Sunday 16 December 2012

All Clear and Tweet ups

It has actually happened a whole year with no surgery! First year in seven and no surgery. Still cant quite believe it but my last CT shows no evidence of change which also means second year in seven NO CANCER. It appears I am winning the battle so do one cancer consider yourself banished!!
Okay Im not naive enough to think there might be a chance it could return but the fact that hosp now only want to scan twice a year not four times a year gives me hope.

Moving on I know in my last post I spoke a lot about the support on twitter from people that may never meet. However on the 1st of Dec there was a tweet up which I hope will lead to more!! It was amazing to meet up with these wonderful people to put not only a face but a voice to a tweet! It was a wonderful,awesome,brilliant day. Some of us met for a coffee at the Royal Festival hall before moving on to meet the rest of our party at a lovely Italian restaurant called Vapiano.
The food was good,more importantly the company was excellent. Laughter and conversation flowed as though we had been friends for years. It did occur to me that other customers might have thought that some of us may have been carers for others because of the noise but the table of santas next to us seemed to be getting stranger looks. There was almost an incident involving a basil plant but I wont dwell on that.
We had a wander down Regent St.,a quick visit to the Apple store before visiting the Nespresso Boutique where there was nearly another incident! A member of staff accidently head butted one of our party, luckily our personal lawyer rushed in to work out damages and we were able to queue jump to a coffee sample! It also seems that Jedward has a third member working in the store!
It took us a while to find a pub with enough room for us all,being a saturday and pre-theatre time, but we did. It was a day I will remember for a long time :-)

For me this month has been mostly highs but there has been a few lows thrown in. Being diagnosed with osteo-arthritis has added a few lows. Having to finally admit getting in and out of bath was difficult but I now have a bath chair which helps but isnt ideal. I've also been given a walking stick for those wobbly days which again I'm not happy about!

Something strange happened aswell. Last week I was invited to a survivorship group at the Macmillan centre at Kings.The first two talks about exercise and diet were interesting. Then came a talk about the emotional impact of cancer and to my suprise I couldnt stop the tears. I dont know what triggered it I thought I had got past all the hurdles but obviously I havnt.
Maybe it was because I was so worried about the scan results I hadnt had then. Maybe I still havnt accepted everything that has happened.

Right now though I'm focusing on the new year. I want to really start doing my crafts more,when I eventually get my room sorted, and try to sell some work. I want NO I need to start feeling 'normal' and get out more. I want to break free from all the restraints cancer has placed on me but that really isnt entirely possible because of the pain left from surgeries.

So as someone said to me earlier onwards and upwards. I dont know what the new year has in store for me, none of us do,but I hope/want to be a stronger person.

Thursday 22 November 2012

Emotional Rollercoasters and Genetics

Well its been a while since I last blogged but a lot has happened, not only to me and my family but to my bowel cancer buddies and twitter family.

A few months ago lots of us were going for tests and so many of us had clear results that we climbed high on an emotional rollercoaster, virtual parties on twitter in full swing. Then we came crashing down to earth as we heard the devastating news that one of our twitter family had had very bad news. Instantly the mood on twitter changed instead of raising a virtual glass we were reaching out to hug and hold the hands of a lovely couple.Im sure like me others were going through the 'what ifs' and 'maybes', we're human and always start thinking the worst.
Sadly a few weeks later we lost that member of our twitter family to bowel cancer.

Then more good results came and once again we were off on a high although this time tinged with sadness. Some of our twitter friends were finishing chemo and getting themselves ready to get their lifes back on track, but then again we came hurtling down as one of our bowel cancer buddies had bad news.
It never fails to amaze me that the friends we have made on twitter are all so supportive. We may never meet but they are always there for a virtual hug,advice or a good old fashioned gossip!
Twitter is also an amazing place to raise awareness of bowel cancer and other life changing illnesses.
Im also pleased to be part of Beating Bowel Cancer's facebook support groups so if you or you know anyone with bowel cancer please tell them to have a look for us.

Im so happy to hear of so many people finishing treatment and starting back to work. Their excitement is obvious and rightly so! I do have to admit that I am envious of them, I miss my job,I miss being out in the big wide world! I also miss having money in my bank every month!!

