Late afternoon before Chemo. Wes and I met Mum in Much Wenlock for a wig fitting at ‘Salon 10.’ We were served by a lovely lady called Emma, who helped me eventually find a wig, and she also helped me to choose one in a particular style for the wedding. We then went for a couple of glasses of wine and some food, and Wes and I continued to have our own little party at home – a few drinks and some dancing until the early hours….

My alarm went off; I pleaded with Wes to ‘rewind time,’ but as magical as he is to me, obviously even he couldn’t do this. We set off to the chemo unit both feeling very delicate! We arrived on time (I can do it sometimes). It was a strange feeling, like we had not been away from the place – almost as if time had stood still, like a dream that I wanted to escape from. The team were really friendly, as they always were, and my named nurse for the day was lovely. I felt a little nervous as I knew how the session was going to make me feel.

Wes and I passed the day chatting and sleeping, with the sun shining into the unit. My next appointment was due on Good Friday, but they don’t do chemo on a Bank Holiday, so the next available date was the day before the wedding… After a good discussion with the nurse, it was decided that we would wait until after the wedding and honeymoon before we had another dose of this toxic stuff! We finally left with a bag of goodies – tablets and constipation relief (let’s hope for smaller poos).

We went from chemo to our friends Andy and Sue’s house. It was a beautiful afternoon, so we sat in the garden with cheese, biscuits and prosecco. I made a pretend toast to the launch of my new book. We then headed to Shrewsbury to have a few drinks with our work’s friends to wish Sara good luck on her new adventure. We managed a few, then it was game over; I was totally shattered and so was Wes.

We had some chilled time with little man on Saturday, and then returned him home for Mother’s Day with a card as big as him; he was so excited to take it to his mum. We went to see Nan, and then came back to bed for a few hours. The tiredness is impossible to explain. Chaz bought me some lovely flowers and wrote a beautiful status on Facebook, wishing me a lovely day. I will share his words with you; I found them very touching. “Happy Mother’s Day to the most wonderful mum!  You’re the strongest person I know, and I cannot thank you enough for everything you do! I love you so much, Carl.”

On the Monday we had little man for the morning, and we built him his own little shed. He loved making this with Daddy, and I really enjoyed watching them, but with a very heavy heart. I had a delivery of flowers from my friend Mel; these were beautiful – and better than the ones from lovely Eileen, which seemed to get lost in the post…. By time they arrived, they had seen better days. She was gutted, and her husband said he wished that he had picked me some from the side of the road, ha-ha…

On the Tuesday I had an appointment at the Severn hospice to meet the outreach palliative care nurse. I don’t like the word ‘palliative,’ and I just wonder what others have thought of this word. For myself and Wes, it means the end of life! The word ‘hospice’ also raises the fear of death for people, and this was certainly the way a lot of my family and friends felt at the mention of the place. I went there with Mum; Wes wanted to come with me, but I made him go to bed as he was on nights. We met the outreach nurse. She was lovely, and told me all about the service they provided; to be able to take me in if I needed to get pain under control, how I could use their DR, and at a weekend 111 would get me through to the out of  hours doc, as I would be known to the hospice. All this was so helpful; she was much better than the ‘chocolate teapot’ at the surgery. She asked us how we felt about the situation. I said there was nothing I could do to change the situation, so I had to remain positive and keep things as normal as possible, but I also understood I was very poorly. Then she asked the same question to my Mum. She struggled and found it very hard to talk about it. She became very emotional, but she also said that she wanted to be ‘upbeat’ as she knows that this is what I want. The nurse said she would refer us to their counselling team, and then showed us one of the rooms. This was a very strange, almost chilling, feeling.

Back home, we had some soup and I got myself ready to go to work. It was a strange afternoon there. Some people were clearly a little uncomfortable, not knowing what to say, yet others openly spoke about things with me. Sally came to talk to me, and she found herself getting really upset, bless her. I called her a polite name, resulting in her laughing and making us both smile.

I drove home from work drained. I pretty much worked and slept this week, especially with Wes and Chaz being on nights. On one of the mornings the boys came home from work, and were laughing and taking the mick out of each other. I lay in bed smiling and thinking, ‘I am not ready to go anywhere yet!’ I rang work to say I would be late, but I had no excuse – I was just lying in bed listening to the boys! I felt tearful and tired, and I cried on my journey to work. Sometimes you just need that silence and time to cry on your own.

It was now Friday, and I was so excited that I would spend the evening with Wes after his night shifts. We were going to watch the Tina Turner story at Oakengates Theatre for a bit of a change for a night out. We had a lovely evening with mum and Steve.

Saturday was Wes’ stag day/night. The lads went off, suited and booted and looking very smart, for fun and a huge drinking session. I went to meet Dad and Karen for lunch, and Alina joined us. We spent a few hours catching up, and also some serious chat – just sorting out finances so everything is in order, which will make things easier for Wes and Chaz when the time arrives. Then it was back to giggles (ugga chuga haha). That night I stayed over at Alina’s, and we spent the evening in PJs with Heidi as well, chatting and laughing.

On Sunday morning I was supposed to go and see Harry, George and Stacey and Mark of course, but Harry had a nasty cough, so I was unable to go. I hate this fucking disease, and the way that sometimes even when you try hard for it not to, it still controls what you do.

Later on Sunday the boys were back. Clearly, they had had a wonderful time – but wow, ‘rough’ did not cut it. I drove Wes to collect little man and we had a chilled afternoon at home.

The week following the ‘stag do’ was a strange week, with the boys all laughing at home. When I watch them, there seems to be no difference in their ages… All three of them laugh and have fun together. Although I was extremely worried that Chaz wanted wooden saucepans for the gas cooker, as he had burnt his hand on the metal one!!!

I had my fitting for my wedding outfit, and this was a very emotional day, as my future has this grey cloud over it, and I keep trying my hardest to blow it away but sometimes I don’t quite have the strength. Whilst having the fitting, Chaz rang to say his suit had arrived. Everything was coming together; it was brilliant, and he looked just the part.

A colleague from work had approached me, and we sorted out our differences. Eirian is also now coming to the ‘wedding night do’ as life is too short for negativity and shit and hopefully, now a friend. We also went to see our lovely friend Lynn, so they could sort out their differences, as Lynn means the world to me. She is such a kind and caring soul, and I am now hoping these two can be friends like they use to be. This was a good feeling, as we all used to get on and it makes day-to-day life easier.

This week I went for multiple colours with my hair, as I knew I had nothing to lose, because the chemo would kill my hair, not the dye!! On Friday, I emailed the lady that would have been my new boss to get her up to speed, and she sent me a lovely message back. My clients had been really supportive and were very interested in my journey, which was a nice kind of feeling. At work, the staff had organised Wes and I a sort of surprise that had been totally leaked but still was lovely – a pre-wedding buffet (missed you Bridie) This was amazing, and very much appreciated, especially knowing it was an occasion that some might not have chosen to be at. I am like marmite; people either love or hate my honesty!! I came home on a high, then had a shower and my hair started coming out… I knew this would happen, but I was not prepared for this.

It’s shit, a real reminder of what was coming. My head was again in turmoil; I had thought that this second time around I’d be prepared for it, but instead it was just a reminder of the shit journey ahead, except this time I was doing it with some knowledge of what was to come. That shit joint pain, that being stripped naked of everything that makes a woman feel good – but if it gives me another magical five months free of the cuntcer and chemo then I have to do it.

