Convid19

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I wrote this blog over 4 days. You will see from reading it that things have changed during that time. I decided to let it stand the way it is to reflect the fact that it’s like walking on shifting sands just now. We just don’t know what’s going to change and when. 

As I write this I’m also watching the news and listening to the hysteria about corona virus. I can’t believe people are stockpiling. I saw a young woman today with a supermarket trolley full of long life milk and toilet rolls. I was astounded at the number of shelves that were empty too. We live in very strange times. 

As someone who really doesn’t have an immune system, I fall into the category of the vulnerable. The advice I was given yesterday was to stop doing my voluntary work at Canterbury Cathedral and to avoid anywhere with lots of people. This has also meant I had to let down the local primary school where I was meant to take an assembly for them. I really hate letting people down. 

The last time I went to the supermarket was at a quiet time and I wore gloves. If it had been busy I would have put on the mask I had in my pocket. It’s a real balancing act between not putting myself at risk but also not over reacting. Now I can’t even go to the supermarket. 

This week I was seen by a new consultant in a new department for me. The doctor was lovely and the Respiratory Clinic ran smoothly. He told me I have mild sleep apnea, something maybe not quite right in the middle of my lungs and mild pulmonary hypertension. He will repeat the lung function test in 3 months and see what’s happening. He said he’d need to keep a close eye on me. 

It’s challenging accepting yet more diagnosed problems. What other choice is there though?  The only way I can keep sane and as emotionally healthy as I can is by looking outwards and making sure my focus is not solely on me and my illness. 

My Haematologist said that it’s looking very unlikely that they are going to be able to put a hickman line back in. I still have the SVCO (superior vena cava obstruction). My face and neck are still swollen and I get out of breath really easily. The problem is without a line I can’t access ECP. I’m currently experiencing a flare in symptoms. My skin is awfully itchy and marks easily if I scratch it. I’m running to the loo more often. My mouth and eyes are really dry. My muscles are sore and weak and my joints are stiff and painful. On top of all that, if I exert myself I get breathless and sound like Ivor the Engine because I’m so wheezy. 

My doctors are looking to maybe starting me on a drug on compassionate grounds. I’m up for trying anything that might possible help. The fact that I can’t access ECP at the moment adds to my case seeking approval for a new drug. 

I think it’s gonna be an interesting few months. I’m not going to be able to do much socialising in large crowds like the theatre or cinema. On the flip side of that I will have lots of hospital appointments, so can’t keep myself totally risk free. 

I started this blog a few days ago. Things have continued to rapidly change since then. I’m now being told to socially isolate. I’ve been doing that in the main but now I need to do it more earnestly. My physio consultations are now going to be on the phone.

I have been approved for imatinib. This is chemotherapy that is taken orally. I will start on a low dose to minimise side effects and slowly build up. It will mean weekly blood and heart tests to start with. This obviously has to be done at the hospital. 

The hospital has a different feel to it just now. There are a lot less people around and everyone is being made to wash their hands. Despite their best efforts to keep people away who have the virus some cases have been diagnosed at Kings. I received the attached letter which was a bit disconcerting. I can imagine some people being really worried and anxious if they received such a letter. With all the talk of mental heath lately maybe there needs to be that welfare element added to communication like this for those who need it. 

On top of all this I have a lump in my breast. Oh what joy! I’m now on a two week rule referral for it to be looked into. I’m really not worried about it at all. Breast lumps are nearly always benign. I just don’t want yet more appointments and more invasive procedures. Unfortunately, as secondary cancers are possible for people who have had a transplant, it needs to be looked into. 

I’d like to finish off by encouraging you not to over react to the media hype around  corona virus but do take it seriously. If it’s making you anxious try and hold on to the fact that if you are otherwise heathy this shouldn’t cause a problem for you. Also if you do fee anxious, that’s what people with cancer or it’s complications live with every day. We are always looking for signs of infection and trying to avoid people who may be unwell. Allow this experience to give you a deeper sense of empathy for those who suffer this on a long term basis. 

I’d also like to encourage everyone to send positive vibes to the medics who are working under very difficult circumstances just now. I’d also like to widen that to the researchers and pharmaceutical companies working on a vaccine and some treatments for this awful new virus. 

#highriskconvid19 There is a real campaign now to encourage social isolation. I urge you to not only wash your hands thoroughly but also to avoid big crowds if someone in your circle is vulnerable. Keep away from others of you feel unwell in any way. 

My final thoughts on this convid blog is to say look out for each other. Some will find social isolation difficult. Let’s make sure we not only text and use social media but that we actually pick up the phone and talk to each other. If you know someone lives alone, check on them. My cousin put a post on Facebook earlier saying she has a day off tomorrow and will happily go shopping for anyone who needs it. That’s the community spirit we need. Well done Jenny for being who you are. I hope many others will follow your lead. Go on people be part of the solution. 

Thank you to everyone who is helping me to stay safe. Your love and kindness means a lot. I’m sorry I can’t get round to seeing you just now but we can make up for it when this crisis is over.