..............................................Primary Peritoneal Cancer Awareness & support

Saturday, 18 May 2013

Chemo Curl

At last I can really claim that my hair has grown again and Yes it is really curly and I love it.  Would like to put up a photo but not certain how.  Will have to enlist help of beloved husband.  I kept being told that when hair grows back after loss through chemotherapy, it invariably comes back curly. Well it has and it is.  I appreciate that a lot of women hate this look and cant wait for it to disappear but I really want to keep it short and really curly.  It feels great to touch  and I feel great in myself.  So yes there are silverlinings.  Chemo and the reasons for having it not great at all....The post chemo curly lamb look is just  fine by me.  Photo to follow.  Love to you all.  x

Sunday, 5 May 2013

Reasons to be happy

 as a mental health worker, I have often heard people say that all they want is to be "Happy".  Everyone else is happy so why cant I be happy?  Why?  well really that is easy.  You see the trick is capturing those brief momments,  for sometimes that is all they are. Those brief glimpses of joy that happen when you least expect.  That beautiful bird singing outside your window at 5 oclock in the morning when you would rather be asleep.  The sunny day that has come after months of rain and cold,  sitting in that sunshine dringing a cup of tea for the first time in months.  These things make up happiness.  Yes sure in the bigger scheme, its not perhaps like  recognising you have won a wonderful prize or passed a big exam or holding your baby in your arms for the first time, but it is all these things, put away in a mental box of recollections that can make you happy.  Having Cancer isnt great!  (understatement) and there are times it may seem difficult to see reasons to be happy,  but those reasons are there.  Just recall the little times of joy and put them altogether and find yourself a whole load of happiness.  And sure, somedays will still be bad and finding reasons to be happy difficult to unlock but I believe if you look hard enough those happy thoughts are there, how ever fleeting.

Saturday, 4 May 2013

How long? and First post treatment Consult appointment

I cant believe how long it is since I blogged.  Where does time go when you are having fun!  Being back at work full time is keeping me busy and I mean busy.  Lots going on with tight deadlines to meet.  however I am not complaining just thrilled to be able to be back at work.  Normality even if stressful at times is GREAT........Well most of the time.  So what next.......Waiting for my first consultants appointment after finishing treatment.  This will be on the 29th May so not long now.  Not too anxious but probably will be just a little before I actually go in to see him.  Will have had a blood test before hand, to measure the antigen levels (CA125)  Really hope it hasnt gone up or if it has it is in normal levels.  Feeling generally good and that is really important.  However I do have a small hernia (post operative stuff) and that feels a little tender some days but not really causing trouble.  Have just bought myself a new mid range (price wise) pedometer. immediealty went for a lovely walk on our marshes....Straight out the door, down the road and onto beautiful nature reserve.  So lucky....completed 4000 steps.  cant be bad..

Sunday, 14 April 2013

Keeping Fit.... thats the aim

It is 1850 and today I have walked 7720 steps.  My dearest husband  (Joel)is also walking his way to fitness and has started the competition to aim at walking 10,000 steps a day.  Joel had a heart attack on the 20th Feb 2013 and as part of his own recovery he is walking further and faster each day in a concerted effort to improve  so I am joining in.  The trusty pedometer I bought pre cancer diagnosis ( I thought I was overweight ) is coming into its own.  By the way Joel has reached the 10,000 steps per day on several occassions now...Must catch up.

Saturday, 13 April 2013

Signs and Symtoms of PPC

Well I can only describe my experience.  With hindsight I now know my symptoms to be the main symptoms of PPC and Ovarian cancer.  In fact my GP sent me for blood tests including one called CA125 warning me that this was a test that could rule out Ovarian Cancer and not to worry.  If the result came back with a high result then it could probably be one of a hundred other conditions. Including irritable bowel.  What I am trying to say here, is that if you get any of the following syptoms then do go to your GP and ask for this test to be done..  The chances are that it wont be Ovarian or PPC but if there is even a slim chance it could be, you need to know.

