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A Cancer Co-Survivor Story

In my December blog, I mentioned that my sister, Jo, was going to share her cancer co-survivor story with you.  Jo was with me every step of the way, from the shock and despair of diagnosis, to the gruelling reality of treatment and finally, to the future my family and I are re-building after cancer.  It was very emotional for me to read how Jo had felt during the last year, I think I was just in a kind of bubble for most of it, and reading her words has made me understand what it was like for the people who supported me.  Jo used the good day bad day tool to help her to understand what support she needed on a daily basis, writing things down made it easier to make sense of which areas she needed to focus on.

So for this months' blog post, I hand you over to Jo, for me she is a perfect example of what good support looks like.april-12

"I am not a person who was ever encouraged to talk about my feelings and how things affected me, so to write down my thoughts on a very personal level is actually quite difficult for me to do.  I don't know how this will turn out, but I am giving it a go.

My sister-in-law, Jane, or maybe that should say sister, because that is how close I feel to her, was diagnosed with cervical cancer in January 2011.  She has been writing blogs regularly about her cancer journey and I know it has helped her through the emotional rollercoaster that she has just been on.  Jane was thankfully given the all clear at the beginning of this year and she has asked me to write a blog about how I felt as a co-survivor of a cancer patient.

I went with Jane to Stepping Hill Hospital the day she was diagnosed and to be honest I didn't quite know how to react.  My first thoughts were "Oh no, not Jane, not cancer!"  I was devastated that she should have to go through this, it was that word and it frightened the hell out of me.  I wanted to cry and shout "It's not fair", but at the same time other thoughts were going around in my head - this isn't happening to you, stop being selfish and thinking about how you feel - you need to be strong now to help support Jane through what was going to be a horrendous journey (one with many potential twists and turns and an uncertain outcome) with the treatment that she was going to endure.  We cried together and the nurse at the hospital held both of our hands. On the way out of the hospital I tried to cheer Jane up which obviously wasn't going to happen, whilst my head was buzzing with all sorts of thoughts and emotions - How could I help? What could I do?  How do you help someone so close to you who is going through this terrible ordeal.  I decided that I just had to act normally and not smother her and to give her some space (even though I just wanted to put my arms around her all the time and hug her) - I told her that I was there for her whenever she needed me, I would go to whatever hospital appointments she wanted me to go to.  I just wanted to be there for whatever she needed me for - no matter how useless that actually made me feel. jo- april 12 To our horror Jane was told that she wouldn't be able to have children, which was a massive blow, seeing as that was one thing she had always wanted.  She was in a new relationship with a fantastic guy and things were looking quite serious.  My first thought at that news was that I could be a surrogate; I didn't have to think about it - not at first anyway.  I just wanted Jane to be well and happy.  It was only later that I started to think seriously about it and although I wasn't put off carrying a baby for someone close to me, the thoughts buzzing around in my head were those from when I was pregnant with my youngest child, Emily.  When I was pregnant with her I was advised to terminate because there was something wrong with her that they had never seen before.  My husband, Andrew, and I talked and decided that this would be our special baby.  They couldn't tell me what would be wrong because they didn't know.  Consultants from America became involved who also had never seen a case like it either.  From the scan Emily had 3 floating bones up the side of her spine for which there was no explanation.  I was told she may have to be rushed to theatre for an operation when she was born.  Luckily for us Emily was born healthy, with nothing wrong with her, but I was told that I really shouldn't have any more children because there was a high likelihood of something being wrong with another baby.  We already knew we didn't want any more children, we were happy with two beautiful healthy girls.  As you can imagine my head was then in turmoil because really I couldn't offer to do this amazing thing for Jane. Later Jane found out that there wasn't enough time to take any eggs from her which again was another devastating blow because now she would never have a child that was her own.  I didn't know how to deal with this because I was still dealing with the fact that I wouldn't be able help her and be a surrogate, but now she was saying that if they couldn't take any eggs from her she didn't want a child because it wouldn't be hers.  At that point I felt quite low and very sad and I really didn't know how to console her.

As the weeks progressed and the treatment was underway, I went with Jane to The Christie Hospital whilst she was undergoing radiotherapy and chemotherapy and I was amazed firstly at the amount of people that were there and secondly at the sense of positive energy, the cheerful attitudes, strength and comradeship towards each other.  It was like they were all part of a big team working towards the same goal - beating cancer.  I was in awe of all these people and it made me feel very humble.

To be honest with you I don't know how she coped with what was happening to her.  I thought she was amazing and her strength inspired me.  I don't really feel that anything I did was out of the ordinary, I just got on with my day to day family life and when I was needed by Jane, I was there for her, it just seemed the natural thing to do."