Today is a great day; I had the oldies for lunch, Liverpool won, Chaz shared fun stories, and the little one said numerous times, ‘I love you, Carla.’

For those of you out there reading this who have family or loved ones with a disease that could potentially end their lives early, please allow us occasionally to have some self-pity. Let us tell you how we want to be remembered – the songs, the tv programmes, memories that we have, savings and pensions we want arranged. Don’t knock us back with that sentence, ‘You’re not going anywhere,’ because obviously we are, and when we are gone, those questions you wanted to ask, you can’t – and you never will be able to.

So, the morning arrived, and we drove to Shrewsbury. There weren’t many words spoken between us; just the holding of hands.

The staff called us through, and they were as friendly as ever. The consultant started off with the results from the MRI – and he was pleased to tell me that the pain and trouble were caused by a prolapsed disc. This was such a relief, as I now knew precisely why I was in pain. A disc issue -not a malignancy. However…the cancer was back. The nodule on my lung had grown and another one had joined it! It was also on my liver capsule and my spleen. The consultant showed me the two images – the latest one, and the other from January. I found them intriguing, but it was also hard to believe that the computer image was my body; it was like the sort of thing you google to find answers.

The consultant told me he had booked me in for chemo to start the next morning. I told him, no, I was going to Spain first. The next available appointment was at the end of March. Our plan to go to Spain led to a surreal moment with the consultant, myself, Wes, and the CNS. He asked me about my insurance for my holiday. I told him I had none, because otherwise I would never have been able to afford to go away – and what did it matter to me if I died? I wouldn’t have to worry about bringing my body back!  And Wes said it was okay, he would just throw me down to the bottom of his parents’ land with all the dinosaur bones… The consultant found this hilarious, and this bit of laughter was just what we all needed.

I went home for lunch and then went to work for the afternoon. I was busy and the time passed quickly. Wes met me at work, so I could chat to the new boss about our results and work. Again, she was very kind and supportive.

I told Chaz the news whilst he was at his friend’s house, as I knew he would be able to offload there and get the support he needed.

I worked on the Friday, and Mum organised for me to have my hair coloured for my Hen Party by Kaz (it was so lovely to see her). Di came around to show Wes and I the table decorations for the wedding. When I asked about cost, she said, ‘Nothing, this is my wedding gift to you both.’ We were blown away by her kindness.

I was determined not to let my recent medical news ruin the weekend.

On the day of the Hen, Wes’ little one was over, and he insisted on helping me get ready. He is a funny little thing – such a happy little man who never fails to bring a smile to our faces, whatever we are going through. He means the world to me, and I would have loved to have written more about him, but I’ve chosen not to out of respect for his mother (despite everything that has happened).

Chaz took me to catch my train from Wellington; my mum, aunties, and cousins met me on the train. They gave me two cards; one was from Brett, with some money, telling me to have a drink on him. The other was from my mum, aunties and cousins, gifting us £120 for Wes and I to have a night away of our choice. This was such a kind gift.

We arrived in Shrewsbury and went to ‘The Alb’, where we’d arranged to meet people; we managed to get a table upstairs, and the girls gave me a sash to wear with ‘Mrs Lea to be’ printed on it, and some other bits and bobs to wear. Throughout the course of the day there were about 30 or so people that joined us to celebrate; friends travelling from London, and even from Newcastle and Cornwall (two of them a complete surprise). We then went on to ‘The Warehouse’, where there was another surprise; the girls had organised an area that was just for us, and had had it all decorated. I was also gifted with a chocolate heart and a book for the ‘Mrs Lea to be’ that the girls then stuck Polaroid pictures in, with personal messages written at the side of the photos.

I kept myself going – or maybe it was the gin that kept me going through the pain… By about 9pm I cried to my Mum, as the pain was just too much, and I wanted to be at home with Wes. Alina rang Chaz, and he came to collect me.

We spent the next couple of days with little one, and also meeting the Guthries’ new edition; he was adorable.

On the Tuesday, we went to Spain to Wes’ parents for a break. We took a lovely lady called Jan with us, who was going to spend time with her son who also lived out there. We had a fantastic few days in the sunshine; days at the beach, and eating and drinking. Gail treated me to a session of acupuncture with one of her friends. This helped me to cope with the pain, and to relax.

Wes was back to the grindstone on the Sunday, and I made a spot-on Sunday lunch that even Chaz was impressed by. (He always reminds me how much a better cook Kelly is than me!). On the Monday we went see Auntie Pat and Uncle Jim. On the journey there we had a flat tyre. Wes and I worked together and changed this, whilst Nan and little man sat in the tilted car! It was funny and proper team work.

I had to tell work colleagues that I was due to start chemo again on Friday. I found this a difficult conversation to have this time around for many different reasons, but I did it through water-filled eyes.

I have to admit that I have found this emotionally a very difficult chapter to write, and I apologise to anyone whom I have not managed to tell before writing and sharing this latest section of my blog.

The pain continued, and I was finding it difficult to breathe properly without being in excruciating agony. I was in tears, and asked Wes if he would take me to A&E as I couldn’t stand it any longer. I felt bad rocking up in the Emergency Department, as I didn’t come under the bracket of an ‘accident’ or an ‘emergency’, but I didn’t know what else to do. We waited patiently to be seen. Finally, the doctor called us through. She was very polite, listened, and overall also was extremely caring. She sent me for an x-ray of my back and chest, took some bloods, and did a tracing of my heart.

We had another long wait for the results. Chaz joined us at the hospital. One of our old colleagues (H) was working, so we all got big ‘H hugs’! They were much needed, and I believe that even Wes enjoyed them. Staff were so busy, but they continued to smile throughout the pressures of a hectic department. The doctor called me back through. My ‘D-dimer’ was raised, which can be indicative of a blood clot, so they wanted to send me for a CTPA examination. That test would show if I had a blood clot, as they did not want to give me Tinzaparin (a blood thinner) in case the back pain was due to malignancy. Once they had ruled out the blood clot, they referred me to the orthopaedic surgeons, who examined me thoroughly, including a feel of my back passage (Oh, the joys!!!). They wanted me to stay overnight to have an MRI the following day, but apparently I would only have a trolley for the night…. Being in so much pain, I couldn’t deal with that scenario – I needed comfort – so they said they would bring me back to the clinic for an MRI. I returned home and took the maximum amount of the pain relief that I had, and tried to settle (after ringing work to say I wouldn’t make it in). I sent an email to the A&E consultant about the exceptional care I’d received from the doctor.

Wes asked work if he could attend the appointment with me, and eventually this was agreed. We went to the appointment. They completed the same examinations that they had done the previous night, and eventually told me I would get an appointment for an MRI within 3 weeks, and then would be seen in clinic in 6 weeks…. I just felt completely despondent, but it was time to ‘suck it up’ and find ways of dealing with the pain instead, with no answers about the cause for a while.

The following day I had a call from the acute oncology team to see if there was anything they could do to help me. There didn’t seem to be, as I had a CT booked and was taking the pain relief as I was meant to. I was gutted, as I had to miss Alina’s Leaving Drinks – I was in way too much pain to make it out. The girls who went sent me some lovely messages, making me smile through the pain, and Stacey came to see me.

