Ovarian Cancer - Why Didn't the Penny Drop?

Ovarian Cancer Raising Awareness

My journey through ovarian cancer - findings, tips and tricks.

Blog Entry

Ovarian Cancer - Why Didn't the Penny Drop?

Despite ovarian cancer being the No.1 killer of the female cancers I knew absolutely nothing about the symptoms. I had never even heard of ovarian cancer.

 

OVARIAN CANCER SYMPTOMS:   The symptoms range from bloated stomach, feeling full, frequent need to urinate and leakage, runs or constipation, pain in back, stomach or leg.  (I had what I thought was cramps on the top of my foot but none in my stomach); unusual bleeding, painful intercourse (or for me absolutely the opposite); tiredness.  It is important if you experience these problems for more than a fortnight to see your doctor and mention ovarian cancer.  There is no screening for this silent killer.  We can all help by passing on the message.

JANUARY 2009

 

Sat on a seafront wall with friends in Tunisia we took the usual holiday photos.  Looking at the photos at home I noticed that my stomach was very distended and our male friend was looking at me quizzically – so I captioned it “I think she is six months pregnant!”

 

I put it down to an upset stomach, coughing and a month of all inclusive hotel living.  Amazingly I had not noticed the size of my stomach perhaps in part due to having cataracts in both eyes.

FEBRUARY 2009

On return to UK I went to see a doctor.  For some time I had urinary incontinence but the bad cough in Tunisia had made life hell and the leak a flood.  The doctor referred me to a consultant, an expert in a tape operation to “pull me up” which would hopefully resolve this problem.

EARLY SUMMER 2009

In hospital they examined me and went over my health history: hysterectomy leaving the ovaries, bad cough, urinary incontinence and frequent visits to the loo. My body was size 12- 14 (except the stomach) and I was not eating a lot.  My loud hacking cough had been really concerning me but the mammogram showed nothing even though I had felt a lump.  I was able to tell the doc that my inverted nipples were apparently ok. 

AUGUST 2009

I was re-examined and the consultant said I needed a vaginal AND rectal prolapse operation.  I said I had been continually badly constipated.  Still no warning bells rang.  I was put on the waiting list and told that as my case was non urgent it would be a three to four month wait. 

NOVEMBER 2009

Christmas was fast approaching and we were planning a holiday.  I was told that my operation was scheduled for the beginning of December but as we were flying too soon afterwards they said they would leave it until the New Year.

We came home from holiday to find no sign of an appointment.  I was, at the time, more concerned about having my follow up cataract operation appointment and believed the terrible winter conditions had caused the hospitals to run way behind their normal schedule.

MARCH 2010

In hospital for the follow up to my cataract operation I contacted the gynae department to say the appointment still hadn’t come through.  “Oh yes,” she said “you are scheduled for 1st April.”

The next week we married.  Sadly we could not organise a proper honeymoon as another consultant’s mother had died a month previously and he had cancelled the February appointment until a few days after our wedding and my husband was in such pain we felt we could not leave it yet a further month.  My dear Aunt in Scotland died earlier in the month and, due to various circumstances, the funeral was not held for some twenty days – the day before our wedding.  It was a very sombre wedding group.  My husband to be had said he did not like my all black and white outfit so I put on a suit from my wardrobe.  Nothing matched and frankly I was not in the mood for getting married as I was still thinking about my beloved aunt.   I stood next to my granddaughter for a photograph. 

 

My granddaughter was eight months pregnant – I looked even larger.  Still no warning bells rang.

APRIL 2009

First April arrived and after three hours of being ready for the operating theatre I was suddenly told without warning to go home as they had had a very complicated operation which had put their schedule too far behind.  I was very upset as my husband was due to go for a hip operation and I was concerned I would not be fit in time to look after him.