If any Gentlemen are reading this,  Yes you can get Peritoneal Cancer.  We all have a Peritoneum.  However you clearly do not have ovaries so I am guessing it will be even harder for your doctor to consider the likelihood of you having this as a possible diagnosis.  I have no idea if men would be offered the CA125 test but it may be worth asking.
Please dont be afraid of looking stupid. Ask for it to be ruled out.  Yes the chances are that your symptoms could be something else but I personally would rather know for sure, and then if it turns out to be something less sinister then all well and good but if it is Cancer YOU NEED TREATMENT..  I suspect you will have the same or similar symptoms.  These are only my thoughts and opinions so please seek professional guidance if you have any concerns. I am only an expert in my own condition and body.

My symptoms

Feeling very Bloated for two or three weeks.  (feeling I needed to pass wind but being unable to)
Appetite decreasing. (barely able to eat without feeling full)  I love my food 
Weight gain. 
My abdomen felt stiff and I had a slight dragging feeling in the pubic area. 
Uncomfortable when walking

To be honest I just felt that I was gaining weight and when I went to the Doctor she / he would tell me I was Obese and to go away.  Eat less and excercise more.  I had even bought myself a pedometer to measure how much I walked and to try and increase this.

I had gained Weight! I was 13 stone at diagnosis.  1 stone of this weight was in fact a fluid build up called Ascites.  Most uncomfortable

I hope this helps.  Dont ignore any symptoms including those not listed here.  It is your body listen to it.

finding support

HI,  Just to say am very excited as I have found ladies to talk too who have the same diagnosis PPC. This is the first time I have been in touch with others with the same condition.  Go to Ovacome and look at the myovacome and post a question.  Lots of support there it seems.  May try to link this blog to Ovacome but not sure how yet.

Wednesday, 10 April 2013

No matter who you are...


PPC or Ovarian Cancer

My diagnosis of PPC came throug the route of an Ovarian cancer diagnosis and has been treated in the same way.  It took me awihle to get my head around this.  Did I or didnt I have PPC?  Why was it being treated like Ovarian cancer?  Well as I now understand it, the cells of the ovaries (epithelial cells) are the same as those making up the peritoneum and therefore respond to the same treatment as given for ovarian cancer.  So What is the difference?  The difference (as I understand it)is that a Primary diagnosis is where the first initial cancer cells are found. Therefore as no growth or cancer cells were found on the ovaries and only on the peritoneum, despite the similarities in cells.  My cancer was a Primary Peritoneal Cancer but treated the same as ovarian cancer due to the similarity of cell make up.  Because of the rarity of PPC and similarities to Ovarian cancer, I even  found myself thinking of myself as someone with Ovarian cancer. I dont.  I have PPC.

Tuesday, 9 April 2013

Primary Peritoneal Cancer. This Way,That Way, Somewhere Else. A Journey

I was diagnosed with Primary Peritoneal Cancer (PPC) in August 2012. and after the initial terror both for me and my family I came to terms with this and got on with the treatment.  3 cycles of chemotherapy followed by radical hysterectomy and then a further three cycles of chemo.  Not much fun but bearable with the wonderful support of my lovely family.

From the initial diagnosis until the surgery in November 2012 I managed to continue working a little.  I had / have a very understanding and compassionate employer.  Following Surgery I remained off work until Feb 18th this year.  Today I am back at work full time and feel fine.

I am writing this blog as I want to document my experience and knowledge of this condition and pass on to others how I have coped so far.  Anything I write will be my thoughts and experience and not therefore to be taken in the place of medical advice.  Always seek that first.  However I shall attempt to add links and information that I have found helpful.

The most importand element of this blog for me is to pull together a venue  (virtual) for others who have this diagnosis as there is very little out there.  If I can help others with PPC or their family and friends to understand and feel less alone  I would like that.  So message me through my facebook page or leave a comment here.  Thanks for reading this. Take care.  D