Ovarian Cancer Raising Awareness

Just some thoughts ...........

2011-12-07T15:44:22Z

Never be afraid to ask if you don't understand
If you note some thing you feel wrong in the system - speak up. I found my chemo treatment was never ready on time and the wait was hours. Now in this particular hospital patients rarely wait as the gap between the oncologist writing out the prescription and the pharmacist making up the treatment was increased.
Be prepared to support others after you have finished your treatment.
The chat room is a good place to find support, particularly out of hours.

HOPE YOU ALL HAVE A PEACEFUL CHRISTMAS AND NEW YEAR xxx

Winning through

2011-12-04T18:09:49Z

The four monthly oncologist's appointment arrived. As usual sat and waited and waited despite my appointment according to the receptionist being the first. Another person went ahead of me - on enquiring I was told three appointments could be given for the same time! What the logic is in this arrangement I cannot imagine - it only leads to a rise in frustration waiting extra time, annoyance, raised stress levels - not to mention car parking fees.

Well the results were worth waiting for - down to just over 8!! Next time not even a blood test in four months. My husband turned from a highly anxious person to Mr Happy. Pity I had to live with Mr Anxious driving me nuts and highly stressed beforehand! Dealing with his anxiety has at time been worse than the chemo etc.

Doing well!

2011-08-19T22:53:28Z

Following my oncology appointment today I dont have to go back until the beginning of December . Great news. Had a different doctor yet again - funny only ever since the named consultant twice in all the time I have been under her.

He kindly explained a few things that I had been concerned about and my CA125 reading is only 10!!! So it looks as though I need a lot of execise to get rid of my ballooned stomach! With this in mind I walked to the pub for a quick drink to celebrate. Exercise is good they say !

FURIOUS - ANSWERS ON A POSTCARD!

2011-03-18T16:07:47Z

The hospital have written to me "there was no large ovarian mass at the time of the first two examinations". I beg to strongly differ!

Photo A – Taken January 2009 before my examination in May 2009.

Photo B – Taken March 2011 – same trousers.!! I can even put two hands inside them.

So if it wasn’t a large ovarian mass – what was it!!!! I didnt lose weight during chemo!

Boots to do Chemotherapy

2011-01-24T14:30:19Z

I read with absolute incredibility that Boots are going to do our chemo. No I have not been drinking. http://www.dailymail.co.uk/health/article-1349687/NHS-reform-Cancer-sufferers-given-chemotherapy-Boots-branches.html

Why were we not told about this when Paul Burstow MP visited Macmillan? That would have been an important discussion.

Boots is nearer than the hospital – it is the only thing I can find in its favour.

On the off side:

1. Parking needs to be immediately outside. Ambulances can drive through pedestrian areas - mere mortals have to find a parking space – and who feels like walking a distance. Where are the wheelchairs. What about the parking fees. Does Andrew Lansley the Health Secretary who has made this agreement with Boots realise that we do not have ministerial cars with a chauffeur and free parking. There is a limit on how long one can stay at a public metered parking slot. I suspect Lansley is used to private health care too.

2. There is certainly no room at the present Boots for these services.

3. Who is going to prescribe the anti sickness tablets. Will there be doctors on site too. What about reactions to chemo.

4. Who is going to provide the 24 hours emergency care.

5. Who is going to take care of the records – hospitals lose them even under the same roof.

6. What is going to happen to the Macmillan services in the hospitals. No one is going to make special visits to a hospital just to go to the centres. Macmillan nurses do not do nursing so are unlikely to go to off site Boots centres.

My lovely Macmillan nurse is key in my treatment. She understands my fears. If I have a problem it is her who always sorts things. I don’t want her flitting from hospital to Boots.

Is this a plot for next year’s pantomime or Carry On film? On the other hand if Boots were to do walk in ultrasound scans, particularly for ovarian cancer I would have been impressed. As you can guess I am not all all impressed and wonder what other cancer patients think of this scheme.

Three month check

2011-01-19T08:37:15Z

The three month check is due on Friday and I have had my blood taken in preparation. If I do not get the all clear I will be devastated. Not so much from the treatment point of view but it putting my life on hold. Already we want to do things but have to wait the results "just in case". Last year was a constant wait as we went from one medical appointment to the next. Don't know if it is just me but I would like to be able to access my blood results and scans so I can have a look for myself and not have to wait for the appointments. I hate being in limbo.

The holiday was a disaster. The apartment was bitterly cold and I slept with a cardigan on - unknown of where on the coldest night in UK I am pushing off the one blanket as I am feeling hot. Well at least I had meals put in front of me and I only went out twice in the whole two months. My energy levels were so low that I could not even finish one dance. Maybe this is not the chemo treatment but more to do with when I collapsed before Christmas. Got a strange pain in my stomach and an indentation I can stick my finger along which I reported to my lovely Mac nurse and will be checked out on Friday.

I know - I need a holiday to get over the holiday!

Roll on the holidays

2010-12-14T11:14:47Z

I should be feeling on top of the world with holidays coming up but I am not. The chemo brain shows no sign of disappearing - I am feeling constantly fuzzy and is made worse when I try to do anything. I am going in circles my brain doesn't want to think straight. Cooking is a nightmare and takes so long. I forget about pans put on and light ovens without remembering to remove the contents. No accidents but it greatly concerns me. I am struggling to remember things that should come off the top of my head. I have given up on earrings as they are too fiddly to put in and the holes are now sealed. and I feel scared - which I know is silly as I have nothing to be scared about.. I wander around of a night unable to sleep as though I am in the midst of an unseen nightmare.

