17. Baptism of Fire Part 2

Baptism of Fire Part 2

Eventually a doctor arrives, bloods are taken, IV antibiotics given and a request for a CT abdomen and pelvis raised. I don’t really remember much of this, whether due to tiredness or illness I don’t know. I hear my name being called and open my eyes to see 2 of my lovely radiology colleagues who have arrived to do a portable chest x-ray. It is so reassuring to see them, to hear words of support and I even sneaked a hug with A, much to her surprise I think - I mean hugs were not allowed but I just lay my head on her shoulder and cried and she held me - only a few seconds but it meant the world to me. I have to say they did look concerned at my condition and I am beginning to think I am quite poorly.

A porter arrives to take me for my CT scan, this is all a bit hazy, I vaguely remember seeing the lovely L and holding her hand but not much of the actual scan. The next thing that I do remember is being back in my side room in A&E and hearing someone banging on the door glass. I look up and see a Consultant Radiologist who lets me know that he is reporting my scan and has come to discuss it with the team. This doesn’t bode well and I wonder what they have found.

At some point a doctor arrives and tells me that my bloods are not good, my infection markers (CRP) are over 400 - they should be well below 20, and my white cells (Neutrophils) are through the floor so I definitely have Neutropenic Sepsis and am very ill and need to stay isolated. My CT shows severe infection and may involve my bowel and appendix. I am severely dehydrated so a drip has been set up and I am told that I will soon be moved to an A&E ward for further care as I will definitely be kept in for at least a few days. Throughout my stay in A&E I have continued to have diarrhoea and have had to move myself from the trolley to a commode with a moments notice, whilst hoping no one walks in on me - not easy when I am so out of it - but the pain and the acute need to go just puts you on autopilot.

I am moved to the ward and am so grateful that I am in a side room with my own toilet! The staff are very welcoming and I feel safe and well cared for. My drips are replaced regularly and getting rehydrated is helping me feel a bit better despite my grossly distended stomach, pain and diarrhoea. My daughter has managed to speak to the nurses on the ward and has messaged me to say they have been very helpful and she is happy that I am in the right place and will be looked after well.

I have been listening back to voice messages between Sophie and I and I do sound really slow and confused. I’m struggling to eat or drink anything as it all makes me feel really sick so I have asked Sophie to send in some individual jelly pots and some clean PJs. Sadly she passed this job onto my husband who picked up sugar free jelly which will further upset my stomach, and PJs for someone half my size ( it’s nice to know how he sees me - unfortunately I currently look 10 months pregnant!). I’m not allowed visitors so my goody bag is left with the nurses. The next day my good friends J and E have been tasked with replacing John’s efforts and I receive a bag with jelly pots, lip salve, magazines and a pair of PJs - sadly the security tag is left on the top (or they may have stolen them, who knows?) so I can only wear the bottoms - honestly you couldn’t make it up! It did make me laugh though and I hadn’t laughed for days!

I am visited by a number of different doctors as no one is sure what Directorate I should be under. The Surgeon scares the living daylights out of me by saying they may need to operate and remove my appendix and a portion of my bowel! He says it so matter of factly, sees my face and then tries to back track very quickly - I can safely say I will not be allowing surgery at this point! I next see the Gastro doctor who reassures me that they need to get to the bottom of why I have reacted so severely to the chemo and says I will be put on a regular course of hydration and pain relief, as I currently have to ask for pain relief as required. She puts me on a light diet, although as I said before I was really struggling to eat anything at all. Anything I do manage passes through me with alarming speed and explosive force! She also wants me to keep a Stool Chart documenting how often I go and what type of stool I am passing. Oh yes, there are different types and the chart looks like this:

It’s very easy for me to record as I am only managing Type 6 and 7 and they are always surprised when they see how often I am going - it seems to be a surprise to everyone!

That evening I manage a few spoonfuls of soup which seems to be staying in place after an hour. I fall asleep but am woken at around 11pm as the on-call doctor felt I needed to be examined - he feels my stomach which is so painful, checks my obs and leaves. I am then on the toilet every half an hour until morning - thanks Doc!

Today I am told that I will be moved to the Gastro ward and will leave my little haven of calm and care.This really throws me, I know there are staffing issues on the main wards and I also know the side rooms do not have toilets and I still need to go many, many times a day. I get so upset and actually cry because I feel so out of control and am scared to leave somewhere I feel so safe and as comfortable as I can in the circumstances. However, I have no option, Covid patients need the rooms on this ward so for my safety I need to move.

My first impressions of my new ward are not good. The porter bashes me through the door, bearing in mind that every movement hurts me and then I am left alone. For 2 hours. My drip has finished and I was due pain relief a good hour ago. I have had to use the commode, which is in full view of anyone opening the door and need replacement bowls, wipes, loo roll etc. I press my call bell and an HCA eventually arrives. I explain about the commode and ask for a large supply of bowls. I also chase my hydration and pain relief. She explains that there is only one qualified nurse on the ward and she is currently doing the drug round and will get to me eventually. I explain that I am on a strict regime and I am now struggling with the pain and as my hydration falls I am feeling weaker and more poorly. She reiterates that they will get to me when they can. I eventually saw a qualified nurse at 8.30pm when the night staff came on and got my pain relief and drip put up at 9pm - 6 hours after I was transferred onto the ward. By this point I was feeling so dreadful I had lost the ability to fight my corner. I fully understand the staffing issue that afternoon, but a call should have been put into the Duty Matron for help if no one on the ward was qualified to help me. The nurse that came to see me couldn’t have been kinder and apologised profusely but I felt very vulnerable and worried about the next few days.

