The 3 weeks between my first and second chemo were long and a bit crap. I felt pretty rubbish but I would say that the biggest issue was the non stop headache. The pain was kind of on a par with a migraine and I found it difficult to do much. The other side effects weren't too great either. I did have a respite period for a few days before it was time to do it all again. The system works in such a way that your breast cancer specialist nurse sees you every 3 weeks prior to the next chemo to assess how you're coping with it. I was hopeful that when I saw her and told her about the problems and in particular the headaches that this would be looked at and maybe something done about it. Wrong.
I said in my first post that I wanted to share with others my experiences so that they could learn from them should they ever need to use such an education. Hopefully this will be the case. Despite my awful headaches and numerous other symptoms I was back at the clinic on the Thursday for round 2.
The drill was much the same, and after treatment was given I went home. This time my headaches were even worse. My nurse had explained that she felt that these were being caused by the anti sickness drug which was given intravenously and then in tablet form to be taken for several days after chemo. She said that without these drugs I would throw up constantly and therefore they were necessary. I didn't think to question this. This time the headache was constant for about 18 days and no pain killer helped. It was difficult to function. I found myself in bed most of the time. My hair had completely fallen out. This had started about 2 weeks into the first treatment. My head had started to tingle and then hair began to shed. It was a wise move to take the clippers to it as the house was filled with hair. It actually wasn't as bad as I thought. Russell did the deed and I quite quickly came to terms with my new look. To be honest I felt so awful that I didn't really have time for vanity. Another major side effect for me was constipation. My bowel didn't work and the advice was to take lactulose. I don't know how many people have tried this liquid but I find it pretty hard to drink at the best of times, so trying to take it whilst nauseated was not easy. The constipation was to become an increasingly big problem.
I became increasingly withdrawn and depressed I suppose looking back. I was in bed most of the time and had no energy. When I went back for my check up I again relayed the issues but the regimen remained the same. Before chemo is given blood tests are carried out and your white blood cell count has to have recovered enough for the next dose. At the end of cycle 2 mine were too low and chemo was delayed a week. I suppose this wasn't a surprise given how hellish I felt. I got a "holiday" and it was nice to feel slightly normal. However the next round came around all too soon. It was taking longer at the clinic as my veins were less able to take the chemo, as they were being destroyed by it. It also becomes really hard for the nurses to find a vein to take blood from or put the canula into, this for many of us is a problem that we continue to live with. Sometimes its necessary to use veins in the feet. Again I had the constant headache along with all of the other shit. It was another 18 days in bed and a wee sense of relief for 3 days before going into the next session. I was definitely depressed by this time. In a moment of true wisdom we had bought a new house and were due to move in in a couple of weeks, funnily enough I didn't really feel that I had the energy!
By treatment 4 I had had enough and though I was trying to focus on the house move I felt crap. This one was particularly bad. After a couple of days I developed a really sore throat on top of everything else. Now when having chemo a sore throat can be dangerous as it is a sign of an infection which can then rapidly spread through your body leading to septicaemia, so not good! Its recommended no actually recommended is like a dish in a restaurant so forget that, its bloody imperative that you are seen by a doctor. Russell phoned my practice and requested a house visit. One of the doctors called back and said that instead of a visit he would leave a prescription for antibiotics to be picked up. Hmm wouldn't an examination be more appropriate. When we phoned the Beatson they said that this was unacceptable and that a visit was necessary. Another call was made to the surgery and much to the Doctors annoyance he agreed to come out. 5 hours later he arrived and was clearly not happy. he told Russell that this was a waste of his time and that antibiotics were more than enough. He came through to what felt like my death bed and after a cursory glance at my throat, said triumphantly, yes as I said just an inflamed throat. Jesus Christ this man was something else. After a few more words with Russell in the hall, whereby he told him that he had been through chemo and sore throats were just par for the course, he left. What brilliant care. 2 days later I developed more throat problems. To be fair this time a different doctor came quickly and diagnosed oral thrush on top of the infection. Life was good, ha! Another 2 days later I felt as bad as I ever had. I had a temperature which again is a vital sign of danger and couldn't get out of bed. A doctor was sent from NHS 24 and he asked me if I wanted to go to hospital. Hmm I didn't think it was about WANT, again the care was pretty shit. By the next morning things were bad enough that Russell called an ambulance and I was taken to hospital. For the first time I met a doctor who actually listened to me. I was neutropenic sepsis and she didn't hesitate in admitting me. Finally I was about to get some actual care. The things you have to do to get some attention! I hope that this message alerts others to being less accepting
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