My name is Christine Shippen, I will be 60 this year [2010]. I am married to Dennis and have two children, Lisa Marie and Andrew James. I have Epitheliod malignant mesothelioma.
Christine with husband Dennis at son Andrew's wedding
Back in 2006/2007 I kept getting chest pains and was treat regularly with antibiotics as these pains seemed to come in cycles. There were times when the pain did disappear, but came back sometimes with a cough. In the beginning I don’t remember being breathless. I did eventually get referred to hospital and sent for an x-ray and the outcome of that visit was the lungs were fine and the doctor told me I probably had pleurisy followed by pneumonia. I was relieved as I had a diagnosis at last and was actually, at that stage, recovering from it and would get better and that would be that.
Not so, the pain did come back. I went back to my GP and all these different doctors I saw at my first practice could never hear anything on my lungs, not one of them. This occurred again and because I stupidly told this female doctor I had been trimming the hedge she came up with muscular pain, well I could have stayed at home and diagnosed that one myself and started to feel insulted to say the least. She sent me off with brufen and paracetamol which I already had a stash of.
...... with Lisa Marie
In January 2007 I was referred back to hospital, further x-ray showed fluid on the right lung, nothing was done at this stage and I don’t remember what the doc said at this time as I didn’t make a note of it, but cancer was never mentioned. The lung wasn’t drained. Maybe there wasn’t enough fluid there to worry about and the doc decided it was pneumonia again and it would drain away itself. I did get a breath test and remember the nurse telling me to try harder and thinking at the time that I was trying my best.
The pain did go away as it always did and when it came round again I saw yet another GP who was very brusque with me, I had got the last appointment before the weekend and wanted to get through the weekend with perhaps something stronger now. As usual, she couldn’t hear anything on my lungs and actually gave me nothing stronger than brufen and paracetamol and told me if the pain got worse to come back in a week.
That weekend [26th January 2007] the pain did get worse and my son called the GP out and he admitted me to hospital as he was concerned with my breathing. Whilst there I got more x-rays and was told I had a chest infection and sent home with antibiotics and painkillers.
Christine pictured with her brother Peter at son Andrew's wedding
In between all this I started a temporary job at the local police station and would walk to work and on those mornings would stop and pretend to be checking my shoe laces as I was so breathless. I would get the bus back home. I tried covering up what was happening with my health and would make appointments, including hospital ones, outside my working days as I only worked two days per week. I had to give the job up when my health steadily got worse.
In June 2007 I decided something worse was happening and changed my GP practice. The very first doctor who examined me heard something and sent me immediately for a chest x-ray. He also checked my BP and said it was high and would have to keep an eye on it. I got excited [how sad is that] but then thought God, how many x-rays is it going to take and trotted off again to x-ray department. The GP also gave me more antibiotics which must have done nothing at all for what was the matter, but I did stay free from colds and must have seen off any odd germs that were lurking about.
On 22nd June 2007 I had to go back to GP as pain got worse and saw a lady doctor who prescribed Tramadol. Now when I saw this doc I could hardly raise my voice and the breathing was bad, my daughter took me to the surgery as I couldn’t have made it on my own. I don’t drive, but could not have managed the bus on my own. I told her I had an x-ray and she rang the hospital to ask for the results. It was fluid on the lung again and she arranged a scan to get to the bottom of all of this. I didn’t even have the strength to pull open the door to leave the GP’s room.
The Tramadol was making me sick and the GP actually rang the house and asked how I was and my husband told her I was being sick and she prescribed anti-sickness tablets to take with the Tramadol. I was still being sick after taking the anti-sickness tablets, so I stopped taking Tramadol.
On the 3rd July I woke with a nose bleed which would not stop. I didn’t panic, thank God, as to be honest I thought it would just stop by itself. It didn’t and my husband sent for the ambulance and I went mad with him as thought I was wasting their time. When the paramedics arrived they said I had to go to hospital as they couldn’t stop it either. I had to sit on a bed in the hospital for well over an hour with a wad of bandage over my nose which they kept checking and changing and when they were satisfied they let me go home. They did say my BP was so high that perhaps the nose bleed was better than a stroke!!! They said I was lucky, well I would rather have a nose bleed than a stroke. The trouble was these nose bleeds kept coming on me for well over a month and then totally disappeared.
