Wednesday 29th October 2008

Another frustrating day at UCH! Hospital transport turned up at 7.40am Monday morning, as I was pouring rice krispies into bowls! We never expect them early and usually they turn up around an hour late so it was a bit of a surprise! Anyway, Sarah wasn't feeling very well, but had a sickness tablet and off we went. Had a bit of breakfast on arrival, but she didn't feel hungry at all. Got in to bed, and had a nap - most unlike Sarah!! Went over to Dr Marias clinic for a 10.20 appointment, and got back to the ward to await an echo to check her heart was still OK after all the chemo - just routine. Physio came and Sarah did some good work playing football again with Humera, and even managed a bit of standing on her bad leg - the improvement in her in just 2 weeks is amazing, although there's still a VERY long way to go.Sarah then said she felt tired and got into bed and had another sleep - again, not like Sarah - she woke feeling really sick and promptly was sick all over her bed and clothes!! Too late for antisickness!! Then Dr Shankar came round at about 3.30 to tell us that her platelets were too low to start chemo - they had to be 75, aqnd they were 71 and dropping - aaaahhhhhh!!!!! Probably for the best - she was feeling ill, and didn't look like she wanted to have anything, let alone the dreaded red bag of medicine.The echo still had not happened so we are going back on Monday for an echo then to start the chemo - hopefully she will feel better by then - the last 3 nights have been touch and go with high temperatures, and it being too cold for me to want to take her to our local in the middle of the night!! I have taken the duvet off, turned her fan on and opened the windows, but both she and I have not had much sleep as I have been monitoring her temperature every 2 hours JUST IN CASE it rose too high - 38.3 was the highest, but I managed to get it down again by putting the fan on!! During the day she seems fine, and is eating OK - its just at bedtime. She does seem a bit better tonight and she's asked me not to wake her up tonight - I might just leave it until bedtime, then if that is OK, I should be able to sleep peacefully. Oh the joys of caring for a cancer patient - my nerves are frazzled, patience wearing thin, and emotions running a bit high, but I can see the end,even though the closer we get to it, the further it moves away.

Sunday 26th October 2008

Its a miracle!! Sarah cleared her methotrexate in 48 hours AGAIN!!!!! Managed to get home for X-Factor and have 2 lovely nights in our own bed! Today we had a lie in (and enjoyed the extra hour we got because the clocks went back!!) and then went to the cinema to see High School Musical 3. Had a lovely time with sarahs friend Georgia, and followed it with lunch in Burger King.
Going back in to UCH tomorrow morning in hospital transport (aaaahhhh!!!!) for an appointment with Dr maria, her consultant, then chemo at lunch time. Although, I hate to say it but she has a bit of a temperature tonight! I've put the fan on,opened the windows, and told her not to cover herself too much with the duvet - at least make it until morning, when we're going in to hospital anyway! UCH is way better than our local.............Fingers crossed!

Thursday 23rd October 2008

We went for a hearing test yesterday morning, and it turns out the poisonous chemo has damaged Sarah's inner ear and she might benefit from hearing aides!! She doesn't mind much, and I can't see her wearing them much, but we have made an appointment to have some fitted, and we'll see how much she can hear with them in!! Maybe she'll be able to listen to me then, instead of ignoring me........
Got let out for the afternoon yesterday as nothing was happening until today, so we went on a jolly to Madame Tussauds with mum and dad. Had a really great time - as a wheelchair user, Sarah and I got in free!!! The staff were all really helpful, and took us up all the different levels in a special lift, and gave us lots of help in finding where things were - mum lost her camera, and they even found that too!!Very impressed and the waxworks were good too!
This morning we had physio - and its official - PHYSIO CAN BE FUN!!!! Julie, Sarahs new physio, is great - she had Sarah, Leanne and Humera playing football on the ward!! And doing a bit of aerobics with their bad legs - great fun, and Sarah even said she wants to do more physio - completely unknown comment from a girl who HATES physio with a vengeance!!
After play, chemo went up, Sarah had a footmassage from the aromatherapy lady, and then she's gone to school - she feels a bit sick as usual, but hopefully, the distraction of school, and the other kids on the ward will stop it being too bad. She's still managing to eat sausage rolls for lunch, so it can't be all that bad..........
We also had a dermatologist look at her skin this morning, to see if they can sort out her itchy spots on her arms - they are going to prescribe some cream, and some oil for the bath to soften her dry skin too. It should all get better once treatment has finished - WHICH ISN'T LONG NOW!!!

Sunday 19th October 2008

Well, the news got better after my BIG whinge about going in for the weekend!! After a sleepy 3 days in hospital for Sarah with nothing to do - no Jessie in the playroom, Rachel in school for just 1 day, and Sarah sleeping for England, Sarah cleared her Methotrexate in 48 hours for the first time ever!!! We were all prepared for a pizza and X-factor when the nurse said she had cleared and we could go home! I had never felt so pleased in my life - I found it tough this week - the previous weeks traumas caught up with me, and the boredom made it ten times worse. I miss Dave every week, but I missed him more this week than ever, and I really wanted to go home. This has been the longest 6 months of our lives, and we are so glad its coming to an end at last. All we can hope is that this will be behind us after November, and there will be no nasty surprises in store. Xmas will be the best ever, and we will never take time at home together for granted again! We go back in Tuesday for another dose of chemo, but it all looks promising for the hockey weekend.

