Hi all, I am home after 10 days in hospital and I wrote this blog day by day in hospital so it’s a bit like a diary – be warned it’s a long one, so here we go:
Monday 20th April: So come into hospital a few weeks ago with what I thought was very bad indigestion pains – of course they rushed me in thinking “heart attack!” – this is because I mentioned the words pain in chest. They have to check major organs a lot during chemo – I have lost count of my chest x rays already. Anyway, I got sent home after a few days, a bit of a puzzle really with some omeprazole and pain relief. Then last week – 8th April I had my second chemo – all relatively ok – see my earlier post. So by the next week I even made it to the beach, had a manicure of happiness – thank you darling Hannah – I thought I was doing ok and my body had coped with the reduced dose and the plan. Even managed the terribly painful GCSF injections. But when that pain had finished I was still left with the indigestion pain – or what I thought was as I have never really suffered before. So I just ate slow, lots of water, stretched a lot and carried on as you do.
Saw my oncologist on the Wednesday before the beach trip – Dr Viviene Loo, and we discussed my side effects and how my second chemo had gone etc. I’ve had it explained by a wonderful american doctor that chemo is like a recipe book – you start with the basic recipe but sometimes the cake doesn’t come out so good so next time you tweak the recipe until you get it right – chemo is designed to be “tweaked”. My treatment has been tweaked a lot! All of my symptoms I’ve been having are from the chemo and normal – I’m just getting all of them with no respite. So Dr Loo prescribed yet another bag of drugs and off we went to the beach. Wednesday 15th April was such a beautiful day – I even had my new sun hat. So off to Walton for a bit of sea air. Travelling was difficult. Poor Phil doesn’t do slow but has to with me in the car now as so travel sick. So we had a very slow walk and managed to eat fish and chips, had a rest on the beach, collected a few shells, chatted to an elderly man and then we came home. Phil says it’s like driving Miss Daisy around and that I’m 83, not 43, and with dementia to boot! I’m like Dory from finding Nemo at the moment too – chemo brain is much worse than pregnancy brain – I get repetitive and forget mid sentence what I’m saying. It is becoming difficult and so annoying. I think soon Phil will have ear plugs in and just nod at me like a nodding dog! I think I’m getting on his nerves as I talk a lot – too much really. So beach was beautiful but I didn’t feel so great but the sea air was just what I needed, and time with Phil was perfect.
Thursday 16th April: Had another bad nights sleep due to the ‘indigestion pain’. Didn’t feel so good. Luckily kids are so self sufficient now and Phil is getting brilliant at multitasking around work so I stayed in bed. Managed to finally get up and try and eat some breakfast – took me nearly 2 hours to eat half a bowl of porridge as felt so sick and lots of pain swallowing. Good thing is my voice was ok and had a lovely telephone chat with my uncle Pete. I rang the doctors for advice – they are wonderful, I spoke to pharmacy re drugs and she arranged Dr Taylor to call me back later. I also called the hospital – I have learnt to call and check EVERYTHING. But I still thought bad indigestion pain. The day struggled on and by lunch I was starving – I think this is the steroids. I had already had some soup at Janes, but I came home and made myself a most delicious looking tuna, cucumber and watercress roll. My mouth was watering. I love my food even with the sickness. So I took a huge bite, but didn’t chew it as good as I usually do and that was it – STUCK! Intense pain. So lucky Phil works from home and wasn’t in a meeting. Through the pain I managed to get his attention to call 999. I knew if this went wrong I was on limited time. I couldn’t swallow, the pain was excruciating. I tried to sick the roll up by putting my fingers down my throat. I could feel this was bad as I couldn’t breath. Lucky I swam a lot before all this cancer stuff and I can hold my breath for ages – I think this saved me. I was hitting my chest, bending upside down, yoga stretching, you name it I was trying it. I tipped water down my throat to soak and soften the