A new year, a new start and a new workbook…

After a brief 'blog break' I start the forthcoming year on a high note.  Almost a year ago I was diagnosed with cancer, words I never thought I'd hear used in the same sentence as my name.  Now a year later I have just had the results from my third M.R.I scan since finishing treatment last autumn.  I have been given the all clear that I have been hoping and wishing for since my diagnosis 12 months ago. 

I have felt in limbo for such a long time, waiting for the confirmation that my treatment had been completely successful, so to hear the words that my scan shows no signs of the original tumour or any new cancer cells, reduced me to tears of joy in front of my oncologist.  It was typical, as it was the first time I had gone to The Christie on my own to see the consultant for my results, simply because I was fully expecting to hear the same news as the last two scans…"inconclusive". There didn't seem much point in anyone taking more time off work or re-arranging plans for what I felt was going to be a wasted journey.  I am lucky to have the kind of oncologist in Dr Barrowclough, who is more than comfortable in sharing a hug just when the time and the news dictate it.  I felt like I danced my way back to my car.  I couldn't believe I had no one at that moment with me to share this unbelievable news.  Thank goodness my mobile phone was fully charged, so that I could relay the news to my loved ones. 

After I caught my breath I drove home to Gareth and Riley, it was such a great feeling to be finally putting cancer behind us.  The high lasted several days, and thanks to The Willow Foundation, Gareth and I celebrated in style at The Witchery by the Castle in Edinburgh.  Scallops and champagne seemed a fitting way to celebrate being able to breathe again.  After the celebrations ended, I started thinking about my life ahead and what living with cancer means to me.  I mentioned in an earlier blog, that I don't think I'll personally ever feel cancer free, firstly because I'll still be monitored very closely at the hospital, and secondly, I still deal with the lasting side effects daily and will do for some time. Survivorship w/b

Having and beating cancer has changed my life, my outlook on things, my perspective has changed.  Things that were of huge importance to me a year ago seem far less important as I start my life without cancer in the new normal phase of my cancer journey.  Just when I was wondering which tool would fit where I was personally up to, a new workbook has been launched.  I know first-hand how much power I have in my ability to work through my thoughts, feelings and issues through writing.  So to find My Survivorship Plan workbook at my fingertips to help me as I re-start my life after cancer feels like a lifeline. 

Whilst the workbook is hugely relevant to me, two points really jumped out off the page, they are two of the five ways to wellbeing.

 

Take notice

Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savour the moment whether you are on a train, eating lunch, or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters most to you.

   

Give

Do something nice for a friend or stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out as well as in. Seeing yourself and your happiness linked to the wider community can be incredibly rewarding and can create connections with people around you. 

 

The last year has taught me to really value the people in my life, the relationships around me, both with friends and family.  I enrich my life with people who make me stronger and make me smile.  I feel much more appreciative of the time I spend, doing things that I like, with people that I love.  I plan to do much of that in the future.  I plan to do some fundraising, to give something back to the charities that have helped me this last year. To push myself physically will give me a goal to work towards and the incentive I need to feel happier in myself. 

I'm excited by the workbook, it's my new focus.  For me, having a focus has kept me from getting too low when I'm feeling sad.  My oncologist is referring me to see the psychologist; I am still feeling a huge sense of grief at the loss of my fertility.  The appointment is not for a few weeks, so for now I have set aside some weekly 'me time', when I have the house all to myself, I'll make a fresh batch of cupcakes, sit down with a brew and a freshly baked treat, and I'll start working through My Survivorship Plan.  

I will not be defined by cancer, but it has shaped me and my future and I will be a stronger person because of it.

Co-surviving at Christmas and beyond…

2011 started out so positively. I had just started a new job that I loved, I was spending more time with my family than ever before and I had been swept off my feet by a wonderful man and making plans for a happy future together. So it seems cruel that whilst all of this was happening I was already living with cancer, but just didn't know it yet.Dec 11

When I was first diagnosed with cervical cancer, the specialist nurse gave me two leaflets to take away and read, after the initial shock had worn off. The first was from Macmillan and the second was from Jo's trust. It took me a few weeks before I sat down to read them and logged on to their websites. The information they gave on their pages was exactly what I needed at that time and it helped me knowing that there was a 'community' out there dealing with the same issues I was going through. Whilst I found comfort from both of these organisations some of their information troubled me.

I have never missed my routine smear test since I was first told to start having them. Since my previous smear 3 years ago, to the one I had this time last year, I had developed a 5cm tumour on my cervix but was showing very little signs of any symptoms. So to read that 20% of women don't attend their routine smear test really shocked me. Since I have been having cancer treatment and talking openly about it, it also worries me that so many people I know, skip a routine smear or worst still have never had one!