Another week passed and I again went for the operation.  I woke up in bed pain free.  “Great!” I thought.  “This is absolutely fantastic surgery!”  The consultant came over to me and explained he had not done the operation.  I thought he had found an easier method that would not require an operation.  My glee quickly turned to dismay when he explained a very large tumour had been found.  I told him how I had been sitting up night after night as I could not get to sleep for long with coughing for over a year.  He said the hacking cough might have been caused by the tumour pressing on my lungs.  I was having terrible cramps which would not go with rubbing and my blood pressure was high.  I was lucky if I had three hours sleep and spent most nights sat upright on the computer chair.  Even sleeping tablets did not give me decent sleep.  My husband said I snored like a traction engine.  We were completely exhausted.

The consultant was excellent and arranged for me to have a blood test, ultrascan and a CT scan that day.  The ultrascan revealed a large melon-sized tumour.  The CT scan failed to materialise and I was told I would be contacted with an appointment for the scan. The phone call did not materialise and I was told on the phone that one would eventually be "in the post". I explained that the ultrascan had already shown a melon sized tumour and the surgeon had wanted a scan done a couple days previously. 

A week after the scan I saw the oncologist who said I would have an operation to remove the tumour.  We took out a mortgage for the hospital car parking.

Time went by.  I was not sleeping.  The cough kept me awake and disturbed my husband.  I lost count of the hours during the night I got up and sat upright on the computer chair which was the only place I could get comfortable for over a year.  My husband came in one day and found me unable to breathe so he phoned NHS direct for advice.  Next thing a paramedic arrived on the doorstep.  My blood pressure was sky high and I was whisked into hospital overnight.

MAY 2010

A month passed and still no sign of my operation to remove the tumour.  I am in great distress and PALS suggest I speak to either my doctor or the consultant via his secretary.  This I did to be told by the consultant’s secretary that the operation was yet another month away – June 7th and no hope of having it earlier.  I phoned a couple more time explaining how ill I was feeling and received the same response.

I felt the consultants must be pretty confident it wasn’t cancer BUT physically and mentally I was simply not coping and felt if I left it longer I would be in no state to have the operation.  I was absolutely exhausted.

I phoned my doctor’s secretary, Jean (who is really great!) and she recommended a private surgeon – and it turned out to be the one who was going to do my NHS operation!  I phoned the oncologist’s secretary who said it would cost over £8,000 and he could only do it about a fortnight earlier than my NHS appointment.  I still took it as I felt I was dying – that is how very desperate I felt. It was money we could ill afford so it turned out it was a good job we hadn’t had a honeymoon or reception!  Luckily the oncologist found a gap in his schedule and I had my operation a few days earlier.  My doctor  phoned after I contacted her secretary offering to arrange an appointment for me urgently but I said with Jean’s help I had gone straight to the consultant and was having it privately.  My doctor was horrified with the two month wait for the NHS.  I think if I had gone to my usual doctor’s practice when I had the incontinence problems she would have done a proper examination and the tumour would have been found sooner.

On the day of the operation, practically as soon as I arrived at the private hospital room, I was whisked into the operating theatre.  I didn’t even have time to finish looking at the photos of my gorgeous new great grandson.

After five hours in theatre I was back in my hospital room with my husband and daughter.  This time I really knew I had been operated on! Every little move was very painful.  I was told not to stretch and use the electric bed to raise and lower myself. Move - they must have been joking!  This was all very well but the staff seemed intent of hiding the control out of reach and I could not summons the staff for help.  I lost count of the number of times staff gave me medicine, food and drink just of reach - along with the control to raise the bed or summon help.  One forgot almost everything she said she was going to do.  On one occasion she told me to get showered and she would bring a towel. I decided to wait for the promised bath towel.  Three quarters of an hour later and there was no sign of the towel so I buzzed again and another nurse fetched one. 

The surgeon explained my bowels had wrapped around the melon size tumour and it was attached and difficult to remove.  Samples had been taken for analysis and I had to wait about a week for the results from the oncologist.  The cut went from above my belly button into my pubic area and it looked like a very long metal zip.

Apart from the anticipated discomfort and pain after a major operation I felt reasonably well.  I tried to remember the physio’s rapidly imparted instructions from the previous day.