bread and finally with incredible pain it moved and went to my stomach – the relief to breath. So scary. By this time the amazing paramedics and first responders had arrived – I think 6! We’re getting to know them all too! Love these guys and girls. So I was ok, starving still, and in pain but ALIVE! How tragic if I had choked to death after all that I’d been through already. So off to hospital again. I gathered bags etc, spoke to the chemo suite, explained that no way was I going through A&E as I wasn’t having a heart attack. Bit of a battle but a lovely first responder (who I found to be a daredevil and flew planes loop the loop) took me to hospital straight to the chemo suite and I was seen straight away. By this time I really didn’t feel so good and was very weak. I was rushed to a room, meds given, bloods taken. Soon I was high as a kite and being quizzed. Got a bit told off but I have a high pain threshold and tolerance – to my detriment. So I now realise that taking my temperature is not reliable for me – I am a reptile and run low – 35-36 degrees – so if I read 37 then it’s high. I also need to report every single little side effect – no matter how insignificant. So now they have an A4 sheet of my side effects of chemo so far. So I’m in a side room, so tired, in pain and generally feeling very sorry for myself – my poor Dr Syliva Taylor then calls me back – bless her, she was so lovely and worried but it was nice to hear a friendly voice – can’t actually remember what I said to her as I was a drugged up mess. But at least in the right place. I was very neutropenic again, my bloods were dangerously low. I had come in because of choking pain so this was a surprise, no warning! The thing with chemo is you feel so bad all of the time that you actually get used to it. The aches, weakness, nausea, funny taste, tiredness etc I can live with as it feels normal life now.
So admitted into hospital again but as usual no beds available on the ward I need to be on so I am moved to an isolation room in EAU (emergency assessment unit). This ward is huge – about 70 patients! The staff are mostly lovely – I have met some amazing people and learnt a lot about Greece, Poland and the Philippines – a holiday to the Philippines is now on my ‘nearly impossible, win the lottery bucket list’. Unfortunately on this ward the staff don’t specialise in chemo/cancer – but a few of the Polish/Philippines healthcare and nurses were actually trained nurses/doctors in their own country – they got me through my stay here. I was ill, in a lot of pain and couldn’t swallow anything – not even my own saliva. I had an infection similar to tonsillitis but from my throat through my digestive system – agony – so lots of antibiotics again. Ice lollies were my best friend at this point.
I just need to explain that I have followed all advise and been the perfect patient – this included swishing and gargling Difflam mouth wash a lot. But because my mouth was clear (yes, I could still talk non stop, no problem with vocal cords!) it meant there was no way to know how ill I was as you couldn’t see. Basically having chemo kills the fast producing cells first – these are in our digestive system – and combined with low white cells (immunity fighting cells ) this leads to easy infection just from our own bodies. So something else to add to the chemo side effect as it is common, but usually shows in the mouth first – of course I have to be different.
I’m given lots of drugs – high amounts of antibiotics, pain relief, gut lining drugs, anti fungal drugs etc. My arms look like a drug addicts too! They are a mess. Had a vein leak – this is where the drugs leak into the tissue – which caused excrutiating pain – felt like the crutiatus curse from Harry Potter! This happened because the nurse didn’t take notice of my pain – she should have removed the cannula. Basically every time they admitted a flush or drugs my arm felt like someone was slamming it in a door, or stamping on me with heavy boots – sure you can get the idea. In the end (3rd dose), with tears in my eyes I grabbed the nurse and told her no more! After researching a little on line I cannot believe she did this to me basic nurse stuff really! I am learning so much. When she fitted a new cannula she actually looked at me in great surprise when I didn’t even flinch (no.4). Not happy.
