Eileen's story. She was diagnosed with pancreatic cancer in 2012. She talks about her continuing chemotherapy treatments.
Eileen, 68, diagnosed in 2012 with operable pancreatic adenocarcinoma, and had a recurrence diagnosed in May 2014
In February 2012, I was happily getting on with my life. I was working full time as a Registered Nurse in a busy nursing home, and looking forward to a holiday in the sun in March. On 26th Feb, I worked extra to cover sick leave, and the staff kept asking me if I was OK, as I was ‘a funny colour’. I had felt tired, and my skin was dry, but otherwise I was fine, I put this down to long hours and cold weather, and thought my holiday would sort me out.
Next morning I went to see my GP, on my way to work, and he sent me straight to our local hospital for tests. As I was very jaundiced by this time, and incredibly itchy, I had an ERCP to have a stent fitted. I had to cancel my holiday, which was disappointing, as I did not realise the seriousness of my condition at this time. Even though I am a nurse, pancreatic cancer is not one I was familiar with, and I didn’t know anything about it.
I was referred to a specialist in Liverpool, as tests were inconclusive, and had an appointment to see him on 15th March. He told me I probably had pancreatic cancer, as there was little else it could be, and arranged for me to be admitted for surgery. He gave me lots of information, and I had the opportunity to ask questions. At this time I still felt relatively well, just tired and itchy, and I didn’t really feel any emotion from the diagnosis, although my family were very upset.
I was admitted on 3rd April for a Whipple’s operation the next day. Surgery went well, with no major problems, just the usual pain and nausea. However, I had major hallucinations with Oxynorm, and had a very bad few days post surgery.
I found my taste had changed dramatically, and nothing I had liked prior to my op. tasted nice, I was very limited in what I was eating, and the dietitian became involved. Eventually, after several months, my taste did return but there are still things I don’t like.
During this time, I had no fears or worries, and I put this down to my faith. Prior to my admission, my priest had visited and prayed with me, and gave me the sacrament of the sick, which calmed me, and got rid of the small niggles and worries I had over the surgery. As I was in post-op recovery over the Easter period, I know he prayed for me (and others) during the services, and I feel sure this helped. Prayer is a very powerful tool, and while I did not think I was very religious, I gained great strength from this.
After my first check-up after discharge, I was told I had the option to have a course of chemotherapy to make sure all cells where eradicated, and I readily agreed to this. I had 6 cycles, and no major side effects. I felt very nauseous, and tired, but anti-emetics helped, and I was able to get on with my life.
At this time, I decided it was time to retire, and not get stressed again. Cancer did have the effect of making me re-think my life. I didn’t lose my hair over the chemo; it just became thin, but has grown back thicker than ever. I had to take things easy for quite a long time, but started with small walks, before getting back to my usual regime. I try to stay reasonably fit, and think this all helped to keep my recovery easy. I have always been a positive person, and still am, though now I try to live a full life, and grab it with both hands. Life is too short to waste time, and we none of us know long we are here on this earth.
I now try to support cancer research, and agreed to be on a research programme, trialling chemo drugs. This will be a 5 year study, and I am checked every 3 months. I hope to do the Race for Life this year, with my local gym group, and have been asked to speak at the event.
Hopefully, my cancer will not return, but I try not to think of this, and just live for today. Since my diagnosis, I have spoken to so many people who have lost someone from this cancer, and have realised how bad it is, and the need for more awareness, and I am quite content to talk to anyone who will listen to me about it.
Eileen’s reaction to opiates
Following my surgery, I had pain and was prescribed analgesia, in the form of Oxynorm, and had a PCA to help keep the pain under control. As a nurse, I was aware of all interactions and possible side effects, so didn’t feel the need to add this to my initial story of my brush with cancer, but speaking to family, I realise it may help others to be aware of the potential for problems. I was catheterised, and developed a urine infection for which I was given an anti-biotic. Over the weekend following surgery, I became confused and disorientated, and suffered dreadful hallucinations. Every time I closed my eyes, I could hear weird conversations going on around me, and I felt sure the night staff were trying to murder me, and had already done so with a fellow patient. I was frightened to go to sleep, and also to press my PCA button, as in the logical bit of mind, I knew it was the result of the drugs. I was in constant pain, and the staff kept telling me to have more pain control, but I told them it was having an effect on me.
Nothing was done that day, and I continued to hallucinate, I tried to pray, but could not remember the words to everyday prayers, which was even more frightening. Eventually, this all caused me to have a panic attack, which shot my blood pressure up. The house man was called, and did an ECG, which was repeated every 15mins as they thought I was having a heart attack. I tried to tell him what was wrong, but he didn’t want to listen.