On tuesday I had an appointment at the genetics clinic at Guys hospital. This is the first time that Ive been to a hospital shaking! So nervous, after all this isnt so much about me but my daughters futures. I was 47 when diagnosed with bowel cancer,lost mum aged 44 to ovarian cancer so there is a risk that they may be linked that we have a faulty gene known as Lynch syndrome.
On a positive note if the test result is positive the girls will be offered a blood test and if needed early screening. So actually its a good thing for them as I certainly wouldnt want them to go through what I have.

Next week is my next ct scan, Im more nervous about this one than any others this year. So far all clear and if this one is it will mean the first year in seven that I havnt had any ops and the second in seven that cancer hasnt raised its ugly head!!

FINGERS CROSSED!!!!

Thursday 20 September 2012

A Repreive and Broken Ribs!!

A few days ago my consultant phoned to tell me the bone scan was clear. Oh Yes!! Clear apart from trauma to my ribs?
I havnt told you about that! At last appointment with lung consultant when he was ordering the bone scan the conversation went something like this:
Doc "I will order a bone scan to be on the safe side but I know what it will show"
Me (slightly nervous) "You do"
Doc "Yes it will show trauma to your ribs where I had to break one or two during your surgeries"
Me " Really I didnt know about that"
Doc "If I had told you before surgery would you still have wanted the ops?"

Hmm did I have much choice?? It would explain why it was so impossible to lie flat after the ops and possibly why I still have pain in that area!!
Its evident my consultant has a strange sense of humour, while being prepped for surgery a nurse commented on one of my tattoos and he asked had I got one for him erm no! Oh yes he quipped you have a big scar down your back thats my mark!!

Ok so 2 clear ct's,clear colonoscopy and now a clear bone scan so far this year. To say I'm relieved would be an understatement, now I'm starting to believe that maybe just maybe cancer has given up the fight and surrended!Next ct end of November so we will see.
You would think that I should be out celebrating, dancing on tables and not acting my age but the funny thing is I've actually being feeling quite low. Emotions can be so difficult to control sometimes, you work yourself into a frenzy waiting for the results and the possible 'what ifs' and then you are told everything is ok . . . . . great news off course but why then is there a few days when the world seems to carry on around you as though nothing has happened?
Unless you have been in a similar position its hard for someone else to understand. By writing this blog I hope it helps others to realise that all though things might be great physically,emotionally its still hard to come to terms with everything that has or is going on. The fact cancer is not evident right now doesnt mean I'm over it all.
I have days of feeling isolated, of being inadequate because I can no longer do things I used to. I should be able to pick up and play with my grandchildren (not the 10 or 12yr old they are too big!) but I find it difficult. Today I went shopping with my eldest daughter Nikola and her two youngest Ashley who is 2 and baby Ellie 8wks. I held baby as she was crying while Nik was trying clothes on and it hurt!
I curse cancer every time I take a painkiller or look in the mirror and see the scars. I curse the chemo that made me so sick and has left me with neuropathy in my hands and feet.
I read with real happiness that other cancer survivors are going back to work, and I curse cancer for making me unable to return to a job I loved.
This is why I have volunteered to help Beating Bowel Cancer help raise awareness of this awful disease, to make people aware bowel cancer doesnt care how old you are,how rich or poor or where you live. By hopefully being able to give support to people that are just starting their cancer journey.

Beating Bowel Cancer and Bowel Cancer Uk aim to get the word out on to the street and so do I!!