I had a call from the hospital asking if I could go on Saturday morning for my MRI, as they had a cancellation – this was brilliant news.

Wes and his little man dropped me off for the MRI and went to get some lunch. The girls in the MRI suite were really kind and helpful; I knew a couple of them, so had a hug and quick catch up. It was painful having the MRI due to the position I had to be in. After this, Wes, little one and myself headed off to Ben and Memsy’s for a sleepover. We did have a very chilled weekend, but I was very breathless with any exertion at all. This worried me, as obviously I knew I had a nodule on my lung and so was concerned that this was causing these symptoms. My emotions were all over the place, not knowing what was happening inside my body!!

I was due to go wedding shopping. I was exhausted from the pain, but I wasn’t letting this bastard beat me. Wes and little man dropped me at the train station to meet mum, and we were due to meet Jeanette on the train (we didn’t actually see her until we got to Birmingham). The train was crazily busy, and we were packed in like sardines, with some very vocal moans about the “British transport system.” I wanted to scream at these people to stop moaning and just be thankful they were alive, and to see the funny side of how cosy and packed in we all were (the drugs obviously helped me…). We finally met up with Jeanette at Birmingham station, and went for a coffee to ‘catch up’ first. We then went from shop to shop trying on dress after dress. They even persuaded me to try on a proper wedding dress; I looked like a meringue and a very expensive one at that! I was all for giving up for today – the pain was back again, and I was breathless. We set off for lunch, and on our way I spotted a shop that I liked the look of. I said we would try there on the way back. So, after lunch, laughter and prosecco, we returned to the shop and there it was – the perfect outfit! I felt really good. It was an amazing feeling; I was actually done and sorted (I hate clothes shopping…!)

Chaz collected me from the station. I was in terrible pain. I got home, took some analgesia, and had a lie down. Wes’ mum, Gail, rang me to see how I was. I struggled to hide the pain; even on the phone I was breathless and fed up. I was in bed by 8pm that evening, and slept through. I had also carried on with my CBD paste and this was definitely helping with my pain.

I woke the next morning and made myself put on my ‘positive mind’. I got ready for work, passing Wes like a shit in the night (oops, typo error, I meant ‘ship’!!). We had a new Head of Health Care, who was extremely supportive and had bought me some lovely flowers and a card, and also reiterated that if there was anything Wes or I needed, we should just ask.

The day went quickly thankfully, as I had to starve for a procedure the next day, and I actually did not become hungry!!

The following day I went for a capsule endoscopy. This procedure involves swallowing a capsule with lights and a mini camera, and then being attached to a box for the day whilst your small bowel is filmed on the inside. it took a while for the camera to enter my small bowel. Once this was achieved, I had my blood taken by the endoscopy HCA. He was very gentle, kind and professional. I was then allowed to leave the hospital.

I went to visit friends, Sue and Andy, and ‘clock watched’ till I was able to have a drink and food. We had a lovely afternoon. I headed home to meet Mum so she could take me for my CT and to return the capsule endoscopy equipment (Wes needed the car as his was in the garage for another expensive visit!). We returned the equipment to the hospital and then went for a pub tea with Alina before returning back for the CT.

At work the following day I received a phone call to say my tumour markers had raised again, so they were taking my results to MDT early and bringing my appointment forward. I didn’t really know what to do, and there was no-one at work I wanted to talk to, so I kept myself together and finished the day. I really didn’t want to tell Wes or Chaz before their night shift, but I felt it was unfair not to tell him or Chaz.

We carried on having fun and meeting friends. We went for a lovely lunch with Lynn, Alina, Sara, Wes and Kal. We left the boys having a few more beers and doing some ‘man to man’ talk.

We had a busy week, and ‘little man’ had chicken pox (bless him!).

Nearer the time for the appointment, I spoke with the boss and asked if it was okay for Wes and I to go to it together. This was not a problem. Mum was unable to come as she had a chest infection, and I also wanted her to be well for my hen party!

I slept awfully the night beforehand, and Wes did too. I did not have the best of feelings about this appointment.      

I had some more lovely family time with Auntie Mems and Uncle Ben (the favourite), and a sleepover with Lynn and Alina and a baby shower. But I had some of my usual pain this week, my stomach was swollen, and there was also some tremendous pain in the top of my right shoulder. I took some pain relief and continued to work.

It was Valentine’s Day, when I had an email to confirm my new role. I was so torn about this; I was enjoying my current job and the role that I was now a part of, but the new lady and the new job seemed so exciting too. Twenty minutes later I had the phone call that I was waiting for from my CNS (always lovely and professional). She first asked me if it was alright to talk. Then she told me that my blood results were back, and that my CEA was raised and so was my CA125. Both these bloods were tumour markers. It had been decided after discussion that they would like to bring my CT forward. She asked me to let her know as soon as this date came through.

I put the phone down and broke into tears. Thankfully only Wes, Alina and the other lovely bloke I work with saw me like this, as I wasn’t ready to share this news with other work colleagues as yet. (This ‘other lovely bloke’ is Roy, who has first-hand experience of dealing with this disease; he has a very close family member going through something very similar, and he’s full of advice and wisdom).

That weekend we had family round with all the children; it was a fabulous day. Then friends Russ, Amy and their little one came for lunch. It was a wonderful weekend, taking my mind off everything.

The next week I felt so frustrated and angry with so much of the life that I was being handed, and I was finding it so hard to be positive. I knew I needed to get that positive mind-set back. Everything was such a rollercoaster, and even though I don’t like heights, I still wanted so much those ‘high points’ of the rollercoaster.  I said to Wes, ‘Come on, we’re going away for the night, escaping from it, and I want to do something outdoors the next day.’

So, we went to Chester, had a fantastic meal out, and some drinks and giggles in the room, and the following day we went off to ‘Crocky Trail.’ It worked – my positive mind frame was back.

I worked for a couple of days and felt positive, and also attended Les’ funeral. Although a sad occasion, it was a beautiful service. Chaz came with me, and we made jokes of how he was getting tips for mine and where everyone would go afterwards to party!!

That weekend I went off to Newcastle to spend time with my friend Sharon and her Mum, Doreen, and Tom. It was a long way on the train but very relaxing, and luckily I didn’t have to sit by someone who smelt or who talked too much… On the other hand, I had terrible wind and no Wes with me to take the blame!

I arrived in Newcastle and it was beautiful sunshine. We watched the rugby, had a trip to the beach, and spent quality time catching up.

I was in so much pain in my lower back and right lower side (flank area). Doreen made sure I took analgesia and looked after me like a second mum. She has always been such a kind and caring person. Sharon made me promise I would go to the Doctors on my return home (she knew that if I promised, I would).

The train journey home was uncomfortable due to the pain, but I tried to lose myself in a book, and kept smiling at the thought of Wes and his little man meeting me at the train station. It was totally worth it as I got two huge hugs.

On Monday night I couldn’t stand the pain any more, and I had to have Oramorph to help me sleep through it. I had also started with CBD Oil and honey from CBD uk I rang the GP surgery in the morning and managed to successfully get an appointment for that day, Wes took me to the surgery. I explained to the GP my history and the pain I was in. She suggested that the pain on my right side was probably due to coughing. Hmm; that might be the case if I had actually had a cough! She asked me if I wanted her to prescribe some pain relief. I explained I already had some, and that giving me a prescription for pain relief did not tell me why I was in so much pain. She asked me what I wanted her to do. I bit my tongue and said nothing, and through gritted teeth just thanked her for her time. She had been as helpful as a chocolate teapot!! We headed home; I felt so disheartened and in so much pain.