So this year my Christmas present to you all is a very simple one and costs nothing, and I apologise if it comes across as preachy, but if reading my blogs gets at least one person to book AND TURN UP for their smear test appointment, then it will all be worthwhile.

I am a 38 year old cancer survivor who has lost the chance to have a child naturally, has gone into premature menopause and has lost 6 months of this year to cervical cancer. As we approach a new year, my wish is that no one I know and love goes through the same year as I've just had. If you've never had a smear or you keep putting it off, please make it your new years' resolution to book an appointment.

I recently sat with my sister-in-law, Jo, at our favourite tea shop and over a coffee, we reflected about the year we were leaving behind. As you know from reading my past blogs, Jo has been a huge support to me during my cancer journey. We spoke about how it felt for her, having to be strong for me and to try and pre-empt my needs and anxieties, whilst dealing with her own worries and family commitments. I introduced her to the term 'co-survivor' and explained that she is this, since she had been through this journey with me every step of the way and that her great support had got me through this time. I talked to her about how the person centred thinking tools could help her get the support both practically and emotionally that she needed during this time, when she was trying to support everyone around her, including herself. I have introduced her to the think about your life website and next year, we hope to share some examples of how Jo has used the tools as a co-survivor during our shared cancer journey.

The things that I'll take from this year and carry with me as we start a new year are:

  • I can be a lot stronger than I gave myself credit for. The inner strength I didn't know I had, shone through when I needed it most.
  • I have a wonderful family and partner, who have got me through the worst year with love, laughter, and great support.
  • The close friends I have in my life now are true friends, having cancer has taught me that.
  • The very happy memory only a week ago, sat overlooking the twinkling lights of Manchester with Gareth, toasting his special birthday and celebrating getting through this year stronger and happier.
  • Finally, as I type, I have my 8 month old Labrador's head on my knee, reminding me he'd like a walk.  He makes me smile every day.

So I finish this year by wishing you all a very happy Christmas. Thank you for showing me how rich my life already is, because you've proved what great support looks like via texts, calls, facebook, email, cards, flowers, food parcels and best of all…by just being there when I needed you all most. Love and best wishes for a happy and healthy 2012.

A dog is for life, not just for cancer recovery…

Nov 11-2We came home from our first holiday together feeling tanned and relaxed; it was just what we (and my body) needed to recover from what had been a gruelling year. I had only just got through the holiday washing pile when I realised that my first counselling session loomed ahead of me. If I'm honest, it came round a bit quicker than I was hoping for and I don't mind admitting that I was dreading it.  

I was lucky that during my treatment, I had been surrounded with loved ones who were always on hand to lend a shoulder to cry on or just to listen to me when I was venting my anger and frustrations at dealing with everything. I knew it was important to start speaking to someone who I suppose didn't have a biased view of what I was going through, they were going to listen to my worries and concerns and challenge and encourage me to face my fears head on. Before my first counselling appointment, I found it really useful to look back at 'my tools' and read through my blogs that I'd written during my cancer journey, it helped me to re-visit some of the issues that I was certain would be discussed during counselling.  

I was anxious about the counsellor; Would these sessions help me with my hopes & fears? Would I be able to move on with my life after cancer treatment? I needed the sessions to be informal, like having a chat and to not feel like I was being judged for anything I had to say.  Most importantly, I needed my counselling session to include some laughter. Could a counsellor deliver all of this? I was worried that I was asking too much.

I went to the appointment on my own, for now this was a personal journey. I was so nervous sat waiting to go in. I knew that the next hour was going to be upsetting and I found it hard knowing that I was opening myself up for that, but I also knew that coming for counselling was just as much part of the treatment as the radiotherapy and chemotherapy.  

I didn't have long to wait before I was called into a room. Carolyn (my counsellor) introduced herself and explained that she had just read through my notes and was surprised at seeing me looking so well.  Apparently I didn't look like someone who had been through the treatment I'd just had. Carolyn quickly corrected herself by saying what a silly thing she'd said….after all what does a cancer patient look like? Even I at times had looked in the mirror over the past months and besides looking tired, I had no outward signs of being a cancer patient. We joked and giggled for a few minutes and it was very clear that the laughter box on my counselling checklist had a tick in it. I could feel myself instantly relaxing…maybe this wasn't going to be so bad after all.