4th July 2007 had my long awaited scan; I walked out and must have scared everyone else waiting as my nose started bleeding. The staff wouldn’t let me go home until it stopped and I said I had been in Casualty the day before and they sorted it all out and I knew what to do and just waited until it stopped.
My GP rang prior to scan to see how I was and advised me to take an overnight bag as she thought I would be admitted after the scan. When I wasn’t she got in touch with the hospital and was told I could either go and sit in Casualty or wait for a clinic appointment which could take months. I decided to go and wait my turn in Casualty. After another x-ray, (I could nearly do it myself by this time) I had fluid on the lung again but it’s like action replay, you just want to move on to the outcome not keep getting x-rays etc. I was offered a lung drain.
Well the lung drain was an ordeal as they had to go in three times. The doctor who was supposed to do it went home and he got a much younger one to take over and she was nervous and then asked another one to help after the second attempt. They got over a litre of fluid off and sent some for analysis which later came back as normal. I was at the hospital from 12.55 pm – 8 pm.
23rd July 2007 was my first time seeing Dr. Mark Weatherhead, Consultant Physician, Respiratory Medicine at the Wansbeck General Hospital. We discussed the results of the lung drain etc., and told it was probably not cancer. He was going to send me for more tests.
24th July 2007 my GP rang to see how I was and what progress was being made with the hospital.
14th August 2007 Ultrasound of pelvis and abdomen.
16th August 2007 more x-rays before seeing Dr. Weatherhead, haven’t kept a note of what was discussed with doctor.
14th September 2007 another ultrasound, this time of the ovaries. They actually couldn’t find any!!!! Was told that was a good sign rather than a bad one. Left feeling like a reject and a dried up prune!!!!!
Saw Dr. Weatherhead after another x-ray and he told me we can no longer discount cancer. This is mainly because of the return of fluid on the right lung so quickly after the drain. He was meeting with colleagues at the Freeman Hospital in Newcastle to discuss keyhole surgery [VATS procedure] and the use of talc to stick lung back up as it was collapsed.
18th September 2007 received phone call re date for keyhole from the Freeman.
24th September 2007 admitted into Freeman Hospital.
25th September 2007 Keyhole surgery.
When taken onto ward afterwards I was attached to a morphine drip [everyone was] and I was sick every day afterwards until the patient in the opposite bed told me she was sick as well and she thought it was the morphine. I kept asking for anti sickness tablets, which they gave me. I stopped topping up the morphine, but the nurses would check and when they saw I wasn’t using it they would press the button, so in the end I was missing seeing the doc on his rounds as I always had my head down the toilet. I took the morphine machine off and stood it in the corner and I got better real fast after that. I should have been out on the 26th but practically had to escape to get out on the 29th. No one told me the outcome of the biopsy whilst in hospital. I did miss the doc doing his rounds as always in the loo being sick, but no one went out of their way to come and talk to me whilst in the Freeman and I didn’t ask as I was hell bent on getting away from the morphine and hallucinations at night and just being sick all the time.
Had stitches taken out by District Nurse.
11th October 2007 went to see Dr. Weatherhead and because nothing had been disclosed to me at the Freeman and I actually felt a lot better since my lung had been stuck back up and the only pain I had now was where they had done the biopsy, which was to be expected. I was actually feeling happy and it didn’t dawn on me when the nurse came and called my name and then said to me that we were going in to see the doctor now. Well I had seen Dr. Weatherhead on several occasions by myself and thought that was strange. I was again by myself as I told my daughter who had brought me that I wouldn’t be long. Dr. Weatherhead told me I had a form of lung cancer, Mesothelioma, something to do with being in touch with asbestos. Had I worked in the ship yards!!!! Well I wasn’t expecting that. I remember Dr. Weatherhead asking me if I could remember what he said to me the last time he saw me. Of course I replied that he had told me we could not discount cancer. Then he told me about Meso. I looked over at the nurse and read her badge and it said Marie Todd, Lung Cancer Nurse. I asked him how to spell meso. He told me Marie, the Lung Nurse would give me all the relevant literature later on. I asked how long I had left and he said at this stage he didnt know until after they had studied the scan.