A fabulous time was had in Morocco; we enjoyed lovely food and drink, and also the hustle and bustle of Marrakesh.

We returned from our beautiful bit of winter sun to harsh reality – letters about three hospital appointments. One was to be done over the phone, another was to go and see the Consultant, and then there were two letters for the same time and date… My first job was to sort out this computer/admin error.

We continued with day-to-day life; going to work, spending time with the little one, and Chaz and Wes made another mud kitchen together.

The wedding plans were coming along nicely, and my hair was growing well. I had four of the girls from work round for chili and a catch-up. I was also offered a new job – exciting times ahead!

I started publishing my blog, and was amazed at the positive and encouraging comments from people. I even had a phone call from a press company wanting to do an exclusive for a newspaper to help raise awareness..! This seemed surreal and exciting. They arranged a phone interview with me, and published my story in two national newspapers.

I had a discussion with the Clinical Nurse Specialist (a lovely lady). She told me that my scan had only just been reported on, and that she was unable to tell me anything until my consultant had interpreted the results. She called me back later in the evening to tell me that I would be discussed at next week’s MDT meeting, and then I would have an appointment to see the Consultant. Another agonising wait for seven days. My head was spinning; if it had to be discussed at an MDT, did it mean there was something on the scan or was this simply routine? My mind went into overdrive.

Friends and family were asking me if I had the results yet, and they questioned why it was taking so long, and how ridiculous it was, having to wait that long. I am not sure why they aimed their moans at me, after all I was just the patient.

I still felt totally exhausted, and I guess this was a result of what my body had been through in the last year, and part and parcel of a busy life.  We visited our friends, Sue and Andy, for lunch, and then went to catch an afternoon film, so the day wasn’t anything too strenuous – but I still fell asleep in the cinema. I couldn’t help having that niggling doubt that the cancer was back, because of how tired I felt, but I continually tried to push that thought to the back of my mind.

I attended the hospital with one of our clients. On the way there, I received a telephone call from the CNS nurse, as I had requested to be informed about the MDT discussion. I was told that it has been noted that I have a small nodule on my lung, which they will discuss with me at my appointment, and that they do not need to do anything with this at present. I felt sick; there had been nothing on my previous scan, but now there was this nodule. I went to the hospital, and met my colleagues and client there. I’m not sure how I kept myself together that afternoon; the nodule may only appear small on the CT scan, but to me this was huge. I hadn’t told Wes on the phone, as he was ‘on nights,’ and I wanted him to sleep. When I did tell him, he asked, “What do they mean, they’re not going to do anything?” Again, I didn’t have the answers.

The following day I rang back, and asked for a letter version to explain what I had been told on the phone. This was a Friday, so I was promised they would get back to me on Monday. Monday came and went – nothing. I chased it up, and eventually went to the hospital to collect my own letter a week later. The letter simply stated what I had been told on the phone, so I still felt completely in the dark

I had an appointment arrive for a colonoscopy and an endoscopy, and an appointment arrived to see the consultant the day after.

We went off to Birmingham for a night away, just to forget all our troubles. We really enjoyed the short time away – it was perfect, just what the doctor would have ordered if I had indeed seen him! We finally got our pack of wedding invites in the post, and this side of things was becoming so exciting.

The days passed as I waited for an appointment with the consultant to discuss my scan further. I felt very much like life was on hold until I had seen him.

The week arrived; consultant appointment, colonoscopy, and endoscopy. How lucky was I! For those of you that are not familiar with a colonoscopy, you have to take a prep to empty your bowels the day before. It’s horrid stuff. As a nurse friend said to me on message, it’s completely different to my last poo story. This time it was more like the contents of the can of coke… How fortunate were the boys to live with me.

The night before, I had Alina and Sarah round for tea. We ate loads to compensate for me having to starve the next day. It was a wonderful evening, as always.

I prepared my prep and took the first dose. Within two hours the toilet had become my best friend.

The following day Chaz took me for my appointment. They talked me through the procedure, and I signed the consent forms. I got changed into a gown and a lovely pair of paper shorts that had a hole round the bottom area for easy access (ha!).  They gave me some sedation, which was the best bit, as you remembered nothing and I knew I was guaranteed a good night’s sleep.

The following day was my appointment with the consultant. My mum and Wes came with me. The consultant told me I had a small nodule on my left lung and another one behind my large bowel. Because these nodules were so small, they couldn’t say that I was in remission any longer, but neither could they say for definite that the cancer was back. He suggested a further scan in a few months’ time, and he said how well he thought I was doing, as “usually by now the cancer would have returned.” Somehow this did not make me feel lucky.

I hadn’t had my bloods done for the appointment, as I had the prep and sedation the day before. He asked if I would get them done the following week.

I came away from the appointment not knowing how to feel or what to think, so I decided to do what I do best – put my positive face on and get on with it. After all, my life was better than that of a goldfish who just swims around in his own poo.

I had my bloods taken, and now await the results….

Back to reality.

Our appointment was looming, and I felt so nervous. My consultant told me how the one tumour was no longer visible on scan, and the other had shrunk quite considerably. He asked if I was happy to be referred to the ‘Christie’, a specialist hospital for cancer in Manchester, to see if there was anything surgically that they could offer us. He told me I would have to have ‘maintenance chemo’, but I could have a four-month break (including the break I’d already had). This made me feel shit, just the thought of more chemo. He did say I could have the less aggressive kind, which meant I would not lose my hair and it wouldn’t give me the severe joint pain. I would be able to work my life around it – instead of my life around the cancer, and having to let people down because I was so exhausted. And it was an exhaustion that was always so difficult to explain to people. I told him I wanted a few months of reality first. He agreed that I could do this.

I arranged a meeting with my boss to sort out my return to work. This would be a four-week phased return, and then working part-time, incorporating annual leave into my hours. I was actually excited about going back to work. It was arranged for the last week of October.

We had a weekend at my Dad’s. He lives by the coast, so it was always perfect to walk along the beach and clear my mind.

I was so nervous on the morning when I returned to work. Some colleagues I hadn’t spoken to since being off, but I had spoken to those who were friends, and they were the important people. There were also lots of new faces; they were all very friendly and kind. One of my colleagues (known for being unpleasant) did not ask how I was, nor did she welcome me back. She just commented to other people how much Wes had changed, rather than asking him how he was – and just wanted to know how long my hair was and ‘was it grey?’ she is one of the most insensitive people I have ever met. I felt very angry with that one particular person and with how she always seemed to get away with her actions. The clients I dealt with were very forward, asking me questions and telling me their own stories of how cancer had affected their lives. I found this rewarding and therapeutic, and I loved their thoughtful directness. I settled back into work quite quickly.

I went out for tea with Cheryl, Nige and Wes. I had a few too many red wines, and Cheryl and I got very emotional and both shed some tears. It felt to me like a much-needed cry after being back at work.

Every bit of post that landed on the doormat I feared, but I had a letter arrive from the Christie Hospital. They thanked me for the referral, and explained how I have a strange pathological diagnosis of gastric type adenocarcinoma. They stated they were not commissioned to deal with my type of cancer, as the primary did not fit their criteria. It was very strange to be told that my cancer was not the right ‘lucky’ cancer that could be seen by this specialist hospital. They did, however, ask to look at my previous scans and results dating back to 2005, and said they would be back in touch.

