Firstly sorry for not posting any updates for a while but this chemo is sure trying to kill me, just hope it’s working amazingly well on those nasty cancer cells too! Feeling that everything is being thrown at me all at once! Either someone up there really hates me or they really love me and are preparing me to cope with this – I am focusing on the latter! I hope! But seriously fed up! Don’t even have the strength to do my usual ‘just carry on and get on with it!’ – very frustrated with myself. But still finding some positives – I have an amazing husband and children and this is bringing us closer together – much love in this house! And my hair, or lack of, is so easy now! Although trying not to look in the mirror as I think I look like dopey of the seven dwarfs – lewis thinks I need to be green or blue and I look like a mutant (unfortunately I do tend to be green with sickness or blue with coldness!)
The last week or so has gone by in a bit of a blur really. It’s day 17 after my first chemo – that’s been generally 17 days of pain and uncomfort in various ways – it feels much longer than only 17 days. It really makes me wonder how on earth I can cope with this for a year! I really hope my body is stronger than it feels.
So symptoms so far include: sickness, nausea, whole body aches, headache, tiredness but unable to sleep because of various pain, constipation, diarrhea, seriously painful piles – like passing glass agony, freezing cold, uncontrollable shakes, night sweats, dizziness, hair folicle pain, hair loss and to top it off general brain malfunction! Oh and period pain which defied all odds and decided to include itself – chemo also throws you into menopause with symptoms alongside! Sure there are probably more but I think you all get the idea!
Basically I have been in and out of Colchester general like a yo-yo, but I’m getting to know how the nhs works now and I have a list of contacts and I met most of the oncology specialists! I am so glad of the medical and nutrition research I have done as it makes it so much easier to understand everything. Mostly the staff have been amazing. Especially my recent stay where I was blue lighted to hospital with neutropenia (v low white cells which are needed to protect the body from infection) and more bumps to my poor head. Unfortunately I have been constantly unwell so it makes it harder to recognise any symptoms of emergency. On this occasion I had suddenly felt freezing cold with uncontrollable shivers – I had 4 layers on, 2 blankets, fluffy boots, fur gloves, hot water bottle, heating on full blast and sat in front of a roaring fire and still cold. So went to bed in my layers and in excruciating pain from the piles, but continuing to drink loads of water, which meant up and down to toilet. So on about my 10th wee at about 2am I suddenly felt dizzy. Next thing I know I woke up on the bathroom floor (not actually knowing I was in the bathroom!) and thinking I was calling out to Phil for help – I later found out this was my brain telepathically calling him as no sound was coming out of my mouth. Luckily he’s a light sleeper and had heard a thud and my knight in shining armour came to my rescue! Not good tho and had to call 999 – never had so many people in my bedroom! And so lucky we did. Good thing mum had come to visit too, as this meant Phil was able to come with me to the hospital. Kids amazingly slept through the whole ordeal! After 17 hours in an a&e side room feeling a bit abandoned and pin pricked – my arms resemble a drug addicts – I was moved to a lovely room on the emergency assessment unit – thanks to my oncology consultant and specialist nurse! Here I had renewed faith in our nhs service and can’t thank them enough for looking after me so well. I also saw my dear friend jindy (from my fast moving hospital bed!) who had been rushed in with pneumonia! We couldn’t see each other due to infection risk but we texted to console each other! So home now with huge amounts of antibiotics, which themselves have nasty side effects, but they feel I am safer home than in hospital due to infection risk! Let’s hope! The highlight of my stay was a very young, handsome doctor, with a very tight shirt who took the time to chat and advise me to juice lots of spinach to boost my white blood cells – I thought spinach did the iron and red cells but who cares – it was enlightening to hear a doctor that thought about nutrition along with conventional drugs! Should have taken a photo of him for you all!
So that’s pretty much my story, not much fun had, no meals cooked and I even missed cinders at the cinema! Thanks to mum Freya still got to go to the ball tho! And lewis has met up with friends. I did managed a gentle sewing day with lovely Ulrike and made an easter chicken for Freya. I also managed to have my hair shaved off due to moulting more than the Labradors. Also to make some more peg dolls with Freya for her friends gifts for her birthday party, organise our plum tree to be pruned – very proud of kids for mucking in too, and snuggles with Freya and clover while watching movies 24! Doesn’t seem much but believe me this was quite an achievement. Oh and the trampoline arrived – great bouncing had already, even I managed a small bounce but felt sick and drained after!
I have learnt this week not to plan anything more than an hour ahead which involves me! To rest a lot and to ask people to help! I will also be eternally grateful for the kindness and efficiency of my local doctors. Thank you everyone who has cooked us dinners, helped with the children (sleepovers, days out, revision help for Nathan, party food for Freya etc)
Today I had a positive phone call from the chemo pharmacy regarding anti anxiety drugs for my next chemo. It is good to know they are on the case. She had also been requested by my oncologist to call a contact in a London hospital to find out more about my reaction – and yes, they have seen before, which is good and they said it was actually the epirubicin that is most likely to cause this.. Still absolutely petrified of next Wednesday treatment but feel more confident they will be ready for me this time. Oh to be a common case! But I suppose at least I’m interesting and a challenge to the medical staff! So just need to stay reasonably well and out of hospital and for my bloods to be ok! Wish me luck everyone!