Ovarian cancer

Hi 

my new wife (of four weeks) was diagnosed with stage 4 ovarian cancer. She has just had her 2nd round of chemo and is once again curled up in bed in pain sleeping off the effects of morphine sulphate.....

i cannot express my frustration, there just isn't the words...

we decided three years ago after I had a health scare with pneumonia and sepsis that we would sell up, buy a motorhome and travel Europe, we are fairly young (my wife is 53 and I'm 55) and lucky enough to be able to do this.

we come back to the Uk early after a month trip to Spain as my wife was not eating, losing weight fast and had no energy, after a blood test she was rushed into hospital and was given the dreaded diagnosis.

surgery was immediately ruled out and the panic for treatment stopped, after I lost my patience and phoned asking for an update and an idea of what was happening we were given an appointment to see a consultant and a date for her first chemo session - she is having the seeemingly standard treatment carboplatin and paclitaxel.

The only prognosis we got was probably years.... and that surgery was out of the question.

after the first session of chemo, day 4 my wife was rushed into hospital again with a high temperature and was found to be neutropenic (0.49) and anaemic, she was given 3 units of blood, plasma, antibiotics and fluid - 7 days later once again she was back in with a high temperature, it was a serious battle to find her an isolation room as I was worried she would be neutropenic again, luckily she wasn't (18) but once again after diagnosing an infection she was given antibiotics and plasma, the third week wasn't too bad and she had a couple of good days.

after the 2nd session (Tuesday just gone, it would have been Monday but she had a power port inserted as her veins are pretty none existent) she has gone downhill fairly fast, the problem seems to be with her passing urine and bowel movements, whilst I understand the bowel movements are relative to the amount of food eaten and she isn't eating much at all these days, she is drinking loads of fluids (as advised) her pelvis area is bloated and very painful, she doesn't complain about pain when she is passing urine but says that she has a tingling feeling when she goes, but the pain is just too much for her. Her temperature and blood pressure are absolutely fine and she says that in herself and in every other way she is fine.

once again she is not eating and is very emotional and in a lot of pain. I desperately wanted some advice so rang the ward at the hospital to seek advice as to what I should do next, they seemed annoyed that I had bothered them as they were busy (tgey had originally advised me to phone if I had any concerns) and suggested. That I took her to A&E or went to see our GP.

went to the GP and he was concerned with the amount of codeine that she was taking as that could cause constipation, he carried out an anal examination (which obviously didn't go down too well with my already upset wife) she had a urine test which showed blood and white cells in her urine, but after another blood test the oncology doctor said she wasn't too concerned... the GP suggested changing her dose of 60mg of codeine every four hours with 5mg (5ml) of morphine sulphate, taking movicol every 4 hours with senakot at night and a pessary when she feels she needs to go - this after saying that she was not compacted after the anal examination.... I feel that his lack of knowledge and expertise in the area of ovarian cancer may not be helping.... So I decided to do a little online reading up (probably not a good idea) I went to the cancer research Uk site and read all about blockages in the bowel and ascites - neither of which have been suggested or previously discussed....

cancer treatment seems like a cattle market, I trust the hospital specialist and respect their suggestions for treatment but feel that not enough is disclosed and I feel that there is no patient involmwnt in treatment options...

feeling angry, upset and very, very frustrated as well as totally knackered.

  • Hi Mike,

    What an unfortunate way to start your married life. You have described so accurately how many of us feel on this site. With regard to your wife’s emotional state, can I put your mind at rest and tell you that this is perfectly normal? We all suffer a raft of emotions and often many of them in just one day. We also cry a lot, but this is a good release valve.

    Do you attend your wife’s appointments with her? My husband always comes with me and he often has different questions to ask than I have. It is also a good idea to draw up a list of questions before any of her appointments and for you to take a copy with you and write down the answers. We all tend to get very up-tight when attending hospital and only retain a small amount of what is relayed to us by the consultant.

    If she is compacted, she won’t feel like eating. Are the combined medications helping at all?

    Your care team doesn’t seem to be very supportive unfortunately. I had this trouble when I was first diagnosed, but after 11 months I changed to a different consultant and hospital. This involves more travelling, but has been well worth it. I now have every faith in my Surgeon and his team and, it makes such a difference to have faith in the team who are caring for you.

    I would agree that looking on the Internet is not always a good idea. We tend to hone in on the worst case scenarios for our type of cancer and then convince ourselves that this applies to us. This isn’t always the case, so all we do is worry ourselves even more.

    Your wife seems to be having a tough time with chemo. I hope that it gets easier for her as she gets used to it. She can also be very tired as a result of treatment, let her sleep as and when she needs it. Cancer is a tough journey, not only for the patient, but for their families too.

    I hope that you can both make it through her chemo. She should pick up again after that is finished. Try not to dwell on the fact that it is inoperable, but concentrate on making memories together when she is fit enough. It is a pity that your trip to Spain had to be cut short, but I’m sure that you are glad that you decided to travel over the past three years.

    I am thinking of you both and praying for a good outcome at the end of treatment.

    We are always here if either of you want to chat.

    Kind regards,

    Jolamine

  • Thanks for answering and your comments, yes I go to all her appointments and stay with her as long as I can whilst she is in hospital.

  • Hi mike I was just wondering how your wife is doing and if you don't mind me asking how was it first picked up ? 

  • I'm sorry that you and your wife are going through this. I went through similar battles with my mum. One piece of advice I will give you is to ask for a second opinion, we went to another hospital after they said the same thing to my mum and they said they would operate. If you suspect a blockage then I'd get this looked into as soon as possible. How is your wife doing now?