I had a very strange experience. I went on a mandatory training course, and met another lady who had also not long returned to work and had been through chemo. We shared stories and experiences; she was now being seen by the Christie, and we still keep in touch periodically.

I went to a meeting with Macmillan, who are hoping to roll out a new strategy around services and support for patients at GP practices in the Midlands. This I felt to be rewarding, because if they can fill the gaps that I felt I missed out on, it will help somebody else’s journey to be easier.

Another scan at PRH. Another waiting game for results. I kept myself busy in various ways – spending time with family and friends, Lynn’s 60th, Halloween and Bonfire Night. I love this time of the year and catching up with friends, especially Sue and Andy, who have supported me through helping me to write up my experiences and in encouraging me.

I received another letter from the Christie, stating that they felt the scan was normal and they questioned whether the first scan was done too soon after surgery. They also questioned whether it was incidental that the cervical cancer was indeed the primary, given the fact it was so small. They also questioned whether the metastatic disease had come from a previous missed primary. At present they felt I was free of any obvious disease.

As you can imagine, I could not get my head around this content, and I needed it explaining to me. The next day I headed off to the chemo Day Centre to try to get some answers. I saw my consultant in the corridor talking to a member of CT. He asked if I was okay, and I said about the letter. He said he had seen it, and I said I don’t understand it. He told me he would book me an appointment. He stuck to his word and booked me to see him within two days.

He went through the letter and explained that from a surgical point of view there was no obvious disease, as in ‘there was no surgery required at present.’ On reflection, I do not feel this letter should have been sent directly to me, as it was very misleading. On the other hand, the scan had showed I was in remission which was absolutely fantastic news. I had not put much on social media up to this point, but this was well worth a status and I received so much love, which I am so grateful for the lovely messages.

This was the perfect start to our next trip to Spain with little man.

It was amazing. Wes had waited so long to be able to take him to his parents, and complete happiness showed in his face, and it was the most wonderful way to spend Wes’ birthday. We all loved every moment of it. Just before we went to Spain, I took my next brave step and coloured my hair, ready to go permanently without a chemo hat. Lyndsey helped me through the process of colouring and toning my hair. I felt pleased with it all, and went without my hat.

So now Christmas was upon us, and it promised to be completely magical. We had day trips to visit Santa, and Thomas the Tank Engine, and we put the tree up for the first time in our new home. It was so exciting. Gemma and Ben had very kindly invited my Mum and Steve for Christmas. We’d had no idea about this, and we were just sent a picture with a comment saying we would need more chairs. This followed a conversation I’d had with Gemma over a wine earlier in the year, about the possibility that this could could be my last Christmas. She had clearly gone home to chat to Ben, and they had decided to make it extra special. So thoughtful and kind.

Wes and I had a trip to London booked, as we had very kind gifts for our birthdays that included going to see ‘The Lion King’ and our hotel being paid for. We visited ‘Winter Wonderland’ in Hyde Park, Soho, Camden, Carnaby Street, and also met friends at Baker Street. But the most important part was our trip to Bond Street, where Wes got down on one knee and asked me to marry him. I have never felt so excited in all my life, and of course my answer was ‘yes!’ Again, we were sent much love.

We had the best Christmas – cancer free, engaged to be married to my best friend, dinner with all the family, and Chaz even managed to get the day off. It was just perfect, as was New Year’s Eve – a quiet night, seen in with beautiful friends and feeling much more positive than last year.

I went for another scan and I now wait in limbo for those results. I have had pain on and off since Christmas, but I believe it’s brought about by the partial blockages I get, which cause me to be constipated.

We went to the #jonessecretwedding. It was amazingly romantic; she looked beautiful and Mark didn’t look too bad either! It was fantastic sharing such a special day, and seeing the shock on people’s faces, who thought they had come to Mark’s ‘Surprise 30th’ but instead they were at a wedding party. I couldn’t see the whole night out as I was exhausted, but I so enjoyed my day.

I am now sat enjoying a bit of winter sun in Morocco, before heading back to more scan results, but I remain positive that this will be a good year, and I plan to marry my best friend/lover, Wessie woo, on April 27th.I was so excited to start a new chapter, but first I must wait for the results of my last scan. This will be discussed in a week’s time at an MDT; another wait whilst my results and my future sit on a hospital computer.

Sending this chapter out today, I am feeling very sad, as we have just lost another friend to this shit disease. Les Jordan:  always so kind to me and Chaz, you will be missed by lots of people.

I tried to go to the coffee morning at the hospice. When I got there, I sat in the car in the car park feeling really nervous and not wanting to take that step and go inside. Eventually I talked myself into getting out of the car and I walked through the hospice doors. But I had an overwhelming feeling that I still find difficult to explain. I turned around and quickly paced back to my car and sat inside and cried.

My personal confidence was low, and I struggled to go into shops etc on my own. I had that fear and feeling of vulnerability, and I did not want to show that weakness to acquaintances whom I might bump into in the supermarket.

I finally had my sixth chemo. I was feeling generally exhausted, and so felt really pleased that this was my last one. I had a reduced dose of chemo as per protocol following my blood levels.

I felt so low in the days that followed. It seemed to me that life was passing me by, and that I was too tired to do anything about it. I wanted to return to work but that seemed out of my reach at the moment. I had to wait six weeks for a PET scan, to make sure that the chemo was definitely out of my system, because it would give a truer picture of what was to happen next. I cried almost every day. I was jealous of Wes and Chaz getting on with everyday life and both of them being able to go to work. Why the fuck was this happening to me? Why had cancer chosen me? I have always been a believer in things happening for a reason, but I was struggling to find the reason with this shit.

I spoke with Gail about how low I felt, and how I was really struggling at the moment. She listened, and advised where possible. I made a decision to try antidepressants. Gail will probably never realise how important that chat was and how much it meant to me. She is one special lady, someone you can be totally honest and open with, and know you will never be judged. And it was nice not to put the added worries onto my Mum or Dad, as they would worry in a different way as I am their daughter. The fact was that I was now in this limbo state – I didn’t know whether I was in remission, or if I should go back to work, or even if I was going to have to have more chemo… Aghhhh! I was out of control of my own life!!

Gail and Simon wrote us a poem.

I rang the Doctor’s and managed to get in on their afternoon scheme called, ‘Wait and be Seen.’ I was called through for my appointment – and unfortunately felt the GP’s immediate reaction of, ‘Oh, she has a chemo hat on.’ It was a sudden change in attitude that I have felt many times. I found this particular reaction a little sad, as the ‘caring profession’ should be about treating people as equals. I explained to her and her student how I felt very low; that I felt like a ticking time bomb; that I found myself in unusual circumstances and unable to cope with everyday life; that I also felt angry with the people I loved, because they did not have to be dealing with what I had to. They started me on Sertraline, a small dose and one that would eventually increase. It was crazy how I found this a difficult thing to admit, that I had to have tablets to help me through this time. Somehow I felt weak, but I knew that this was not the case and it was no different to me taking tablets for my underactive thyroid.  A quote I read seemed so relevant; “You don’t know pain until you’re staring at yourself in the mirror with tears in your eyes, begging yourself to just hold on and be strong. THAT is pain.”

