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Maureen's stage 4 ovarian cancer journey

Throughout my life I have always been fit and healthy, apart from colds and the odd bout of flu which I managed to throw off quite quickly. The only times I have spent a night in hospital were in 1967 and 1969 when I was having babies. During the summer of 2019, I noticed I was having very sharp pains, double up pains, just before I went to the toilet. I had similar pains before when I was pregnant all those years ago. At the age of 75, pregnancy wasn’t the cause this time! However, I wasn’t sufficiently worried to take matters further- hindsight is a great thing! After a few weeks I found myself feeling very tired and without much of an appetite. I had a couple of relatives with these symptoms who had been diagnosed with a virus and I just thought I had the same thing.

After another few weeks, and feeling no better, I decided I needed to talk to a Doctor so I completed and online questionnaire. The feedback to the surgery from this questionnaire suggested that I was given a non-urgent appointment within three weeks. Three weeks later I went to see a Doctor and during an examination I nearly jumped off the table when she pressed on my right ovary. The Doctor arranged for blood tests and for an ultrasound scan. The Sonographer who performed the scan on 15th November was obviously very concerned about what she found. She told me I had significant amounts of fluid in my lungs and abdomen and my ovaries were messy, or words to that effect. She also told me I needed to see a Doctor that night. My Doctor did ring me that night after the Sonographer had spoken to her and sent her the scans, and ovarian cancer was mentioned. My Doctor rang me on 18th November to say she was booking me in for a CT scan and the X-Ray department would be in touch. On the 19th November, as I was beginning to really struggle, not helped by the fact I couldn’t lie down in bed because of the fluid in my chest, I managed to see a Doctor. He checked me over, noted the fluid I was carrying and told me to go to see him again if things got any worse. On the 22nd November I was back to see the same Doctor because I was now looking quite pregnant with all the fluid, feeling very uncomfortable and beginning to become a little frightened. This time the Doctor checked me over and rang the Royal Derby to arrange for me to be admitted. I remained in the hospital until 30th November during which time I had a CT scan and a biopsy taken from inside my abdomen. I also had a drain put in so the fluid could be drained. I was told, during the week in hospital, that I had Stage 3 Ovarian Cancer. Shortly afterwards this diagnosis was changed to a serious Stage 4 Ovarian Cancer. I was initially admitted to a lung disease ward and then moved to the Gynaecology ward where I met a lovely Asian young lady who was confined to a wheelchair. There is always someone worse off isn’t there! You have quite a lot of time to think when you are in hospital, but I can’t say I was ever ‘down’. Adrenalin keeps you going I think and the nurses were so kind and helpful.

My husband and two sons were shocked and upset at my diagnosis, as were our friends. They couldn’t believe that someone who all her life had been so healthy and active could be struck down so quickly. However, we all know don’t we that these things do happen, just not to ourselves!

Anyway, I wasn’t ‘struck down’, just slowed off for a while. Over the next few weeks leading up to Christmas, I had a few hospital appointments and I was assigned a Special Nurse. Thank goodness for Special Nurses- they are angels in disguise and so caring. They watch your back and you never feel as if you are going through this difficult time of your own. I was lucky, because at the beginning of December, my brother and his wife came over from California and this was a distraction for both me and my husband. He would insist on visiting with takeaway meals- huge takeaway meals! It was good to see him, but I couldn’t get through to him that I didn’t have a big appetite. He never had a problem in that department bless him! Christmas was spent with our oldest son, his partner, our youngest grandson and our daughter in law’s parents, plus our sixteen year old granddaughter who was intent on looking after her grandma.

After Christmas, on December 30th, I was back at the Royal for tests on my kidneys which took most of the day. These tests are necessary to check you are fit enough for Chemotherapy. On January 3rd, I had a CT scan and on January 7th, and in depth dental examination. Again, these were checks prior to Chemo which was scheduled to start on January 10th. I was rather nervous when I went into the Chemo unit for treatment for the first time, but the nurses soon put me at my ease and looked after me very well. As well as having the usual Chemo treatments for Ovarian Cancer, was also having a trial drug having signed up for the ICON8B Clinical Trial.

