(PLEASE DON’T WORRY – IT GETS BETTER AT THE END!) 😊
If you thought that things were bad regarding my doctor in my last posting about my cancer story, this posting will show you that things were to get worse before they got better.
I returned to my doctor after Christmas, having gone through the most terrible Christmas I had ever had. Christmas is never a good time for me anyway. In fact, it is a time that I dread. Family issues have made it a time of deep isolation and pain. In the past we always dealt with it by inviting people to our home who were otherwise going to be alone. However, it was no longer possible for us to do that due to my husband’s disability.
For me, Christmas does not bring light. It brings darkness. For some weeks before Christmas 2012 I had been enveloped in darkness, and the most horrific fear. The horrendous itch that had begun in my body in the April of 2012 had worn me down completely. It was a deep deep itch that nothing at all would relieve. My legs in particular felt very strange inside. I had problems in getting dressed and going in a morning, because of the strange feeling in my legs, but also the whole of my body was affected by this deep itch. As the year wire on I was becoming weaker and weaker. I was unable to eat very much, and by Christmas I was unable to eat at all. In the October I had developed pain in my rectum that was excruciating. One night in particular that I remember, I felt I was going mad with pain. But I put it down to a tear that had, throughout my life, kept opening up in that area. However, the pain was far surpassing any pain I had ever felt at all from that particular problem. I was, on this occasion, holding myself up on the bedroom wall, as I was unable to lie down, and I was rocking from foot to foot in a sideways manner. Surely this pain HAD to go. I had never ever had it like this before.
The pain continued for a while, and I became afraid of food. Not that I felt hungry anyway. But I was afraid even to eat a bread roll. It would cause this pain to begin again. I then became frantic because I was not eating, and I knew I was losing weight rapidly. I thought at this stage that I had bowel cancer, but, something just did not feel right. Later in time, I was to discover that I in fact had a very large tumour at the bottom of my abdomen, pressing on my bowel. Sometimes the pain was bearable, but not all the time.
Words cannot describe the fear I was in by Christmas. I was sick with God knows what, but having to look after my disabled husband. The full body itch was driving me insane, but it had all been diagnosed as scabies. Eating was nigh on impossible. Nothing added up. The darkness overwhelmed me. I had nowhere to turn, my family not being a real family at all. Thus it was that I found myself ringing up my priest on Christmas Eve to ask him to give me the Anointing of the Sick. I did not know if it could do any good, but I was DESPERATE. At least I would be able to tell someone of what was going on. And so, at 4p.m. on the afternoon of Christmas Eve, there I was, sitting in the church. He was very kind, and we talked about eating, but not about the other problems, for I did not want to overburden him.
I don’t think ANYTHING could really have helped me at that point. I had just gone through far too much, and the scabies diagnosis did not ring true somehow. I was lost. All that I knew was that I was overtaken by the most terrible darkness and fear. I was confused by all my symptoms, and nothing seemed to make sense.
I returned home from seeing the priest feeling slightly better, but could not rest. I was exceedingly weak, and the itch alone was driving me insane. Christmas is a very isolating time if you are ill, and it was a case of just getting through minute by minute.
When I returned to my doctor after Christmas he refused to do any more than he already had done, and told me to “wait a couple of weeks”and see what happened. My husband and I told him that I needed referring to a dermatologist, since my skin had broken out horribly over the Christmas period. He refused our request, saying that I was simply suffering from stress.
I left the surgery in tears. I had had enough.
In time, however, the doctor did take blood samples, and he told me that the results were “normal.” This proved to be a lie, as later in time, when I saw another doctor in the Practice, in desperation, she looked at the results, went straight to his office, and told him that there was something wrong with this woman and that he needed to repeat the tests. He refused, telling her that I was scratching, and therefore I had a mild infection.
By this time I had also developed a horrible deep, retching cough, and breathing issues. As I had been asthmatic in the past, he agreed to allow me to see the respiratory nurse for breathing tests. By this time I could hardly walk, and had to be helped into the surgery. The respiratory nurse did the tests, which utterly wore me out, and went straight in to see the doctor, telling him that this woman’s tests indicated either COPD or lung cancer. She also told him how worried she was about my weight loss – five stones in a very short space of time. He passed this off by saying that I was not eating, therefore I WOULD be losing weight. She was not satisfied, but he refused to budge.
By now, we were demanding to at least have me referred to a dermatologist concerning my skin and the horrific itch. Reluctantly, he eventually agreed. Still believing that my problem was merely stress, he said that he expected nothing to be diagnosed. He wrote about my “stress” in his Report to the dermatologist.
And so it was that on a cold snowy day, I went to see the Dermatologist at a local clinic. I had to climb stairs to get to her office, and I could hardly get up them. I could hardly breathe, and I was terribly weak. By the time I got to where I needed to be I was in tears. A lady who was waiting in the waiting room saw how ill I was, and offered to let me go in before her, but they would not allow it.
Eventually the Dermatologist came to the waiting room and called my name. I got up to follow her to her room, which was down a long corridor, and I could hardly walk. She admonished me saying, “Come on. Walk briskly.” I attempted to do so, but almost passed out, and could not breathe.
Once in her room, she looked at one area of my skin, and said, “You have prurigo. It’s just another name for itch.” She prescribed anti-histamines, and told me to get out in the fresh aur, take brisk walks, and eat good food!
When my doctor read her Report, he said he had told me so. There was nothing wrong with me apart from stress.
Matters by now were getting much worse. My husband had been putting all my symptoms into the internet, including the night sweats and fevers, and one thing kept on coming up – Hodgkins Lymphoma.
Dissatisfied, we decided to try to see a Dermatologist privately. In our country that means to go outside of the National Health Service and pay for an appointment. It was exceedingly expensive, and because I was so sick, he agreed to come to our home to see me. He took blood samples, and tested for every known skin disease. A whole barrage of tests. The results came back and, very worryingly I had a high level of something the name of which I cannot remember. However, he wrote to my doctor and said that this woman did not have any primary skin disease, but that she needed to be URGENTLY referred to either a haematologist or a general consultant at the hospital, for my itch and the blood leaking spots were caused by something internal. He suspected cancer.
Upon receiving this Report my doctor still refused to refer me. My husband went to the surgery and demanded a meeting with the Practice Manager, who sided with the doctor.
In the end, it was a beautiful little Pakistani lady doctor from the Practice who saved my life. She was to become like a mother to me. My husband had demanded that the surgery sent a doctor to the house to see me because I was so sick and could not walk or breathe. This lady doctor felt around my neck and said, “You have huge lumps. You need to go to the hospital urgently. I will make a referral. You will go within the next fourteen days.”
And so it was.
(to be continued).