August; time for the Barnstock, Brewin and Gould festival. I was so excited, as I knew it would be so much fun, because they always put on the most amazing and generous party. A fantastic night was had by all, and there were surprisingly no broken bones caused by that little thing called ‘gin.’

Also in this month we had the invite to Stacey and Mark’s surprise wedding. I was overwhelmed that we had been included in this small service for two people; that gesture meant the world to me and clearly I to them. I was so excited.

We were invited to an Awards Evening for raising money for cancer research, so we all went and laughed loads and had a fun time.

We then had my ‘baby’s’ 21^st birthday! I wasn’t sure how this has come around, but here we were. I organised a meal with friends and family – so proud of my boy.

This was also about the time that I became addicted to ‘Baby Shark’ – which was so annoying… I was unable to get the song out of my head when drunk, and I did my own version, and in my drunken frame of mind thought it was good to share it on social media… Drinking usually went one of two ways, making me happy or extremely sad.

My old friends, Sharon, Claire and Jeanette booked for us to stay together in a cottage near my home, as they understood my fears of being too far from home at the moment. We had a fantastic weekend, with a mix of laughter and tears. All very beautiful supportive people.

It was Sharon’s birthday that actual weekend and mine later in the week, so the girls had brought cake and fizz. I was truly spoilt for my birthday; my standing joke was that it could be my last!! My friends told me off for using this phrase… I think it is funny, and honest reality, as it could be said for any one of us. Harry, my 3 year-old friend, took me for a meal; he choose the venue – McDonald’s, love him

As we were due to go to Spain (again!), Ade and Jewels kindly gave us some Euros, and little Yvonne spoilt us as she always did when we went on holiday.

I had my PET scan the week of my birthday. It was originally booked for my actual birthday, but it was cancelled due to some technical issue.  It was strange going for my second PET scan, as the previous time it was to see how far the disease had spread and this time it was to see if I was in remission.

We went off to Spain for a week. We had hoped to take the little man, but it wasn’t meant to be on this occasion.  At the airport we had the obligatory pint; Wes and I giggled, as I had said we need to go for our ‘hereditary’ pint… I mixed up so many words because of ‘chemo brain’!!

It was a wonderful break at Wes’ parents as always. We met some new friends, Al and Carol, who were both beautiful and funny people. It was always lovely when we went into the local village for Cortado, as Linda and Perry (the locals) are always very pleased to see us. We spent some gorgeous days at the beach, and then had a driving adventure that Simon decided to take us on, with sheer drops… I was petrified and quiet; I’m not sure if that was his way of getting some peace. I have to hand it to him though, he was an excellent driver and it certainly took my mind off the cancer!!

My 5th chemo.  I was totally exhausted and actually fell asleep during the chemo. I felt like I could sleep forever, and I wanted to be woken up when this part of my journey was over, and I could close the door on this chapter. Whilst I was having chemo, I asked the centre if they would check that an appointment with the consultant that I had received was still needed; I had only just seen him, and so I didn’t think there was anything else he would be able to tell me at this point. I was reassured that he definitely had requested this appointment.

I had planned to rest as much as I could for a few days, as I had a really busy couple of weeks straight afterwards. To go to the appointment with the consultant, I literally had to drag myself out of bed. When I was called through, I found that the meeting was only with the nurse to see how I was coping with chemo…! I was so angry; this could have been done over the phone, and I was exhausted… Unfortunately, I did not hide that frustration. The nurse did apologise, but I felt that this mix-up was very poor communication.

We had an email from one of Wes’ friends, Margarite, who told us about two products, Kefir and Turmeric, which had evidence to show they have been of help with the immune system and joint pain. So I ordered these items and began taking them, seeing that I had nothing to lose.

Wes had taken his little son back on one of the days, and his Ex  said that she knew about my cancer. Her first question was to ask Wes how long I had to live. I found this one of the most inappropriate questions I had heard, and was so saddened to believe someone could dislike me this much. A little later she even had it documented for the court, that she felt our home would be a ‘negative environment’ for her son to spend time in due to my cancer… I was devastated at these comments, as I believed that I had remained positive throughout the illness so far.

We also started counselling to help us cope with the ongoing treatment. As a couple, we felt this would help, because we were dealing with so many things, although the cancer was obviously the main issue.

We arrived at the appointment for counselling, both so unaware of what to expect. It was a beautiful sunny day, and we sat outside in a little summer house. It was so peaceful and tranquil. To begin with, the lady introduced herself and spoke about my diagnosis. But she had been given the wrong information; she thought I had breast cancer…. She could not apologise enough. She asked me how I felt. I could feel the tears stinging my eyes. She excused herself and went to get a box of tissues. Whilst she was away, I had a fight in my own head to prevent myself from crying; I was scared that if I did begin to cry, I would never stop.

The one thing she asked us to do was to each spend five minutes, once a week, telling each other how we felt – and without interrupting the other person. This exercise was very good for both of us. I told Wes how scared I was of dying, how frightened I was of not being there for Chaz, and that I was worried how Wes would be if the worst-case scenario happened and I broke in his arms. I won’t describe what Wes said in his five minutes as they are personal to him. The thing I needed to accept the most was that this was a new life for me – a ‘life with cancer.’ This is a very hard thing to do, as when I do try to accept it and talk about the things that I want to be in place when I die, friends and family just ask me to remain ‘positive.’ I guess the bottom line is that none of us really want to face the reality.

So we came to the start of the busy couple of weeks.

It was the evening party after the wedding of our friends, Sarah and Scott. I opted for a purple dress and matching chemo hat. The party was at a stunning location, and the weather was brilliant. I felt a little sad, as I knew Sarah would have loved her mum to have been there, but she was taken by cancer when Sarah was just 14 years of age.

The evening party was fantastic. I did dance through the pain and suffered terribly the next the day, but it was totally worth it.

Wes’ parents then visited. It was a wonderful few days, and it was so exciting for them to spend time with all their grandchildren. I was extremely tired but thoroughly enjoyed every minute – spirits were high, as the England football team were doing so well, and everyone believed it really was ‘coming home.’

We continued with the fun leading up to my 6th and last (for now) chemo cycle. We went to see George Ezra in an outdoor concert (absolutely amazing)

and we went to Blackpool for a last-minute trip and an afternoon of fun at little Yvonne’s.

We also went to a coffee morning at the hospice in Telford. I felt really disheartened there, because although the cake, coffee and the people were nice, I felt as if I had walked into an Old People’s Home, and that it was of no positive benefit to me at the time. I spoke with one of the lovely healthcare assistants about it, and she advised I tried the Shrewsbury one.

We attended the chemo day centre on a bit of high, knowing that this was the last time for a while. However, the nurse said, ‘Unfortunately we need to do another blood test as your results are too low to give you the chemotherapy.’ My heart sank and she obviously picked up on this. She tried her best to reassure me. It took a few attempts to cannulate and they toyed with the idea of putting a pic line in (a cannula that remains in situ), but decided against it as it was my last cycle.

We waited for the blood results to come back. I was unable to have Chemo as my WCC (White Cell Count) was 2.3 and needed to be at least 3.8, and my neutrophils were 0.9 and needed to be at least 2.0. I had to be extra careful not to pick up any infection, and I had to monitor my temperature more closely as this would put me at risk of sepsis. They also booked me in for two units of blood as my HB had dropped; this explained why after swimming I had been very breathless and dizzy. Although really pissed off, I accepted that it was just a small delay, and I tried to keep smiling through.