On the day after my first Chemo treatment I felt OK, but I had a rough time that night. I couldn’t sleep because I felt I had phlegm in my throat all night, plus a headache. On the Sunday, two days after Chemo, I was urinating a lot and was sick in the evening. I didn’t sleep well that night because of stomach cramps and a headache. A lot of urinating again! On Wednesday night (15 th January), for the first time in three months, I slept lying down- YIPPEE! OK, I didn’t sleep very well, but I was lying down. I felt as if the fluid in my lungs had gone. The Chemo had cleared my lungs. The plan was that I would have six sessions of the two Chemo drugs and the trial drug, in three week cycles. Week 1 I had all three drugs (the two Chemo’s and the trial drug), and weeks 2 and 3 I had one of the Chemo drugs. It was planned that I would have a major operation between sessions three and four. About two weeks after starting Chemo, I had a nasty discharge from my womb. It lasted two or three days and that was it. At first Chemo did seem to take over our lives. As I was having weekly treatment, Wednesdays were blood test days, Thursdays were Oncology appointment days and Fridays were treatment days. Oncology appointment days were changed to telephone appointments when Corona took hold. Chemo didn’t stop me going out and about. I was still visiting garden centres with my husband and meeting friends for coffee and a chat, until lockdown came of course. I did suffer from some side effects, such as mouth ulcers and tingly hands and feet, but the worst ones were losing my hair (normal and expected), and nasty burns on my hands and feet. I also had red patches on my hands. Because of the burns, my Oncologist watered down one of the Chemo drugs I was receiving and that did relieve the problem over time. My magnesium levels dropped quite a lot during this period, and I did spend one night in hospital having magnesium intravenously. One thing I did learn during this time was to take it one day at a time. No point in worrying what was going to happen next week, or next month. Concentrate on today.

My Ultra Radical surgery for advanced Ovarian Cancer, originally scheduled for 18th March was postponed due to Coronavirus. At first I was disappointed about this, but then thought maybe it had done me a favour as my Chemo treatment continued, and maybe, just maybe, things had shrunk even more. Who knows? One of the dieticians at the hospital kept in touch with me regularly and asked about my eating habits. Fortisips (high calorie fortified drinks) were prescribed through my Doctor and did help to keep my weight up throughout Chemo. When you have been taking these drinks regularly for a while, they can become a bit too sickly and a bit much. If you water them down with milk they are more palatable, in my experience anyway. I had lost just over a stone from my original weight when I was in the early stages of Chemo, and by the time I was taken in for my rescheduled operation on 3rd June, I had regained most of that. I had several appointments at the Royal prior to my operation, one with an anaesthetist who was very pessimistic. He told me I would be in hospital for about five weeks- I was actually in for 17 days. I know they have to tell you the very worst that can happen, but really! Was it just him, or are all anaesthetists pessimists? I came off Chemo altogether for a few weeks before my operation and was feeling quite well.

I must admit that when my husband dropped me off at the Royal at 7:30am on 3rd June, I did feel a bit lonely (he couldn’t come in with me) and in a bit of a daze. When I was being prepared for surgery, I remember sitting on the table preparing for an epidural and thinking ‘I may not get out of here’. I don’t remember anything after that until I woke up in Step-down. Apparently I spent two nights in Intensive Care and I can’t remember a thing about it. I don’t remember seeing any other patients in Step-down either. I remember waking up and not being able to move my legs and remembering what I had been told about the rare possibility of being paralysed! Thankfully, my legs came back to life over a period of time. I couldn’t raise myself up to sit up either. I had quite a lot of tubes coming out of my body and it wasn’t easy trying to manoeuvre a fork or spoon between these tubes and into your mouth. I spilt some soup on more than one occasion. The Physiotherapists come to see you in Step-down, determined to get you moving, but don’t expect too much from you at this stage. I had a catheter in so I didn’t even have to get up to go to the loo. One interesting side effect of the morphine based pain relief I had was hallucinations. I woke up one night in Step-down and could see two strange looking cars parked in front of me with two adults in each one plus two children in one of them. I can remember thinking ‘this can’t be real; nobody is making any noise- not even the children’. I also saw strange things coming out of the walls. Needless to say, I didn’t have any more of that medication.

After one week in Step-down, I was transferred to Ward 209- Gynaecology. I now had company. I was in a bay with four beds and it was nice to be able to talk to other patients. My stoma nurse came to see me and made sure I could change the bag OK. I didn’t feel at all awkward about this as she was so kind and caring, and made it all seem perfectly normal. While I was on Ward 209, I developed an infection in my lung and was sent for a CT scan to check on it. I also developed a urine infection, but this was cleared up very quickly with antibiotics. In between having this CT scan and having the treatment for the chest infection, I was transferred to a room of my own with its own bathroom. I had mixed feelings about this, but understood the reasons for it. With Coronavirus around and me being classed as very vulnerable, it was thought best for me to be kept away from other patients. After I had been transferred to a room of my own, I was given intravenous antibiotics to clear the chest infection. Two or three days into this antibiotic treatment, I was part way through changing my stoma bag when I got a surprise- or should I say shock! My stoma bag was full of water and I got into a right mess. I rang for a nurse and they rescued me. I felt awful and very apologetic, but they said not to worry, it was all in a day’s work. I am glad to say the diarrhoea didn’t last very long, but it taught me to be cautious when changing my bag.