The drug was changed at this point though, and I was then given an anti-hypertensive drug, which I was unaware of at the time. When I became more aware of myself and events, I asked what the pill was they had given me, and was told it was because I had high blood pressure, I told them this was not the case, and after a couple of days, it had to be stopped as my blood pressure dropped too low.
Over the next few days I returned to normal, and had my discomfort under control, and continued with my recovery. A reaction to Oxynorm has now been noted in my records, so hopefully I will never have to go through this frightening experience again, and I hope other sufferers will be aware of, and possibly prepared for, the effect drugs can have on anyone.
It is important for doctors and nurses to listen to patients, which they are often too busy to do, and to take note of what we say.
Eileen was diagnosed with a recurrence in May 2014
Following my surgery and chemotherapy in 2012, I have had a full life, getting on with things, and feeling fit and healthy. I had lots of interests and was glad to not have to go to work, as I didn’t have the time. In 2013, I developed an incisional hernia which caused me a lot of abdominal discomfort, and this was repaired last October. I was out of action for several weeks, but carried on after this.
In March 2014, I started to feel a little unwell, mostly digestive and abdominal problems. I saw my GP, who prescribed Fibogel, then Fibogel with Merbeverine, which didn’t really help much. I lost my appetite and a little bit of weight, and felt tired all the time. He thought it may be IBS, or maybe a gastric virus. As I was due for my usual 3 monthly check-up with the surgeon, my GP advised me to talk to him, as it was so near. I saw the surgeon on 15th April, and he was concerned about my symptoms, and the abdominal tenderness. He also told me the hernia had recurred, so I thought the problems could be related to this. All my blood tests at this time where normal. He arranged for me to have a CT scan and Gastroscopy, repeat bloods and he would see me again in 6 weeks. I went back on 27th May, after the CT scan and gastroscopy. I also had my bloods taken again, one of which was the tumour marker, CA19-9. At this time, I saw the pancreatic nurse specialist, who I knew from previous visits and get on well with. I had in fact started to feel much better by this time, and the gastroscopy had shown nothing unusual.
However, he gave me the devastating news that my tumour marker was raised slightly, and the CT scan showed spots in both lungs which were suggestive of a return of the cancer. He talked me through various options, and said he would arrange for me to see my oncologist again, probably the following week. He also said there would be a multi-disciplinary team meeting the following day, to see if all agreed with the results. He rang me in the afternoon to say the oncologist could see me the next day, and would let me know what time. He rang again the following day, to say the meeting had been done, and all agreed that the spots where metastatic, and I could see the oncologist that afternoon, at Clatterbridge Cancer Centre.
28th May, I went to see the oncologist, who again talked me through my options and offered me 2 choices of chemo. He told me they were both very aggressive with major side effects. One of the chemo was still on trial, and I didn’t feel ready to try something at this level, I felt I had already been on a trial, and chose the other option, Folfirinox. It was all going backwards and forwards in my mind; I spoke to friends and tried to look up statistics, but just got myself tied in a knot. In the end, I just wrote down the pros and cons and made my decision. I don’t think at this time it all really registered in my mind, and I didn’t appreciate how bad the side effects could be. 2weeks later, I had a PICC line fitted, and started the chemo the next day.
As I had been getting a lot of back pain, I was sent for another pelvis CT scan, which showed degenerative disc, but no sign of bony metastases. After 50 years of nursing, with no lifting equipment when I started, this was not surprising, and had been a problem for some time. On 17th June I went to the Linda McCartney centre, at the Royal Liverpool University Hospital to start my treatment. This consists of four drugs, administered one after the other, with the last one being attached to a pump to come home with, and then removed after 46-48 hrs. I felt ill, and started vomiting before the last drug was administered. I also had some facial distortion, couldn’t take cold drinks, and at times found it difficult to talk. The vomiting continued for over 24hrs, and I was admitted to Southport General Hospital, for re-hydration the following day. Life didn’t get any easier, and after the 2nd treatment, I washed my hair and 90% fell out in one go. This was again devastating, and I cried for 2 days. My sister in law took me out to buy a wig, and once I got used to it, and started to put on some make-up, I felt better. By this time I was at a very low ebb, and felt I was not going to survive the treatment, let alone fight the cancer. I think my brain, sense and logic went flying into outer space.
I saw my Dr again on 15th July, and told him I wanted to stop the current chemo, but he was not happy for me to do so, and my family didn’t want me to give up. He said he would reduce the dose by 20% which should help, and gave me a week off to recover. By this time, I was feeling a bit better again, and had got my brain, sense and logic back. I also had time to assimilate all that happened in the first 3 wks. I felt much better emotionally, though not physically, and got my positive attitude back.
