Speech surgery and rogue stones!

Well I can almost hear you thinking what kind of title is 'Speech surgery and rogue stones'. That is exactly what this new blog post is all about!

Earlier this year I was asked by the London Cancer Alliance if I would be a patient's voice at a survivorship forum. As I had taken part in a Macmillan Hope course it was thought I could be a good candidate for the job! Off course I agreed, but little did I know it would be me and 60-70 health professionals. The first speaker was an oncology professor, no pressure then. I had written notes but didn't read from the, the whole point being that I spoke from the heart. My opening sentence got instant attention "A diagnosis of cancer no longer has to be a death sentence, but it can be a life sentence".
I spoke about the black hole that we fall into regularly, the depression that so many of us have to battle. How setting goals can help in moving forward, that naming things that we are grateful for can make us realise that today is a new day and tomorrow is another day. I asked how many of them look up from their paper,book,phone or laptop and smile at a stranger. That smile could be the start of a good day for someone. I've been asked to help set up a group at a local hospital, people were asking me for advice! I walked out of the building feeling 10ft tall.

Two weeks later (sept 25th) found me back in hospital, this time for elected surgery. Yes it was time to say goodbye to my troublesome gall bladder. They tried keyhole but as anticipated it was open surgery. My consultant said the offending organ came out easily but she had to clear a lot of bowel adhesions in the process. When I came round I wasn't in too much pain and on a morphine pump that's when the trouble started. It seems me and morphine don't get on well. I had to be taken off the pump as my breathing was shallow. So they gave me an inject of something (?) to combat the morphine and thought I should have a drip to flush the morphine out. Problem!! The cannula from earlier had already given up so along came a junior doctor to put in another, then came a second junior doctor and finally an SHO finally after the 11th attempt between them a new cannula was in! I felt quite sorry for them, they kept apologising, I just laughed and asked if they were trying to play join the dots on my arms. The next day I didn't feel too bad to start with but as the day went on those little grey hats came in useful a couple of times!?! Friday was the Macmillan big coffee morning and there was no way I was going to miss it. After asking a nurse then my consultant and after promising not to eat any cake (what!) I had a slow walk to the Macmillan centre and back. Later that day my consultant came to see me and sent me home!
Being home is obviously better than being in hospital but being on 'house arrest' again really got to me. Add to the mix that hubby is home sick after having surgery on his wrist the day after my surgery and my daughter is also having problems with her arm after surgery a few months ago and I'm sure you can understand why being home isn't always a good thing!

Just when I'm starting to feel better and ready to venture out I began having pains again, I joked that it felt like a gallstone attack, but it couldn't be it's all gone right? The emergency doc diagnosed trapped wind. The next day ( sun 20th October)  I woke at 6am in pain again and eventually after being in A&E for nearly 6hrs I was admitted again! After an ultra-sound and a ct scan it was thought I might have a liver infection but an MRI showed 2 stones stuck in the bile duct! Monday they gave me tramadol for the pain and I soon remembered why I didn't like the stuff, dizziness, mind working overtime. Never again!! Wednesday evening I had another bad attack, awful pain and they had to get the doctor on call to prescribe stronger pain relief, he was hesitant to give me morphine but I persuaded him and finally got to sleep. Thursday, after being nil -by- mouth on and off for three days I finally had an endoscopy, a small cut in the bile duct and the rogue stones (approx 7.5mms) removed. Friday home to start recovery part two!!

I have driven a couple of times this week, and today took our dog out for the first time in 6wks. I'm still uncomfortable but pleased to be getting out. It's been a rough few weeks, and I've had some really down days but I'm not going to fall back into that black hole!
What I've been through is nothing compared with what many are battling and I've felt really guilty about feeling sorry for myself.

Onwards and upwards!!

Vacant Lot

I've been wanting to do a new post for a while and several ideas have been rattling around in the vacant lot between my ears. So if you're sitting comfortably I will begin!

A while ago someone was wondering whether or not to do a blog about their journey with depression and  I absolutely think they should. Writing a blog and getting your thoughts out can be therapeutic. It can help family and friends understand a bit more how you're feeling and what you're battling. I also think that if it helps people understand themselves a bit more you've done a good job.

