The thing no one ever wants to talk about.

Death and dying is such a taboo subject. It’s a bit like sex, no one really casually discusses it and if they do then there is a sense of awkwardness and it makes most people feel uncomfortable. However, death is something that is going to happen to each one of us at some point – no one gets out of here alive. I believe it should be given more conversation time so that it isn’t such a touchy subject. 

As hard as it is to discuss, it is even harder to comprehend at age 33 that death is something that could potentially happen to me before 2021 is out. Of course, I don’t like to think about the possibility of this but with it being my current reality it has made me start looking at life differently. 

I have made certain decisions, for example, where I would like to be when, or if, I die. It is sad and it is beyond difficult to think about, but I believe that I should do it to help myself become more familiar with it. If I get to the point where I am told that I haven’t got long left, I hope that it won’t come as such a shock because I haven’t been living with my head buried in the sand about it. Whether this will be the case or not I don’t know, but I would rather plan for the ‘just incase’ than not plan at all. 

When I was 15 years old a tragedy struck our family and my cousin of only 24 years died in a car accident. To protect my family, I will not go into detail about this however, I will say that it was one of the most terrible things I have ever had to experience. Because of this, I grew up with only one idea of what death was like and it was a death of this kind; completely out of the blue, a total shock, something that tore people’s lives apart. 

It was only a few months ago that I realised that death isn’t always this way. I know this might sound stupid, but it has been the only time that there has been one of those realisation moments for me. It happened when I was in the hospice for the first time and during my stay there were a couple of deaths. Knowing that there had been a death, I was waiting for the screaming and the panic but there didn’t seem to be any – there was just peace, stillness and calm. I obviously don’t know what it was like in that moment when that person breathed their last breath but everything about it was just very different than I expected it to be. 

I really had no idea death could be this way but then I have never thought about death in enough detail to really think about what it might be like for other people in different situations. 

It was this experience at the hospice that made me feel very differently towards my own death. Let me just state for the record – I DO NOT want to die. However, because I have cancer there are so many times, for one reason or another, that I am faced with talking about the end of my life. Don’t get me wrong, if I think about dying for too long then I can’t cope with it, I get upset and I cry, but if I am to think about it briefly then I can make little plans – which I have done. I have found this easier all thanks to my experience in the hospice. 

It has made these decisions that bit easier because I feel more secure and at peace with how the end of my life may be due to how I have witnessed death in the hospice.  I know that the staff are all so caring and kind and that they have patients’ best interests at the forefront of their care. They will do anything to make you feel as content and as comfortable as possible. 

Another thing I have had to deal with recently all thanks to cancer is whether I want to be resuscitated if I die. This is because of my diagnosis and my prognosis; the doctors have to ask and have me come to a decision on a ‘Do Not Resuscitate Statement’. I will refer to this from here on out as DNRS, so I don’t have to type as much haha! 

The first time this was ever mentioned to me was when I was in A&E at the start of lockdown. A doctor came in and asked me if I would want to be resuscitated. I replied with a quiet and quivery ‘I have no idea’ to which he replied ‘If I was you, with the state your body is in, you wouldn’t have a good quality of life so I’d say go with do not resuscitate.’ Oh, yeh thanks for that doctor, I’m on chemo, ill with an infection, on my own in A&E, maybe just f**k off!

This experience was not a nice one and I purposely didn’t think about it again until the next time chemo took me into hospital, and I was asked for a second time. This time the doctor asking was much nicer, but I still didn’t make a decision. There was a third time too and a fourth, it was on the fourth time, I made my decision. 

I was asked about it last week in the hospice and I thought to myself that I needed to make a choice so that I can box it away and not have to think about it again.  I came to my decision by talking it through with the doctors here and with Ash – who like me had no idea about what decision to make! 

Basically, because I have decided that if I die from cancer I would like to be here in the hospice, by agreeing to a DNRS, if my heart stops, that will be it, I will be gone. They won’t call an ambulance and rush me for CPR at A&E. So the decision was kind of made for me and I was at peace with that. 

It was an incredibly hard thing to decide and it isn’t a decision that you expect to be making at such a young age, but my attitude was – I have to decide on this so just come on and do it. So I did. 

For the rest of the day and night afterwards I felt very on edge and teary, it wasn’t until I was about to go to bed that I realised how big of a deal it was for me to have made that decision. It was only me that could have made that choice and I did it, on my own. That is big. 

I know that the way I feel won’t help those that I may leave behind but for me and what I have to go through on a daily basis, it is a comfort that I can now put these thoughts into little boxes in my mind and not think about them again. I definitely feel like a weight has been lifted after making my decision on a DNRS. 

I decided to write about death and dying as a blog post because if it hadn’t been for my experience at the hospice and my realisation about death then I would never have had the chance to feel that little bit more at peace with it.  It has always been my hope that through writing this blog I may help someone else. That in my eyes is a job well done. 

I am keeping this short (I think) and sweet as I know it isn’t an easy thing to read about – it wasn’t an easy thing to write about and I feel so nervous about posting it, but I think that is a good thing. There won’t only be me that has had to go through this, and it won’t only be my family that have to deal with someone in this situation. I am breaking down a barrier by speaking about the ‘un-spoken’ and I hope that it is as helpful to you as it is to me to write about it. 

Faith 

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Let me update you!

It has been a long time since I did a blog post.  So long in fact that I can’t even recall when I last posted or what it was about!