During that first hour, we talked about how my life was before cancer diagnosis.  It was hard looking back and talking about some of the decisions that lead me to not have children pre-cancer. We chatted about the anger I felt at myself for some of the wrong decisions I had made many years ago. We talked at length about the timeline from cancer diagnosis, going through treatment and then on to recovery.  We talked about the decision to bring Riley into our family. I told Carolyn that I was worried she was going to tell me that I was using Riley to cover-up what I was really missing from my life. She assured me that Riley was a positive step and I was being honest about my reasons behind getting him. So no judgement…another box ticked.  We laughed and came up with the title of this blog.

I cried…a lot!  But they were good tears, they needed to come out. Of course I'd been upset, angry even, during my cancer journey but in confronting all of these issues, I felt I could start easing up on myself.  I can't change any of the past decisions I have made. I should be proud of myself in the way I have coped and found strength during the time of diagnosis and treatment and I am now addressing my hopes and fears by making decisions that will affect my future after cancer. I put off coming for counselling in fear that I was 'opening a can of worms', but I can honestly say I walked out after just that first session feeling already emotionally lighter than when I had gone in.

Nov 11- 1Carolyn has helped me to realise that I have the skills to get myself through this time in my life. I have found an inner strength during this year that I didn't realise I was capable of. I came home after the session and logged on to the Think About Your Life website. I was looking at the list of tools to see which one would fit best at this stage of my journey. Gifts & Capacities instantly leapt off the page. I have started to fill this in and will take it along with my other tools to my next counselling session.  I already know the power these tools have in their ability to open up conversations that may be difficult to start. My intention is to keep adding to this tool as I continue my cancer journey. 

As I started writing this month's blog, I received the extremely sad news that a friend, from my years as a nanny had passed away. I have two memories that I shall always keep of Julie. Firstly, Julie's sense of humour brightened up even the darkest of winter afternoons whilst waiting for the children to come out of school. Secondly, our lengthy chats about food…we shared a passion for food and kitchen gadgets. I watched her two sons today at her funeral, Julie would have been so proud of them. Greg & Alex showed such huge strength on such a painfully hard day.  

I came home today with lots of mixed thoughts running around in my head. I feel sad that I've recovered from cancer and get to move on with my life, when so many people around me have lost their lives to cancer. I know that this is something that I will talk about in my next counselling session, because on the really tough days when I'm struggling to make sense of it all, I know there is a safe place that I can leave my worries, fears and anxieties behind, leaving me to make the most of each day.    

In Limbo…...........

It was a very strange feeling the evening I left hospital after my final chemo treatment, there was no next appointment on the system, I was advised by my specialist nurse to go home and start getting back to normal and all that day each nurse I spoke to seemed pleased and excited for me that I was there for my last treatment. But what was this nagging unsettled feeling I was experiencing? Why couldn't I feel the same excitement?  After the exceptional faultless care I had received since walking through the doors at the hospital on that 1st consultation, I now felt very alone and in limbo. I didn't know what was going to happen next, had my treatment worked? How long was it going to take to feel better? I still had so many questions to ask, I didn't feel ready to face life ahead after cancer.  I went home that evening feeling exhausted and decided that I'd call the consultants secretary in a few days' time if I'd not heard anything.

A few days after my last chemotherapy, I received a letter from the hospital with a date for an M.R.I scan and an appointment a week after to see the consultant to discuss the results. I felt at ease that I was still being cared for and knew that when I saw the consultant it was my chance to ask questions and address some of my worries. After a few weeks of rest, I went to the hospital for my scan, a week later Gareth & I went to see the consultant to get the results. We both left the house that morning hoping we'd get some confirmation that the tumour had gone and that I was cancer free.  We were expecting to come out of the appointment optimistic and ready to celebrate, but instead we left feeling deeper in limbo than we had before. The consultant explained that although there was no sign of the 5cm tumour on my cervix, scar tissue and tumour can look the same on a scan, so at this stage it was hard to distinguish if it had completely disappeared. I needed to have a further scan in 3 months' time, after giving any remaining scar tissue some time to settle down. 

It was horrible having to reply to messages/texts/calls from friends and family who were all wishing me good luck for the appointment, some people said how happy they were at the news. But I couldn't understand why, yes I felt happy that the tumour had obviously responded to treatment but as someone who has heard the words "You've got cancer" I was desperate to hear the words "All clear". At that moment there didn't seem much to celebrate or should I say it all felt too premature to start celebrating.

 We drove home wondering how we could put this uncertain feeling into the back ground. I had three months before my next appointment, do I go under and let the emotional cancer battle win, or do I get on with life as I knew it before my cancer diagnosis. So whilst I waited for my next scan appointment it seemed a good time to start planning life after cancer as I enter the new normal phase of my cancer journey.

