Be kind (to yourself)

 This week marks two months since my last operation. I'd like to say that I'm on the mend, but I had a set of blood tests this week and my infection rate is very high - so It looks like I'll be on another load of antibiotics by the weekend. 

Not only that, but my scarring from the third operation has turned into keloid scarring - which is very painful. It seems I'll have to rest a while longer, before I can begin to get back on my feet. 

I'd like to say that I have improved and learnt from each recovery period as time has gone on - as you already know, I didn't allow myself to recover after the first operation due to my upcoming wedding, by the second operation I had scared myself with the infection and my traumatic experience at Fenchurch street station; thinking I was going to die. I  felt that I had been given a second chance to get it right and I owed it to my body to take my recovery more seriously. 

My surgeon had suggested therapy and although I was hesitant and not keen to share and unpick my experience with another stranger; he was persistent that going through the operation twice could affect my mental health in a negative way and therapy would be a helpful way to overcome what had happened. On a separate wound check up with my GP nurse, she backed him up and agreed that I should talk to someone. She had a point, my mood had taken a dive as soon as I had found out I needed surgery a second time and I had spent appointments with my nurse, crying over the fact I that didn't want to go through it all over again and how I felt like a terrible mother for once again being unwell and not being in full health to spend time with my children. 

I was referred to a group of experts called 'Parenthood in Mind' who are a team of psychologists that work with parents and parents to be offering tailored therapy sessions throughout pregnancy, early parenting and for parents under pressure (cough cough!). 

Under pressure I was - two major operations under my belt and twin son's who had their third birthday coming up in a matter of weeks  that I had spontaneously planned a birthday party for - where I thought I was going to get the energy from I do not know - I just felt incredibly guilty over being unwell again and I think that was my way of making it up to the boys.. whether I hosted the party or was wheeled into the party!. I also had a job that I needed to return to - which I also felt guilty about because I had gone onto sick leave a second time. Then there was housework, husband, life.. my recovery was revolving around guilt which was increasing with every responsibility - I hadn't learnt the first time at all, I was rushing myself to return to work and I was pressuring myself to put on the greatest toddler's party of the century - just five weeks after major surgery. 

I started therapy with a lovely lady in January 2020 - and  I said I'd only go for a couple of sessions;  I certainly didn't think I'd still be attending a year later (albeit virtually since March)  - I didn't know that my year was going to take another turn for the worst - but I'm glad I was going to therapy when it happened as I don't think I could have coped without her;  especially during lockdown early in the spring, therapy was a godsend whenever things got too much - imagine if everyone had therapy in lockdown! getting all your frustrations out to a third person once a week on Zoom; have a moan about your husband and then just carrying on - I'm not saying that's what I did of course (!). 

The boys birthday party went ahead in the February, and I'm glad it did as it was the last time we were around family and friends in a big group before things started really kicking off with lockdown around the globe. The boys had a fabulous time and still talk about it now; we had balloons, soft play, a bouncy castle and an inflatable slide. The party was 'transport themed' and I got some transport cookies made with their names on, bought platters of sandwiches, made a giant fruit platter and even made a traffic light jelly. It was my first party I had arranged that included children from their nursery and I embraced putting together transport themed party bags. It was all worth it. However attending therapy sessions helped me to realise that it wasn't my fault that I was ill, the boy's would have had a great birthday just being with my husband and I and what meant the most to them was that I was here with them. My therapist also helped me to release my guilt about work too, that they were as understanding as they said and deep down I knew that - I needed to let go of the idea that I had let them down, it wasn't my fault. She told me to imagine if I had stayed at work on the day I collapsed at Fenchurch street station - if I'd put my body through more stress and pressure before leaving the office and collapsing during rush hour - it could have been a lot worse and I need to continue to listen to my body. 

In the end, after discussing with my surgeon and employers; it was agreed that I would return to work in March. The night before I was due to return, Boris Johnson announced a national lockdown - so that was that! Virtual working from home it is then! 

I also spent some time doing research on my diagnosis at the start of the year; before that all the big words and the threat of bowel or colon cancer frightened me and I wasn't ready to dive into all the information. By having therapy it gave me the strength to 'own' what had happened and I researched what an sacrococcygeal teratoma was. I also found out that most of the time ultrasound scan's detect when a baby has an sacrococcygeal teratoma during pregnancy. As mine was stage 4 (see my post all about sacrococcygeal teratoma's) this was likely that I had it since before I was even born. I asked my mum if this was not detected during scans when she was pregnant with me and it turned out that she didn't even have a scan - her midwife at The Royal London Hospital in Whitechapel where I was born (that's right I'm a secret cockney born within the sound of Bow Bells didn't you know?!) didn't  believe in scans and outright refused to perform them. Diving into further research I found out that up until recently, some parents of babies who are found to have a sacrococcygeal teratoma on their scan were or are advised to have the baby aborted due to birthing complications or  because, in the past, it could have looked like a sign of spina bifida. I read a few accounts from parents who's babies had been born with a sacrococcygeal teratoma (be it stage 1,2,3 or 4) who had been given this advice but had gone ahead with the birth regardless and went on to have healthy babies, despite them needing an operation shortly after birth. This information shocked me and I realised how little awareness there was on sacrococcygeal teratoma's.

Shortly after, I joined a group of fellow SCT survivor's and parents of SCT survivor's and we continue to share stories and give advice to those in discomfort or with further complications since their operations - there aren't many of us out there, but it is nice to have a group of people from around the world who understand what I have been through. I shared my story with them back in summer and the amount of support and words of encouragement  received was amazing. It's nice to have a group of people to share my journey with. 

