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Sunday, 30 March 2014

We were never going to be ready for this.

On Monday 24th March well over 250 people attended our local Parish Church to say their final farewell to my precious Suzie. She was so well loved by people of all ages and backgrounds, and the church was packed. As my family and I arrived with Suzie's hearse our vicar greeted us at the church gate. Our tears were already flowing and he looked at me with deep compassion in his eyes and said, 'Nick, we were never going to be ready for this day.' He was right. Whilst I felt that everything had happened so quickly towards the end, and that we had hoped so much to have one more summer together, and that other people had nursed their loved ones for so much longer than the two years that we'd spent facing Suzie's illness.... actually, this day was always going to come, and, no matter when it did, it was always going to feel far too soon.
The church service was perfect, the Bible passage was read beautifully by Suzie's cousin, and the tribute was delivered tenderly and eloquently by our lovely Reverend Graham. 
The music and the Hymns seemed to fit perfectly and the whole occasion was flawless. As Suzie's coffin was carried out of church and she made her final exit there was a spontaneous round of applause from the whole congregation. Suzie had been a great theatrical performer for most of her life and she would have been thrilled by this.
After the service our immediate family accompanied us to the Crematorium to say our more intimate farewell at a private committal service, whilst other friends made their way to the local Theatre where my daughter and some dear friends had spent the whole morning laying out tables full of food for a 'Farewell Party' to celebrate Suzie's life. 
For my family and me the day passed by in a bit of a blur. I had expected the music to touch me in a deeply emotional way, but, in reality, my kids and I were already in such a profound depth of grief by the time we arrived at the church that I don't think anything could have moved us any deeper. Part of me feels like I 'missed out' because it all seemed to pass by so quickly. Part of me wanted to hold on to that final 'goodbye' and make it last for ever. I look at Suzie's photo now and feel totally engulfed by the desolation of knowing that it's all over. She's gone, and my life will never be the same again.
So where do I go from here? At the moment I feel like I'm stuck in a time warp and I'm trapped in a moment in time that has no beginning and no end. Over the last week I have been given a few distractions in the form of visits or invitations from family and a couple of close friends. I'm trying so hard to accept these times of contact with others, even though my nature and my desire is to retreat into myself. Socialising was never something that I was overly comfortable with even when Suzie was well, and it's a million times harder without her. I can't begin to imagine how I will ever be able to build a new life without Suzie. She was my life, and, without her, I feel like I've lost the very essence of who I am. I have also been thrown completely by the many unexpected facets of grief that have besieged me and have taken me by surprise. I have struggled with things that are totally contrary to my nature and my usual personality. I have felt like I simply can't function without Suzie. Even as I type, the tears, yet again, begin to fall, and my mind becomes foggy, so maybe I will share more about these things next time.
I have a most wonderful family and some very dear friends who, I'm sure, will walk this painful journey with me at my pace and with the love and prayerful support that will uphold me. I know that, however much it breaks my heart, I have to let Suzie go and I have to rejoice with her that she is now free and in the safe arms of her Saviour.
I leave you with the beautiful words that were written especially for Suzie by a dear friend when she heard that Suzie had reached the end of her life's journey.  

"And on the Wings of Angels shall I be lifted up into the realms of Heaven,
and placed gently into the arms of my Saviour, from where I shall never again part.
For now I have made my final Homecoming, and my soul doth rejoice,
For Jesus has answered the longing of my heart.
Weep not for me, dear loved ones yet remaining,
For to want me back is not truly living.
If tears shall fall, let there be no complaining.
Remember me with laughter, with joy and thanksgiving."
by Kathy Whitlatch Garrett

Rest in peace my precious angel. I love you to the moon and back, and I always will.xxxx

Friday, 21 March 2014

Admin and Emptiness

I'm sitting in bed with my iPad, still wide awake in the early hours of the morning, and as I gaze at the photo of Suzie that sits on my chest of drawers I'm engulfed by a sense of disbelief. These last ten days have passed by in a whirlwind of things to be done and arrangements to be made. At times I've been swept along by all of the planning and the preparations, but then, all of a sudden, it has felt like a knife through my heart as I'm unexpectedly hit by the painful reminder of why we're doing it all. 
It just seems so inconceivable that my precious Suzie has really gone and she won't be coming back. I talk to her all the time. I stroke her cheek on my photo and I whisper the words that I wish I could say to her. I look up to the sky and call her name.

