Shielding from COVID

Sometimes even those of us who are good with words are lost for words. This is such a time. How can I adequately describe the challenge of the times we are living in and the impact that Covid19 will have on all our lives?

Today I heard the sad news that someone I know has died of the pneumonia which comes as a result of being infected by the corona virus. By the time this pandemic is over there will be many more of us who knows someone. We will all be affected by this.

I got my letter today telling me what I already know that I’m in the most vulnerable group and will have to stay in for 12 weeks. I’ve been isolated many times and probably will again. This gives an opportunity to be creative with the gift of time we’ve all been given. For all my MDS and transplant colleagues who have queries the letter, how I read it is that as long as my partner takes all the same precautions as me we DO NOT need to practice social isolation too. That only applies if the people you live with are going out. I’m fortunate in that my long suffering partner is happy to stay home and potter about so we can properly be alongside each other in this. We are lucky in that my sister and our daughter live close by and can shop for us and leave stuff on the doorstep. They then retreat to behind the fence and we have a nice natter.

One of the challenges to those of us that are in this most vulnerable group is constantly being reminded, on a daily basis, how vulnerable we all are. It’s like filling in a DLA/PIP application for disability benefits. They make you concentrate on all the things you can’t do. I’m always looking for opportunities and pushing to do as much as I can. This pandemic is shining a light not only on the Corona Virus but also how sick and vulnerable some of us are. That’s hard. I’m an old hand at it and it doesn’t bother me so much. I’ve faced my mortality and dealt with it several times over. Not everyone is comfortable doing that and so this is a struggle. I can’t do much while I’m locked in for 12 weeks but I can Skype and FaceTime or email. If anyone is feeling sad or anxious, do get in touch. We have two ears and only one mouth for a reason. It encourages us to listen twice as much as we speak. My body may be crap but my emotional and spiritual resources are deep and I am willing to share them with you.

I don’t know about you but these things never happen at a good time. When the lockdown was enforced we were partway through an insurance claim at home due to an extensive leak. The whole floor of the kitchen and dining room needs replacing. Half the tiles have been taken up and most of the kitchen is ripped out. That’s how it’s going to have to stay for the next 3 months as I can’t go out apart from to essential medical appointments and no one can come in apart from people providing essential care.

I am not the only one to have something unexpected going on in our lives on top of all the lockdown measures. My heart goes out to all the patients in hospitals who can’t have visitors. Also sadly to the people of those dying relatives who are not allowed in either. To all those who can’t attend funerals because either they are self isolating or shielding or are not on the very limited immediate family only list. Then there are those who need social contact because of mental health issues and can’t access treatment because of the current restrictions. Many are shut inside with no garden and a significant proportion of people don’t have social media or use the internet. The list of who will need to be held in the light is endless. These are all the challenges that we all share and face.

Alongside the challenges there are also many opportunities. I’m my last blog I challenged you to sort your drawers that haven’t seen the light of day for many years. My challenge to you this time is to sort your odd socks and see how many pairs you can find. Also alongside that job how about descaling the kettle. I accomplished this with a solution of equal parts of white vinegar and water. The kettle is now gleaming and my sock drawer is overflowing with the recently reunited additions.

As human beings we are designed to be sociable. It can be extremely hard to be socially isolated for some people. Let’s also use this time to look out for the most vulnerable in our communities and family. In my road we have started a whats app group. It’s fantastic to see that community spirit emerging and taking root. We’ve all had a tough time with Brexit and the nastiness that has been unleashed as a result. Now we have a chance to celebrate our differences and be united in our common humanity. With that in mind I urge you to phone someone who you haven’t spoken to in ages and give them a boost. Sometimes hearing someone’s voice makes a huge difference. Like the quote I like says “to the world you are just one person but to one person you might be the world”

Another nice thing you can do is watch a TV series you’ve always wanted to or a DVD or listen to podcast or radio drama. I’ve been watching the excellent BBC drama called World On Fire. It’s very hard hitting and covers all the aspects of the horror that was WW2. It’s 75 years since all that happened. The Blitz and the D-Day landings make COVID pale into insignificance. Back then everybody came together. That was the only other time I’m the last 75 years that churches were closed.  We also had an overwhelmed medical resource (pre NHS). Many people volunteered and put themselves at risk in the same way that so many are today. Those of us that have grown up in peace time have not realised how easy we have had it compared to our parents and grandparents. They got through that horror and we can get through this. Just keep calm and carry on and stay in touch.

