12th-19th February – a week of conversations

This week has been an interesting one. It’s been a week of tough conversations and trying to come up with a plan. 

Symptoms wise: the fevers continue on and off, and with that comes chills, sweats, episodes of rigors, bone and muscle pain, neck pain, nausea and more. My urine – despite still being on another course of IV antibiotics – got more and more smelly and the symptoms were ramping up so we organised for another course of IV Ceftriaxone which I started Friday (19th). I’m not ready picking up on the antibiotics, they just about make a small difference initially but that is only small and by day 3 I start going downhill again, and each time they are less and less effective (no matter what IV antibiotics we use). My chest is getting a bit worse again, but I really hope that doesn’t develop. My chest has been bad since September and I’m much more out of breath and struggle to manage my own secretions even with nebulisers and other intervention. I also found at the end of this week that I’m running low on ventolin (salbutamol) nebules, oops, I’ve put an e-prescription in and will ask if they can expedite it. I’m having to ration the salbutamol til we get more. My eyes are still playing up. Cognitively not at my best, memory isn’t great (have to keep checking with mum to remind me of things as I write this), word finding is poor and I am terrible with names — this is almost the worst bit as I pride myself on my brain, mind and intelligence and it isn’t functioning properly at the moment. It’s the only bit of ms that works! I can’t read volumes of text as it triggers my eyes and also I keep forgetting what I’ve read. This is the girl who can skim read a paragraph of text in a few seconds, now I can spend 5 minutes reading the same 3-4 sentences as I can’t retain the information (or process it in the first place). It’s so frustrating and upsetting. 

Friday 12th February 2021 Helen my community palliative care nurse came round and we discussed my situation and what help she could give. She left saying she would speak to Dr Tosh, the palliative care consultant, about my case and see what he thinks we should do. Helen later rang me back after she’d spoken to Dr Tosh and relayed that Dr Tosh would take a few days to look over my notes and then speak with us and make arrangements, including for an admission to Fair Havens. 

The weekend wasn’t great and I continued to go downhill. Not been a great week either. I did have a private immunology appointment and he said if definitely could be an immunodeficiency that makes me so susceptible to infections, and why my  white blood cells (that fight infection) never move even when septic — they should rise sharply in response to infection, but mine don’t change at all. So it’s £1750 worth of blood tests (plus £250 per consultation and I’ve had one and will need at least one more after the tests come back to get the results) and we will have to go to London to do the bloods, but it’s worth it as if it is an immunodeficiency, there is a treatment you can have called IVIG (Intravenous Immunoglobulin) and that could allow my body to kill off or dampen the infections. It would be a long term treatment of monthly infusions but you can do them at home and obviously I have all the setup to do that already. If it’s not that then hopefully other tests will find something wrong, something underlying that’s causing all these infections and issues and that it is something we can treat. Hoping for positive tests even if it’s really bad is an odd headspace to be in, but in my case we hope for something (anything) else to be wrong as it might have treatment options that could prolong my life, improve my quality of life and allow me to return to some normality, whereas if it is just condition end stage and incurable infections then we are almost, if not completely, out of options. Basically if we don’t find something else wrong, I’m f***ed. 

On Tuesday a friend and colleague of mine, who also happens to be a palliative care specialist nurse (CNS), who until recently worked at St Christopher’s Hospice, London, was travelling locally to us to do some consultancy work with a colleague from the hospice locally, and offered to pop in (in full PPE) to have a chat. She had been helping us out voluntarily over the last few months giving advice about my care and things to explore and people/services to contact etc. So she came over, bringing with her someone from the local hospice. P and K had a long chat to us about everything and agreed that an MDT would be useful and that the J’s, whom I’ve been under for 10 years now (formerly a young adult hospice at home service, currently in a huge identity, remit and organisational evolution/transition), the new nurse leading that service will be able to help with a coordination type role of the MDT and possibly help with other things, but that much of what I need is not able to be provided by them now, and thankfully being under the adult community palliative cars team and Fair Havens, their support will provide the support I need. We had a difficult discussion about what’s happening and the reality that there may be nothing else we can do. If near-constant, very high dose IV antibiotics aren’t working, how on earth will a low-dose, 3-4 dose per week IV antibiotic work? We discussed my wishes for treatment and care, my fears and worries, how frightening this is, how bad things are, what the future may have in store and we need to prepare ourselves for worst case scenario (nothing else we can do, no more treatment, no more antibiotics and let nature take its course), but still hope for us being able to do something. It’s really bad when your best case scenario is most peoples worst case scenario, but I’ll take whatever I can and make a positive of it. 