My family and friends have been amazing. On that heartbreaking Tuesday morning last week I phoned my daughter at 6.30am and by 8am both she and my son were in the car and on their way here. They arrived less than two hours later and we spent the day together, talking, drinking wine, and trying to process the reality of it all. Suzie has always been like a second Mum to them ever since they were young children, and they both felt the sense of loss acutely. My special friend, Caz, was at my house almost as soon as I got home from the Hospice, and she came back again later to spend the evening with us. Our lovely 'nurse Mary' abandoned her day's schedule to be with us, Suzie's cousin and her husband joined us for a while in the afternoon, along with my parents.... and we also had telephone conversations with other family members and friends. There were a fair few tears shed that day.
The next day saw the start of what was to become the overwhelming task of dealing with all the legal requirements and 'admin'. My daughter, Bek, was amazing. She stayed here with me all week and we gradually started to work through all the things we had to do. The Funeral arrangements began to take shape and plans were discussed for a 'Farewell Party' for Suzie after the Church service to celebrate her life. Medical papers had to be collected from the Hospice and the legal registration had to be made at the Registrar's office ten miles away. Banks and Solicitors had to be visited and numerous official phone calls had to be made. During all this time Bek kept me going throughout. She helped me to deal with all the official requirements and took a constructive role in our meetings with both the Funeral Director and the Vicar, both of whom are very special friends of ours and loved Suzie dearly. Bek also provided hot chocolate croissants and coffee each morning for breakfast and she cooked a proper meal for us both at some point each day. Throughout all of the essential and unavoidable activity that dominated those days Bek somehow managed to create spaces for us to periodically step back from the official stuff and just remember Suzie.
When Bek had to go home the emptiness I felt was eased a little by visits from other dear friends who came to spend time with me, and by my parents, my sister, and my Auntie B who added their love and support, and, of course, made sure I was eating properly. Bek has also called me and 'Face-Timed' me every day. She's an absolute diamond.
I went to see Suzie in the Chapel of Rest on Monday. I wasn't going to because I'd said my goodbye at the Hospice, but I gradually became more and more certain that it was something I had to do and that I would regret it if I didn't. It was a hugely significant experience. She looked beautiful without a doubt, but there was an overwhelming realisation that she wasn't there. Her wonderful and precious body that she had inhabited for over 70 years was now just an empty shell. It was like looking at a caterpillar's discarded chrysalis, knowing that the beautiful butterfly it had become was now flying freely through the air. The real Suzie was no longer trapped inside this frail human body that was failing and deteriorating. I knew without doubt that she was now free for ever.
Even as I type this I'm hit again by the heart wrenching thud of reality. I can't allow myself to even wish that she was still here because that would be wishing her back into the sheer awfulness of her illness from which she has now been released. But neither can I begin to imagine a future without her. Everything that made my life what it was, every hour of every day, has been swept away and is gone forever. But Suzie's love will always be within me and the memories that we shared will never be taken away. She has left me a wonderful legacy of friendships that I would never have had were it not for her, and I owe it to her to nurture those friendships and to get on with living my life. Quite how I will ever be able to do that without her I just don't know, but, with God's help, I will find a way. I do believe His promise that He knows the plans He has for me and that they are plans for good and to give me hope. Maybe, in time, the tears will fade and the heartache I feel now will ease. May God give me courage and strength to face each new day as He gradually reveals His plans to me. 
I will continue with my blog for anyone who wants to walk with me in this next stage of my life's journey.

