag and I would stop being selfish and thinking about only myself. He needed me to be here for as long as I can be.  A decision was made based on that remark simply because it put things into perspective.

I finally had my surgery in November 2010, 7 months after diagnosis. For the first month I cried every day about the whole situation I now found myself in…I hated the stoma, hated the bag system, hated how I looked, cried every time I had to change the bag.  Then a month later I moved forward, I made a decision to accept it. It wasn’t going anywhere, it was permanent and I had a choice to either continue to cry over it or just get on with it.  Now, 4 months post surgery I can honestly say that the bag is no longer an issue.

The outcome of my surgery was that ‘we think we got it all but it’s impossible to know for sure’…which kind of leaves you in limbo land. I refused post operative Chemotherapy as the statistics showed only a minimal percentage improvement in recurrence odds (3-5%).   Now I’m playing a waiting game, my first post operative check up is in June this year and I can only say I hope they got it all – but what will be, will be.

I wanted to tell my story because I want to raise awareness of Rectal cancer in the UNDER 60’s.   Currently they screen the 60+ age group, frequently people under this age are told ‘nothing to worry about, you’re too young’ but the truth can be very different. Since my diagnosis I’ve come across other people in their 40’s and even some in their 30’s who have been diagnosed.  I was told that my tumour had been growing for at least 8 years before it was discovered. That means I was probably around 40 yrs old when it first started – screening me at 60 would simply have been way too late as I wouldn’t have made it to that age.

So my message is if you have ANY symptoms that are not right such as unexplained weight loss, extreme tiredness, ongoing loss of appetite, joint pain, constant headaches, temperature fluctuations & blood loss then you must INSIST on being checked. Chances are it will be ‘piles’ but once in a while it’s just not that simple.  Don’t leave it to chance, don’t self diagnose via google, don’t wait until you’ve got ALL the symptoms, don’t die of embarrassment – if you see any blood after a bowel movement GO TO THE GP AND INSIST YOU ARE CHECKED OVER.

For Carole’s full story please visit her blog  http://caroleandcancer.blogspot.com

 
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Posted by on March 28, 2011 in Cancer

 

Supporting you in times of need

Have you ever surfed the net trying to find an answer to your problems or a diagnosis for your symptoms?  Maybe you’ve received a diagnosis and you go searching for more information.  There is so much information out there some good, some bad, but what I always find is I click on so many links where the information is of poor quality and before I know it I’ve spent 4 hours and am no further forward!

So the idea for a charity/support section on this blog was born.  Here we list charities and blogs (real life stories) that we hope you will find useful. Topics from developmental conditions to terminal illnesses.  Each category will be supported by guest posts each linked, as usual, to their own blog or webpage.

I’m sure you’ll find the posts interesting and if you can recommend any websites or blogs you have found useful then please do get in touch.

 
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Posted by on March 28, 2011 in Autism, Cancer, Charities, Dyslexia

 

A working mums perspective

Recently we’ve had a few guest posts from mums who stay at home.  Staying at home is a tough job and probably because it’s not seen as a “job” or “work” and you don’t get paid for it either.  Sometimes SAHM’s can even be undermined by choosing to stay at home to be with the children.  However is going out to work, as a mum, any easier?  Yes, you get paid, yes you get a break from the kids so can maybe deal better with their tantrums better etc, but you also have the time away from the children to contend with and also still do all the normal household chores/school runs etc.  So, sometimes working full time comes with very similar problems to being a SAHM.  Today Pam Heap, an architect who works full time shares her experiences of being a mum who works full time…

PAM HEAP – MY DAY FRIDAY 25TH MARCH

Was celebrating the brother in laws birthday last night (with all the family & children included) so head was a wee bit sore when was awoken by CA standing at her room “gate” at 6am shouting daddeeee, mummeeee. Oh dear!

Husband gets up & gets ready & takes CA downstairs (in her pyjamas). I decide to get up as I also have to get to work. Shower & make up & dress (shakily) then downstairs to join the fun. Husband leaves, I decide it might be a good idea to dress CA. Back upstairs & let her choose some clothes. She chooses a dress that is way too big but refuses to take it off so as usual I just go with it, no big deal after all.

3 hours have just disappeared – Gran & Grandpa are due any minute to carry out the usual Friday childcare so I have a 10 minute battle to convince CA we can take the peppa pig DVD downstairs & watch it there. She calculates this as maybe being a good idea so 5 minutes later she agrees.

Put DVD on & nip to loo & then Gran & Grandpa appear. Aaaah, then I realise I have 5 min to get to the 9:15am doctors appointment I arranged on Monday so mad dash out the door after begging for CA to give mummy a kiss before I leave. 20 minutes later Doctor tells me I have Sinusitis. Oh the joys. Sore head & congestion require steroid nasal drops & may take a month to clear. How wonderful….!

Drive to first Site Visit of the day & meet the Site Agent & Building Control officer & have a walk round the site. Then meet the MD of the Construction Company for a coffee & a catch up. Then leave that site to go straight to inspect progress at another two, when business partner calls to say we should go for lunch. Finally get into City Centre at 1pm (there goes another 4 hours) & have a nice chicken burger in Ad-lib. Mmmmmm

Back to work & deal with the usual nonsense. Men all puffing their feathers at each other & me trying to sort out exactly what needs done in amongst all the palava. Before I know it it’s 4:45pm & I decide to write this blog.