I then started crying, but not weeping, it was the shock really and then I thought of my daughter and the rest of my family, there is no easy way is there? The lung nurse went and got my daughter and she had to tell her, I couldn’t. We sat outside in the car in a daze and my daughter started ringing immediate family. I was numb, couldn’t cry, didn’t know where I wanted to be and couldn’t handle people’s shocked reaction. I don’t know really, I didn’t cry a lot as I found I had to be strong for family members and close friends. It was like being present at your own funeral.
I am a Catholic and my belief in God is very strong and I know this has helped me and also in accepting what has happened to me and my family and close friends. I thank God that I have been able to come to terms eventually with it all, there is nothing I can do about it and what time I have left I want it to be good, until life sticks its oar in!!! So to me I guess I try and ignore the cancer and just get on with life like before. Obviously I cannot do the things I used to, I love gardening, but now I just potter and get help where I can with the upkeep. I hate fuss and people feeling sorry for me, I feel insulted as we are trying to fight this disease and hopefully one day, who knows, fellow sufferers may live longer or maybe even a cure will be discovered. Meanwhile, as they say, life goes on and it’s what you make of the time you have left.
On the 15th October 2007 I had a CAT scan at the Wansbeck now they know where the tumour is hiding.
On the 18th October 2007 I met Dr. Mulvenna, Oncologist. I went with my brother, Peter and my daughter, Lisa Marie. We were shown the x-ray of the right lung and you could see the thickening at one end of the lung and there were also little dots which we were told were lymph nodes. I was told the cancer was in the early stage which meant I could have a new chemo developed by scientists here in Newcastle in 2005. The cancer was not life threatening at the moment.
On the 25th October 2007 I received my first lot of chemo. 9 a.m. – 4.30 p.m. I didn’t realise it would take 7 hrs. They discovered I was anaemic.
I was given tablets for every side effect I may have which made me feel a lot better as my idea of chemo is hair loss and sickness. With this kind of chemo there would be no hair loss.
I have to say that the whole chemotherapy experience was a lot better than I thought it would be. To me it was like being in a long sitting room in comfortable chairs and the staff were brilliant, music was played, food was provided which made the chemo part a lot easier to handle for me.
I was given some literature from the hospital which I found quite depressing, there seemed to be no hope in these booklets, death was inevitable and even one lot of literature I downloaded said chemotherapy was useless. My daughter also read some of the literature and she couldn’t believe how depressing it was. So it just goes to show, don’t be put off , there is always hope and a strength in each one of us to face this.
On the 29th October 2007 had a blood transfusion – 3 pints and that also took 7 hrs .I wasn’t too bad after first lot of chemo. I developed a runny nose and sore eyes .
8th November 2007 saw Oncologist, but didn’t keep a note of what was discussed.
9th November 2007 Lung nurse rang – potassium too high, have to get it down before next chemo. Could be the blood transfusion or the fact that I eat a banana for breakfast!!!! Told to stop eating bananas and taking Enalapril until further notice.
12th November 2007 go for blood test for potassium level.
15th November 2007 had second cycle of chemo. My potassium level was okay, otherwise I would not have received chemo. I could also restart my Enalapril tablets for blood pressure.
Side effects this time was sore and red eyes. I was sick throughout the night even though I had taken the anti sickness tablet. I ended up having to go into my daughter’s bed with her as I was so weak after being sick and she wanted to keep an eye on me. Also I lost my appetite and was losing weight. I had no interest in food other than I knew I had to eat as I am a diabetic. I leaned towards fast food as could not finish meals as I used to. I thought everything would go back to normal after the chemo was finished so didn’t worry too much.
During this time my niece, Joanne sent some tips on what to eat and drink which would help me through this time and I tried honey and ginger in Green tea each morning. I think I stuck with this for a while and then reverted back to my caffeine intake with coffee again.