I have now had a lower dose, which has helped with the side effects, and although I still feel tired and nauseous, I am not letting it get me down. I am back to my usual self, not much energy, and living life one day at a time, but I am hopeful of a future, and have things I still want to do and see. I am not hiding behind my diagnosis, and am happy to talk to anyone about it. I am looking forward to a holiday in Rome in September, and my Dr has promised me I will be able to go.
After my 3rd treatment, I met the lovely Macmillan ladies from ‘Headstrong’ who gave me advice on the care of what little hair I have left, and provided me with a very nice scarf, and advice on alternate headwear to use instead of the wig on hot days. I have now got used to the wig, after initially feeling everyone was staring at me when I went out, and would know it was a wig. The ladies also booked me in for a ‘pamper day’ in September, when I will have a facial and full make-up lesson, a very welcome boost to my ego I think. I am looking forward to that treat.
In between all my appointments I did the Race (or rather walk) for Life, which I enjoyed immensely, and was proud to be asked to get up on stage and speak about my cancer. I have never used a microphone to talk to so many strangers before, but I found it easy. I tried to get across an awareness of the need for more research, and its importance in future treatment, especially for me, as by this time I knew I needed further treatment. I hope to be able to do it again next year. Life is too short to be miserable, and none of us know when our time will be up, so I get on with life to the best of my ability. We none of us can know what the future holds, and I feel it is important to get on with life, and live it as fully as I possibly can. Once my treatment has finished, I plan to do some travelling, and see the things I still have left on my ‘bucket list’.
Our wonderful day doing the Race (or rather walk) for Life, I am the one in all purple on the left of the photo.
Eileen continued to have chemotherapy from November 2014
From November 2014, I have continued to have chemo. Initially, I was being treated with FOLFIRINOX, and more recently Gemcitabine. I hadn’t thought of what would happen when I got to my 12th cycle of chemo, or what the future held. I saw my oncologist in December, and we discussed having a break after Christmas, so I could go on holiday, and then continue on the same regime. I think I had supposed everything would be OK after these 12 cycles, how wrong I was!
In the middle of December I was referred to a surgeon, to see if a repair of my incisional hernia was possible, as it was causing me some digestive problems and discomfort, and a big increase in the number of enzyme capsules (Creon) I was taking. He said this was not feasible, due to my diagnosis of secondaries, and I was too high a risk of spread again, so I was referred for an ‘appliance’. This turned out to be a wide type of elastic belt, quite comfortable to wear and very unobtrusive. I felt a bit happier after this.
I had a break over Christmas, so I could enjoy the time with my family, and then had my PICC line taken out. We had a wonderful week in Istanbul instead. I had 9 weeks without treatment in total, and felt human again. I was able to get on with my life, and back to my voluntary work with my church. I also went back to my gym, and was enjoying life again. I had a scan at the end of January, and although I told my oncologist I didn’t want to know the results until after my holiday, he rang me to say it was good news, and I was in remission, which gave me a great lift.
At the end of February, I had the PICC line reinserted, and saw my oncologist to discuss the future. We agreed I would go back on FOLFIRINOX, as he felt after the long break I would manage it a lot better, as I had been very tired and weary on it before Christmas. I had to stop all my activities again, and just rest.
I had a further 3 cycles, but felt ill most of the time, and too tired to do anything for about 10 days out of the 14 between treatments. I saw my oncologist again after this, and it was agreed I could change my treatment to Gemcitabine. I also had a scan, and the blood tests for tumour markers. These proved to be disappointing, as my lesions had now grown, and my blood markers had increased. As I was not having any symptoms from these lesions, my oncologist said he was not too concerned, and it was probably due to the long break and change of treatment. We agreed to continue with the same regime.
I have treatment once a week for three weeks then one week off. I am able to function again, although still very tired and lacking in energy. My oncologist gave me steroid tablets, as these can help give me more energy. But they had the opposite effect, and made me feel very ill, light headed and dizzy with increased nausea. So I have discontinued them, and feel OK today, after my chemo yesterday. I also had been having severe facial flushing, which I no longer have.
I am back at the gym, and able to get on with life, although not able to do any voluntary work. Side effects include nausea, but controlled with anti-emetics over several days. I try to rest a much as I can and do things on my week off. I have not planned any holidays, but have a family wedding in August, which I am looking forward to, and several days’ outings. I am also planning to go to London on October to see Cliff Richard at the Royal Albert Hall.
I managed to do the race for life again this year, but with difficulty, so I think this will be the last time. I try to stay positive, and not think about what the future holds, I just live for the moment. Tomorrow is another day.