I had my blood transfusion and felt quite a bit better afterwards.

We filled our time with a busy week, taking the little one on the steam train, going to a cider festival, and to the airfield near Auntie Pat’s, I had many a chat with Uncle Jim as we had cancer and chemo in common. I managed to keep my mind occupied because of the week ahead.

I was booked in on the Monday for my blood test and hopefully my last cycle of chemo. Kelly (Chaz’s step-mum) kept me company, whilst I waited for the results – which unfortunately were crap again. My WCC was 2.2 and my neutrophils were 0.5.

The Nurse asked the sister if I could have some GCSF (an injection that would bring my WCC up), but she said they would not do this until my neuts dropped to 0.1.  All this made me so fed up, but I just had to accept that this was the way it was. I left the hospital feeling really disappointed, and was booked back in for the next week.

We also went back to counselling that week. The session went well, but one of the things that stuck in my head was being told how lucky I was that Wes had ‘stuck around’. Apparently, statistics showed that a lot of couples split up when one of them was fighting cancer. But to ‘go our own ways’ was never a thought that had entered either of our heads; we love each other, and it was as simple as that. After the appointment I went to the chemo day centre to chat to one of the sisters in the department, as they had some worries over my bloods.

She spent time with me and listened to my concerns, which were as follows; that they were waiting for my bloods to be at a level for them to give me chemo, and that once my bloods reached this level I would be at the lowest recommended safety level to receive chemo… This concerned me, as I felt the chemo would then just drop my bloods back to that lower level, and I would then be in danger of getting an infection and my body would find that hard to fight. As a nurse, I also was fully aware of how a simple infection could kill me. The Sister took my concerns (and a copy of my blood results to date) to discuss with the consultant. He asked the Sister to give me a shot of GCSF to bring my WCC up. I felt satisfied with this, although a little bit annoyed as this was what the Staff Nurse had suggested on the first day my bloods were low, but I had not fitted the protocol as my bloods were (even though low) too high to receive a dose of GCSF without a fight.  

We spent the time between Bloods and Chemo having more fun and creating more memories – taking the little one on adventures, spending evenings chatting with Chaz (who always manages to put a smile on your face), and going to Anfield to watch Liverpool play. It was an extremely emotional evening, as it gave me goosebumps and made me cry when the whole stadium sang, ‘You’ll Never Walk Alone.’ Dealing with my cancer was a bit like being an avid football fan, with emotions alternating from low to high over the season.

We decided to look for a new home as we needed more space and so we could be a little bit nearer Wes’ little boy. We had seen a couple of houses that we liked, and one that was definitely a favourite. We arranged to go and view three of them. I wore my wig for the second time since I had lost my hair, as I did not want the estate agent to know I had cancer in case they then thought we were not suitable tenants – a stupid feeling, I know, but I could not help the way my mind was working at that time. We loved the very first house we went to see, so we had coffee locally and filled out the required application forms to be considered for the house.

We were due to go in a few days to Wes’ parents in Spain; on the farm it was ‘apricot picking time.’ The day before we were due to leave, we had a phone call to say that we had been accepted for the house. This was just perfect timing – exciting times ahead!

In Spain, we worked hard picking apricots. I absolutely thoroughly enjoyed it all, and for a few days was able to forget that I had cancer. In my mind I told myself the pain and the fatigue were due to working hard, and not to cancer! We also had a well-deserved afternoon at the seaside; the sun was beating down and I was able to allow myself to get lost in my mind.

After our short but much needed break, we headed back home. This was a place I just did not want to be as it meant a return back to reality… The bonus was seeing both Chaz and also Wes’ little boy. I cried the night before chemo; I just did not want to cope again with the joint pain, sickness, pure fatigue and the soreness in my veins after the chemo had been administered. Because I had had that break and was feeling a little bit better, I just didn’t want to have the next dose. I guess a big part was that I knew what was coming, whereas when I had my first chemo, it was very much the unknown.

Off we went for our fourth session. They had to try several times to put the cannula in, as my veins were collapsing – another pleasant side effect. We passed the time playing chess and chatting with staff.

The first days after chemo were not too bad, and we busied ourselves packing up the house that Chaz and myself had been in for nineteen years. There were so many memories, but I could not wait to share a new home with Wes, Chaz and his little one. We moved into our new place over the course of three days, with a trip to Ikea for meatballs! We worked really hard to turn the house into a ‘home,’ and also to sort the garden out. I was exhausted but so happy.

I attended a course for cancer patients called, ‘Look good, Feel good.’ This was all about learning how to use makeup when you felt shit and had lost your hair. For those of you who don’t know me, I am not a ‘make-up kind of girl.’ I dreaded going and sitting with other people that had the traits of a cancer patient – no hair, no eyebrows, and the headscarf, as it makes it all the more real. It actually ended up being a fun afternoon, and I was given loads of free goodies, and then it was home for tea with Nan and Wes’ little one.

My sister was really struggling to come to terms with what was happening to me, and she often rang me, and was very tearful on the phone. She was finding it all

extremely difficult to deal with.

The following day Mum came over to help me with sorting out the garden, and Wes power-washed the patio.

At one point, as I looked over to him and he smiled at me, I began to cry uncontrollably. I felt this overwhelming sadness; I did not know how long I would share our new home, my eyelashes had fallen out and I felt so ugly I didn’t even look like me in the mirror… It was just such a difficult day, I fucking hated this disease!! Mum and Wes took turns in holding me. I knew it upset them both seeing me like this, as I had always tried to stay positive and strong. Charlotte very kindly came around the next day and gave me a lesson in putting on false eyelashes. She was very patient.

I worried so much about Wes and Chaz if the worst were to happen, as neither of them were good at talking about the situation, especially to me. I was reassured however that Chaz spoke to Kelly, his Dad, Wes and the girls from work. I was very conscious of including Wes’ family, as I know that they are his main support network and a very close, caring family. Wes and I agreed to put our names down for counselling to help us through this difficult stage, and to make sure we were supporting each other as best as we could.

We were due to meet friends from work; I didn’t feel my best and was vomiting in the hedge. Wes asked if I wanted to cancel, but instead I took a bowl in the car. I was not going to allow this cancer to win. I’d already had to miss out on too many events, including my cousin’s wedding.

I was given an appointment to see the consultant as he wanted to discuss the CT results in further detail with me. He could no longer see the tumour on the lining of the stomach, and the tumour on the intestinal wall had shrunk slightly. I did have a small growth on the spleen that he believed to be cancerous, a cyst on the liver he believed was benign, and all the cancer in pelvis was contained to that area. The chemo was apparently working…

We then discussed the plan. It would be to have two more chemo sessions, followed by a PET scan – but only once my body was six weeks clear of chemo, in order not to have any false negatives. I felt pleased with this appointment as it was mainly positive news.

The following day we went out for lunch with friends, and I received a phone call from my GP surgery. The doctor asked for my permission to refer me to the Palliative Community Team. I was so confused as yesterday I had been told chemo was working. I agreed anyway, and when I came off the phone I got myself upset. After talking it through with Wes and my friends, I rang the doctor’s back and told them of my confusion. They told me the referral was for ‘symptom control.’ That made more sense.

