Uh oh, here we go again..
Uh oh. After Hannah’s friends had left having had the Chinese her temperature was starting to creep upwards. Not a good sign when its 37.8 before you go to bed, leaving us with just 0.2 to spare! Fingers crossed we make it through the night without it soaring.
The next morning Hannah really felt horrendous. Faint and light headed with a constant throbbing pain in her head. We were soon off to the RUH for blood and platelet transfusions anyway as they had been booked the day before but once we got there her temperature went through the roof so that was that. She started antibiotics straight away and they ran plenty of tests. She was there to stay - just great.
She felt so poorly but most of all sad that the infection had occurred so quickly again. Her temperature continued to go up and up and when Dad visited that afternoon she had yet another seriously bad case of rigours where she shivered for nearly an hour. She says it’s so unbelievably scary because you have absolutely no control over your body what so ever and the pain and aching of the muscles due to the spasms is terrible.
I think we actually had our best sleep ever in hospital last night even with 7 interruptions from nurses. A good lie in this morning made both Hannah and Mum feel a bit better and then they watched a whole episode of Hollyoaks omnibus – not bad I suppose. Sandra and Grandma came to visit in the afternoon but the antibiotics were already upsetting Hannah’s stomach so it was a bit miserable having to keep asking them to leave but I know they understand.
Compared to last night, tonight was horrific – what a noisy nurse!! So Mum and Hannah weren’t so impressed this morning. Despite this Hannah is starting to feel better in herself despite the dodgy tummy so that is good. As her stomach was so painful though she had an ultrasound today but it only showed that the bowel is still extremely sore and swollen following radiotherapy still. She had yet another transfusion before Sam and Dad came to visit with a DVD to watch that evening which made everything just a little better. By Tuesday the CRP count is finally coming down but the antibiotics are still 4 times a day so there is no way Hannah can go home just yet. A lovely artist, who is actually one of Hannah’s best friends Auntie’s (!!), came to keep her entertained that morning and they made a wool version of myself. Now I’d like to think of myself as a model but NOT if you think I look like that. I was so unimpressed… since when was my bum THAT big!?
Grandma popped in at lunchtime and we made a cheeky escape out to Victoria Park for a picnic and on return to hospital Hannah had another visitor to entertain her and he had some clay which they had lots of fun shaping and making Christmas presents with. One job done I guess! Dad and Sam came to visit again which was so lovely as I know how sometimes Sam doesn’t want to face it and this can make Hannah sad. It’s not that he doesn’t care, he just doesn’t know how to react to this god damn awful situation.
Hannah’s two consultants Polly and Anthony came to see her with great news; they’ve found an antibiotic that needs to only be given once a day to treat the infection and we can go home in between treatments! Hooray! Hannah was so thrilled, for the first time ever she would be able to be treated for an infection and remain at home at night which will make recovering from chemotherapy so much more bearable. We bought fish and chips on the way home to celebrate and went to bed as soon as we got home.
Thursday we headed into Bath to have antibiotics at midday. Unfortunately once the blood results finally came back after two hours, it turned out she needed platelets which we then had to wait ANOTHER 2 hours for them to arrive. Not a quick job at all. Not impressed at all either. Friday was not much better as Hannah had to have something called a GFR test to test that her kidneys were working properly. This means that a radioactive dye is pushed through her line and then her blood is taken after a certain amount of time for four times, This started at 10.30 and we did not leave the hospital until 3pm. Once again Hannah was very unimpressed.
Finally Hannah got back on board this morning and took Chesney for a hack with Granny on Tommy round Hardington. It made Hannah so unbelievably happy to be back in the saddle after feeling so grotty since the last chemotherapy. Afterwards we were straight back into hospital at midday for another lot of antibiotics but once again the blood results were painfully slow and when they did return Hannah needed yet more platelets which we had to wait to arrive from Bristol and did not leave hospital till 6 in the evening. So much for spending more time at home and just having antibiotics for half an hour! At least Hannah was able to ride today. She was supposed to go to Eleasha’s for a party that evening but on arrival it turned out everyone had colds so she couldn’t stay due to being very neutropenic. She was so disappointed. Instead, we went food shopping and bought steak for tea.
Sunday morning Hannah rode again first thing on Chesney down the school this time. VIDEO He is such a good boy and improving every day, I know Hannah admires him so much for his age, as do I for looking after my dear friend so well. Tommy went home bright and early back to Millie as they are going showjumping today at Mendip Plaines. Hannah was so devastated to miss it as her antibiotics completely clashed with their classes. She just had to wish them all the luck in the world and told Millie to keep kicking and she’d be fine which she was as they came 2nd and 3rd – good job! Into hospital for midday again for antibiotics, fortunately no transfusion needed today, but we still had to wait a damn long time for blood results – surely they can speed that process up!? We then went home afterwards for a quiet evening to watch the X Factor.
Monday really was not a good day at all. Hannah hacked first thing in the pouring rain on Tommy, she’s definitely not a fair weather rider but it wasn’t exactly fun in that weather. We were in hospital at 12 to have our blood taken which took 3 hours to get the results of! By this time we discover that Hannah not only needs a platelet transfusion but a blood transfusion too of three bags at 2 hours PER BAG! My god was that a late night by the time the platelets had been delivered from Bristol and the blood had been made. We didn’t leave until after 10 that night. Hannah was totally exhausted and slept all the way home and Mum was just very fed up with the whole situation. As lovely as it was that Hannah was not staying in hospital, we were having hardly any time at home due to constantly toing and froing from hospital all the time. It was no fun at all.
