Played 10 holes of golf in a bbq team event last night. I couldn’t speak for tiredness at the end of it. Bed as soon as I got home. Today I am still tired, though I think the word is total fatigue. I have never experienced anything like it. All my joints are sore and it is pure will power that forces me to walk.
#3 – 10.00 Main side effects are lack of body temperature control, I’m either in a lather of sweat or else have winter jumper on despite it being 19 outside. Fatigue, fatigue, fatigue to the extent that when it hits me I am unable to physically speak!
#4 – 09.00 12th July. Played my first 18 since this started yesterday. Played early and well but fell asleep on way home then slept for another hour when we got in. My body clock seems to be all over the place. Went for early injection this morning to see how I am tomorrow morning as would like to get back to my usual Tuesday mornings golf. Within 4 hours I was tired again and cold though no one else is saying it’s cold. My big problem is food. The thought of cooking turns my stomach, I decided to do stuffed chicken supreme with vegs that I like, just about managed to eat the chicken. On the positive it is protein. Food could end up being a real problem as if I’m not able to eat properly my energy levels are going to be down anyway which is going to put me in a catch 22 situation. Took Rodney for walk around the block returned home and slept for 30 mins. I really don’t like this feeling!
Heard last night of a 6yr old little girl who was diagnosed with stage 111 MM when she was 4. 8 operations later and her parents are fighting to get her onto a trial. This really is an extraordinary disease and do you know it kills more people in the UK that cervical cancer.
14th July – I’m having a tough time dealing with all of this lately so have decided to adopt a song, it has become like my anthem and something I can draw on. I have always felt strength in music and it often brings me to tears but I do seem to get some strength from this one http://youtu.be/otuwNwsqHmQ
#5 was 9am yesterday morning. I was exhausted after golf on Tuesday evening so had to take yesterday’s quick as had to go to a funeral at 10. We walked down and then I broke out in a total sweat in church. Afterwards I met a pal for coffee, all went well until they started doing their lunches and the smells got to me so had to leave promptly. Two very strong drinks, probably not allowed, last night then bed.
Today The Open is on, so an excuse to have a lazy day and watch it. Took Rodney for a walk, he didn’t do so well but I want to keep him walking as much as I can. I watched Marley and Me last night and started laughing more than I’ve laugh since January and ended up bawling my eyes out. I had read the book so knew what was coming, oh but it was just so sad. Asked The Boy today if he had watched it, he has, well almost, he has
seen it 3 times but turns off 15 minutes before the end! Actually I’m very proud of him as, totally off their own bat, he and his pal gave blood yesterday. Tomorrow I’m due to play golf, forecast awful so fingers crossed it really doesn’t rain that much. I’m due to meet a pal who contacted me by text during the week too embarrassed to phone. She wanted to meet up and I suggested golf, would prefer to play and concentrate on that stupid little ball than sit and chat, I’m just too emotional at the moment and I know it won’t take much to tip me over.
Oh it is so hard; just wish I had more energy.
The Boy just gone off to see Harry Potter!
#6 15th July, 20.30 with 2 paracetamol. Woke up at 5.15 feeling totally crap with a really sick stomach. Dozed till 8.30 but 11 feeling again as if I’ve a really bad dose of flu with all the aches and pains and chills. Took another 2 paracetamol but am exhausted tired.
Really thought that by taking injection at night it would be easier.
#7 18th July, 9.30 with 2 paracetamol. Really not feeling good at all but feel I’m in a catch 22 situation. Very tired and absolutely exhausted, however, if I can’t eat properly I am unable to get sustenance into me and therefore my sugars are very low. Met Jane and went for a walk around Rathfarnham Castle, by default ended up doing a tour of the castle – we opened door to tour instead of café and they got fierce excited at the thought of 2
people about to join the tour, we just couldn’t say no. There actually was no one else on the tour either. The tour lasts an hour and was actually very interesting. Fair play to
the OPW they do seem to do things right.