Sunday, 16 March 2014

The Journey's End

This time last week I was in the middle of what was to become a truly memorable weekend with Suzie in Rowcroft Hospice. Saturday was a day filled with the love of family and friends who came to visit us. Suzie was weak and tired, and it was all a bit much for her in some ways, but she delighted in the knowledge of how very much she was loved.
She was becoming increasingly frustrated and distressed by being confined to her bed, and she kept begging me to get her up. Of course, I couldn't, and it broke my heart to see her so disturbed and yet be unable to 'make it better'. We had a chat with the nurses and they said that the following day they would get her into a wheelchair and help me to take her outside. Suzie went to sleep with this hope in her mind, and, by about 5.30am, she was totally focused on the thought of going outside in the sunshine. The next few hours were dominated by her increasingly impatient anticipation of this. Anyone who knows Suzie will know that she's never coped well with having to wait for things! Her speech was very difficult to understand by this point, but she certainly tried that morning. Phrases such as 'Come on then, let's get on with it', and, 'What are we waiting for?' flowed relentlessly from Suzie's lips. Eventually the time came and the nurses carefully hoisted Suzie into their most comfortable wheelchair, wrapped her gently and snugly in a warm fleece blanket, and helped us outside into the stunning gardens. It was a most beautiful sunny Sunday morning and the air was filled with birdsong and the fragrance of spring flowers. A gentle breeze kissed Suzie's cheeks, and her face shone with a radiant beauty and peace. Words could never describe the wonder of that morning. 
That afternoon we were visited by my daughter and a very dear friend. I will cherish the memory of that time for ever. Suzie has always loved taking centre stage and entertaining people, and that's what she did that afternoon. It was as though someone had switched a spotlight on her and she suddenly realised she had an audience! Her speech was very difficult to understand, but her gestures, her expressions, and the rolling of her eyes as she 'played to the gallery', were sheer eloquence. She had us all laughing and smiling, and it was so lovely to see her true personality shining through. That night Suzie slept peacefully all night, for the first time in many months.
On Monday we had a very different kind of day. This would be Suzie's 'spiritual' day. A very dear friend of ours is part of the Chaplaincy Team at Rowcroft and he came to visit us. He was so incredibly sensitive and gentle as he administered Holy Communion to us, and then gave Suzie the sacrament of anointing. There was a wonderful sense of calm and peace after this Holy time. Later that day we were also visited by our own lovely Priest. By that time Suzie was rarely opening her eyes but she managed to do so that that afternoon, making sure we could both see the twinkle in her eyes for the Vicar! More prayers and anointing left Suzie in no doubt that she was at peace with God. Later that day she began to get a little restless again so the nurses wheeled her bed down to the Hospice Chapel and I played some worship songs on the piano there. She settled into a peaceful sleep early that evening.
It was soon after 4am on Tuesday morning, as I lay sleeping next to Suzie, that a nurse gently woke me up. They had been observing Suzie's breathing and had recognised signs that suggested she was slipping away. I sat calmly beside her bed gazing at my precious Suzie, holding her hand and gently stroking her cheek, quietly whispering words of love and encouragement as her journey on this earth came to an end. She was so very peaceful and she looked incredibly serene and beautiful. For a moment time stood still.
The hours, and, indeed, days, that followed have been a bit of a blur. Maybe I will share more about that in my next entry. For now though, I just remember my wonderful Suzie with a huge sense of gratitude that I was privileged to share 20 years of my life with her. Suzie made me who I am today, and I'm sure that the legacy of her love will continue to shine her light into the dark days that I now face. Suzie is at peace now in the loving arms of her Saviour Jesus, and our loss is Heaven's gain. Rest in Peace my angel. 

