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.