We had a visit from our boss, as Wes was due to return to work, and my Dad and Karen came to see us too. I left Wes chatting with the boss, and I went outside with Dad and Karen. It was lovely to catch up with them, just as it was with our boss. As she left, she said to Dad and Karen, “See you soon!” I said straightaway, “I hope not, because if you see them soon that will be at my funeral!!”

The day of the charity ball. I travelled about an hour away to see if I could swap my wig because I had never worn it. I had a consultation, and the assistant asked me if I had cut the wig, to which I replied, ‘No.’ She then went to get another wig in the same style to see if I had actually cut it… I felt so cross. I was already emotional and going through a tough time; she might as well have straight out called me a liar. Even when she realised that the other one was the same, she didn’t think it worthy of an apology. But she did find me a wig I was happier with. We went for a pub lunch and a play in the park on the way back, and then I slept in the car going home.

I got ready for the ball that evening. I was really nervous that people would not turn up, and I felt very conscious of the way I looked, even though I’d had plenty of reassurance.

I need not have worried. More than one hundred friends and family turned up. Friends travelled from as far away as Newcastle, and from loads of different chapters of my life. I felt overwhelmed. Alison had made cakes, Stacey and Alina continued to sell raffle tickets that night, and many of my friends had donated gifts. We raised £3151.50 on the night, and also (unbeknown to me) my friends from school had secretly made a ‘Just Giving’ page. This had raised over £500. In the morning we delivered the money to the Lingen Davies Centre and they were thrilled.

After we dropped the money off, we headed for Cornwall and rang my parents and their partners, and Wes’ parents, to tell them how much money we had raised. They were all really proud of us. We had a lovely journey down there, stopping at the ‘Farm Shop’ Gloucester services, which in our opinion is one of the best.

We stayed with friends of ours in Cornwall for a few days. We had trips to the coast, some beautiful meals, visited a food festival and had some lovely ‘heart to heart’ catch-ups.

Back from Cornwall, and ready to face Chemo Number Three. Another long day in the centre.

The first few days afterwards were not too bad, and I kept a brave face as ‘the boys’ were heading off to Rome to watch the football. Mum wanted me to go and stay with her, but I wanted to be in my home. I promised her I would ring if I needed anyone – and, to be honest, I was totally shattered and I just needed to sleep through the joint pain, if at all possible! I had tried every herbal tablet going for flushes, and none of them seemed to make much difference.

Whilst the boys were away, I had a lot of ‘thinking time.’ I was finding the hot flushes from the chemo – and the lack of sleep – way too much. I made a GP appointment. It was a lady doctor. I actually broke down in her room; there was nothing she could give me for the hot flushes because I had cancer. I spoke about how unfair I felt this all was, and that I did not know if I could face any more chemo, and how I was going to tell Wes, Chaz and the rest of my family if I made this decision, but I had never felt so shit! I did not see the point of feeling like this if it was just to buy me a small amount of time (yet another question that nobody could answer). I wanted to scream and smash things, I felt so angry with the world. The doctor held my hand and simply listened. I felt better for the offload, as I tried to stay so strong for those around me. I

later sent an email to the surgery to thank her for her compassion and time.

I continued to be constipated, and the joint pain was horrendous. This was a very dark time. My stomach was distended, so I rang the Chemo day centre and spoke to my named nurse. She advised me to ring the Oncology Line. I spoke to them, and they organised for me to have a telephone call from the Acute Oncology Nurse the next morning.

As promised, she called me, and arranged for us to meet on the unit. I was examined, and she talked about the possibility of ascites, and explained that if this was the case, I would need a bed and a drain. I told her I wasn’t sure if I wanted to continue with treatment because I felt so shit, and if my life was going to be cut short, I wanted to enjoy it and not feel so crap. She spent ages with Wes and I, explaining a lot that we had either not understood or not been informed about. She talked about diet in so much detail, talked about holistic as well as medical approaches, and told me about a meditation CD called, ‘The Secret Garden’ (this helped me relax loads). She also explained how chemo changes the shape of your eyes, which was another concern I had, as sometimes I had not been able to see well at all. We felt we were treated as individuals, and she made me feel more positive about the situation I was in. She told us she would get us a scan and my results before my next treatment. Back home, I sent an email to comment on her fantastic care and the knowledge that she had shared with us.

A few days passed. I had heard nothing, so I phoned to chase up the CT scan. The original nurse was on holiday, so I spoke with another nurse. She was helpful, but that was only eventually… At the start she was really rude, and told me that a CT did not just happen overnight. This comment had made me feel that I was being a ‘demanding patient’, when all I was doing was chasing up what I had been promised. It wasn’t long before I had cried down the phone because of how she was making me feel, and her attitude seemed to change when she realised that I was upset. Nevertheless, I found her initial approach shocking. Being a nurse myself, even on my busiest days I would never have spoken to or treated a patient in this manner. She was also a specialist nurse in an area that I believe requires empathy and compassion above everything else.

I had my CT, and the original nurse called me back with the results. She told me that the chemotherapy was working as it should be, and that she wanted me to seriously think about carrying on with treatment. I told her I would, but I was going to take a break to recover physically and mentally before starting again.

The next day the secretary called me to make an appointment with the consultant for my results. I told her that I had them. She seemed to think I had requested these results. There was obviously a communication issue; sadly, I did feel that this sort of thing happened on a regular basis during my treatment.

So I told my family and friends that I was going to have a break from chemo. They all seemed to understand my reasoning for this. I was just too exhausted mentally and physically to continue. I was suffering with what is called ‘chemo brain’; my memory was awful, and I would repeat myself loads and could not remember the simplest of things. We did laugh at times about this, but in all honesty, it was a frightening time,

and I can only think that this must be how it feels with Early Onset Dementia.

I was told by Sarah that I was probably entitled to get a payment from the government called ‘PIP’ (Personal Independence Payment) This was a very difficult payment to apply for, as it required the doctor to fill in a form where they expected your life expectancy to be six months or less. On collecting this form, I sobbed and became very angry, asking that common question that no one can really answer, “Why me?”

I had arranged to go and meet Sarah and her fella that weekend for a BBQ, but I spotted an opportunity online to stay in a shepherd’s hut, in the middle of nowhere at a price not to be missed. Sarah, being a cancer patient herself, was totally understanding of me cancelling and ‘going off to make memories.’ We loaded up the car and drove to Powys to ‘the hut in the middle of nowhere.’ It was beautiful weather and an equally beautiful spot.

I continued to be in pain from the constipation and in my joints, but I was determined to have a fun and relaxing weekend away. The hut had an outside kitchen, shower, fire pit and hammock – it was just amazing. We enjoyed the evening, cooking food on the fire pit and playing board games, and Wes taught me how to play chess.

On the Sunday morning I woke with an agonising stomach ache. I took myself to the bathroom and the only way I can explain the pain of opening my bowels was like childbirth but without the joy of a baby – just a poo. To give you some idea of the circumference, it was that of a can of pop and it was certainly not flushable… At the time it wasn’t funny but as I sit at my desk writing this, I am honestly laughing. We had to get a stick to break it down…. My friend Cheryl and I often share ‘poo stories’, because almost every medication I was taking had the side effect of constipation. One thing was for certain, I certainly felt better afterwards, and at least two stone lighter.