Thursday Dr Tosh, the palliative care consultant came round and we spent over an hour and a half with him. He did reflect back how bad things are and the precarious situation I am in, but that we’re not throwing in the towel yet, as we’ve not ruled out potentially treatable (or even fixable) issues. It helps that he’s seen me give a speech or possibly more than one and so he’s seen me at my best, and can tell the difference. We went over our plan, he’s going to speak to all the professionals involved in my care, get copies of test results and scans I’ve had over the last few years (as my treatment is in London there’s a disconnect which means he can’t access all my records from London, he has to ask to be sent specific things), speak to a couple of his colleagues and other doctors he knows including an infectious disease specialist to gather their thoughts, advice and suggestions for possible issues and what tests to order, he will then order the necessary tests and then bring me into the hospice for a review and symptom management stay, and I will go from the hospice to Southend Hospital for any tests needed and back to the hospice. We’re trying to rule in/out other causes of the infections, other causes of why my body doesn’t fight infection properly or what other diseases/conditions could be causing me to be so susceptible to infection and unable to fight them off and causing all my new/unexplained and uncontrolled symptoms. Dr Tosh is glad the immunology bloods will get done as those couldn’t be done on the NHS without an immunology referral, which would take forever, so good job we’re doing those privately. I mentioned I wasn’t able to sleep well and maybe upping my buccal Olanzapine might be an option but instead we are going to add in buccal lorazepam to try and help me sleep (and stop the Olanzapine). Usually I’m so against benzodiazepines and sleeping meds as so many make you drowsy in the day and that affects my ability to work, but obviously now that’s not an issue as I can’t work anyway! I may even have more energy in the day if I’m sleeping better at night. So that’s great. He was so lovely and really understood. He’s sorting out my DNACPR – I endeavour to write a blog about my DNACPR decision soon – and will help with my advance decision and treatment escalation plans, so that’s great. Dr Tosh said how pleasing it is for palliative medicine professionals when their patients are upfront, open and very clear on their wishes and documenting those wishes properly, as – still – the majority of palliative care patients don’t make advance decisions or discuss DNACPR or consider when and if specific or general active treatments and interventions are in their best interests. I’m glad I can be clear and direct about my wishes. I will blog more on advance/anticipatory care planning (ACP) and specific documents and my own decisions another day. We have a plan – I’m fine so long as I have a plan! 

I just feel like I’m in limbo at the moment – here, alive, but not living. I can’t do anything or really enjoy anything. I’m bored of watching tv and Netflix and prime and YouTube and constantly forgetting the plot or story or struggling to process and remember the content I’ve just watched. I want to go back to work but I’m not well enough and I know that — I’ve tried and all that happens is that I struggle, can’t do what I need to, exhaust myself in the short time I am trying to do it (adrenaline doesn’t last long!), make myself more ill and get very upset and frustrated and angry and end up in tears ‘cause I can’t do it. The girl who is the master at pushing through her illness (me) can’t even push through now. I’m angry and feel so lost. I feel like I haven’t got a purpose. And my purpose is what drives me. I’m no use to anyone anymore/at the moment. I can’t function. Even these blogs take hours and days of writing, writing in small chunks, as and when I can, with lots of mistakes and having to ask mum to remind me of what’s happened so I can relay it in the blog and so on. I’m miserable. I just want to get back to work and life. But that may never happen. So, I continue to live in this limbo. I’m not even ‘me’ right now. I’ve lost me, who I am, my purpose, my meaning, my life. I just hope we can find something we can treat so I can get back to living. But all we can do is hope for the best and prepare for the worst. By god am I hoping.

4 thoughts on “12th-19th February – a week of conversations

  1. Lucy, don’t ever think you are of no use, your blogs are brilliant! There is so much learning for all of us in you sharing and describing your experiences and your advice. Also, how you are managing an extremely challenging and difficult time in your life is very valuable! Thank you! Robert

  2. Love you Luce 💕 wish I could
    Come and give you a hug! IVIG was a great treatment for
    Me! Please make them let you try it! You have the first few in hospital to check for reactions and to slowly increase the rate but then you can do it at home with very strict records of what batches ect you have used😂 I know how you feel about the limbo 🥺 sending so much love!!!!

  3. Dear Lucy. this is an incredibly powerful blog, and one in which you should be immensely proud of. In my estimation you are magnificent in being so brave, honest, and informative. This offers the reader the opportunity to gain an understanding about your painful position you are in (and by that I mean emotional and spiritual). You indicate your need for meaning and purpose . I can tell you that your purpose right now is there as you are offering the reader some understanding about your internal pain (physical and emotional) as you face your situation and your life and end of life. This must offer meaning to you and your life; it has purpose. many people continue to learn from you, professionals and others alike

    I can only offer my humble thanks , respect and amazement in your brave and courageous openness

    My Love and multitude of blessings to you Lucy. Peter xxxx

  4. Hi Lucy. Just sending you a little note to say that it’s ok for you to take time out to focus on you. You have given so much to others and been a constant and awesome inspiration to all those facing significant life challenges; whether these be physical or mental. It must be an incredibly stressful time for you right now, trying to get access to the right treatments as well as dealing with all these awful symptoms. Just hang in there, and I will indeed keep you in my thoughts and prayers. Keeping my fingers crossed that the antibiotics will start to work and can help you feel a little better. You are a true warrior! I love your blog idea and hope it will help keep you connected to those who you may not know personally but who know you through your phenomenal work. You stand for everything that epitomizes the words “life well lived”. Sending you positive energy and I hope you get everything you need to help you during this difficult time x

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