Later that evening, after another commode visit, I press my call button to ask someone to take it away. I have been told by the staff on the previous ward that, given my neutropenic status, I wasn’t to leave them but they should be taken away asap. An Agency nurse eventually answers my bell and I point to the commode and apologise but ask if it can be taken away. The nurse gives me the dirtiest look and says, ‘we are dealing with seriously ill patients out here, we haven’t got time for this, someone will come back later!’ and just leaves. I am mortified and so upset, I couldn’t even formulate a response. I would NEVER treat one of my patients like that!

I get to Friday and the Gastro Consultant has been to see me and has expressed concern that my CRP is still over 400 but would take bloods again today as changes can take a few days to show up. They are obviously still concerned with my epic bowel movements but do not seem worried that any surgery is required. They think that this is just how I react to chemo and don’t think that any further investigation such as an endoscopy would do me any favours at the moment. She advises me to just try to increase my food and fluid intake, little and often and then we can consider removing the hydration drips and getting me home!

I am also getting regular visits from the AOS Nurses who are just amazing! Thay are like determined terriers and will not let anything go. They raised my concerns from my arrival on this ward, they ensured my pain relief and hydration has been regular and have just generally been so kind and supportive - what an amazing service they provide - I feel incredibly lucky to have them on my side.

The next few days pass in a pretty similar fashion, lots of commode visits, regular drips and pain relief and also a lot of laughs with all the fab staff looking after me. After the first day debacle I have to say they have been absolutely amazing and I feel very at home and safe.

On Saturday night there was some excitement that caused me great amusement. I had my tea at around 5pm and still hadn’t been to the loo by 9pm - this was a very rare occurrence and I had spent those 4 hours just waiting to go! At about 9.15pm the feeling came over me and I rushed to the commode and I couldn’t believe it! It didn’t woosh so definitely not a Type 7 - had I possibly done a Type 4 poo? I was so excited I grabbed my recording sheet and……..nooooo! I think it may only be a 6! At that moment my favourite nurse Frank popped in and I excitedly told him my news. He got just as excited as me and as my main light was off he got his pen light and started reviewing my efforts. ‘I think you are right Julie, wow how exciting!’ He looks at my chart and we have a very interesting chat about the various characteristics of my poo but sadly come to the conclusion that it is no better than a Type 6 - but progress nonetheless! This makes me laugh so much everytime I think about it - honestly I have absolutely no dignity left!

I had a bad night on Sunday, there were problems with cannulas, I couldn’t sleep and just felt generally down. I couldn’t see an end to everything and I’m concerned that every cycle will be like this. I am just fed up and really want to go home.

By Wednesday I am feeling much better, my stomach is no longer as painful and my bowels are opening less. I am visited by yet another Gastro Consultant, who was only about 12, but was very good! He is very pleased with my progress, my CRP is now 30, still high but nothing like the 400 that it was! The rest of my bloods aren’t normal but are all going in the right direction. The Consultant admits that I still don’t look great, I’m still very pale (even more so than usual) but he isn’t too concerned as he thinks I will now improve fairly quickly. He wants me off the drips just to see how I cope living ‘normally’. I will be able to move around better, have a stretch, have a proper wash and just see how I get on. If all goes well today then he will consider sending me home tomorrow!

My next visit is from the AOS Nurse who saw me in A&E and the relief on her face when she sees me is palpable. She says she was so worried about me as I looked so ill and was so glad to see me looking so much better. She thinks we should delay my next chemo cycle by a week as I need time to recover from everything - this saddens me as I just want to get through it as soon as possible but I totally get where she is coming from - I need to be as healthy as possible before I go through it again. She goes away and sorts everything out and texts me all my new dates and times. So now I have an extra week to rest up and get well before it all starts again.

Thursday brings 2 bits of good news, the first is that I will be discharged today, it won’t be until this evening but I’m going home so all good. The second is even more exciting - I have done my first Type 4 poo!!! I feel very proud - what more can a girl want or need?

Sophie comes to collect me and I eventually get home at 6.30pm - it's been a long 9 days and I’m nervous of losing the ward safety net but so, so glad to be home.

I improve daily as I would expect, even without the drama of the Neutropenic Sepsis, I would have expected to be unwell for around 10 days before gradually improving and hopefully the 3rd week would be almost normal - just in time to start all over again!

Saturday morning brings more surprises as my hair starts to fall out in handfuls. This is a shock as I was expecting to at least get through cycle 2 before I had to face this. On top of all the drama of the past week I get very down but work hard to get my head back into a good place. I experiment with various head dresses, channelling Norma Desmond and even Professor Quirrell from Harry Potter - I get lots of support and lovely comments as I post my photos in the family group chat but I’m not so sure I am particularly skilled in this head covering lark!

As the date of my next cycle approaches I am quite anxious but a telephone consultation with my Oncologist helps to put things into perspective. Mr Vazquez has decided to reduce my dose by 10%, I am concerned that this will have dire consequences for my outcome, but obviously this is not the case. It will still be a therapeutic dose but will hopefully just be more manageable for me. I really must remember that these are professionals and know better than me how to treat this crazy disease!

Now I can spend the next few days getting my head into a good space to take on cycle 2. I know my care team will do everything to help me minimise any side effects and hopefully what happened last time was just unlucky and this time everything will be much less traumatic. I am anxious, with my hair loss I now feel like a proper cancer sufferer and I am struggling with tiredness and joint stiffness, but this may be due to a flare up of my RA. I need to remind myself that I have been through a really traumatic couple of weeks but I survived - it can only get easier, surely. And life carries on.