At home the hacking cough disappeared, blood pressure became normal, and the dreaded snore was almost no more. Even the cramps in my feet eventually became less frequent.  I no longer had an urinary leak nor constipation.  Despite the pain from the operation I found our stairs easier and didn’t have to pull myself up using the handrail. Best of all, joy of joy, I slept through the night – and so did my husband. Amazingly I didn’t realise how ill I had been feeling until after the operation and I was getting better!  Who knows I might now be even able to sing in tune in the shower!  Now that is optimism for you!  Oh, and I didn’t have to wash my hair every day.

Some days later, after very long wait, eventually we saw the oncologist who said they had found Grade 1c ovarian cancer and we discussed the options.   It is decided that I would have Carboplatin and not Taxol.  I was still quite optimistic.  We yet again took out a mortgage for the hospital car parking fee.

Physically I was now feeling much better -  mentally I was now ****.  My mind started working overtime and I obtained information from Dignatus and made arrangements in my head for after I had gone.  My husband wasn’t sleeping – and it was not my snoring keeping him awake this time.  Even getting him to a doctor for a normal appointment is hell as he has had some very bad experiences which have scared him for life.  To go into hospital is a form of torture for him.  My usually very loving hubby was now clinging desperately to the other side of the bed and in serious danger of falling out.  He lost a girlfriend to cancer and feared a repeat – what with other things going on it was his worst nightmare.

A couple days later my exhausted husband lost control and threw a wobbly.  He simply could not face the thought of my cancer and taking me into the hospital. Mr I’ve Never Been So Happy turned into Mr I Want a Divorce and off he scarpered.  Well, if I could have remembered where I put my credit card, I would have got the divorce papers!  I went to bed, he returned.  The music went on downstairs blasting out lyrics about people splitting up –  later they turned to love songs! 

Next morning my lovely Macmillan nurse phoned re my forthcoming appointment and on sensing my distress said I could have hospital transport for the chemo and I proposed driving myself to the hospital for the blood test the previous day.

However, in the end, my husband drove me to the blood test and yet another long delayed meeting with the oncologist who was trying to cover for a colleague.   I signed the consent form.  I expected my husband to run when a patient sat behind us started to give really graphic details of her tumour being drained off! His blood pressure went up when he paid the hospital parking fee.  Soon as he got me to the “safety” of home he relaxed.

Mid June I arrived at the hospital for my first chemo.  The receptionist nurse was in a long and deep conversation with a colleague and didn’t even look at me.  Another nurse took my name and I was about to be taken through but the receptionist took over to tick my name off a list and told me my chair number – a one minute job.  My allocated chair was occupied so I sat at a table in the middle of the room, expecting the patient to be disconnected any minute.  Then I was directed to a tiny waiting room. 

My husband found me and sat with me.  We waited half an hour and the chair was still occupied.  On going back to the receptionist I was told they were running an hour and a half late as the pharmacy had failed to provide the chemo drugs on time.  We went to the cafe.  By this time I was really worked up and petrified – I wanted my treatment elsewhere, no WRONG – I didn’t want ANY treatment, I just wanted to RUN.  If my husband had not been with me I would definitely fled at full speed.

We returned to the chemo ward and I told my husband to go off, if he wanted, when I was called. He said he would stay but his eyes told a different story. I took the opportunity to ask him for a magazine from the shop so the needle bit would be over before his return.   

I was sat in a comfortable chair (“my” original chair was still occupied) and a nurse had three unsuccessful goes at getting the cannula in my vein before calling another nurse who inserted it first time.  I think half the problem was that I was really dehydrated after leaving home and waiting so long for treatment.  Made mental note to drink lots of fluids, take drinks in with me next time - and phone before leaving home to make sure they are not running so late!

Settled in the chair the fluids dripped in without problem and a drink was served.  My allocated chair remained occupied.  Towards the end my hand became swollen and very painful and a heated pad was applied.  After waiting about half an hour after finishing no one came to remove the cannula so my husband went to find a nurse.  Another half hour passed and still no actopm so he reminded them again.  Ten to five the nurse came to remove the cannula and told me to make sure to take the sickness tablet before five.  I said I had not been given any medication to take home and she dashed off to get it with five minutes to spare before the pharmacy closed.  I asked to take the sickness tablet before I left but she said it would make me too sleepy and it would be too late after five.