Friday 17th April: So by now I’m pretty low, I am starving and want to eat but very limited – I finally got some attention by escaping from my room and announcing at the nurse station that I needed some nutrients to higher my blood count and feed my body. I needed to see someone from the kitchen because of my allergies and difficulties in eating – I have realised that if a bald neutropenic woman escapes to the corridor it has effect. Luckily my darling husband had come to my rescue again with some beetroot and spinach juice – both have great nutrients for a blood boost. Also now food is sorted, the kitchen get my food cooked from the staff canteen and it is amazing – homemade tomato and basil soup, proper porridge, soft meals that I an actually eat. I have to chew a lot and basically juice with my mouth, and only very small mouthfuls and very slowly but at least I was getting something into my body. I was eating like the ‘I’m a celebrities escaping from the jungle’ – just very slowly.
Saturday 18th April: this night was my lowest point so far – I cried a lot – I hurt, was so tired, I was hungry as food was limited and most of all missed my family. And then to top it off I had an elderly demented man in the room opposite shouting, screaming and abusing the staff ALL NIGHT long! I am not a violent person but by this point I wanted to suffocate him! The other patients were shouting back – it was madness. I finally walked out of my room to ask if they could sedate him or shut his door or something but when I saw him I actually felt really sad for him – so confused and lonely – he needed to be moved to the right ward too – our poor NHS!
The positive I could find for Saturday was that I had a cheery visit from Jane and Hannah – bringing food goodies and chocolate – thank you girls for taking my mind off the pain. And I got to speak to an old school friend for a 1 and 1/2 hour catch up. She probably doesn’t realise how much she helped me by calling that night – thank you Dawn x.
Sunday 19th April: So hell of a night and still felt bad but Sunday morning was immediately brightened by a visit from my darlings (except Nathan as he was working). And at that very same time the nurse came to tell me there was a bed and room available on West Bergholt Ward. Immediately my mood lifted. Our new angels that needed their wings had come together for me! Plus someone had gone home to to free up a bed. So now I am on the right ward with a beautiful room and ensuite. I have a lovely big window and it’s a lovely sunny day. My family was with me – what a difference a day makes. Then my darling sister came to visit armed with a portable fridge, food supplies, research notes and an fake sunflower! I love my sunflower. She even helped quiz Dr Frances – bless him – he had nice teeth and was very calm. I felt like I have come back to my second home. The staff are amazing and I have had lots of welcoming back. I have been so looked after – it’s as it should be. But it makes me sad that this must happen to so many people and it’s all down to money. I have asked for a disney-cancer fastpass to get straight to the right ward in future but no! Our NHS is incredible and has saved my life so many times already but the strain on some of the staff, the paperwork and restrictions – it’s just so unfair on everybody. The effect this has on the patients emotionally too – just going through my emotions I have realised it is so important to feel confident in the care we receive and positive for our healing.
So I am mending slowly. My white cell count has gone up from 0.1, 0.4 to 0.6. I am drinking beetroot juice and eating loads of spinach with everything to help them multiply. So I just need my body to do it’s stuff and heal now.
Tuesday 21st April: Not feeling so great again today with digestive pain so going for a CT scan. Problem is I’m allergic to the contrast – so the plan is to use a milder contrast die and be ready just in case. All seems clear which is great. Just want to feel better – come on body!
Phil visited this morning which was lovely – we just chatted and cuddled – I miss him, plus he’s so warm! Missing home so much but so proud of Phil, Nathan, Lewis and Freya for doing so well and coping without me – love you all so so much. So positives of today were Phil cuddles, knowledgeable and kind doctors – Matt, Will and Frances – all look far to young to be doctors, and bloods up to 1.4! Beetroot and Spinach helping!
Wednesday 22nd April: Today is Phil’s birthday, 48 – happy birthday my darling – love you to the moon and back. Think kids are on a mission to get birthday cake and sing! Wish I could be with them all as miss them so much. Love them more than anything – I must get better!
Phil has been struggling with Freya’s repunzel hair so today my lovely friend Hannah is coming to the rescue with some girl pampering! Freya is so beautiful.