Wednesday 12 September 2012

Pitfalls, Picc lines and Pampering

So here we again waiting for yet more results!!
If you have read my previous blogs you will have met the evil villain of my story namely Bowel cancer and his 'off springs' lung mets. Today I had a bone scan, although Im staying positive the wait for these results is making me more nervous. Why? Well IF something is found it will probably mean chemo for me and I dont want to think about it any further.
I have been told off for leaving bits out of my earlier blogs. There are things I didnt want to talk about mainly because I still have days when its hard to comprehend everything that has happened. It has taken me a long time to say the word and admit I had/have cancer. Yes after all all its just a 6 letter word starting with C like camera or carrot, but its a much bigger word if you have been affected by it. So lets all say it together C A N C E R cancer!! A phone call earlier this year changed my life but I will come to that later,
Right bits that I left out that are mentionable. The best bits first. Im sure you will all agree one of the worst things about recovering from surgery is not being able to shower or wash your hair. After my first op my daughter Stacey decided to take matters in her own hands and wash my hair. So we waddled of to the shower, that is I did she walked normally! Now if you have had abdominal surgery its difficult to bend over or lean back so there I am sitting in a chair with Stacey trying in vain to not wet anything but my hair! Hmm I think she got wetter than me in the process!
Then there are those little jobs like cutting toe-nails and shaving legs. Rachael doesnt like my feet and doesnt hide the fact so when it came to these tasks she wore rubber gloves,no not the same ones used for washing up. Another time she thought it would be nice for me to have a bubbly foot spa, warning dont put too much foam bath in a foot spa, yes there was bubbles everywhere!!I have to add that as the only daughter at home she has had the dubious pleasure with helping me wash on many occasions. She has also become a dab hand at wound cleaning, dressing changing and picc line flushing!! On the subject of picc lines when I had mine 'installed' what a to do that was. The chemo nurse said it wouldn't take long, but over an hour later 3 failed attempts in my left arm it was put in the right arm. Off course thats not the end of it, although I didnt like some have a problem with the line itself, I became allergic to every form of dressing they put on it so it was held in place purely by the bandage!
As for the pitfalls along the way it was never my intention to make my blog all doom and gloom so for that reason Im not going to tell horror stories about chemo side effects or surgeries. End of that. Similarly I dont want peoples sympathies, yes Ive been through a lot but who hasnt? Anyone who has been affected by bowel cancer,personally as a carer or losing a loved one has been to hell and back. Many still are :(
Back to the phone call earlier this year. One of my specialist nurses rang to ask if I would like to go to a patients day. After much deliberation Rachael and I went. The day was being run by a wonderful charity called Beating Bowel Cancer and I havnt looked back since (well maybe on the odd bad day). I have met some amazing people and their families. Been to some amazing fundraising events and intend going to many more!  Oh and Im not embarrased to say bum or poo in public anymore!!

Friday 31 August 2012

From then till now!

So 2008 comes to an end and I take a deep breath and wait to see what life throws at me in 2009. Okay cancer is one battle,chemo a totally different battle but a brain haemmorage for goodness sake, because that is exactly what happened next, is a completely different kettle of fish.
January 17th started like any normal day. Went shopping,cooked dinner,watched some tv and went to bed about 11pm and that is when the headache from hell 'landed' 'erupted' one minute I was fine the next I was literally holding my head up to go to the bathroom. Standing at the sink I remember wondering why my left leg was shaking . . . . and then I was sitting sideways in the bath, legs hanging over the side being violently sick!
I felt too weak to try and scramble out of the bath and my voice what voice,couldnt seem to shout and despite hubby being asleep in the next room he carried on snoring. Lets face it ladies a lot of our other halves would sleep through the ceiling falling down! Rachael was the only other person in the house and her bedroom was downstairs. This is where our scary (not,unless you are another dog) staf Daisy came into play barking non stop until Rach got up and came to my rescue again. Funny that I didnt want the damn dog as we had cats but thats another story.
Okay having been helped out of the bath Rachael decided to phone an ambulance, we werent sure if this was just a delayed reaction to chemo, but I hadnt had any for 3 months or maybe the neutropenia hadnt quite sorted itself. Fast response medic arrived and everything seemed spot on,temperatue normal,blood pressure ok so what was going on. He asked if I wanted to go and see a doctor at hosp and I thought perhaps I should. Had I not gone to the hosp, laid down and gone to sleep who knows.
I can remember talking to the ambulance crew, nurse at the hosp and then I woke up in a hosp bed a drain in my back,wires and tubes everywhere. Imagine my suprise to find it was friday evening, nearly a whole day lost. Lots had happened none of which I can remember including having coils fitted to stop the bleed.I had suffered a subarachnoid haemorrage. 33% of people dont make it,33% have lasting damage such as memory loss and 33% walk away virtually unscathed. Luck on my side again? I just know I had once again faced my own mortality.
The rest of the year passed fairly uneventfully apart from the birth of grandson number three. I wasnt allowed to drive for 6 long and frustrating months, a small price to pay. Incidentally I will introduce you to the rest of the family in another edition!!
Oh hell here comes 2010 and this time I face it head held high, not literally like a year ago! I had to be ready for anything life had ready for me. Come on then I shouted come and get me Im ready. Oh buggar it did a scan in April showed a new lesion on my right lung. After the usual appointments my lung consultant decided I was a good candidate for RFA(Radio Frequency Ablation) in his words lets fry this one out . . nice!.So in June, the same week as previous hospital ventures,I was in and out of hosp in three days how amazing and hardly any recovery time. The only downside I dont like about RFA is there isnt any sample for histology but would still recommend to anyone. Oh and also became nan to two more grandsons this year.
Are you bored yet because here comes 2011, last year and you guessed it scan showed another lesion in right lung. RFA? No to near the edge of lung so in August another thoracotomy, not going to go over all the ins and outs just that they had to reopen the old scar and yes it bloody hurt!! Histology came back . .malignant.My oncologist wanted to start chemo again but a PET scan had shown hot spots between right lung and ribs. Eventually after much toing and froing my consultant decided to 'get in there and have a look' and 4 days before Christmas he did just that opening the same scar which he had so carefully patched up four months earlier. Finding nothing strange wahoo! However this ment I had missed the six week window for chemo oh dear thats a shame!!
So there we are. Its now 2012 and two clear scans and a clear colonoscopy so far. Just waiting for scan results again. Question is can I actually have a surgery free year??