Given a choice I would go to bed and not get up. Roll on the holiday and some rest where I dont have to think about anything. Perhaps it is sub concious fear of the next hospital appointment.

Remission and ramblings.

2010-11-15T22:09:24Z

It's there in black and white on the insurance letter - I am in remission!

I had been complaining for some months now that I was feeling as though I was walking like a drunk. Well I collapsed. I was just stood in a crowd not doing anything and down I went and got stretchered off. My pulse was racing.

I was sent home with instructions if I didnt feel well not to bother with the doctor but to dial for emergency services. I took it easy but my heart was racing and I had to go and see the doctor. The ECG was ok, and he took another blood test. My pulse was racing and he gave me some beta blockers. These worked! My heart stopped racing, the dull ache in my head and chest went. At night I no longer wake up feeling like a furnace.

During my chemo my blood pressure was taken only a couple of times. On reflection I feel perhaps this should also be done when they do the blood test.

I suppose now the doctor will have to find the root cause of my racing pulse. I am not too worried as I intend booking a holiday as I am feeling well - the best I have been in a very long time.

CT scan result following chemo

2010-11-02T14:59:45Z

Having been told I had a nodule in my stomach following the CT scan I was alarmed as nothing had been mentioned previously. It is 13mm and could be scar tissue. It has not got larger since the chemo. There is another the same size in the skin of the bowel and I am told it is not in the bowel. My Ca125 results are good - down to 8.8 and 30 is normal. I am told the Ca125 blood test will also monitor the one outside the bowel.

My blood will be tested a week before my next appointment and a follow up scan - so I am keeping my fingers crossed.

In the meantime my Mac nurse is going to get the doctor to confirm on my medical record that he considers me fit to travel. Some insurance companies request this information. Now all I can do is try and remember which company I was looking up when searching for holiday insurance!

Eyes are still not right from cataract operation. but it is early days.

Absolutely bewildered and in shock

2010-10-30T11:14:31Z

Went for the results of my CT scan to be told there was a nodule still and I would be monitored. I saw the large melon size one on the right hand side and another about the size of a penny on the left hand side when they were doing my ultra sound scan. I understood both ovaries and tubes were being taken out........................... so where is this nodule. Why didnt they take it out when they had me on the operating table.

I am completely shocked and bewildered. They weren't going to give me the last chemo so I took this as a sure sign that all was well. I have to go for a blood test in January. Now I will be worried all the time about this nodule - why couldnt they have taken it our!

Why wasn't I told about this nodule. I was offered Carboplatin +/- Taxol. I would definitely have had the Taxol if I had known about the nodule. The oncologist recommended just the Carboplatin as there was no sign of spreading or cancer cells in the wash.

Sixth of Six Chemo

2010-10-07T13:30:39Z

Sixth chemo over - great. Again it was a couple hours late starting with long delays inbetween. Noted that actual nurse time was 15 minutes but they were rushing around at chemo treatment was two hours late arriving and they were short staffed. Have used work study experience to suggest a new system, which if I am right in thinking where the delay is being caused will help both patients and the poor nurses.

After the first chemo I was sterilzing absolutely everything in sight. By about the 4th I was back to normal hand washing and wiping around with disinfectant/bleach but not with the intensity and frequency I was before.

Not been sick again. The one tablet works for me! On the down side my memory is absolutely terrible and today I again left the heat on under the empty pan. I am finding myself accident prone and burned a hole in the carpet, dropping things and walking like a drunk. Hopefully this will pass - but if the treatment has saved my life then it is a small price.

Now I have to wait for the CT scan next week and results just over a fortnight later. Flu jabs etc next week - and hopefully thereafter my calendar will go back to normal. I won't miss the treatment but will miss my lovely Mac nurse who has been great though I don't think she will miss this pain in her neck.

Got a brief holiday booked in UK to look forward to and then in a few months time hope to go further. There will be insurance to sort out.

Life is on the up and it is great.

Hugs to all and keep your chins up.

Jan xx

Side effects catching up

2010-09-19T13:28:48Z

From going through chemo fairly smoothly I am now walking around like a drunk, dropping things and feeling very unsteady and depressed. My memory is terrible and I cannot hold things as before as my hands cramp up and the hand looks as though it has got arthritis in it. Had a bad reaction to the last lot of chemo and I am wondering if this has been the cause.

Still only one more chemo to go and then a scan a week after. This is quick so hopefully it will mean things as all over with and I can get back to a normal life.

Oh for a proper holiday but cant sort out insurance etc until I know the results of my scan.

Fingers crossed!

Chemo Brain

2010-08-18T18:00:01Z

Fourth chemo. Came home and cooked dinner. What should have taken half an hour took nearly two hours as I went round in circles. Chemo is going well - just hope this feeling of being completely drunk goes. Mind you it is a cheap way.

Feeling positive though very hot.

Fund raising

2010-08-14T09:20:47Z

The government destroys wines, cigarettes etc that people have not paid duty on. This is stupidity. They should allow charities to pay the duty and sell the goods to raise money. The government too would benefit by receiving the tax. Is this too simple, or am I missing something.

Ovarian Cancer - Why Didn't the Penny Drop?

2010-07-19T14:07:57Z

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 1^st 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 7^th 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.