Once I was on Ward 209, the Physiotherapists started to work more seriously with me. They were very encouraging when I was using the breathing gadget that measures your lung capacity. They cheered me on so much I felt obliged to do better. They were so upbeat- I was in stitches half the time. They also organised aids to help me at home, a frame to go over the toilet and something to help me pull myself up out of bed. My youngest son sent me into hospital with a radio and headphones and, when on my own, I spent quite a lot of time listening to Smooth and dancing in my head.

I wasn’t very keen on the hospital food and ended up mostly eating sandwiches and jelly babies (sent in by my son), and Fortisips of course. I was in hospital from 3rd June until 17th June. During this time I wasn’t allowed any visitors which wasn’t easy, but I understood why. Once I got onto Ward 209 I was able to use my mobile phone and spoke to my husband twice a day and to other friends and family regularly. I was discharged from hospital on the evening of 19th June with a bag full of medication and instructions to get in touch with my GP surgery to arrange a district nurse for blood tests. My magnesium levels needed managing. Leaving hospital after a major operation is quite daunting. Will I manage? Will my husband manage? You do feel quite vulnerable. Needless to say, we did manage. My stoma nurse visited me on the Monday after leaving the hospital and was very supportive. She sorted my GP surgery out when they were less than helpful. I must admit that after three weeks or so at home, I did think I should be feeling better than I was, and I was told that I’d had a very big operation and it takes time to recover. So remember, be patient! I was still taking Fortisips to help my recovery.

About 10 days after leaving hospital, I had another urine infection. A short course of antibiotics in tablet form soon sorted that out- without resulting into diarrhoea I’m glad to say. On July 3rd, I had a follow up appointment with my surgeon, which went well. I was told that they took out all the cancer they could see, and everything they took out had cancer in it. This was good news!

Six weeks after my operation, I had another CT scan for comparison purposes and, just as I was starting to think I was getting somewhere in my recovery, I restarted Chemo. As I’d had five cycles of Chemo before my op, I thought I just had one more cycle to go. However, my Oncologist decided I should have three more cycles- a belt and braces situation. As I was still having trouble with my feetthey were very numb and tingly- he changed his mind and I had just one more cycle. Since my op, my blood pressure had been rather high and I had been put on blood pressure tablets for the first time in my life. I am still taking blood pressure tablets, but hopefully once all the chemical treatment has finished, it will settle down again. During his period, my stoma nurse visited me at home at increasing intervals. She did tell me that I may have jelly-like secretions from my decommissioned (my word, not hers) bottom and I am very glad she did, as this happened to me twice since she mentioned it. I would have been rather concerned if she hadn’t mentioned it. She also warned me that I may have a reaction to what had happened to me sometime in the coming months, or even after a year or more, and this would be quite normal. After having your body mutilated and poisonous chemicals put into your body, it wouldn’t be surprising.

Since I started on the trial drug only phase of my treatment, I have had headaches and stomach cramps (the stomach cramps didn’t last too long), aches and pains in my neck and lower back pain, and sometimes I am very tired. I have also had more magnesium infusions and my magnesium levels do seem to be rising. During September, I was called into hospital for a check-up after complaining of back ache and swollen feet and ankles. I was given a thorough check-up and sent home. The swollen ankles settled down, but I have noticed that if I wear tight socks they do tend to swell again.

As I write this, October is during to a close and, in spite of my aches and pains; I am pleased to say I am beginning to feel more ‘normal’. This is a great relief after a year of discomfort and hospital appointments. I hope this doesn’t make me sound ungrateful, as I couldn’t feel more grateful for the treatment and care I have been given from all the staff- Doctors, nurses, cleaning staff, support staffeveryone I have come into contact with. I and my family would like to give you all the biggest thank you you have ever seen. I have two more sessions of my trial drug to go and I am looking forward to ringing that bell as I leave the Chemo unit for the last time- for now anyway.

If you are reading this as a patient, you have probably had your own diagnosis. Please don’t think this is the end of the world. Every patient and every cancer is different, but if my story helps anyone to cope with their own situation, I can’t ask for any more than that. My stoma nurse once compared me to the Duracell Bunny- I just keep on going. I now have a cuddly Duracell Bunny sitting on the shelf watching and encouraging me. Good luck, God Bless, keep on going and don’t forget- one day at a time!

Maureen