Thursday 23rd April: Had a visit from my oncologist – Dr Loo and a couple of other doctors – I am getting used to doctors gathering around my bed now. Unfortunately I have been suffering stomach ache and digestive problems still which have worsened since the antibiotics stopped. I have felt weak and tired the last few days – just want to feel better. Anyway, the plan is to do an Endoscopy to see what is happening in my digestive system and a mammogram and ultrasound scan to see if the two chemo have had an effect on the cancer. Basically she explained that it is the surgery that will ultimately remove the cancer. The chemo is to try and shrink it and make it manageable to remove and to help stop it returning – which is the problem with being HER2+ as they are faster spreading cancer cells. But with all the side effects hitting me continually they are worried my body won’t cope with a major op at the end. This is a major concern to me too as I have already lost so much weight – nearly a stone. So more tests and more waiting. But looks like bi-lateral mastectomy and lymph dissection very soon. Unfortunately endoscopy was cancelled at the last minute – Grrrr. But neutrophils are now 1.6 so that’s good. Jane Meecham came to visit me with Freya – I so needed this – along with mango slushes and books! So lovely to see them both – really uplifted me! My emotions have been like a yoyo this past week.
Friday 24th April: So today I have to starve again – light breakfast of yoghurt and blueberries and only water to wet my mouth. Still weak and uncomfortable but I feel ok. I wait all day and finally get taken down for the endoscopy about 4.30pm. Have uploaded some pictures if anyone is interested but put them under the medical pictures tab so you have a choice to look. Unfortunately the sedation didn’t work – I think I get too excited with the medical stuff and my adrenaline kicks in. So gagged a lot – more worried I was going to be sick. It was uncomfortable and the wretching hurt but totally bearable. Wouldn’t bother with sedation if I had to have again. They got some good pictures, bit inflamed and found a pollop on my stomach which is totally normal but they took a biopsy anyway. They told me then and there that nothing sinister! I think that the succession of antibiotics, chemo, more antibiotics, all the extra drugs has just hit my body so hard. What I need to do is to get home and eat a good nourishing diet to boost me with some nutrients and some gentle exercise to get me tip top for the op! Onwards and Upwards as my new friend Nicki Stanier would say!
I am now on my 7/8th cannula and loads of blood tests and pin pricks from trying to get a good vein. My poor veins and arms are covered in bruises! But now my lovely doctor sorts them out – he ‘Tracey-proofs’ them with lots of tape and kindness. He is amazing and I have every confidence in him.
Dr Matt – he is tall, dark and very handsome – he reminds me of a grown up Lewis, and Dr Will is so lovely and reminds me of a grown up Nathan! Makes me feel so old to look at the doctors and see them as if they are my children! They are both going to be amazing in their chosen field.
In fact all of the staff have been wonderful – I don’t think they realise what a difference they make – I will never forget the kindness they have shown me on this ward. From the cleaners, kitchen staff, health care assistants, phlebotomists, nurses and doctors – they have all been so good to me and I am so grateful.
Saturday 25th April: Bit fed up today as I now just have to wait – I hate waiting. But snuck out for a corridor walk again and met my lovely friend Jindy. She’s really poorly too so we can share our poorliness. Plus she is so very warm and I am so very cold so we had a cuddle and warmed/cooled each other. I love this amazing lady.
So nothing is much done at weekends. There’s nothing more they can do for the pain I have – I think it’s now just a reflux problem – it’s horrible but so long as I eat very carefully I think I should be fine – it’s another puzzle of a side effect that will just take time to heal. Plus I’m getting so good at dealing with pain. So great news is I can go home! I was so happy but also so sad to be saying goodbye to the people that I have grown so attached to! I’d make a terrible nurse as I’d be crying all the time! I doubt but also hope that I will be back to this ward but will stay in touch with some of these amazing people I have met.
Happy to be home with my family, still feel rubbish and cold and worried about the future and the unknown but I just need to take it day by day and hope I will get the best treatment available for me. Fingers crossed!
Looking forward to Britains Got Talent and snuggles tonight and will update you all again soon xxx