6th December 2007 had third cycle of chemo.I was starting to feel a lot more tired by this time. Saw Oncologist after third cycle of chemo and had a scan. I was so tired and to be honest I was going to call a halt to treatment as I felt so lousy in myself I felt that whatever time I had left I didn’t want to feel like this. However, the scan showed an improvement, the meso had visibly shrunk. I remember asking the Oncologist if it could just be hiding and she said that was a very good question, but she didn’t say yes or no. So I thought well if it has really shrunk I could put up with three other cycles of chemo because it could possibly shrink it more and therefore, I would have longer to live. The Oncologist did notice the change in me and said something like the chemo was taking its toll on me and she didn’t want me ending up looking like an old woman, well maybe a bit nicer put than that, but that is what she meant and that is how I felt. So she decided to change the Cisplatin part of the mix and introduce Carboplatin.
Had a break for Christmas and I was thinking how many more Christmases would I have, Christmas is my favourite part of the year.
7th January 2008 new mix of chemo and could not believe it, no longer 7 hrs, this was cut down to around 4 hrs. So I started wondering because the new chemo mix was not taking as long, perhaps it wouldn’t zap the tumour like the first chemo mix. I asked the Lung Nurse and she assured me that was not the case. I still had the tiredness and loss of appetite.
28th January 2008 had 5th cycle of chemo.
Side effects were the same and the sore red eyes were still there.
18th February 2008 the last cycle of chemo.
Scan revealed further shrinkage so could not ask for more. My daughter asked what this meant to me and was told that I had longer to live.
I was told to be extra careful round people with colds, flu etc until my immune system was up and running again and to carry an antibacterial hand gel in my handbag. My daughter rang the Lung Nurse a few times when she wasn’t happy with me. One instance I started a cold and didn’t have the energy to get out of bed so Marie, the Lung Nurse told her to ring the GP who came out and gave me antibiotics straight away. I also rang the Lung Nurse on several occasions whenever I got worried about different aches and pains and she would reassure me and offer advice and would always ring back to make sure everything was alright.
I have had further x-rays which revealed no change and now they have stopped the x-rays as too many aren’t good for you. I personally don’t hold out much confidence in x-rays where meso is concerned as it hides and wouldn’t necessarily show up on x-rays. I had lots of x-rays which showed nothing except the fluid on the lung and the meso was there.
Meso sufferers must all think every ache or pain is the cancer growing, it’s horrible, but that’s part of this awful disease. You ring the lung nurse and I could write the script or maybe I am too sensitive, but I personally cannot answer all the questions straight off, like how long have you had it, on a scale of 1 – 10 how bad is it, have you tried brufen and paracetamol. So now I don’t bother ringing as you get the same questions and I feel like a fraud or time waster.
Last year I was bothered by the pain and was finally offered an x-ray which I wasn’t happy about and it showed nothing. I had to wait a couple of weeks for a scan and couldn’t even get one at my own hospital and then sat for over 2 hrs and the scan showed no change. The doctors were happy and I wasn’t as I didn’t know what the pain was and I still have it. It used to come round in cycles and now it is here all the time. I cannot do anything strenuous which is practically anything these days or the pain gets really sore. The pain is where the tumour is.
My last visit to the oncologist was February 2010 and she offered me another scan, but I declined as the pain is exactly the same as at the time of the last scan. I was told if the tumour grew the pain would be far greater. She said the growth could be inflamed like pleurisy which makes a lot of sense to me describing it like that.
When I was first diagnosed Dr. Weatherhead said there was no operations available except one which he said was in the early stages and only carried out at a couple of hospitals and he was 90% against it for me and after he described it I agreed with him and probably still do. That operation is called Pneumonectomy which involves removing the affected lung, the pleura, diaphragm and pericardium [covering of the heart]. So when you have just been told you have Mesothelioma hearing about that operation is enough to send you screaming out of the room, out of the hospital to God knows where.
Of course, there are more options available now and through Jan Egerton, Cryoblation is the one path I would definitely follow. The only thing there is the travel. I went to New York with my son last year and it took me months to get over the flight back. Going we there on a jumbo jet, but coming back we were squashed into an ordinary sized plane and it was horrendous, even for my son who is fit and well. So one can only hope it comes over here, but probably not in my lifetime.
Debbie Brewer has done extremely well with the path she has taken using chemoebolization and mistletoe therapy and gives us all hope.
So we each have to choose the path that we believe is best for us and never underestimate the power of prayer, a good sense of humour and you have to fight the fight to the end and who knows miracles do happen.
Good luck to us all.