Then I started to think that actually cancer, depression and other illnesses have similarities. For a start in the majority of cases they're invisible! How many times do people say " You're looking well" when inside you're screaming "but I don't feel it"! Many of us that have had or are battling cancer may well have a run in with depression. Then there's the end of treatment 'syndrome', you've had scans,surgery,chemo,medication and then what??

Which brings me to the next rambling an article I read about the lack of care for cancer patients when treatment has ended. For many sadly there is nowhere to go,there is no end solution. For those of us who are clear whether its months,years or being told you're in remission you're expected to go back to your pre-cancer normal life! That doesn't work though does it? What is a normal life? I'm two years clear this week and being scanned every 6 months so for me it's living scan to scan. That's not pre-cancer normal. Not being able to do stuff I used to do isn't where I was before surgery and chemo!

Which leads me to another topic and loss caused by cancer! Tragically people are losing their lives to this awful disease regularly. Loved ones,family and friends gone. What else do we lose? Sanity! Dignity? Friends? Independence? Sometimes the will to keep battling? Which leads back to where do we go at the end of treatment?
I was lucky to go on a survivorship course and it helped a lot.
However recently I've started to doubt myself again, I've been having a lot of down days. Family may not have noticed because I've thrown myself into sorting my craft room,which in turn actually hasn't helped as I'm struggling physically to do it!
I feel guilty as well because I know others,friends are going through so much more. They're enduring surgeries and chemo and I am so scared that it could be me again. Then I get angry with myself
which starts the whole turmoil off.

So there you are a confusing look into the vacant lot between my ears!!

Emotions and Stones!

The last week or so has again been a roller coaster of emotions,pain and sorrow. I will get back to that later.

I have been thinking about writing a post about good coming out of cancer! Hang on put those rotten vegs away! I didn't mean it was good to have been affected by cancer just that good things can come off it. Have you done things differently since you or a loved one have been diagnosed? Could be something simple like getting up on a miserable morning and instead of thinking "Oh damn it's raining again" you thought about what you were doing that day.
It's good to stop and think of something that you are grateful for instead of feeling sorry for yourself , I know it's easier to say than do but it works!
How many new friends have you made whether they be people you see or friends on a social network that will always be there for you?
I'm not going to say anymore I will leave you to think about that. Think about the good things and turn those negative thoughts into positive ones!!

Ok so the last week or so has been a complete jumble of every emotion. Beating Bowel cancers Patient day, as always, was a good day. Really valuable information, good company, great setting and the food was excellent! It was a chance to catch up with old friends and meet some of our virtual friends.
We all painted our nails to let a really poorly friend know we were thinking about her.

The next day I had the worst possible news that another amazing,beautiful young lady our friend Hannah had passed away. It's awful that someone so young can be taken when she had her whole life in front of her.

A little while later I started to get pains in my stomach and back and new straight away it was gall
stones playing up again. So after a few hours in A&E I was admitted to hospital again. What an awful
few days, doctors telling me on two separate days I would have op, nil by mouth and cancelled again!  It was eventually decided to discharge me on Friday having to wait for referral done back in February. It seems its possible they won't be able to remove gall bladder by keyhole because of scar tissue and mesh from hernia repair which is why they couldn't fit me in as an emergency!

On the Thursday morning I read of the death of another young lady, a mum of two young children. That was the final straw and I cried for Hannah and Katie and Laura and Alison and all the other people taken too soon. I began to doubt that I was strong enough to volunteer anymore, didn't know if I could deal with all the sadness. Being in hospital gives you too much time to think. It wasn't helped by a lady in the bed opposite me coming in to have her tummy drained after being diagnosed last week with advanced ovarian cancer.

Then I started to think about what I said earlier about turning negative into positive. A friend often says she couldn't deal with all the bad stuff but someone has to!!

I thought about Hannah a lot while I was in hospital and how brave she was despite everything she was going through. I told a young doctor in A&E about her and he was shocked at how young she was. The doctor looking after me on the ward was in tears when I told her about Hannah.