Am supposed to be going out tonight, it was arranged months ago. Meeting up with Uni friends, who I haven’t seen for a few years, in Edinburgh. As husband has a golf dinner CA is staying over at Gran & Grandpa’s with her cousins, but as the day goes on realise still have sore (Sinusitis) head & beginning to feel like the thought of an empty house is much more appealing that a train ride to Edinburgh & back for a few gin & tonics…. but I still haven’t finished the daily tasks, or updated the business financial appraisal or prepared next years annual forecast or done anything that has anything to do with being an Architect, apart from deciding what emails to send…. What’s really important though? I also haven’t bought bread, or anything for tea, and I realise I’ve got to go to a “Hen Day” tomorrow so won’t see CA until at least Sunday morning. I know I’m supposed to have some down time & some relaxation time but whenever I get the chance to do so, why do I feel so guilty? I love my job, and working Part Time is not something I would even consider but I do feel like I’m missing out sometimes, even more so when I have a social event to go to.

Pam’s company can be found at http://www.starkpartnership.com/ and http://www.starkplansonline.com/ and also on facebook.

 
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Posted by on March 27, 2011 in Parenting

 

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Donna’s Pregnancy Diary

Do you remember being pregnant?  I do! My children are 5 & 4 years and I still clearly remember both my pregnancies.  First time round I felt so sick.  Some days I dragged myself in to work at 1.00pm only for them to take one look at me and send me home again.  Imagine your worst ever hangover, triple it and you’re almost there.  I could barely lift my head off the pillow.  The bizarre thing was, I was never actually physically sick. 

Second time round I felt really sick, but this time I WAS actually physically sick – the great thing about that is I then felt better afterwards for, oooh about 10 mins!  Ok, I’ll be honest,  the really great thing about actually being sick was I didn’t put on as much cake weight as I did first time round and stayed in my real clothes for most of my pregnancy (stretchy long jumpers were the trend then;-)  Whereas first time round I was in my maternity clothes by 12 weeks.  Saying that I was desperate to wear maternity clothes first time round (WHY????), by second time I realised how useless the maternity jeans were and really DIDN’T want to wear them if I could avoid them.

Oh I could go on and on about my pregnancies needless to say I won’t be putting myself through another one, but Donna from Little Lilypad Co is currently 3 months pregnant and has offered to write a pregnancy diary for the next 6 months.  Today we find out a bit about her in her first post…

Donna’s Pregnancy Diary

Without sounding like I am at a therapy group, my name is Donna, I am pregnant with my second child, I work part-time while also running the gorgeous (I am obviously biased) Little Lilypad Co. After working my way up from office junior, through buying, sales, HR and anything else I could train in, I found myself working directly with the Chairman of the Company.  Children had never really been part of my plan. Then something changed, I can’t really tell you what it was but I started feeling more comfortable around children and thinking about having my own.  So one month after deciding, I was pregnant with my daughter, now 6 years.  At first I was convinced I could be superwoman and return to work full-time, in my size 10 clothes, child in nursery and everyone happy but no one or nothing can actually prepare you for the arrival of a child and the effect it will have on you emotionally!!

So needless to say, I didn’t return to work full-time but negotiated a part-time arrangement and called in a number of favours from the family for my childcare! When my daughter was 6 months old, to everyone’s amazement, I expressed that I (even with the high heels and manicured nails) wanted another baby. Unfortunately for a multitude of reasons this didn’t happen. I experienced heartache mixed with joy and envy as so many of my friends fell pregnant with more and more children. Don’t get me wrong, my daughter was perfect in every way but as there is only 15 months between my brother and I, I had envisaged that she would have a sibling quite close.  The months turned into years and at every birthday, my daughter would ask for a baby sister (I will come back to the gender debate at a later time) and I became resigned to the fact that this may never actually happen.

So I threw myself into something else and set up an online boutique, whilst still working part-time in my day job. We all love gorgeous gifts and I am guilty of spending a lot of time and money on an ideal present! When I had my daughter and subsequently found myself in a baby boom with my friends, I started looking everywhere to find wonderful different little gifts for their babies, children and other family members. Not the usual high street pressies but beautiful, unique, handmade and maybe even unusually old-fashioned gifts that have been painted, glued and lovingly crafted …by real people! This is actually a more difficult task than it seems, believe me, especially when my shopping habits are well known, so Little Lilypad Co was born, selling beautiful products from our amazing partners.

It soon turned into a family affair, with my daughter helping to choose gorgeous gifts, all the family getting involved with running events and promotion and it essentially became my second baby. You can therefore imagine my delight to find out at the beginning of the year that I was finally pregnant with the much awaited second baby. We were over-joyed and used most of our restraint to stop ourselves from shouting it from the rooftops, although I am sure the relentless morning sickness and exhaustion may have stopped any *actual* rooftop climbing!! Being pregnant Second time around while being six years older and having another little person to look after has definitely made the last 3 months different to the first time I was pregnant. I can’t come home from work and have a lie down and can’t lie in at the weekends, but the excitement on my daughters face when I told her she was going to be a big sister was absolutely worth it.

