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. 

More challenges... is there no end?

What a dogs breakfast! 

Hello everyone ,

I hope you are ok and doing as well as you can with what life is throwing at you. 

My life continues to be challenging. I am still an inpatient at Kings. Yesterday they told me I could go home. Then I was told I needed a lung function test, a chest CT and I also needed a blood transfusion before I could go. I didn’t let that dampen my happiness at going home and I set about packing my bags. My sister and niece came for a visit and she then took most of my stuff home to save my partner needing to carry that as well as support me. It was approaching 9pm and I had the scan and lung function and was just waiting for the blood transfusion to finish. Isn’t is great that a stranger to me saved my life last night in the form of nice juicy red cells. 

One of the senior nurses came in and he said to me “Kes I’m sorry to say the CT has shown a clot and you can’t go home” I was gutted. I also had no Pjs and no toiletries and no change of clothes and no food or teabags because my sister had taken them all home. 

I spoke to my partner and shed a few tears. I was so looking forward to getting back into my own bed and being warm and cozy. My room at the hospital is really cold. I don’t like the cold at all and I’m sure that’s why I’ve got a stiff neck on top of everything else. 

I gave myself a talking to and went into practical problem

solving mode. I spoke to the nurse and she was able to get me some fetching green hospital pjs. She also gave me a toothbrush and a little tube of toothpaste that tasted like soap. Beggars can’t be choosers. 

I put the pjs on and slid into bed and watched some crap TV. 

The nurses this morning have all been incredulous at what happened. They are a lovely bunch. I won’t know what’s happening until late this afternoon as that’s when the big ward round happens. The doctor I saw last night said I may need something doing before going home or I may be sent home on a treatment regime.  She wasn’t sure and said the more senior docs would decide in the multi disciplinary meeting what was to happen next. 

Meanwhile I sit here in my green PJs and I wonder where or when this is all gonna end. It just seems relentless. I try to organise things and commit to do them, like I did for Terry’s funeral this week. Then I find things get in the way that stop me from being fully committed yet my commitment is every bit as strong. The spirit is very willing but the flesh is fragile and unpredictable. I was lucky that the team let me out to do Terrys funeral. It was a privilege to be able to lay him to rest alongside his wife who died only a month ago. My heart aches for this couples only daughter as she tries to make sense of all this and get on with life despite the pain she feels. Her situation makes me count my blessings. 

So the update for this as there was a gap in writing as a stream of medics came in. I saw my lovely Italian consultant. He apologised for having to still keep me in.  He explained that he needed an opinion from the vascular surgeons about how to deal with the clot. He said he thought the line would need to come out in the vascular theatres but he wasn’t 100% sure. Then he told me my lung function has seriously deteriorated and that I needed a bronchosopy. He said a tube would be placed up my nose and into my lung. Then they would flush it with sterile water  and then remove the fluid which would also remove some lung cells which they can then test. Sounds horrible. The various ways I’ve been tortured over the years are amazing. There seems to be no ending to these awful procedures. I think when you have a patient who has had to endure and continues to put up with so many horrible experiences, that everything should be done to minimise the impact of these tests. Psychologically these things add up and have a huge impact. Also it would just be kinder if these things were made easier for us long term patients. 

Fingers crossed I get out of here tomorrow. I’ve had enough now. It’s only been a week but I want to be surrounded by my own things and be comfortable instead of being incarcerated in this iceblock of a room. At least one of the lovely HCA’s found me a heater so it should start to warm up. 

Tonight I’ve been told my line can’t be used and I have to have my Iv’s via a cannula. That’s gonna be fun. Tonight I’m having IV antibiotics, a calcium infusion and a 6 hour phosphate infusion. 

Let’s hope and pray that tomorrow brings good news. 

A bit of a mix up

My life with cancer and the effects of treatment is never dull. There’s always something going on. 

Recently the team looking after me decided they wanted to push things with some of the other departments involved in my care so that a more holistic approach could be used and maybe they would be able to refine the medication I take. 

Last Monday I was booked in to have a colonoscopy as well as an endoscopy and they were hopefully going to remove the PEG at the same time. This was all to be done under a light general anaesthetic. 

