There was I, thinking that everything would be ok for a while, when SPLAT ... I end up back in hospital with another infection! Couldn't believe it. And this time I didn't even have a great view of Poole harbour, just looking in the direction of Winchester Road from the cancer ward in Southampton General Hospital - my nemisis.
It was Tuesday. I went to Lymington Hospital to have my PICC line flushed and then trundled into work. About an hour later I started to feel awful, but thought it would pass, but it didn't. Luckily I work in a College which has a nurse on staff, so I went round and lay down in the medical room for a while. Wasn't really feeling any better when someone came round to say that a student had to go to the Minor Injuries Unit at Lymington Hospital and did I want a lift. As my sister-in-law works there I thought she might be able to give me a lift home so off I went. Minor Injuries said I shouldn't really be theres they don't have any doctos there, but should see my GP (!!!). The triage nurse did my obs and my temp was high, pulse racing and blood pressure 184/? so I was taken across to the Forest Assessment Unit where there are doctors. They did blood and urine tests, and sent me for a chest x-ray. The hope was that it was just an infection from the PICC line, but at worst the reason for this, and the crash in my white blood cell count, could have been that the cancer had moved from the bones into the bone marrow.
Next thing I have a canula in and having penicillin and then antibiotics pumped through me and then my sister-in-law was taking me off to the Macmillan Acute Oncology unit at Southampton General for admission to ward D3. The PICC line was removed and about 5pm I was taken up to the ward. MAO were very impressed by all the tests etc that Lymington had done, as they had done most of the admission work-ups that they needed.
The next day I went for a CT scan in the late afternoon - last one in - which showed that the cancer has not gone into the bone marrow and it actually still quite stable. The Registrar did some along and ask if I had any pain in my right kidney area because the scan shows a blockage of the ureter causing the kidney to be enlarged. On reading the discharge summary it actually seems that the problem is in the left kidney and may be due to 'disease', though hopefully it is just a kidney stone. On Friday it was important that I stay in hospital to see someone from urology so the problem could be seen to quickly, then on Saturday I was told I could go home. The discharge summary also included some of my most recent blood tests which show that I am anaemic, which no one had bothered to mention, but which may explain why I was feeling so light headed, and why I have been feeling so cold recently. Would have thought it was at least worth mentioning. On the plus side I had my Zoledronic Acid (bone strengthener) treatment before I went on Saturday, so I didn't have to go back this Tuesday for that and waste a day in clinic.
I didn't get to go to Chichester as planned, but the friend I was going with took her daughter and grandchildren to take my room so it wasn't wasted. They had great weather and seemed to really enjoy an impromptu family holiday because it was during the school Easter holidays.
Unfortunately my experience at SGH has done nothing to reassure me about that institution. The doctor who admitted me forgot to write up my Letrozole so I could be given that medication. This is astonishing as it is my main cancer treatment. They never got around to prescribing me an anti-inflammatory, so I ended up being unable to stand up properly because my pelvis shifted due to the inflammation. Part of the problem has been that my GP has not been letting me have the medication that I have taken for about 30 years, and which is a slow-release capsule. This is on the grounds that it is hard on my stomach, but it has never given me any problems. In fact the meds she forced me to have because they are 'safer' have actually given me stomach ache, and acid stomach, and because I got fed up with trying to get a full 28 day dosage from her, I was only taking a third of the prescribed dose. Finally after my sister-in-law spoke to my GP I have, after about 5 months, been allowed to have the original meds back, and I can now nearly stand up. Since I have what is considered to be incurable cancer why is my GP worried about my stomach. Shame she wasn't so worried about my going to see her about my fatigue, back problems whilst telling her that tests had shown I might have cancer, and that my mother had breast cancer. She wasn't concerned about that, so by the time I was finally diagnosed it was already too late. In fact the last time I saw her, she was saying that now the left hip has been replaced I don't really need any anti-inflammatory medication!
While I was on iv antibiotics I told a couple of nurses that there was pain when they were putting the drug through the canula. When I said 'ouch, that really hurts' one nurse told me not to shout and be so rude, and that it was going into the vein. A minute or two later I noticed that an area about one x one and a half inches had swollen up at the side of the vein. I went out to show someone, and it happened to be the nurse who had given the injection, who again accused me of shouting at her when I demanded that she see what was happening to my wrist.
I wanted to discharge myself because I was so upset about all of this. Why is it that no one will listen to me? Do I have moron, or idiot, tattooed on my forehead; or 'ignore this person she knows nothing'? I walked around on a pathological fracture of my right hip, caused by undiagnosed bone mets, without taking about pain medication, just telling myself not to be silly and get on with it. So when I say it hurts, IT HURTS! Why won't they listen? I don't bitch and moan when they stick needles in me, and God knows I try to just 'go with the flow', but sometimes it all gets to be too much. I want to be treated as an intelligent person. I have a first class degree, so I am capable of using my brain. Why do doctors, and these days nurses because they have been to university, have to treat you like a sub-species? Grrr.
There I have had my moan for the day ...