Boy went off on his LC holiday yesterday to Ayia Napa. The general feeling is that these holidays are a total nightmare and a huge worry but funny enough I’m not worried about
him at all. He is well travelled indeed spent 6 weeks in school in Australia in Transition Year so I feel he is sensible enough. I’ve no doubt that there will be lots of drinking and not great eating and don’t expect to see him home with a tan but on the other hand I think I’ve said often enough about the dangers of swimming when drinking etc. that some of it must have stuck and hopefully should he decide to do anything out of character just maybe he’ll hear my voice whispering in his ear!
19th July decided to get up early and head to Wexford. Worked like a mad woman cleaning windows inside and out and generally making the house look more lived in. Food still a problem.
#8 20th July 9.00 with 2 paracetamol. Continued my mad cleaning venture today, really feeling very tired but I’m determined to be able to carry on and beat this. If only I could start eating again.
21st July – Ooh not feeling so hot today and ended up taking myself off to bed. I often wonder do I actually have the flu and is this all a coincidence. Had a really hot bath and took a lemsip heading to bed. Seriously wondering if I’ve overdone things this week.
#9 22nd July – 9.00 plus 2 paracetamol. Since I started this treatment I’ve had diarrhoea
every morning till about 10 but today it hasn’t stopped. Had arranged to play golf, which I did, and it was a nightmare. Nothing staying in stomach and I’ve pains and aches everywhere. It is 18 deg outside and I’m absolutely freezing. Took 2 more paracetamol at 13.00 so I could play golf. Beginning to think I may be dehydrated as notice I’ve more or less stopped going to the loo. Now when I have a drink its going straight through me anyhow. This is not good and I know I am not well. Off to bed with another lemsip to see if I can sleep.
23rd July – absolutely no better and cannot eat a thing, even liquids are a problem.
26th July – Been really sick since Friday and knew yesterday I was in real trouble. Didn’t bother phoning the hospital over the weekend but phoned the oncology nurse yesterday. Just my luck my oncologist is away so she said to get to my gp who will do bloods and bring a sample, she, in the meantime would speak to the on call reg and get back to me. All turned into a bit of a disaster, saw a locum who really didn’t know what to do or say, eventually gave me more Imodium, have been taking these at home since Saturday, and a script for Flagyl, weird as I know I don’t have a bacterial infection. Needless to say stopped treatment this week. Nurse eventually phoned back and is ringing a script into the chemist for Lomotil and Buscapan. She told me not to take the flagyl! I am to try eating dry toast and sipping warm water. She will keep in contact with me during the week and if I don’t improve will bring me in. I feel I am so badly dehydrated now that if I
were brought in and even put on 1 bag of IV I’d pick up quicker.
Anyway it appears I let myself become too dehydrated. I am not a great one for drinking during the day, never have been, but it has been stressed to me that while I’m taking the
interferon I must drink as much as I can and flush it out of my system as quickly as possible. The view is that I let it build up too much in my system and pushed everything overboard. I will no longer be able to eat spicy food but a bland diet and low fibre foods.
This is going to be difficult, not that I’ve much of an appetite but every so often I do crave something tasty. Last Thursday I cooked chicken with black bean sauce with fried rice; it
was gorgeous but appears to have totally tipped my digestive system over. I also noticed over the past few days that I appear to be losing more hair than usual – my hairdresser will be delighted as he says I’ve too much! So just have to wait and see how the week goes.
By Friday I’m feeling a lot better and we decide to go out for a nice meal. The Lobster Pot in Wexford is where we decide to treat ourselves. I’m not madly hungry but do enjoy it as am looking on it as my last decent meal out as plan is to start again on Monday. Only problem now is I’ve developed an infected cyst on my eyelid. Every get the feeling you were falling apart?
Woke up on Saturday and the cyst had ruptured itself during the night however now my gland is very sore leading to pain in my ear and throat. Don’t know if this is all connected or have I just picked up something else. I absolutely hate being sick!