Saturday, 8 March 2014

When Time Stood Still

As I settle down for our second night at Rowcroft Hospice I reflect on the journey that has brought us here. Suddenly it feels like time has stopped, and everything that has led us to this point is now irrelevant. During these past few days I've seen occasional glimmers of hope. Sometimes Suzie has caught my eye and winked at me with a mischievous twinkle in her eyes and a beautiful smile on her face, and it's been hard to believe she's ill at all. But other times I've looked at her poor frail body and wondered just how much more can she endure. Each time we've had a setback we've never quite come back to where we were. Each ability lost for even a day has become lost for ever.
The staff here at Rowcroft are amazing. They are so caring and compassionate, and they have made Suzie feel very comfortable and peaceful. They're taking very good care of me too, and nothing is too much trouble for them. In some ways it has been very hard for me to let go of my role as Suzie's sole carer. Caring for her has always been a huge privilege and it has taken our relationship to a profound and unprecedented depth of love and oneness. It sounds strange but, as Suzie's care needs have gradually become ever more intimately personal and potentially demeaning, so my love and respect for her has increased. Reaching the stage now where I realise I will never again be able to give her the level of care she needs is like losing a part who I am.
The staff here are making this transition as easy as they can for me, both by including me in some aspects of Suzie's care, and also by showing such tenderness and respect to Suzie as they undertake the tasks that I can't do. In some ways it has released me to simply love her and be here for her.
As I sit here listening to Suzie's gentle breathing as she sleeps beside me I can't help but wonder what the coming days and weeks will be like. Having spoken alone with the Doctor this morning I realise it's looking increasingly unlikely that Suzie and I will be going home from here together.
Home.... Our bungalow feels like it's a million miles away. This is our home at the moment, and it's like the rest of the world just doesn't exist. Maybe Suzie will rally and we may yet have some time at home together. Maybe I need to set her free to move on to the new home that has been prepared for her by God - her eternal home where we will one day live together. We know that this world is not our home, and it's the hope of our ultimate eternal home with our loving Saviour that sustains us now. May it continue to do so as we travel ever nearer the end of our journey.

Wednesday, 5 March 2014

Trying to keep up!

