Ups, downs and level ground

Not been quite up to blogging for the past week or so. Just completely knackered and unable to hold a train of thought for long! Most of my days seem to evolve around the daily trip to the hospital for radiotherapy and also the Consultant chemo clinic on Mondays and dressing change and PICC line flushing on a Friday. Recently all these appointment have been around mid day or early afternoon. Mornings I am feeling at my best and so by the time we get home again I have just about had it and just space out on the settee trying to watch TV or read the paper and not been able to bring myself to start boring everyone with the mundane reports of my daily regime and thoughts. Thanks to a pm from someone expressing their concern and asking how I was as I hadn’t blogged for a while I was extremely touched and felt today that I would pull myself together and update the blog. So thanks Anjula. Your concern and thoughts were very much appreciated. So …………Last Friday after waiting once again over an hour to be seen for the dressing change and flush in the chemo treatment centre I was at last seen. The nurse seeing to me was having real trouble bleeding my PICC. There was a huge resistance and it took a good 5 minutes or so of flushing it with saline before he was able to draw back some blood. I was never so relieved as I was beginning to think it would have to come out and a new one put in! I do not like having it in at the best of times, feels very alien. He told me that there was probably a small clot in the line which had caused the blockage but reassured me that once it had shifted the clot would dissolve and not be a problem. Am now hoping this Friday’s appointment goes more smoothly and the same thing doesn’t happen again! Fingers crossed! We got home and my beautiful daughter and granddaughter were waiting for us. It is so lovely to see them and they lifted my spirits so much. My granddaughter is 18 months and is a right little chatter box who makes me laugh so much. She is so cute! Saturday we went for a long walk down to the park for a good session on the swings and slide and then up through the apple orchards and back home. Felt better for the exercise but was quite amazed at how tired it made me! Sunday was a glorious day again despite the poor weather forecast and we ventured out to a local farm to take Alice to see the baby lambs and piglets. She had a whale of a time and once again it was good for me to be out in the fresh air for a bit of exercise. By 5pm it was still warm and sunny and so we ate our Sunday roast on the balcony outside our kitchen. Even managed a glass of red wine! A lovely end to a lovely weekend. Monday it was depressingly back to the old routine. The appointment with the Consultant meant another hour and 15 minutes wait and even then I was seen by the radiologist again and not the oncologist. Apparently my white cell count is down and so I have to stay on the antibiotics they prescribed. I have also had a really dickey tummy for the most of the past week, one minute being constipated and having to make repeated trips to the loo in an attempt to go, and then the next minute having to make repeated trips to the loo because I have got the trots! It’s a fine balance between whether to take the Movicol or not! My tum also gets a bit gripey at times and I feel a bit nauseous. The radiologist says this can happen if you become dehydrated and so I am trying to drink more fluids but this means I usually have to get up 2 or 3 times in the night to use the loo and then I am more tired again in the morning! Hey ho! On top of that have been feeling a little bit sorry for myself on and off for the past week, can’t quite work out why. After all, at the end of this week I will be half way through the treatment. Hooray! I have started to get a bit sore now from the radio especially in my groin area despite slathering on the emollient cream religiously. I have also had a demented itching especially round my nether regions which has nearly driven me mad as it is too sore to have a good scratch! Directing the shower down there certainly relieves it for a while. The radio team advised me to stop using the E45 cream I was using as they said quite a few people develop an allergic reaction to it. And so last night I left it off and I must admit I was a lot less sore and definitely less itchy this morning. Now got some aqueous cream instead which apparently is less likely to cause a problem. Generally I am sleeping quite well except for the past two nights. Tuesday night I was awoken at 3 am by the neighbour’s burglar alarm going off. She was not at home and so it carried on for what seemed like ages and then went quiet for a short spell and then started up again! It eventually stopped the high pitched alarm and ended up making an irritating rhythmic whirring noise incessantly and it is still doing that as I sit and type this 36 hours later! It’s amazing how irritating this can be especially as I am not feeling 100% at the moment and I suppose less tolerant of the slightest things! She didn’t come home last night either and so now I am eagerly waiting to see if she comes home tonight! Last night I had to resort to wearing some foam ear plugs that I found in the back of the bathroom cupboard and at least got off to sleep without too much bother! Hubby is not bothered by it at all as he just takes out his hearing aids at night!!! Will have to resort to sabotage tonight if she has gone away for a while! She tends to keep herself very much to herself, unlike everyone else in the courtyard where we live, and so no one has her door key in the event of occasions such as this! For the past few weeks I have noticed a woman in the clinic and radio waiting rooms who is usually called in just before me or just after me. She too had a PICC line in and this week was reattached to her chemo pump. Today we were both called down to the second waiting area together because the computerised system was not working. We got chatting instead of just passing the time of day or a brief nod and it turns out she too has anal cancer and is just 2 weeks ahead of me in treatment! This was quite a surprise to us both as it is one of the rarer types of cancer only about 800 cases a year in the UK I understand. It was reassuring to find someone who I could chat to face to face and compare symptoms, side effects etc. She lives in Margate and has further to travel each day then I do. For her it is a drive of around 2 hours to get there! The girls in LA6 told us that they brought us down together today to the small more intimate waiting area just before going in for the treatment because they knew we had the same cancer and realised that often people didn’t talk much to each other in the larger pre-waiting area. So their plan worked and now I know we will both seek each other out to compare notes etc each time we go! Have had to give in and cancel our holiday for the end of June or I should say postpone it till September when I should be well over the treatment. Fortunately our holiday insurance, taken out before my diagnosis and before the flight was booked, has covered the costs and my GP has signed the relevant claims form to confirm the details etc. It seems now that they know I have had cancer I will not be covered again on this policy and so looks like I will have to contact mia insurance as recommended, before we book again. So September we will fly off to Cyprus to our friend’s apartment and spend 3 weeks relaxing and hopefully recovering. I can’t wait and gives me something to look forward to. Hopefully by then I will also have returned to work for a month or so and will be ready for a break! I ordered about 5 books from Amazon last week to help pass the time. I chose 4 from the Richard and Judy list and waited for them to arrive. The parcel came early the other morning in a rather large box. On opening it I found not only the 4 books I was expecting but 7! 3 copies of one book, 2 of another and one each of the 3rd and 4th! Yes… chemo brain had struck again! Don’t know how I managed it but it was all there on the invoice! Even checking on the computer confirmation it said 3 of one and 2 of the other but I just hadn’t registered! Anyway they are now wending their way back to Amazon covered by their returns policy! Almost as bad as the enormous bottles of Tomato and HP sauce (ideal for just the two of us and will probably last us well over the next year!) and to the other extreme the box of tiny cans of diet coke (kiddies lunch box size I assume), oh yes and the one sad lonely carrot that was delivered instead of the kilo I wanted, that I managed to order from Sainsburys on line the other week! I am just useless at gauging the sizes from the on line site! I’m afraid the number of gms or mls mean nothing to me! Am blaming it on the chemo but not so sure it’s not just the ‘old timers’ creeping up on me! Watch this space!