As for what’s happening with me. I seem to be doing alright on my new drug now. So far there has been no repeat of the projectile vomiting. I’ve had a bit of a bleed around and in my PEG so that could be the culprit too.

I have to go to the hospital on Monday for an essential blood test and to be seen in the breast clinic. That will Show what’s happening and if my kidneys are ok and can cope with taking a stronger dose of the new medicine.

My GvHD (Graft Verses Host Disease) is very active because of not being able to access ECP (extra corporeal photospheres ). I still have signs and symptoms of SVCO (superior vena cava obstruction) I get breathless and still have swelling around the area where my Hickman line was. This means I have to continue with those very stingy injections every night to keep my blood thin so it can get through the areas stenosis and also disperse any clots formed.  The strength in my muscles continues to deteriorate. I am struggling to stand up off the loo if I go in a place where there is no handle or ledge that I can lean on. Trying to get me out the bath provides a lot of hilarity. I also can’t sit up from the lying position in bed. My lovely partner lends me her strength so I can do this.

Before the lockdown kicked off I was meant to be assessed by the OT’s (occupational therapists) The physio thought i needed the extra help.

Yesterday I spoke to the lovely Pip who tried to do an OT assessment over the phone. It’s not ideal but we muddled through.  She is sending me a couple bits of equipment and will then do a video call with me to make sure I use them properly. There is always more than one way to skin a cat.

My final thought is around encouraging you and all those you know to implement the current rules and #stayathome and practice #socialdistancing at all times. How well all of you who are fit and well do dictates whether at the end of this you raise a glass to me at my wake or join me when we can celebrate it’s over. Your actions are important and may help save many lives. Please do what you can to stay in and stay safe. The exception to this is if you are out and about for essential work, helping the vulnerable, or DONATING BLOOD which is in short supply.

Thank you for all you are doing to keep me and people like me safe. We really appreciate it.

#highriskcovid #mdsbloodcancer
#lockdown

The challenge of social isolation

Wow. We live in very strange times. My head is spinning with different ways to get through the next 3 months of social isolation and distancing. I’m more fortunate than most in that because of having my rare blood cancer, Myelo Dysplastic Syndrome and subsequent bone marrow transplant I’ve been through extensive periods in isolation already. The worst time was a 6 week period in a tiny room at Kings and all my visitors, nurses and doctors had  to wear masks. That meant for a whole 6 weeks I never saw a smile. At the time Tina was acting as my unofficial PA. She printed a load of stickers of mouths smiling. Every time I had a visitor they chose a sticker for their mask. It was an innovative way of solving an usual problem.  As I’m used to doing this and also as I always have to avoid people with infections and public transport, I don’t feel so restricted. Also I’ve had to face my mortality many times. I had sepsis more times than I can remember now. That carries a 40% chance of death. On one occasion this developed into septic shock which carries a 60% chance of death. That time I was taken to intensive care. My family were told I may die as I was going into organ failure and wasn’t maintaining my blood pressure. So for me living under the threat of death is not a new thing but for many of you it is a new experience. I am aware of the fear that many of you are experiencing and the high levels of anxiety that are around. I know that many of you are also worried about me and other “vulnerable” family members. All I can say is this too will pass. Nothing stays the same. The more we pull together and help each other the better it will be for the whole community. With that in mind I am going to try and give some advice and challenges for anyone who follows me and would like some virtual support and encouragement. After that I will update my blog on my latest.

Yesterday I had the honour of taking Jimmy Douglas’ Funeral. I had permission from my consultant and I had to comply with strict social isolation guidelines. This meant keeping my distance from people and not shaking hands or greeting all the mourners before or after the service. It felt alien to me. I am such a tactile person and I know how healing a hug or touch can be. There were less mourners than would normally have been expected as Jim was a well loved and respected trade unionist who had made such a difference to the lives of the men and women he supported. He was instrumental in supporting one of the pits during the miners strike and lost his job to Murdoch during the Wapping dispute. How can you not honour a man who has made a difference to the world?