It seemed a good time now that my body was healing to now tackle my head, I had been offered counselling at The Christie right from the beginning, but I personally felt that I needed to get myself through the physical cancer battle before addressing the emotional side. Having cancer has thrown up issues I never thought I'd have to deal with, loss of fertility, starting early menopause and living with the fear that my cancer could return are worries and concerns that I have to deal with every day.  I was anxious about going to see a counsellor as I knew the 'can of worms' that was going to open up as I work through these issues, but I also knew I needed to work through them in order to move on after the last 6 months. So I rang the relevant department and booked the next available counselling slot for a few weeks' time, it felt good already knowing that I was being pro-active about my worries.

I then spoke to work and I set a date for my phased return to work. I have been supported 100% at work during my sick leave and feel just as supported around my return to work. As I return to my role as receptionist/office administrator in a busy private fertility clinic I know there will be issues that I will need to deal with on a daily basis, but knowing I have the support of my colleagues and counselling sessions booked I feel ready to return to a job that I had only been in 5 weeks before I was diagnosed, but a job that I already loved.

We've booked a holiday.  We have a week of relaxation under a scorching Egyptian sun to look forward to later this year.  It will be our first (hopefully of many) holidays together; it feels good to be finally planning exciting things to look forward to.

RileyFinally Gareth & I have welcomed a 14 week old chocolate Labrador into our home. I now have 4 weeks to puppy train and settle Riley before I start back at work.  He already is filling our home with love and helping me to shift some of the weight I've gained during treatment as I frantically run round after him. We've barely mentioned the word cancer since Riley became part of our little family.

 

 

Starting Chemotherapy….............but is that a faint light I see ahead of me at the end of this tunnel?

The hospital gave me a 3 week treatment break between my last internal radiotherapy and starting chemotherapy. They explained that this was so that my body could take some time to recover from the side effects and for me to get some strength back. At this stage I was finding it hard physically, my body was suffering from various side effects and I was exhausted after even the smallest task. The best advice I was given from the hospital was simply to listen to my body, eat well so that I can build my body up in case the sickness during chemo makes my weight drop, rest when I've done too much, and have treats and spoil myself. It seemed like trivial advice at first but they seemed very persistent and in fact more than one member of staff said the same things. I started to think that there must be something in what they were telling me…so with me not wanting to go against doctor's orders, I took their advice and for the next few weeks I had massages, beauty treatments, enjoyed lovely food with a few glasses of red wine, perfected my cupcake recipe (and sampled lots too), made my way through a box set of my favourite DVD's and slept when I needed it. 

The night before my first chemo, I felt well rested, content, and had put on some weight before this final stage of my cancer treatment. I was having 4 chemo treatments with two weeks between each one. I woke up the next morning really nervous, but mainly sad. I just never thought I'd ever be having chemo; it was such a scary word. I was so scared that I was going to get very sick and lose all of my hair (and I'd only just managed to grow my girly fringe just how I wanted it) I don't mind admitting that I cried that morning whilst I was getting ready. 

My sister-in-law came with me on the first day, I had to be at the hospital early to have a blood test to see if I was healthy enough to have the medication, then wait for the results to come back and be seen by  the doctor, the medication was then ordered from off site, I then had to wait for my chemo 'chair', finally I was called up to the first floor to the Chemo ward and had to wait for a nurse to put the cannula into my hand and the steroids and anti-sickness medication to be administered before I was hooked up to the chemo meds, I was going to be on the I.V drip for 6 hours.  I usually had to be at the hospital for 8am and at worst didn't get home until 11:30pm!  It's such a long day and the medication and waiting around left me exhausted for a few days afterwards.

juneblog1For me, chemotherapy meant a lot of waiting around and with that comes plenty of time to think. It seemed a good time to think about where my head was at, it was during this time that I started writing my blogs. To go right back to the very beginning and relive each step of this journey, how I felt and how it has affected me was really theraputic. I was very lucky during chemo that I wasn't too sickly, the day of medication left me feeling exhausted for a few days after, but after a few days of rest I perked up quite quickly. I used the time whilst I was having my chemo to write my blogs in a book, this lead me to jot down how I was feeling, my thoughts and plans for the future, and think about where my life was heading after cancer. It was during one of my chemo treatments that within my 'doodling's'  I spotted a tool............dreams. Without realising it I have been scribbling down all of the information I needed to fill out the dreams sheet on the website www.thinkaboutyourlife.org

Dreams picI transferred the information across from my book to the website and created my dreams sheet. For me it's a good way to put into writing what I want for the future, and I know that it can be expanded and added to along the way, but it was a really positive start into thinking ahead now that the end of treatment looked in sight. Unlike other tools, dreams seems more personal to myself, I'd be happy to share it with others, it holds no private information, but whereas other tools help you to communicate more effectively to those around you what you need and how you feel, using this tool during this time helped me in my own personal journey as to what I was feeling and what I wanted. 