I'm aware that changes to our situation are occurring in rapid succession, and that a number of our friends rely on my blog for information on Suzie's progress, so I will try to summarise the last few days and bring you all up to date.
I can't believe my last blog entry was only four days ago as there seems to be so much to share since I wrote that! After I'd left that night Suzie was particularly poorly and anxious, and by the time I arrived the next morning she was exhausted and extremely fretful. She was pretty much 'out of it' most of the day, except when she had to endure the very unpleasant procedure of having a nasal-gastric tube inserted in order to drain her digestive system. The nurse carefully inserted the tube into Suzie's nose and, with a little bit of prompting from me, Suzie managed to swallow at all the right times, and it was successfully put in place and doing its job.
At this point Suzie was still on a drip and IV antibiotics, in addition to oxygen, so having yet another tube connected to her was very difficult for her to deal with. She looked and felt so very ill, and when she did manage to regain some degree of awareness, she was very disturbed by what was happening to her, and kept asking me if she was going to die. It broke my heart as I tried to try to answer that question as reassuringly as I could, but with sufficient honesty to allow her to express the fears that she needed to share. Only 24 hours after the conversation I'd had with the nurses the previous evening, that night it was agreed by all, not least Suzie and myself, that I should stay with her overnight. 
The following morning it was noted by all of the staff involved how much better Suzie had settled with me being right next to her, and it soon became clear that we'd made the right decision. I have to say, it was equally beneficial for me. So this has become my home ever since, and I am being made to feel very well cared for and supported by all of the staff. They are all being extremely kind, without exception, and I'm being offered everything I need, and more besides, including use of shower facilities, access to the hot chocolate machine, and more food than I could ever eat!!
We have had a long chat with the Oncologist who has made the decision to discontinue any further chemotherapy. It is just too much for Suzie's frail body to cope with, added to which her blood test results indicate that it wasn't even having any effect on the cancer anyway. The Palliative Care team are now involved and they are ensuring the best possible management of Suzie's symptoms.
Yesterday the IV antibiotics were discontinued, and today there seems to be some good indications that the infection has been eradicated. Suzie has also now had her gastric drain removed and she is able to have nutrient drinks, soup, and a few mouthfuls of jelly and ice cream. As long as I can keep her fluid levels up by encouraging her to drink she will no longer need the drip, which means all tubes have now been removed except for the oxygen and a very fine subcutaneous tube leading from her upper arm to a syringe driver which provides a continuous delivery of her medication. During the course of the last couple of days we have seen some positive signs, so we now wait to see if there is any improvement in her symptoms now that the infection and the chemotherapy have been removed from the equation. There is still an unresolved issue with Suzie's breathing due to a build up of secretions in her lungs, but this is being monitored and everything is being done to make her as comfortable as possible.
Although much improved from a week ago, Suzie remains very poorly and she isn't going to be strong enough to return home for a little while yet. The Palliative Care team have suggested a stay at Rowcroft Hospice would be beneficial in order to get Suzie's symptoms under control and to prepare a 'Hospice at home' package of care to enable her to be cared for at home when the time is right. Whilst we both deeply desire to be together in our own home, we are also aware that we have reached the stage in Suzie's illness where I need to share the responsibility of her well being with other people who are qualified in ways that I'm not. We have been assured that I will be able to be with her at Rowcroft Hospice in the same way that I am now, and that we will all be able to work together with the team in order to give Suzie the level of care that she needs and, indeed, deserves.
So, that brings us up to date. We feel very much as though we are entering uncharted water, and that the coming days and weeks will take us into new and unfamiliar places. This is more than a little scary, but there is a deep sense of peace in our hearts as we embark on this next stage of our journey. God has already planned our path and He is faithful to lead us and sustain us. We hold fast to His love and we rest in his peace.

Sunday, 2 March 2014

Life continues to show us how unpredictable it can be.