So I have agreed to do a pregnancy blog for Mums That Work about running a business from home, working, being a mom and being pregnant. That can’t be too hard can it?? In between our blog posts, you can find us on twitter @littlelilypadco on facebook https://www.facebook.com/littlelilypadco or simply hop over to see our ramblings on our blog at www.littlelilypad.co.uk

Talk soon

Donna xx

 
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Posted by on March 23, 2011 in Uncategorized

 

Win a “mums skin treat” from Green People for you and your mum!

Take a look at our competitions page to win a fantastic prize from green People worth £60 this mothers Day

 
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Posted by on March 21, 2011 in Competitions

 

Two Tribes

Tonight I tuned in to the last 10 mins of the channel 4 tv programme “One born every minute” just in time to see a young girl (I say young she could have been in her mid 20’s she just looked years younger than me!) give birth to her first child.  The Dad was overwhelmed with emotion which brought tears to my eyes and took me back to my first labour nearly 6 years ago.  How my life has changed so much since then and in particular how my friendships have all changed.

My bestest friends now are all people whom I have met since becoming a mum.  We shared all the “first time mum” worries, concerns, chats about the colour and consistency of poo.  We turned up to toddler groups covered in baby sick and envied those mums who could always present themselves so well.  I still can’t even do the school run in my high heels let alone carry a baby car seat and changing bag in the pouring rain, 300 yards and up a flight of stairs to the toddler group.

The thing about having a baby is it not only changes your actual life with its physical presence but everything else changes too.  Your old, childless friends don’t actually get what life is like for you now.  In fact before having children I didn’t get what it was like to be a “mum”.  So we have two sets of friends – our mummy friends and our childless friends.  Today Donna & Elizabeth at www.mummycentral.com/ describe exactly this in their guest blog about Two Tribes…

 

Guest Post by Mummy Central: TWO TRIBES

What is it about babies that they can be such little icebreakers when it comes to forming new friendships?
And sledgehammers for placing cracks in old ones?
Like it or not, motherhood is a new chapter in your life when a lot changes.

You may have sat over cappuccinos with your galpals, patting your bump and swearing on your Prada loafers that having a baby wouldn’t change you.
A mere 12 months later and you’ll hardly recognise yourself, smelling more of sour milk than Stella McCartney.
But you’ll suddenly become part of a whole new club of women with shared experiences, making friends with people you might never have entertained in your life BC (before children).

Who cares if she likes jazz and you’re more of an RnB girl? All of a sudden, the redhead at mums and toddlers will bond with you over shared stories of sleepless nights, weaning worries, and eventual potty training fiascos.
The measuring stick you used in sizing up possible friendships will go out of the window.
Meanwhile, unless your old friends are having babies around the same time, you may find some former chums become acquaintances, who eventually drift away.

Much as they try, they’ll never understand why normal programming fails to resume, once baby is out into the world and then off the breast.
Why can’t you come on an all-night bender and just leave junior with his Dad?
If they are without children, and especially if they don’t want any, they will never understand.
And you may find yourself walking a tightrope between the two tribes, in order to fit in with each distinct group.
It’s worth noting the baby years will pass, and the chasm of differences between yourself and your non-parent pals will close.
So, if they’re willing to hang on in there, it’s not always necessary to give up on these good friendships.
But perhaps you will have to become chameleon-like in your conversation when you’re with them, adapting the tone to suit.
Here’s our guide to what to say – and what to avoid – when chatting to your tribal sisters.

The mummy tribe

Don’t say

“I truly believe my baby is better than yours.”

“But you’re doing it all wrong.”

“I don’t know what the fuss is about – motherhood’s a doddle.”

“Do you think baby drool on your top is a good fashion statement?”

“Stop whining woman, for God’s sake.”
Do say

“I find it hard to cope too sometimes.”

“Your best is good enough.”

“It’s so good to have a grown-up to talk to.”

“I’m happy to swap tips on weaning/routines/bedtime routines.”

“I know you’re tired – but you look great.”

The firm tummy tribe
Don’t say

“And here’s one of junior eating his breakfast, and a picture of him filling his nappy, and here he is pulling a funny face……”

“Life was so shallow and meaningless before I became a mother.”

“Why are you so late? Don’t you know junior’s routine is very important?”

“Who wants a cuddle wuddle with my cutesy wutesy baby waby?”

“And another interesting fact about baby poo is….”
Do say

“So tell me all the gossip of what’s going on in your life.”

“I’d love to hear about your new car/holiday/boyfriend.”

“I’ll get a babysitter and we’ll catch up for a long lunch very soon” (and then do it)

“Motherhood is great – but it has to be your choice.”

“Of course my life’s different now, but I’ve always got time for you.”

Donna & Elizabeth can be found at http://www.mummycentral.com/

 
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Posted by on March 21, 2011 in Parenting, SAHM, Working

 

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