Gareth and I are planning to get a puppy when I am feeling fitter, we know that we need something around the house to focus our energy on, we have each other and we've made it through a really hard part in our still new relationship, but having a bundle of energy around will help us build a routine and a family life that is as far away from cancer and hospitals as possible. We are planning trips to look forward to after treatment, with thanks to the charity The Willow Foundation http://www.willowfoundation.org.uk we have a weekend in Edinburgh including a meal in a Michelin started restaurant to look forward to. We're also planning our first holiday together to Egypt in September so we can start building some happy memories together like we were doing before my diagnosis.  

The future does look very bright, even if at times I've found it hard to believe it could be.

The part I was dreading…

I remember when I sat with the consultant at The Christie and signed the consent forms for all of the different stages of treatment and discussed what the side effects may be, the one part of my treatment that I was dreading even more than chemotherapy, was INTERNAL radiation. To explain as briefly as possible (and without giving you too many of the gory details), internal radiation involves an overnight stay in hospital. Under general anaesthetic metal rods were inserted into my cervix, which were then hooked up to a machine that blasted the radiation at the tumour for 15 minutes out of every hour for 13 hours. I had to remain lying on my back for the whole 13 hours. Nursing staff could only enter the room for small periods of time during all of those hours, and I couldn't have visitors. The metal rods and the packing that held them in place were then removed by a nurse, whilst I used gas and air as pain relief. If all that wasn't enough…I had to repeat it all over again the following week as I needed two treatments.  

The medical team at The Christie were very straight with me from the start about this section of the treatment, but then it's pretty hard to sugar coat it. They said it could be painful and uncomfortable but it was a very necessary part of the whole treatment. I put my trust and faith in them and tried to be brave….

I arrived at the hospital for my first internal radiation treatment; I started crying as soon as I got out of the car and didn't stop until the anaesthetic put me to sleep. I wasn't sobbing uncontrollably, I suppose my eyes were just leaking but I just couldn't control this reaction. After waking up from the anaesthetic I was in so much pain and felt like every time I moved it would cause me more pain. I was given an MRI scan to check that the rods were in the correct position, I was lying on the trolley outside the the scan room waiting to go back to the ward (still crying) when my consultant came to me, wiped my tears away, held my hand and told me that after just the 5 weeks of external radiation the tumour had shrunk from its original 5cm to just ½ cm. She was so happy that I had responded so well to only the 1st part of treatment, she reassured me that doing these two internal radiations would give me the best chance of being cancer free. My tears finally stopped and I started to relax. I was taken back to the ward and was hooked up to the machine, the nurse looking after me made sure I was comfortable and had everything in my reach (I was going to be flat on my back for the next 13 hours.) I counted down what felt like every minute until I knew Gareth was picking me up the next morning.

For me it was the feeling of being so vulnerable and isolated during this treatment that made it so hard.  Having forced isolation does not work for me, I prefer to be around people, I like being on my own sometimes but only when I can get my head into a good book…and of course it has to be by my own doing. This was a completely different kind of solitude…and it wasn't like I could jump up and run away was it? It felt very important to me that the nursing staff who was going to be caring for me during those 24 hours knew me…Jane, and not just another patient. I needed a way to convey very quickly important information about me, how I wanted to be treated and how best to keep me calm.Jane OPP pic By creating my one page profile before hospital, it helped me to stay positive and know that I was doing everything I could to make this scary part more bearable. As a result of my one page profile, I had some great chats about New York, was given a restaurant recommendation for my next visit and discussed which musical I'm planning to see next (Chicago or Wicked in the West End with Jen is already in the planning stage).

When I arrived back at the hospital a week later for the second treatment, I felt much calmer and relaxed. There weren't any tears this time, and as it was the same staff, we picked up our conversations from where we left off the previous week. I felt in control during such a scary and uncertain time. The relief was immense when Gareth came and took me home after the second hospital stay, for me the worst part was over.

 

Understanding me and my mood swings.......is that possible??

Starting external radiotherapy on the 1st day, and knowing I was going to be attending the radiotherapy suites at The Christie 5 days a week for 5 weeks, was really daunting.  I knew the treatment wasn't going to hurt, and once I was lying on the machine it only took a couple of minutes, but just knowing that this was going to be my daily routine for the next 5 weeks felt very unsettling. 