Monday 27 August 2012

2007 and beyond

New Years Eve 2006 came and 2007 crept in quietly. It found me hoping,wanting this to be a better year than the last two. Of course both life changing events losing my dad closely followed by bowel cancer had been out of my hands so I had to pick myself up brush myself down and get on with life! I cant remember exactly when I had a CT scan but there were no signs of the cancer returning wahoo but (of course there is a but) my consultant was concerned that I now had an umbilical hernia and would need surgery to repair it . . oh goodie! He explained they would use mesh to close the hole in abdominal wall, simple operation (?). Just into hospital for two nights simples!! So in answer to the question would I be going back to work . . . no not yet.
Now you are probably becoming aware that life has a habit of throwing curve balls my way and here comes another. Date for hernia op arrives June 7th thats ok, yes but (another but) my husband Colin has been taken ill with pneumonia and admitted to hospital the same week!! This ment my poor daughters visiting both parents in different wings of the hospital at the same time. Obviously I was home after a couple of days and as simple as the op might have been my nicely healed scar from original surgery had to be reopened and it was bloody painful. I wish I had taken a picture of the bruise it caused because believe me it was as big as a side plate!
Okay so both 'patients' are home and recovering. You might remember from my first blog post that I was born in 1957 which ment that I, and Colin were coming up 50. Yes I hear you say party time,wrong! Duck here comes another curve ball, Colin went for a follow up chest scan and it revealed a tumour in his left kidney. A few weeks later he had the kidney removed.
Right lets move on a few months and here comes 2008 and again Im wondering if this year will see me back to full strength and back to work. The answer is simple no! A scan in April shows 2 lesions on my right lung have grown but the one on the left has stayed the same. So here we go again after appointments with my oncologist and thoracic consultant it is decided surgery followed by more chemo.June 8th a year after hernia op Im back in for lung re-section or thoracotomy. Now my consultant told me this was a difficult op to recover from (arent they all) he wasnt wrong! To me the worst part was the drain and especially having it removed, as no doubt anyone who has experienced this will tell you. When I went home had to sleep sitting sideways on the sofa as I couldnt lay down, but of course it got easier and in time was up and mobile again just in time to start chemo. Different regime this time Oxaliplatin and Capecitabine. The oxy was an infusion every 3 weeks followed by the cape as tablet at home. The side effects arent good, peripheral neuropathy is horrible tiny electric shocks in fingers,hands,toes and feet especially when touching something cold. It also makes you feel like your throat is closing and makes it difficult to talk, several times my chemo nurse had to give me warm drinks to ease this. I needed a blood transfusion and had to miss chemo a couple of times because blood count was so low. In november my chemo nurse told me to watch my temperatue as she was worried about white cell count and that I should go straight to A&E if it was too high. Guess what two days later found me in an ambulance heading to hosp and subsequently admitted with neutropenia. My white cell count was dangerously low, a very pleasant (not) doctor told me it was lucky I had gone to hosp as it was possible my organs were on the verge of closing down!?! So any visitors had to wear gloves and aprons as I was at risk of infection. Anyway I was home for Christmas and New Years Eve was on its way so third time lusky maybe?
Off course not, little did I know my biggest challenge yet was about to happen!!