Finally on Tuesday the nurse was able to do Hannah’s antibiotics at home – hooray! She had a lovely lie in after such a late night the night before and then had breakfast before writing some blog whilst we waited. In the end Sarah was 2 hours late! Hannah was gutted to miss her brother Sam at his ploughing match as she had promised to take some photos of him. Although we were very late arriving, fortunately she was able to take some photos still as Sam and his friends Max, Archie and Tom were able to do a bit of extra ploughing to fill in the gaps in the field. I even had a ride on a tractor too with Sam and it was incredible, I loved it! We popped home quickly for Han to ride Tommy in the school before racing back for prize giving… we missed that too – oops! But Sam was still glad to see us as he had come third in an open class, we are all so unbelievably proud of him.
The next day we had to go back into hospital as Hannah needed a platelet transfusion and her antibiotics. So frustrating! Oh well. At least we didn’t need to wait for blood results today fortunately as they were done yesterday, phew. It was probably good to see the doctor as Hannah is struggling with a huge amount of pain in her foot, I am so worried. I really wish I could do something to help her, she really is my best friend and I hate seeing her suffering. Unfortunately they had no answers (like normal) so she is left to carry on and ‘see what happens’ – great, thanks for that!! Afterwards we headed straight onto Wadswick before we continued on for a visit to Tom Grant and to collect Mavis’ tack that had been left there. It was so lovely to catch up again and we’ve made plans to see him again at Aldon International at the end of October so long as I am well. Fingers well and truly crossed! A speedy return home and Hannah was ready to teach Millie on Tom at 5pm. Busy day!
So it’s Thursday and hopefully we can stay at home again today! The nurse came to ours to do Hannah’s antibiotics and take her bloods in the morning. She was then able to go for a hack with Granny. Hannah rode Chesney and Granny rode Tommy, it was lovely to have another ride together. Rather surprisingly, on return, Dad decided he would like to have a go on Chesney… well it was rather interesting to say the least! But he didn’t fall off so I suppose that’s a good thing! My god I couldn’t watch though and he could hardly walk afterwards. Silly man! Thank goodness Hannah didn’t need any transfusions in hospital either today. That evening we all went to the Grange for tea to celebrate Auntie Sandra’s birthday which was a really lovely way to end the day even if Hannah’s leg was causing her a bit of pain.
After Chesney was such a good boy jumping the dressage boards (!!) with the crazy man yesterday Hannah thought it would be fun, much to her parent’s disbelief, to give Chesney a jump over a small cross pole for the first time since March… Fortunately he was amazing! She was so very chuffed, her smile said it all. Sarah the CLIC nurse came out afterwards and took Hannah’s blood as well as giving her the last of her antibiotics. Hooray they were finished! Everyone was absolutely exhausted by lunch time so Han and Mum had an afternoon nap before they all set up the jumps for Millie’s lesson that evening. Millie was awfully late so Hannah was able to give Tommy a jump round the course before she arrived which made her very happy indeed! They had a good lesson then it was a mad dash for the whole family to The Vobster Inn for the Ploughing Match annual meal.
Unfortunately they wanted Hannah to have a blood test Saturday morning so Hannah and Mum left early for hospital that morning. I’ve noticed that Hannah is really struggling with the whole situation of constant hospital trips, transfusions and the general thing of being ill and quite honestly doesn’t want to do it anymore. With a scan fast approaching on Monday she is also incredibly nervous to discover the outcome. I suppose her new found pain relief has made everyone so hopeful that this new chemotherapy has had an effect on the tumour or the radiotherapy has helped in some way that she is worried that she will almost ‘let people down’ if it hasn’t. I know this is a silly way of thinking and no one will be disappointed with Hannah in the slightest no matter what the outcome is, myself especially, but she has always been this way and worries so much what people think of her. We couldn’t be bothered to wait for the results of the blood test as it takes so long at the weekends so went straight back to Grandma’s for a barbeque which had been on Hannah’s list of things to do all summer. It was so lovely to finally sit outside and it to feel like summer – they picked a jolly good day to do it as it was actually warm and the sun was out! Much to our annoyance however on return to the car the hospital rang to say that the test results had shown that she needed a platelet transfusion. Just great. So they had to go all the way back to hospital in Bath from Shepton Mallet to wait ages for the nurses to put up her platelets. No riding for us today then.
The following day Hannah rode Tom and Chesney down the school before we all sat down to our first roast dinner together in ages. Just lovely. Then that evening Hannah and her wonderful friends from school; Beccy and Tegan, took her to the cinema to watch a film called ‘Miss you already’. It was a great film though a bit sad due to being all about a close friends relationship and one of them having cancer however I know Han was very impressed at how realistic the whole story was and would recommend others to go and watch it too!
So it’s the last day at home before chemotherapy is due to start tomorrow morning. Marie brought Merlin over first thing for a hack with Hannah and it was so nice to catch up with her. Afterwards, Hannah and Dad headed into hospital for an MRI scan at 2pm, as well as having her bloods taken. It was really uncomfortable for Hannah lying in the machine but hopefully it was worth it, fingers crossed for the results tomorrow.
Lots of love,
Willberry xxx
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