I was given some very rapidly imparted verbal instructions and an emergency telephone number.  I then had to wait for a blood form to be printed with the instruction to take it home with me.  I wonder how many patients lose these forms!  I decided being sleepy was far preferable to being sick so took the tablets as everyone else had stressed the importance of taking the tablets.  It took five hours in all for what I had been informed was an hour and a half chemo treatment.  Luckily we did not get a parking ticket!

On returning home I felt well enough to cook.  Even though my husband offered, I declined - memories of his beef and clove stew and the chicken stew with mint peas in were still too fresh in my mind.  I took the anti sickness tablets and we had dinner.  No problems until about two hours later when I was violently sick, and continued to be so for several times until about four or five in the morning.  I had phoned the emergency number to advise the number of times I had been sick but when they didn’t return the call as promised over an hour later I phoned again.  By midday the next day I was no longer feeling so nauseous.

I found out patients with cancer treatment are entitled to cheaper parking – in my local hospital – this was for the first hour.

Ovarian cancer I found was not well known and is badly publicised.  If one knew to look for ovarian cancer it was easy to find information – but put in your symptoms and it didn’t come up.  It was like having the ingredients for a cake but not knowing what cake I could make.

At my follow up appointment after my operation I said that I was amazed my large tumour had not been picked up in the gynae department.  The consultant said that they were just looking at urinary problems.  Well I expected a gynae department to be able to detect problem of that sort given the size of the tumour.  

 

Like many here, I have become an addict doing research, asking questions etc and looking for answers.  I came across a newspaper article writing on Professor Robert Winston’s research into female infertility wherein it mentioned that he found that women with ovarian tubal infections had higher levels of orgasms.  Elsewhere I read that ovarian cancer can start in the ovarian tubes.  Three years ago I went to my doctor as I was experiencing so many orgasms I knew it was absolutely unnatural for me and no doubt any OAP!  He suppressed his laughter and told me to enjoy it and said if I could bottle the secret I would make a fortune. For three years my sexual satisfaction was beyond most people’s wildest dreams.  I must have been the only woman not to have a “headache” in this time!  I strongly believe this now was the start of my ovarian cancer.  (You now know why I have not put facial photos on my blog!)  However, I feel I have a duty to highlight this as it might get someone to seek treatment sooner.  The usual symptom is painful intercourse but I certainly did not suffer!  I wonder how many of those examined who had an ovarian tubal infection would have gone on to develop ovarian cancer.

OVARIAN CANCER SYMPTOMS:   The symptoms range from bloated stomach, feeling full, frequent need to urinate and leakage, runs or constipation, pain in back, stomach or leg.  (I had what I thought was cramps on the top of my foot but none in my stomach); unusual bleeding, painful intercourse (or for me absolutely the opposite); tiredness.  It is important if you experience these problems for more than a fortnight to see your doctor and mention ovarian cancer.  There is no screening for this silent killer.   Pass on to your friends and help save lives.  Ovarian cancer is the No.1 killer of the female cancers.

Comments
  • Solent, you have been put through the hoop. Its unfortunate that ovarian cancer does not get picked up much earlier. But what you have been put through is terrible. I have ovarian cancer too. After l had been to my Gp l was send for a ultra sound scan which was a wait of two weeks which is nothing compared to yours. I was admitted for further tests CA125 and CT scan. My op was two or three weeks later. My cancer had spread which is why it was so quick.

    I hope you continue to go on ok best wished Rosie


  • I too have ovarian cancer primary, now I have secondaries mine was caught to late. Reading your blog I see things that happend are similar, but mine was and still is a horror story. I wish you all the very best . Take care ...love Carol x


  • I have been reading your blog and shaking my head at the amount of delays you have had to deal with. Unfortunately, we hear of too many cases like yours. It's incredible that if you go private you often find the surgeon is the same one who would be doing it on the NHS. Perhaps if they weren't doing so many private ops, we could get seen quicker on the NHS.

    I hope your treatment goes well for you and the delays haven't caused any further problems.

    Best wishes, Christine xx


  • Hi I read your story with disbelief and great saddness. Why oh why do people have to suffer more than necessary.