Thursday 23 August 2012

The Next Chapter

So its 1979 I've packed my bags and moved to London.Leaving Worthing was easy I didnt want to live in a small sleepy seaside town where apparently people moved to retire/die and forget why they went there! However leaving my dad was difficult but I knew he was being well looked after as a lovely lady called Ann had moved in with us not long after we had moved.
Right fast forward to 2005 I'm happy working as an administrator in a busy bingo club. Dad had phoned to tell me hospital had recommended that he would be better off in a wheelchair as using crutches was putting a strain on his heart. I had a funny feeling about this.
A few months later my stepmum,dad had remarried a few years ago after living alone for sometime after Ann had passed away,phoned to say dad had been admitted to hospital. The next day I headed off to Worthing to visit him. To say I was shocked when I saw him would be an understatement. Two days later another phone call to tell me dad had lapsed into a coma. I headed back the next day and stayed with him only leaving the hosp to eat, bath or just have a walk on the sea front, sleeping in a chair by his side. I was holding his hand as he took his last breathes. It felt like my world had stopped. My dad was gone.
After the funeral and a short break on Portland where dad had been born I returned to work. I wasnt worried when I started to lose weight and feel tired  Losing dad,stress at work what else could it be. However I was concerned about a nagging pain in my abdomen and in Nov went to see my GP, he said he could feel 'a blockage' and referred me to the coli-rectal team at Kings.
I never made it to the appointment! In feb 2006 I started to feel really unwell and went sick from work. I dont remember much about the few days I was at home in bed except feeling really sick and not being able to eat. On sunday Feb 19th,the day before my coli-rectal appointment,my daughter phoned an ambulance.I was so weak and vomitting a thick black goo!  I think she probably saved my life!
The next few days are a blur of tests, from a CT scan I was told it was possibly my appendix,another doctor came and said although everything in that area looked swollen and distended it wasnt my appendix. On wednesday 22nd I had a colonoscopy in the morning and that evening was taken to theatre for investigatory surgery.Thats when they found the tumour in the right side of my bowel, a T3 tumour, yes a tumour.
So there I was watching this poor woman lying in a hospital bed,tubes and wires attached to her. She looked like she was in so much pain. That afternoon her family came to visit and it finally dawned on me that it was me lying there. I wont dwell on the time spent recovering.
 At my post op check up I was told it had been a malignant tumour, hang on I had cancer no wait it was gone they had taken it away. What the nurse said next scared me more . . chemotherapy for 6 months.I went home and sobbed.
In April I started 5FU, a quick injection every day for 5 days then 3 weeks off. Then came the side effects mouth ulcers, sickness, diarrhoea, stomach cramps. I was admitted to hospital 3 times for dehydration. Then it was September and it was finished. With money dad had left me I bought a  new car to celebrate.Then set about getting myself fit enough to go back to work . . . . but would I make it back to work???


Friday 10 August 2012

Where it All Began


Ok here goes finally getting started with my blog. I have read some blogs and dont know how mine will match up, but then again this is me and you are you! I have decided to give you a quick look at my life before bowel cancer so I hope youre sitting comfortably and I will begin.
The story begins over half a century ago (yes Im that old) when I was born by C section to loving parents George and Winnie. Sadly they had lost 3 babies all stillborn before I came along.
We lived in the seaside town of Worthing,West Sussex in a lovely bungalow called Faraway in Princess Avenue sounds like a fairytale name doesnt it!
I had a good childhood, probably thought of by some as a spoilt brat but I look on it as being loved by two wonderful people.
However that all ended in 1967  a few months before my 10th birthday when mum lost her battle with ovarian cancer. Of course I didnt know then any details just that suddenly after being in hospital for so long she wasnt ever coming home.
Well thats ok I hear you say you still have your dad which is true, but if only it was that simple. My wonderful dad was War blind and disabled so unable to care for me. My maternal grandparents had been staying with us but they had to go back to their own home in Stoke-on-Trent. Dad was fortunate to have the backing of St Dunstans, a wonderful charity for war blinded vetarans, and they arranged for a live in housekeeper.Had we not had that option I dont know where I would have gone or how my life would have turned out.
The next thing I couldnt understand was why we had to move. It was only a two bedroom bungalow so obviously now not suitable for us.I didnt want to leave Faraway I still hoped that maybe mum would walk back through the door and it had all been a big mistake. I didnt want to leave the only home I knew, the memories, the big garden, my friends.
We moved early in '68 to a larger 3 bedroom bungalow in Worthing. For a while I had to catch the bus to school, but then came another move, junior to senior school. This time I could walk to school, or ride my bike if (a) I had got up early enough or (b) I wanted to bump into certain boys that caught the train to school!
The next few years passed quickly, I left school at 16 to start work and at 21 moved to London to work for Mecca bingo and another chapter in my life started.