Friday 17th October 2008

Doctors phoned at 5.15pm Wednesday to ask us to come in Wednesday night for chemo Thursday, despite a staff nurse telling us we wouldn't be going in because there was no room. This caused us no end of problems, as Katie was home from school for hockey training, and we had to get her back, Dave's mum was being kept in hospital overnight because she was feeling unwell after having her catheter removed, and Dave had loads of things to do!! We managed to get Laura to take Dave's mums things to the hospital, and take Katie back to school, and Dave dropped us off in UCH at 8pm.It was full up, no spare beds, and all girls!!! The doctors are going to gain us 24 hours a week, so we can still go to Cannock. We go home Sunday this week, then back Tuesday until Saturday, then back Monday for 48 hours, as long as Sarah stays well.
Chemo was OK yesterday, and Sarah felt fine until around 6 o'clock - she then developed a tummy ache and felt really sick. At about 8pm she was sick and that seemed to make her feel better, and after a few early trips to the loo, she slept quite well. She seems really tired today, and she's had a reflexolgy foot and hand massage, and is sleeping soundly as I type this. I think all the coughing/physio/chemo has caught up with her, so I hope she stays asleep as long as she needs to. Not really looking forward to the weekend in here, but hey - X-Factors on, and we can get a pizza and coke and have a girly night in front of the telly!!!

Tuesday 14th October 2008

Aaaaaaaaaahhhhhhhhh!!!!!!!! Doctors are stupid - hospitals are rubbish!!!! Spoke to the doctor at UCH on Saturday and explained that Sarah was coughing really badly, and asked the question - 'Would chemo go ahead?' Yes was the reply, so we headed off to UCH Sunday afternoon in a rickety old ambulance (as Dave was in Somerset with Katie on a hockey jolly). Arrived around 5.30pm, and Sarah was checked in, picked her bed, had bloods done and waited for the doctor. Doc checked her over and tutted a bit, mmmmm'd a bit, and then sent her for a chest x-ray. Back in about 10 minutes, all clear. Mmmmm'd a bit more and rang the consultant, who decided that 3 days antibiotics wasn't enough, and as they couldn't give methotrexate with antibiotics, we were to go home and keep taking the tablets. I then had to phone Dave, (who had just arrived home from Somerset), to come and pick us up!!! (Sarah was as pleased as punch I might add, but I was not and neither was Dave!!!) Came home still coughing, and continued on the tablets. Today, the hospital phoned to say we were to stop the tablets, and come on in tonight for chemo tomorrow - 1 hour later, the doctor phoned to say that they didn't have a bed!!!! So, we have to go in tomorrow, for chemo Thursday, and we won't be home until Sunday. This throws all our plans for 2 weeks time, as we were going to Cannock to watch Katie play in the England Hockey Futures Cup and we've booked the hotel!!!! Tomorrow they are phoning back to see if we can sort something out - I have asked to be delayed until Sunday - then at least we can be out on the Thursday night in 2 weeks time, and can only miss 1 game on Thursday. Aaaaaaahhhhhhhh!!!!! They seem to forget you have other children when they do these things - everything stops AND I HATE IT!!!!!

Saturday 11th October 2008

Our 10 days at home started uneventfully - came home Wednesday night, Sarah went to school Thursday and Friday, and guides Thursday night. We went to see her friends at swimming on Friday night and took her beloved trophies back ready for the next championships at the end of October.We had friends round for lunch on Sunday, and generally had a good weekend. She went to school Monday and Tuesday and then the trouble began. Firstly Katie came home with a cold at the weekend, then I noticed Sarah coughing and sniffing. By Tuesday night the cough had got quite bad, and she was kept home from school Wednesday and Thursday. Wednesday evening, her temperature was hovering near to 38 degrees where hospital admission is inevitable. I decided to take her in to be checked over by a doctor at our local hospital. The doctor said she was fine, it was viral and there was little they could do. I had to monitor her temperature at midnight and 4am, and both were fine. Thursday afternoon, the doctor from West Mid phoned and said that they had decided to put Sarah on antibiotics as a precaution.Dave collected the prescription and we got started straight away. Unfortunately they didn't do much!! Friday morning Shirley the community nurse came and took bloods and I went to work. By 2pm, the nurse had phoned to say Sarahs levels were really low - her Hb level was only 6.8 (red blood cells) so she would need a blood transfusion. I left work straight away and took her in to West Mid again. They had to cross match her blood and that took 2 hours instead of the 45 mins they originally said!! It was decided she needed 3 units of blood and each unit would be given over 2 hours - Sarah soon realised we wouldn't be out of there until around 11pm, and she was adamant she wasn't staying in!! BUT - after the first unit, Sarahs temperature spiked to 37.9. The doctors weren't happy to give another unit until the temperature had gone down, so she had calpol and we waited. 10.30pm and the temperature was more normal so they continued - but this meant staying in over night which didn't impress Sarah one bit!! She was woken every hour to have her temperature taken and her blood pressure done in case there was any reaction to the foreign blood! After a rough night we escaped around 9,30 this morning. She is still coughing and I didn't think they would do chemo at UCH with her in that state but they say they will, so transport is still booked and the bag will be packed in the morning. Fingers crossed her neutrophils will get higher quickly and she can fight off this nasty cough virus - she's knackered, and so am I. Poor Dave has had to drive to Somerset tonight to take Katie down to Millfield for a hockey trial, so I won't see him for several days - this is taking its toll on him too, and we are both feeling the strain a bit at the moment. Can't wait until the end of November.........