After I walked away at the end of the service having only said goodbye to Jim’s immediate family, my heart felt heavy. I wanted to stay and chat but knew I couldn’t. Instead I drove to a nearby seaside town which happened to be Hunstanton as I was in Norfolk. While sitting overlooking the sea my partner and I had a picnic in the car. That is definitely something we can all do during these days of separation but only if we are on an essential journey. I also stood and overlooked the sea for 5 minutes before getting back into the warm car.

As for me and how I am doing. I started my new medicine on Monday. It’s called Imatinib. Have any of you been on it? If you have, did it make you puke? Feel free to privately message me if you don’t want to write a public post reply.

As the days went by I noticed my appetite was waning and I wasn’t feeling so good. Thurs evening came and I just couldn’t face my dinner and I had a pretty horrible belly ache. All of a sudden and completely out of the blue my stomach went into a spasm and I knew I was going to be sick. I only just made it into the bathroom but started puking as I approached the loo. I am well used to being sick and managing it all. I have never known projectile vomit like it. It basically hit the toilet seat and splashed in every direction including the clean washing on the airer the other side of the room. Maggie and I are still finding splash back. Lol. It was like a gushing tap that took a while to turn off. I was also covered as were my shoes. I had to put everything in the wash before falling into bed feeling really rung out. I fell asleep quite quickly but woke up being sick again. This time I was prepared and had a bowl which I filled. My poor long suffering partner emptied it for me and got me a cold cloth for my head. She makes such an important difference to me and enables me to cope with so much. I would be lost without her. She became really worried about me especially as I had the funeral the next day. I said I’d probably be fine as I thought it might be the Imatinib that was causing the problem and I wouldn’t take it that night.

The next morning I felt rubbish and looked it. I’m never good first thing. I only managed to take half of my medications and didn’t have any breakfast or even tea. I reassured my other half that all would be ok. She wasn’t so sure. We set off with provisions for the journey as well as our picnic for the sea and something for me for breakfast once I felt able to eat.

We got as far as Cambridge before I felt I could stomach something. When you haven’t eaten much and you are about to exert yourself physically by taking an important funeral, it’s important you fuel yourself wisely. I had half a sandwich with peanut butter and strawberry jam. Loads of calories and energy but not a huge volume to get down. It did the trick and I started to feel better.

We arrived an hour early for the funeral and I had another snack. I would have loved a cuppa but can’t take the risk of purchasing take aways. Instead I had plenty of water to replace what seemed like all the fluid in my body that I had puked up the night before.

As mentioned the funeral went well and then we had our picnic by the sea before heading back down south.

So now I’m back home and trying not to worry about taking the tabs again. If I start to puke again I will know it’s the tablets. The problem is where do I go then? My symptoms are bad currently because I can’t access ECP. This means I’m really itchy and achey. My mouth and eyes are very dry. My tummy hurts. My voice is croaky and finally my breathing is crap! I know my wonderful team in haematology will do everything they can to help me but I fear they are going to be rather busy these next few months.

One of the things I am fairly good at is being creative in the face of adversity. What I’d like to do is set a change each week that you can complete should you wish. My first challenge I hope will be something you can all identify with. We all have that one drawer in the house that we chuck stuff in and we know needs sorting. Let’s take the gift of time we’ve been given to sort those drawers this week. I’m tackling my bedside cabinet. How about you? Where is the drawer in your house that pricks your conscience and you keep putting off for a rainy day? Do post a picture if you want to join in the fun.

For now, I’d like you to know I am holding you and yours in the light during these uncertain times. Please take care of yourselves and where you can each other. Please pay special attention to those who have not embraced our technical advances and are unable to stay in touch through those channels. Instead of texting, why not pick up the phone and have a chat with someone who you know might be vulnerable and alone.

With such a huge problem going on affecting the world I thought I would finish with this fact about all the world religions. Did you know there is a verse that is found with similar words in every single one of the world religions? It’s the verse that says “Do unto others as you’d want them to do to you” Modern day is treat people how you want to be treated. If we all did this wouldn’t the world be a better place?

Take care people. I’m sending safe virtual hugs on angel wings with this blog.

Ps I came across this group called The Script. I really like the song and lyrics Run Through Walls. If you look it up, I hope you like it.

Convid19

Blog

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.