Now its the third time around, I'm much more in touch with my recovery and what my body needs - the most important thing I have discovered is self kindness. I now know how much energy my body can handle, not to push myself and not to feel guilty about not being able to do certain things. It's been easier this time around, socially, as no one is out and about due to Coronavirus so I haven't got the guilt of  declining invitations to events, especially now around Christmas. 

This morning I went to a gym - first time I have ever set foot in a gym. I used to run a lot; in the past I have done many charity runs, my most proudest is running up the flights of stairs of The Gherkin in London  for the NSPCC. I ran up 38 floors and 1,037 steps and completed it in 16 minutes. I also ran quite a bit in the run up to my wedding in 2019 before I broke my ankle (remember that??) so I've always tried to keep on top of my fitness but never under the watchful eye of a personal trainer. I still need the green light from my surgeon (which I'm hoping to get next week) but I wanted to start the ball rolling on feeling strong again - I've spent so many months feeling weak and tired, an elderly woman in a 30 year old body. I had a chat with the personal trainer today and she asked me about my story - I told her and I cried when I reached the present - it made me realise that even now, I'm still affected by everything that's happened. She was incredibly supportive and said that she would help me start off slowly to build up on getting my strength and energy back in January, or once I get the all clear from my surgeon. 

I am doing everything I can to give my body the best chance of recovery, I'm resting and bed bound when the boys are at nursery and use all my energy for when they are here.  I'm also currently taking various vitamins to give myself the best chance of recovering - I'm taking probiotics to replace the good bacteria in my gut from all the antibiotics I was on after each operation, gentle iron and B12 for my tiredness and fatigue, turmeric capsules for my digestive health, and both Co-Enzyme and Floradix tablets as a food supplement for iron and vitamins. 

To add to the self care, I've also stopped drinking alcohol - or cut down massively if you add special occasions. Anyone who knows me or knows of me will be aware of how much of a change that is - I would never turn down a drink before all of this happened - and although my drink tastes improved as I got older, the results were pretty much the same. Although my opportunities to drink alcohol decreased after I had the children!  I've found that when you tell people you've stopped drinking, they look at you like 'why what's happened?!' I feel the reaction wouldn't be so negative if I had announced I had stopped smoking or eating junk food. It appears to be less sociable to not drink then it does to be drunk.

When I have been out anywhere since my operation, which has been rare, I now have to not only be careful when walking or standing; as the muscles in my legs are so weak from the nerve pain, but I need to carry a coccyx cushion around with me to sit on. Every chair hurts the bottom of my spine without it and the pain can be excruciating. I get comments and questions from strangers when it is spotted such as 'oh is the chair not good enough?!' and again, its too long of a story to get into - even if it wasn't - 'I've had three major operations, tumours removed from the bottom of my spine and a coccygectomy' is a conversation killer. I tend to just laugh off the excuse that the chair isn't good enough or I use the seat for hygiene reasons. It does make me wonder though, when I'll be able to sit normally on a chair again. If ever.

I need to be careful when walking about as people who know me also know how clumsy I naturally am; running, walking or even just sitting. Once time, a few years back, I had just started an office job in Mayfair; I was invited to one of my first after work drinks in a local wine bar not far from the office. I decided to wear high heels for the occasion, even though I cannot walk in high heels to save my life. Once we arrived, I felt it would be safer to sit on a bar stool, than to stand up and end up with sore feet, increasing my chances of falling over on my journey back home. I needn't have worried about that;  I made the stupid mistake of hooking my heels onto the bar at the bottom of the bar stool and suddenly everything went into slow motion as my heels got caught from all my exaggerate leg swinging and I toppled over, like a falling tree, onto the floor of the bar, landing on my hands and knees. When I opened my eyes all I could see were the feet and legs of my new work colleagues around me, the room had hushed to a silence and as I slowly turned to look behind me, past all of my belongings from my handbag spread across the floor, I saw my high heels politely still swinging on the bar at the bottom of the bar stool like nothing happened. It  took me a long time to wear heels again. 

What I have learnt in regards to self kindness; 

- REST - as much as possible, whenever possible and do not feel guilty. Your body and mind heal when you are asleep. 

- Exercise as we know, releases endorphins; do it if you're able. If not, when you're ready. until then gentle activities such as gentle walks or relaxing baths are good enough while you're healing. Either way, I've learnt recently that being stuck in your house or bed bound affects your mental health in a negative way; getting out and about helps to clear your mind. 

- Reiki! Reiki has been one of the best things I have ever tried. At first I was skeptical and it took me a long time to give it a go;  but I was amazed by the affects after my first session - I entered the room full of anxiety and guilt and I left completely calm, relaxed and relived. Reiki relives pain, anxiety, fatigue, depression,  tension, nausea and insomnia and is my go to when I feel things building up again. 

- Eat as healthy as possible and drink lots of water.. but its ok if you want a chocolate cake too. I have been put on numerous diet plans over the last few months - never to lose weight but to eat high fat, high protein and high carb diets to help my bowel to heal. I've lost weight, gained weight and am now at a healthy weight of nine stone. I've cut out dairy and processed food and I try to give my body all the nutrients it needs - however, I won't deny myself a treat if I want it. I've been through too much over the last few months to stress over a cake. 

- Talk (or write). If you keep your thoughts and feelings locked inside, you will eventually feel the pressure and they will all spill out one way or another. 

Therapy helps, talking helps, crying helps, being honest helps and writing it all down helps. This was the whole reason I started this blog - I needed to write it all down in front of me to get my head around it to deal with it. I made it public because I wanted to own it. I was sick of it ruining my plans and taking over my life the last couple of years, It was time I made the story my own and told it in my own words. 

My recovery is ongoing and no day is the same but if nothing else its made me realise how important my  health is. I'm better at recovery now, because I'm in tune with what my body needs and most importantly, to be completely honest,  I just want my life back.