I’d been asked to go in for a pre-assessment meeting. That appointment got changed twice and when I got there I saw a nurse who didn’t flag anything up. He gave me 4 senokot Tablets to be taken at midday on Sunday. Then he also explained that the 4 sachets needed to be given in a divided dose, 2 of them had to be mixed with a litre of fluid at 1pm and the other two with another litre of water at 6pm. I was also not allowed to eat after I’d had a light breakfast on Sunday morning. Not eating is not normally a problem for me but when you are on steroids, you really need to eat regularly. 

As you can imagine it was hard work. I gradually felt weaker and weaker from all the running to and from the loo. Things eventually calmed down and the mini explosions eased off. I had to set off for Kings early the next morning. Now I wasn’t allowed to eat or drink anything. 

When I arrived I had my obs taken. Then I was asked to change into a gown and they also gave me these paper shorts that had a flap in the back for ease of access. Lol. At least it keeps the rest of you covered up and protects your dignity. 

I went through some questions with a nurse. Then a doctor went through everything and asked me to sign a consent form. Next the anaesthetist came in. She asked me if I had attended pre-assessment. I said I had and she wanted to know why an anaesthetist hadn’t been asked to see me at that meeting. She explained that was the whole point of the meeting. I said I was unaware of that. She said it was a failure of her department and she was very sorry that things had not been sorted earlier. Then came the killer. She said she wasn’t prepared to put me to sleep because of the additional problems I have and because I’ve still got swelling in my neck. She also said she would rather have me asleep in main theatres in case anything goes wrong. That way there are more people around to help should there be an emergency. I couldn’t argue with her as I could see her point of view and she was only trying to keep me safe. We also talked about that awful experience I had during the last but one anaesthetic where I woke up but was still paralysed. She wants me to see a councillor to make sure I’ve not been psychologically injured or am carrying too much trauma. She was extremely thorough and I was impressed by her. What wasn’t impressive was that the system let me down. I had to starve myself for 2 days and do all that bowel prep for nothing. I was so frustrated at the thought that at some point I’d have to go through it all again. 

What I think causes problems like this is the system treating everyone the same rather than looking at the individual in front of them. We don’t all fit into boxes. Some of us have very complex medical histories. We are expert patients though and carry our story from one medic to the next. The only trouble is we don’t always know what the system requires. Let’s hope and pray that the pre-assessment team learn from this and that other patients don’t have to be put through the ordeal of bowel prep and no food for no reason. 

Moving on, I’ve been booked in for a load of extra tests but the surgery hasn’t been rescheduled yet. The problem with this is haematology want the biopsy results in order to decide on a different sort of immunosuppressive drug. They can’t move forward until this is done. Where they can get on, they are. I’ve started a monthly infusion of a bone strengthening drug. I’ve also been approved for IVIG treatment. Immunoglobulins are in short supply nationally and in order to receive them your doctor has to make a case to a panel. My doctor told me today that a years worth of treatment had been approved. This is good news. She also said that one of her patients was turned down. I hope and pray more people donate to help reduce this shortage. IVIG infusions will give me some antibodies to fight infections. At present I seem to catch anything going due to my low immunity. 

I went to bed last night feeling a bit heavy and I was really tired. In the night I kept waking up because I was too hot. I thought the heating was on. I was also achey and very itchy. This morning my arms were covered in bruises where I’d been scratching. I also felt rough. I took my temperature and it was 38.4. My sats were 92. My heart sank. I was meant to be going to Canterbury Cathedral for a training course and then I was going to spend a lovely weekend at my sisters and she had planned for all the family to gather on the Saturday. This has been deferred from just before Christmas when I was admitted due to having flu. I knew I had to ring my lovely CNS and I knew she’d say I had to come in and be checked. I so didn’t want to do that though. Sadly after checking me over the lovely Dr Shu decided I needed to be admitted. I am gutted. I want to be having fun and mixing with the gang. I don’t want to be away from my partner on Valentines Day. I don’t want to be stuck in a place with rubbish food and crap views out the window. Yet I also know I’m fortunate and blessed. I’ve had xrays and blood tests. I’ve been given IV antibiotics and now have a 6 hour phosphate infusion dripping through me. I don’t have to question if I can afford it and I know my team will always do the best for me. That doesn’t mean that sometimes I don’t feel sad though or hard done by. I hate the impact all this has on my family and social life. It makes it so difficult to plan. I do plan things, like spending the weekend with my sister, and then I have to take it on the chin when these arrangements are scuppered. 