I had been off work since the cone biopsy and my subsequent diagnosis, and had no intention of returning to work throughout my treatment as my emotions were 'all over the place'.  I was still, on a daily basis coming to terms with having cancer and the impact it was going to have on my life, and working in a private fertility clinic was the last place I wanted to be.  I was offered counselling at the hospital at this early stage, but felt that I needed to deal with the physical side of treatment first, before treating my emotional side.  I didn't feel that I could cope with both at the same time, looking back now it was the right decision for me, I needed my body to be strong before I started to make my head strong again.  I had a big support network around me to call on whenever I needed it, (I already had my 5 week rota set up for who was taking me each day for radiotherapy, which fitted in with everyone's working weeks.)  I had a strong feeling this was going to be hard for them too, supporting me through such a tough period in my life, so I needed to try and make things a little clearer for all of us.  

 

Communication Chart

I knew there would be side effects, I'd been warned about them in detail and felt prepared for whatever lay ahead.  As it happens I didn't get any of the side effects mentioned but got different ones I wasn't prepared for.  This was the part I struggled with the most, and dealing with infected hair follicles and constant urine infections, to name but a few… really got me down.  My moods were constantly up and down, I knew I was at times hard to be around but was finding it hard to communicate with my loved ones how I was feeling, and heard myself snapping back regularly.  I felt that I just needed to keep my head down and see this through.  This was only the first stage of treatment, and with each external radiotherapy session I was a day closer to the 2 overnight INTERNAL treatments, which I was dreading more than I can explain.

Now that I was regularly logging onto the Think About Your Life website and using the person centred thinking tools in my cancer journey, I was starting to really hone in on the appropriate tool just when I needed it.  During these 5 weeks I'd been having good days and bad days, and whilst this tool would have been really useful, it didn't quite seem to convey the information I needed everyone around me to know.   There was a huge clue in the title, but I straight away headed to the communication chart, it was really powerfully going to put into black and white:

that I knew I was having HUGE mood swings…..

but it's because I'm feeling…..

and I really need you to do this to help me….. 

For me it's the little things that have the biggest impact, just having people around you who know when you need a cuppa, a big hug or can tell without you having to ask when you need a chat about the important stuff or just natter about anything.  I needed people to understand that sometimes during my cancer journey I didn't always need invitations to big events and nights out, (although they are nice, and it should be my decision if I feel up to a night out or not.) It's about getting people to recognise my changing needs on a daily basis. 

Sharing the communication chart with my support network helped them to understand me, so they could feel more useful and helpful; it took the frustration away that all sides were feeling. So yes, it is possible to understand me & my moods, I simply let this tool do the talking for me when I was struggling to speak for myself.

 

 

Getting Organised........

I was given a few weeks from diagnosis until my treatment started, and it quickly became apparent to me that I needed to use these next few weeks to get everything in place, before the roller-coaster of cancer treatment began. After the initial shock, tears and anger had subsided after being told I had cancer, I started to think very long and hard about what support I was going to need, but more importantly what support I wanted. Maybe it's my personality trait, but I needed to keep focused during these few weeks, and start treatment knowing I had done everything I could to try and make this cancer journey as stress free as possible. Hiding under a blanket and feeling sorry for myself wasn't an option, there was plenty of time for that when I was starting to feel poorly. I started to think about who I could call on to help when I really needed it, "who could take me to appointments, cook/clean/iron for me when things got too much. Whose shoulder was I going to use when Gareth wasn't around?"

Gareth & I had already talked about moving-in together. In his words "How can I support you when we live in separate shared houses". It was an easy decision to make, the love and support he wanted to give me was so genuine and although cancer had moved our plans forward somewhat, I knew it was what I wanted. So the first job was to start searching for a house for us to rent.  We discussed that we wanted to be settled and un-packed before my treatment started, (in 2 weeks' time) "Had I taken on too much, when I should have been resting in preparation for the treatment ahead?"

I sent out a blanket text to everyone after The Christie diagnosis and treatment plan, already the reactions of people when I told them face-to-face was affecting my emotional well-being. I just needed everyone to hear the news and come to terms with it in their own way. After sending the text, Gareth & I went to the local pub for a drink and some food, as I sat down with a large glass of Shiraz, my phone started buzzing…..and it didn't stop. The messages of love and support didn't stop for most of the evening, and genuine offers of help were overwhelming. Already any concerns that I'd had about how I was going to get through the next few months were disappearing, there was a huge amount of help being offered to me, "but could I give up some of my independence and accept the help being offered?"