Neither of them knew you could have bowel cancer so young!! If doctors at a busy teaching hospital don't know then more lives are going to be lost!

So there was my answer I, You, We need to keep spread awareness!!

Does It Ever Go Away!!

The trouble with cancer is that once you have had it and its gone it never completely goes away. Yes I know that's a contradiction! Be honest who goes for tests or results without feeling a sense of doom. Who doesn't listen to that little man dressed in red with a long tail telling you "Its going to be bad news" over the pretty lady in white with a halo telling you "Its going to be okay"

March was an awful month. It was devastating,emotional,horrendous. We lost some wonderful people. Ladies that were advocates for charities. A young lady of just 33 married for only a month.
People getting news they didn't want, that the cancer had spread.

This has got to stop happening!!

April is Bowel Cancer Awareness month and we all need to do what we can to stop this awful disease. I would urge you to put things on your timeline on Twitter or Facebook to help raise awareness, or links to Beating Bowel Cancer or Bowel Cancer UK.
Tell family or friends not to be embarrassed to check their poo.Tell them not to be 'fobbed' off  by their GP with diagnosis of IBS or period cramps, tell them to get a second opinion.
If diagnosed early bowel cancer is treatable.Too many people are suffering and losing their lives because of wrong diagnosis or because they don't know the symptoms.

On a personal note things have been a bit rough! Although I didn't have to argue to get my gall bladder removed and am now on priority waiting list.
A scan has shown that the tubes,going in and out of my right kidney, are thickening and they need to put a camera 'up' (yes that way) through my bladder into the tubes and kidney and maybe take a sample for testing. The consultant isn't overly concerned but because of my history (cue little man in red chuckling) they need to check it out.So there it is again "you have had cancer so we need to be careful".
They're going to do it the same time my gall bladder is removed so only one anaesthetic!

Something I havnt mentioned is that I was referred to the Breast clinic and went back today where thankfully a mammogram showed all clear!!

So yes I have had cancer and now every different pain or something strange seems to be happening to my body I rush to the doctors. Am I being paranoid? Yes quite possibly. So there it is once you have had cancer it comes back to haunt you and never really goes away.

7 years on and a rumble!!

The last few days I have been scrolling through twitter reading blogs some old, some new. I have read of an incredibly brave young lady using her fight with terminal cancer to raise awareness. a friends blog about recent major surgery,not to prolong her life but too make it more comfortable.
I also came across the blog of a young man facing the stigma of being HIV+. His awful treatment at his local job centre, and subsequent meetings with job centre officials that now means all employees will be given mandatory training in dealing with clients with this medical condition. Well done to that young man.                

So after a hospital free year I tentatively stepped into 2013 hoping that this year would be the same . . cue sound effects and screeching brakes! We're only 46 days into the year and I'm back in hospital.
A few weeks ago I kept being woken up in the night by stomach cramps and a change in bowel habit (PANIC). Miracle of miracles I managed to get a doctors appointment the next day. The GP diagnosed bug/food poisining, I will add here she is lucky to still have all her front teeth as after every sentence she said "you do understand what I'm saying dont you" and "its nothing to do with your cancer". Note to self even if she is the only doctor available in the whole of London DO NOT see her again!! A few days later the cramps started again,slightly worse and again accompanied by amazing belching. An old washer woman on 6 pints of cider for breakfast would have been proud of me. Anyway being a sunday had to go to the local out of hours doctor and saw a much more understanding doc. She diagnosed excessive stomach acid and prescribed Omeprazole (flash back to chemo days) and Gaviscon.After a few days this seemed to have done the trick and I carried on with life.
Cue screeching brakes again because a few days later the symptoms started up again,as before I sipped cooled boiled water and managed to sleep most of the night. The next day was Valentines day *yawn* and had promised to babysit for my daughter so she could go out with her partner.On the promise of them buying us a chinese meal hubby and I made our way to look after the 2 mini-monsters!
Within an hour of eating I was again in awful pain this time more in my back.The pain was like full blown labour I began to wonder if maybe I had been taken by aliens,impregnated and about to give birth to a monster with 5 eyes,6 legs and 4 arms!
Again I managed to get some sleep but the pain was still bad in the morning so thats when I phoned an ambulance. Family and close friends were shocked I had made the call, having had many disagreements in the past about not being ill enough!!
After blood tests (liver blood tests all over the place) and an ultra sound it was confirmed I had an inflammed gall bladder and gall stones one of which was blocking bile duct and was admitted to hospital on the friday evening. FFS!!! I was only in for three nights and started on strong anti-biotics. I asked the doctor if they would remove the gall bladder and he said probably not :( Mainly because they cant do keyhole procedure as there is probably too much scar tissue from previous surgeries.