    I hope your treatment go's well and you have a full recovery so as you can enjoy your new great grandson.

    Lots of Love Julie X


  • Hi Jan,

              The delays you had to put up with are unbelievable.

    I know that cancer groups are trying to raise awareness of the symptoms of ovarian cancer but sometimes you don't have any until it is advanced, as in my case. Other times, it is obvious that something is very wrong and the doctors still don't act!

               I hope you are getting the treatment and support you deserve and wish you all the very best.

               Take care,

                   Love lizzie xx


  • Hi, I have ovarian cancer to,my gp sent me straight into hospital (i was bigger than my daughter who was pregnant at the time) and i was diagnosed within 3 days, surgery 6 weeks later ,now on chemo 2cycles left to have.I was also graded as 1c like you. It is terrible you had to wait so long for diagnosis and treatment.Hope your chemo goes well.Take Care, Sue xxx


  • Thank you all for your encouraging comments.  I have an aim in life - to raise awareness.  I log into the Daily Mail and anything that can be turned into a response about OC I respond to raise awareness.

    Some years ago I had a very successful blog which rocketed up Google Ranks.  I hopefully will achieve the same with this one.  Keep clicking the link and raise it up the ranks. Together we CAN do this, nothing is impossible.  If one life is saved then it is worthwhile.

    Love to you all xx


  • Hi solent

    you are absosutely right!

    Diagnosis with ovarian is really something that needs taking action on! you certainley have had a unecessarliy long journey on this, but to the shame of this country, your story is certainly not unique.

    Have you participated in the path finder study? link below- the more of us that do so the better the case will be. Target ovarian who are co-ordinating this study is  really doing good work campagning for greater awareness ( both women and medical proffesionals!) and better emotional support- they had a reception at parliament last week that I went to in order to lobby mps.

    www.targetovarian.org.uk/page.asp

    all the best

    Lin


  • Hi Linnet,

    Will certainly join target ovarian. org.  

    Jan x


  • hi i to have or hopefully post OV cancer your journey sounds like it wasa very long one although my doc was very good. i would not have had a clue  i had the big Ci went for something entirely different, the symptoms are very hard to define, i found the waiting game bad enough as it was 2 weeks for scan results 2 weeks for biopsy so on so on but what u went throgh is terrible..... forgive me if iv misspelt ect dropped my specs down the loo and flushed the bleep lences away ....silly as i am.... any way i wish u well with the rest of your chemo  love and blessings ..suex


  • You certainly have been through the mill, and I hope now that you are on the road to recovery. I have just been diagnosed with OC and should start chemo on 19th July.  I will be glad to get started and even more glad after the chemo is finished and I can get back to a more normal life.  I just have to learn, like so many of us, how to live happily and positively with the many follow-up appointments after treatment, and a happy outcome.  Keep on believing (as the song goes).


  • Susie you made me laugh - sorry - thinking of you flusiing your specs down the loo lol.  Hope you get a replacement soon x


  • hi solent . no dont be sorry. still no replacement, but the glasses thing just about sums up my memort these days, using  my old ones at mo which r not so stromg so please forgive any mistakes....love and blessings to all suexx


  • Hi Solent...

    my you've been treated so badly an let down..its a disgrace...i read on one of the comments about the surgeon privately was the same surgeon on the NHS...we too had what we thought was a long wait..3 months and our surgeon worked 2 days for the NHS an the other 3 privately doing the same surgery...the wait for you must of been terrible..to be in so much pain an distress an still not acknowledged is a disgrace...its so disappointing that some of these surgeons are in it for the money an not for the health of others these surgeons let down all the fantastic surgeons that there are out there.

    ...i hope you now have an easier time an things can get back to "normal" as soon as possible for you...

    I wish you all the best..

    love'n'hug's

    Donna

    xxxx


  • Hi Solent

    I was horrified at your treatment, not only the surgery part but also the chemo which sounded horrendous - my hubby started chemo yesterday and they scheduled an hour non-treatment so they could go through all the paperwork/instructions/information/medications with him.

    I hope the rest of your chemo goes well and you get to enjoy life fully as a newly-wed and a grandma.

    Love, Hilary


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