Let’s hope this is going to be a very short admission and I’ll soon be getting up to mischief again. 

Thank you for all your love and encouragement. Let’s hope that one day this will all be a distant memory. 

https://www.facebook.com/1400712590226152/posts/2295077360789666/

Phillip Scofield out and proud!

In Britain today there is lots of chatter about sexuality. One of our best loved presenters has come out as gay despite having been married for 27 years. 

Phillip Scofield is a national treasure and is often on our screens. People are surprised and don’t understand how you can be married for 27 years and have children and then come out as gay. The problem is they are looking at it from the wrong perspective. It’s more a question of why couldn’t he be who he was meant to be from the start. 

Those of us that grew up under the governments section 28 which banned the “promotion of homosexuality “ will understand the fear of finding ourselves attracted to someone of the same sex. Society told us it was wrong. The government told us it was wrong. The church said it was wrong. In fact, for men, it was illegal till 1967 and after then it had a higher consent age than for heterosexuals. Homophobia was the norm in schools and workplaces. Coming out was a big deal and LGBTI people risked being shunned by their families and friends. 

On top of the toxic section 28 we also had a problem with HIV and AIDS tearing through the gay community alongside others like drug users and those who received contaminated blood products. However the gay community was singled out as being the worst of the bunch and narrow minded bigots would say it was the wrath of God who was punishing the “fags” like what happened in Soddom and Gomera. 

When it’s put like that, why would anyone come out? To do so meant risking so much. It’s this pressure that becomes internalised homophobia and forces people like Phillip Scofield to comply with societies norm. Many LGBTI people marry because they feel they have no alternative. It’s just what’s expected that you get married and have children. 

I have always maintained that heterosexuality is not the norm it’s just more common. 

Sadly if you are LGBTI, and have tried to be heterosexual, eventually you will struggle to live something you’re not. Even if you love the person you’ve married very deeply, you still feel empty inside. You feel the pain of not living your truth. One of the tragedies of this situation is that some people become so unhappy because of the rejection they feel that they take their own lives. 

I think the Church in general but particularly the Church of England  that I’m a member of should hang it’s head in shame for its part in contributing to a society where homophobia is tolerated. Only recently we had the awful statement from the Bishops which basically said sex was only the preserve of married heterosexuals. This, quite rightly, caused uproar and then a few apologies were forthcoming. What I find so distressing about the institution and those who prop it up is that they spend all their time being consumed by sex and genital acts and they never mention love at all. For me though, love is central to the Christian message, in fact all the world religions have love at their core. Why can’t we learn to live in love and celebrate our differences and leave sex to the consenting adults that wish to practice it. It’s time for the church to take the verse from the bible to heart “be still and know that I am God.” Another way of putting it is “let go and know that I am God” The Church Universal needs to let go of its obsession with sex and start living more in love and light. That’s what our world needs right now, not a few outdated people pontificating often from a position they have no knowledge of. 

I think Phillip Scofield was brave to come out because he is such a public figure. I think his wife is brave as well, as are his daughters for being alongside him in this and for continuing to share the love and support and respect they have for each other. I hope people leave them alone as they heal from any hurt and allow more light and love in their lives. 

As a priest in the Church of England I also want to apologise for the hurt and pain caused to LGBTI people and their allies. I want to apologise for the rejection experienced by same sex couples who would love to get married in church but can’t because of the church rules. I also want to apologise for the fact that, if asked, I could bless a spider, snake or cat. I can also bless a tank that is involved in killing and maiming people but I can’t bless a same sex couples union. I want to apologise for all those who have been forced out of churches or into the now banned conversion therapies. It’s no wonder the shortest verse in the bible is “Jesus wept” Most Christians have no problem at all with same sex relationships. Sadly there are a few people who have closed minds but very open mouths. They say they speak for the Christian voice. They certainly don’t speak for me or as I say the vast majority. Please don’t judge God by the action of these insecure bigoted people. 

This week something significant happened. An ordinary man, who is much loved, has forced people to look at their own homophobia. Phillip I applaud your courage and respect how you and your family are dealing with this challenging and painful yet liberating time. I applaud you for your decision to come out and will be holding you and your family in the light. 