I had weekly acupuncture treatments with Linda; I find acupuncture so relaxing and have had huge success in using acupuncture to keep my colitis in remission (and also keep stress and anxiety at bay to enable me to pass my driving test). I also had an appointment at Stepping Hill Hospital with my consultant and colitis specialist nurse, the 3 of us met to discuss how the cancer treatment could affect my colitis, and I left the appointment feeling very supported and re-assured that all of my health issues were being supported by understanding and caring medical teams.

On the Saturday before treatment started on the following Monday, Gareth & I moved into our house. He'd painted it throughout, all the furniture was moved-in/built/delivered and we'd unpacked and felt settled before external radiotherapy started.  Having such a positive focus during these weeks helped me to keep my mind busy or I know I'd have been sat worrying about what lay ahead.

For this part of my cancer journey, I knew the person centred thinking tool I needed to use was the relationship map.Relationship map Being able to think about the support and help that I needed and wanted, and then using the tool as a visual guide to help me to work out where there might be gaps in my support and open up conversations as to how they can be filled. In my experience people might not know what to say when you tell them that you have cancer, but give them time to process the information and they'll offer practical solutions to many of your worries, I just had to remember to call on these offers when I needed them.  It's true, when times are hard that's when you realise who is important in your life, and they are the relationships that you'll value all of your life.

I went for my 1st out of 25 external radiotherapy treatments on the Monday morning, and felt calm, relaxed and organised. I had used the last few weeks to ensure I had control of who and what I needed to get through the next few months. Team Jane was truly ready for the fight.

 

Discovery - The Christie

Reality sank in...

 Hopes and Fears

I feel that i've had 2 stages of diagnosis, in my 1st blog I talk about my consultant at Stepping Hill Hospital giving me the news that I had cancer.  But going to The Christie felt like being diagnosed all over again, it was when the reality of having cancer became crystal clear.

My partner Gareth came with me on my 1st appointment to see the Oncologist at The Christie in Manchester.  On the way there we both talked about how we never thought we'd be going for an appointment at this hospital, because in our minds, going to Christies meant you had cancer.  I knew I had cancer, I'd heard the words when I was told them at Stepping Hill, but today the word had a totally new meaning.  I had cancer and although I was in the best place to be treated, we had a hard few months of treatment ahead and this was going to affect a future I had always wished for.

My 1st fear was at how poorly I was going to get from all of the treatment and side effects, when I was feeling so well at the time.  When we were walking through Christies we both commented that we felt I didn't belong there, we were surrounded by so many very sick people, and there I was looking & feeling so well.

We were both sat with the consultant within 15 minutes of arriving at the hospital, I knew I wanted Gareth in the consultation with me, but before I had to ask Dr Barraclough who invited him into the room, explaining that at some point during the consultation my brain would stop taking the information in and that he could pick up the what I miss, and that she thought he'd have some questions to ask too.  I instantly felt very relaxed with her, I was going to get great care from this warm smiling lady.  When we sat down the consultant asked me how I want to hear the news that I was going to be given, I replied clearly and concisely...tell it like it is.  Dr Barraclough started to explain very clearly the treatment ahead, the effects that it will have on my body, the support I would need and the outcomes for the future.

I was so thankful to have Gareth sat next to me whilst hearing all that was said, the consultant was completely right, it got to a point during the appointment when I couldn't take in the information any more. Dr Barraclough explained that I was going to be having 5 weeks of external radiotherapy, then 2 treatments of internal radiotherapy and finishing with chemotherapy.  All of the treatment was going to leave me infertile and will start my body on the menopause.  I asked the doctor if I had time to have some of my eggs recovered and stored before starting, she replied that there wasn't and we needed to start treatment straight away, (Well I did say I wanted the news given clearly and concisely).  At that moment I could have burst into tears, I was suddenly grieving for something I'd never had and never would have, and how this news would affect the future that Gareth & I were planning.

We left the appointment feeling very supported and reassured by the consultant; we knew what lay ahead and how it was going to affect us, and what kind of support we would need to get through the coming months.  We sat in the car in  the car park and talked through some of what we'd heard, we both cried....so much had changed since we'd arrived at the hospital, a future we had planned for was broken and we had a tough journey ahead.  We knew then that our plans to live together needed to be brought dramatically forward, so that we could both be in a position of giving each other the support we both needed to get through the coming months.

A few days later I sat down in front of my laptop and the Think About Your Life website, I knew straight away which tool I was going to use for this stage of my cancer journey.  Hopes & Fears exactly summed up what was going on in my head, by being able to sort through some of those thoughts, hopefully I could start making sense of them and possibly turn some of my fears into hopes.