On the sunday,while in hospital it dawned on me that it was 7 years to the day since I had been admitted. Sunday 19th feb 2006. Being in hospital again was quite surreal. So much has happened since then and now a new problem! The surgery when they found and removed the tumour and part of my bowel happened on weds 22nd feb but I didnt find out it was a malignant tumour until 6wks later at post op check up.

So yet again bowel cancer is getting in the way, because now I'm scared to eat certain foods. The annoying thing is I dont eat fried food,pastry or any foods with a high fat content. People have told me what they found set the gall stones off . . cheese,spicy foods.

Appoinment with gall bladder consultant is in a couple of weeks and I will try and fight my case to have gall bladder removed. With the question mark of whether the cancer will return hanging over me I now dont want a second qestion mark every time I eat something different, and I certainly dont want to experience that pain again. If they cant do keyhole would I be able to endure invasive surgery again, hell yes a few weeks recovery compared with not knowing if my new lodgers (gall stones) are going to act up again seems a good option!

Aswell as that tomorrow I have an appointment at the Haematuria clinic and another potential problem.

I was hoping that this year would again be free of problems and hospitals but it hasnt started too well. Hey ho . . . onwards and upwards!!

The Aftermath . . .

So the new year has arrived,in some respects I was quite sorry to say goodbye to 2012. It was a good year for me in many ways. Clear scans therefore no cancer or surgery! My 6th grandchild and only grandaughter was born. I also got to meet some amazing people.

I know I've said it before but going to Beating Bowel cancers patient day was one of the best things I  have done. The people I met through that day and since on twitter and facebook have given me a new outlook on life.

The scars that cancer leaves behind physically, emotionally and physiologically can not be felt or understood unless you have been there. Not to be judged or berated for having one of 'those days' is amazing. Once you have had cancer you can understand and feel other cancer patients highs and lows. We have all been on the same journey except our paths have taken different routes.

Last week I started a Macmillan survivorship course. We were asked what was the hardest choice we had made through cancer, for me it was going for genetic counselling and now waiting for results. yet again the tears fell, but not only me, others also got emotional and the tissues were passed round the table as they told of their choices.So emotionally am I completely over this whole journey, simple answer . . NO!

Every day I hear about people that are in pain, even though they are free from cancer. Whether it be from neuropathy caused by chemo or scar tissue,adhesions or damage from surgery or radiotherapy. So the aftermath of having had cancer begins.
The fact that maybe years on you, like I am,are suffering,especially in this cold weather,from neuropathy in hands and feet, That sometimes because of this you may get up from a chair and have a 'drunken stumble' or take something out of the fridge or freezer and nearly drop it because it hurt your hands.
Or perhaps you like me are in almost constant pain as a result of damage caused by surgery. I didnt expect to be on pain killers indefinitely and I'm sure some of you didnt expect it either!
I didnt have radiotherapy so I cant comment on it, but I know there a lot of you who do suffer as a result of having it. So physically is my journey over . . .NO!

Off course weighing up the pros and cons, treatment against no treatment, there really is only one answer . . .Yes. There are too many people that dont get that choice.

Its so wonderful to hear of people going back too work. Maybe one day it will be my turn, sadly not my old job but maybe somewhere there is a little niche for me.
Ideally I would like to start selling some of my craft makes so need to look into that.

So there we are a little insight into how I see some things. I dont expect everyone to agree with me.Maybe it might help someone out there who feels they're the only one going through pain or still struggling with accepting their diagnosis.

Just remember we're in this together.

One for all and all for one x