I have been wanting to write again as it helps me to get what I hold in my head everyday down on ‘paper’ and I do like to keep people updated with how I am.  I know that so many people care and that there are people who would like to know how I am but don’t like to ask.

So here we go..Enjoy!

I seem to have fallen into a routine since Ash has gone back to work – which I am loving – not gonna lie!  It is so nice to have some time to myself again.

My sister, Nesta says that she gets asked so often about how I am doing and her answer is always ‘She gets up everyday, gets dressed, does her make up and goes about her day, so we all do the same.’  I love that this is her answer and I love even more that it is true.

My daily mantra has become ‘Get up, dress up and show up.’ and that is what I do everyday.  I get up when Ash gets up for work between six and half past, I make myself a big cup of tea and my breakfast, sit and watch an episode or two of Desperate Housewives and then have a shower and get ready for the day even if all I am doing is sitting in the house. I do this so that if that’s all I do in a day, I know that I have overcome the desire lurking somewhere inside me to slob in my dressing gown or lie in bed all day.  By getting up, getting dressed and showing up, I have proven to cancer that I won’t be stopped.

As I have mentioned a few times now, I am no longer on any treatment for the cancer. The chemo that was working for me at the start of lockdown was stopped as my Oncologist was worried that carrying it on would make me too vulnerable to Covid-19.                                                                                                                                                                                                                                                                       Fast forward a few months and I was told it was safe enough for me to restart the same chemo, I can’t really remember much about this time to be honest but I know that it made me feel poorly and I did a spell in hospital with an infection. 

I had a CT scan after two rounds of chemo and then attended the consultation to get the results.   I was told that most of the tumours had grown so clearly the treatment hadn’t worked.  The consultation felt very final and almost like I was being left to fend for myself whilst waiting for death.  It was quite surreal.  To make things worse, I had to go on my own as you cannot take anyone in to your appointments at The Christie at the moment.

I have now been off treatment for almost three months (I think?!) and as I am coming up to my three monthly scan, I am starting to have moments of worry about what the results will be. Time will tell though I guess.

Now, on to the highlight of 2020 – The Wedding of Mr & Mrs Rigby!

We actually had to rearrange our wedding date twice and as we came up to our planned wedding date, we eventually thought we should start discussing what we should do about going ahead with it.  We decided that at the end of the day we just wanted to be married so we kept the date of the registry office in the diary and then went on to find somewhere we could safely have 30 people for reception drinks.  

It was so difficult choosing such a small number of people to have in attendance.  We were able to invite just six people to the registry office and 28 people to the reception drinks. My direct family is 30 people so it was more than difficult! In fact it actually felt like it broke my heart having to message people like my nieces and nephews and tell them they weren’t going to be able to come.  It was horrible telling those we loved that they wouldn’t be invited. Luckily though, everyone was so understanding which helped massively.  Unfortunately we had no choice and it was completely out of our control but everyone totally got that which we both appreciated so much.

It turned out to be the best day we could have ever wished for.  We had the ceremony at Chesterfield Registry Office – which I highly recommend by the way! Afterwards we went to the Leewood Hotel in Buxton for a few drinks.  In a way it almost made it more special being such a small group of people as there was a chance to talk with each person, spend time taking pictures and we had the time to really enjoy everyone’s company.  We hope to hold the second part of the wedding as soon as we can, although after Boris changing the guest number to 15 for at least six months, that now seems like a distant hope!  

Although it has been a time of such joy over the past couple of months with my hen do, our wedding, honeymoon and my birthday, it has also been a time of reflection on how my life is right now.

Being a newly married woman I want to be doing my part as a housewife.  Some of you might frown upon this but all I ever wanted from life was to get married and be a housewife.  Now I feel like I have everything I ever wanted – besides the cancer obviously!  But it just isn’t that straightforward for me.  I want to be home making, baking and having Ash’s tea ready when he comes home. I try so hard to do the things I want to but my body just doesn’t play ball.  

I can’t stand for long periods of time, so for example, making a meal takes much longer than it should because I have to take regular breaks, same with washing up and don’t even get me started on showering! I can’t easily go up and down the stairs, I get exhausted from using them, especially in the evening when I am more tired.

There are times when Ash has to help me do little things like get ready for bed, put my shoes and socks on because I can’t easily bend my legs, wait for me outside the bathroom whilst I have a shower when I feel faint because of pain and finish off or do little jobs around the house for me. It is so frustrating not being able to just get on with things.  It feels like my independence is slipping through my fingers and there is no way I can grab it back.

However I count myself so incredibly lucky that I have a husband who is willing to do all of these things for me and even more, he wants to because he wants to see me safe, comfortable and happy.  I really feel so blessed that he stuck around for me.  He could have easily cut and run but he chose to stay – What a guy! 

**I am actually writing this post from my very comfy recliner armchair at the East Cheshire Hospice.  I have come for a stay for pain management and to try and sort out some other cancer related issues I am currently dealing with.  

I suffer with pain every day however over the past few weeks it has got to the point where it is so bad it is making me feel sick and it leaves me unable to do anything. On top of this I am not sleeping well,  I get between two and four hours sleep a night which isn’t good when you have a body that is fighting so hard every day.  

I have had an inpatient stay here before so I know that it will help me massively and that I will leave in a much better place than when I arrived!  Everyone here is so lovely – last time I was here I described them all as angels in scrubs and that is definitely what they are!

I think I will leave this post here for now – I could go on forever so I have to stop myself somewhere haha!

Thank you so much for taking the time to read.

Faith

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