We've had an eventful week. We were doing ok, adapting to Suzie's increased care needs and trying to bring some interest and activity into the rare occasions when Suzie wasn't too sleepy to cope with it. We'd managed a 'run out' in the car a couple of times to get a change of scene, and we'd had a couple of visitors.
Last Wednesday Suzie was a little more sleepy than usual, but not showing any indication that anything was particularly wrong. She's on a lot of medication, recovering from the very traumatic chest drain procedure, not to mention being less than three weeks into this course of chemotherapy, so when she asked me to put her to bed at 7.30pm we both thought she just needed all the rest she could get. I checked on her a few times and she was sleeping soundly and peacefully, so I decided to go to bed early with my iPad so that I could be next to her whilst I got some much needed rest too. It sounded good in theory!
Suzie has often talked in her sleep, and she began to do so that evening, but with a level of intensity that was rather more extreme than usual. It was as though every area of her past life was being unearthed and thrown ferociously into the room. I gently reassured and pacified her, and she would be calm for a few minutes, but then a different fear or 'rant' would erupt, and so it went on for quite some time. At one point she even demanded that I go to the shop to get her some cigarettes.... We gave up smoking a long time ago!! She was quite insistent on this one, and the only way I could stop it was to ask her 'Does your Dad allow you to smoke?' When she replied that he didn't I said that I couldn't possibly go against him. She accepted this, apologised and said good night! 
Things gradually settled down and I dozed off briefly, but I was awoken just after 1am by Suzie calling me to take her to the loo. I got her out of bed and quickly realised something was very wrong. She was quite hot and sweaty, and she wasn't with it at all. I did a few basic checks, the results of which prompted an immediate phone call for an ambulance. My call was answered swiftly and I explained my concerns and reported my observations - blood oxygen level under 80%, temperature 37.9 and pulse rate 150 beats per minute, plus other relevant info.... recent chest drain and current chemo status etc. I was put on hold for less than a minute, then told to put the lights on outside as the ambulance would be there very soon. It actually pulled up outside our house as we were speaking. The paramedics did their own checks, Suzie's temperature had increased to 39 degrees, her blood pressure was very low, and her breathing was getting worse so there was no doubt she was seriously ill. I had made the 999 call at 1.20am and we were in the Hospital A&E dept. by 2am. That was pretty impressive by anyone's standards!
During the hours that followed Suzie was given three lots of IV antibiotics, various other IV medications, she was put on a saline drip and she had a chest x-ray. There were Doctors and Consultants coming and going frequently as the day unfolded and we had some rather scary moments along the way. The hardest conversation we had was with a lovely Doctor who had the incredibly difficult and sensitive task of going through the 'What if' questions that they have to ask regarding resuscitation, CPR and life support options. God willing, we're nowhere near the point of making 'end of life' decisions yet, but it brought the reality of what we're facing into rather uncomfortably sharp focus.
At 7pm that evening a miracle happened and Suzie was moved to Turner Ward, which is a very calm and tranquil cancer ward where beds are like gold dust! She was put in a light and spacious side room which has its own en suite facilities and is very peaceful. I found out later that it is a 'Neutropenic' isolation room that is used for vulnerable patients in order to protect them from infection. Suzie is having regular treatment to help her breathing and she is still on antibiotics and a saline drip. She's had a CT scan and we will find out more about the results and treatment options next week. 
The last few days have been very 'up and down' with some very precious and beautifully peaceful moments of calm, and some less welcome times of extreme anxiety and distress. When I arrived this morning Suzie was particularly distressed and her breathing was alarmingly bad. As the day went on she became calmer, but this evening she was very unsettled. It took over two hours for me to get her comfortable in bed and settled enough to leave her. It was suggested by one of the staff that it might be beneficial for Suzie if I were to stay overnight, but after discussion with the senior nurse it was agreed that this wouldn't be sustainable for any length of time and maybe should be kept as a 'safety net' option, with the assurance that they could call me any time of the night and I would come straight over. I made it clear that I would be perfectly happy to stay with Suzie 24/7 if it would be beneficial, and both Suzie and the staff seemed to be reassured by that.
Amidst all the medical drama I did get to enjoy a lovely family occasion on Friday as we celebrated the Wedding of my darling little sister and her delightful fiancĂ©. We had previously arranged for a very dear friend to look after Suzie for the day, so she said she would pop in and spend a bit of time with Suzie at the hospital so that I could feel able to enjoy our family celebration. As it turned out, her 'pop in' was actually a 5 hour stay at Suzie's bedside, feeding her, attending to her personal care, accompanying her for a CT scan and generally doing everything I would have done. We are so blessed to have such a special friend. With the exchange of a few text messages and a phone call to the ward I was confident enough that Suzie was ok and I was able to relax and enjoy this important occasion with my wonderful family. It was a perfectly beautiful day. My sister and her new husband both looked gorgeous, and it was so lovely to share in their special day. I enjoyed some quality time with all my family and it was a truly blessed occasion. I arrived home soon after 9pm where I was joined by another very special friend who came round to have a nightcap with me...... Four and a half hours and a bottle or so of wine later she went home and I went to bed, where I slept soundly for over six hours. It was the perfect end to a special day.
With everything else going on I nearly forgot that, today (or should that be yesterday now?) I also celebrated my birthday! I was moved beyond words by the many cards, texts and Facebook messages I received, and I was delighted to see our Rowcroft Hospice fundraising get ever nearer our target. 
So now, as we look towards the coming week, with all its uncertainty and apprehension, we rely ever more fully on God's sustaining grace to give us the strength we need. We don't know what the coming weeks will bring, but we hold fast to the knowledge that our lives are safely held in the tender hands of our loving God.
Thank you to all my wonderful friends and family. I love you all so much. xxxx