Rebel Rev’s round robin

Dear friends,

Please excuse my very long lapse in providing you with an update of where I’m at. Life, post transplant, continues to be a struggle for me.  In fact my quality of life these days is worse than it was pre transplant. I still live in the hope that one day things will improve. In the meantime my life consists of attending Guys Cancer Centre for 2 consecutive days every 2 weeks. I also attend Kings most weeks and sometimes have to visit my local hospital too.  I have to be highly organised to fit all these appointments in. 

My list of medications is vast. This is another area I need to be highly organised in. I really feel for people who are illiterate of vulnerable. It’s an awful lot to cope with but I’m lucky in that I have a fantastic support network around me. 

One of my biggest problems is my ongoing battle with GvHD. (Graft Verses Host Disease) The amazing team at Kings started me on a new immunosuppression drug to try and tackle this. It seemed to be working but sadly made me throw up continuously. In the end I couldn’t even keep an ice cube down. Sadly that medication had to be discontinued. The team are now trying to get a drug released on compassionate grounds. This means it’s not quite licensed yet but probably will be. 

On top of this my immunoglobulins are low. This means I don’t produce the antibodies needed to fight viruses and infections. I’ve had flu the last two years. Each time this has resulted in me being admitted to hospital. With all the news about corona virus at present it’s a scary time. I need some infusions of IVIG. Unfortunately there is a shortage of this and my team have to make a case to a panel to see if I am sick and vulnerable enough to have it. The NHS is really struggling at present and I yearn for the day when people realise it’s worth paying more tax to preserve this amazing institution. 

On top of hospital appointments, GvHD, reactions to medications, flu and opportunistic infections, I am also suffering from extreme muscle weakness. I fell in the public library recently because my legs didn’t support me as I tried to stand from a low chair. I felt such an eejit! 

Another unexpected problem recently involved my Hickman line. It had been blocked and not working for a while then I developed a large swelling near the line that went into my neck and face. I didn’t look like me because everything was so puffy and swollen. An urgent CT was requested which showed a potential clot and several areas of stenosis. This is where the blood vessels narrow and stop the blood flowing through. I ended up needing urgent angioplasty surgery. They put a balloon into the vessel and inflated it then pushed it through to stretch and dilate the vessel. A month later I’m still puffy but the line is working and maybe the lump is slightly less. As a result I have to inject myself every day with a powerful blood thinner. My poor tummy is really bruised. 

It can be so hard to be outward looking when there are so many things to deal with. Next week I’m having a general anaesthetic to remove a polyps as well as check out my stomach and maybe remove my PEG. I will be so pleased to have one less tube coming out of me. 

This Christmas I was too unwell to send Christmas cards. I’d been an in patient just before the festivities with flu and I felt washed out. Please accept my apologies for not sending a card. You still have my love and hugs. Out of sight doesn’t mean out of mind. 

One of the things I long for and also hope will come to fruition this year is to be able to go abroad on holiday again. I’m fortunate enough to be able to go to Ireland but I’d love to go to Spain and also explore more of Europe. I’m also desperate to go further afield and visit my sister in Canada. The problem with all these things is that it depends whether I can get travel insurance before I can even contemplate heading off. Fingers crossed this year will be the one I get to travel again. 

Despite dealing with a continuously changing landscape I am trying to do a few things. I still do my regular audio diary with BBC Radio Kent. I get some lovely letters and cards from people who listen to the show. It’s very humbling. I am now also part of the volunteer chaplains that cover Canterbury Cathedral during the day. I am able to book myself on the rota for the afternoon, so that works well for me as I still find mornings difficult. I am getting stronger and hope to soon be able to start taking more services and cover for colleagues who are away. If you need a hand with anything and have a service that needs covering, then get in touch. I need to be active all round because I am more than just the sum of my blood work and physical problems. I am also an emotional and spiritual being. I need to be invited out by friends and have my spirits lifted. I need fun, laughter and mischief in my life. I also need to be creative and be intellectually challenged. All these things are necessary if I’m going to get through all this. 

As is always the case, when there is long term suffering or illness, friends can fall away. Some people just find it too hard to stand in the face of such suffering. That can be hard but is also just part of life. People move on and you have to let them go. That can allow room for new people to come into your life though. Recently I’ve met some lovely people. Thank you for bringing light and love into my life. 

For my friends of long-standing please accept my apology that I am no longer the same person and can no longer run around like I used to. Keep walking beside me and let’s hope that one day there will be a breakthrough.