Cancer stage 4 – Coming out and sorry I lied

Since Monday 6th July I have been lying to you all and I’m so sorry. My posts have had to be full of anything but what’s been really happening in my life, let me explain. This post is going to be a long one so get yourself a drink……..

On Monday the plan was to go to the vets and then go into Wycombe to work. Vets done I’m back at home for 9 am. I think about the charity I had found (Beating Bowel Cancer) on Saturday and decided to call them. I had a lovely chat with the receptionist about the fund raising event I had been too. I talked about my blog and that I wanted to help people. She listened and at the end she asked how I was and did I have any questions about my cancer. I replied as ever that I was fine and yes actually I did have a question. I didn’t understand the lymph node thing, that cancer cells that were in my neck and gut. That Steve and I had both looked this up on line without any success of finding anything other than medical articles from surgeons or oncologists. These were always full of big medical words and were so long we both gave up reading them. Steve and I concluded that as I was on chemo so it didn’t matter and just coping and getting through the treatment was the game we were playing for now. You can find loads of information out about cancer spreading or metastases to other organs but not in the lymph nodes. The receptionist said to hold on and then put me through to Holly.

I repeated my question again, she listened to my story and told me to look at 3 leaflets available online on the website. I was happy that I’d called and thanked her for her time. I opened the first of the leaflets. It was talking about coping with advanced cancer and palliative care. I was really confused now. I texted Steve and asked him to call me when he was on a fag break. He called me and I told him about he call, “no no no Wendy you have got it wrong, you must have explained it wrong or misheard what she said, send me the link to what you are reading.” Steve had to go back to work so I forwarded the link to him. Now I’m really confused so I decided to send an email to the nursing team at the charity so that if it is in writing I can’t get it wrong. Also I didn’t want to trouble them too much, so I sent this email:

Hello,
I spoke to Holly earlier and discussed my case and my concerns, in that my bowel cancer is now in my lymph nodes. Both in my neck and gut. I have read the information leaflets she advised but I am still a little confused and I hope you can help.
The lymph nodes in my neck following a biopsy have been confirmed as bowel cancer. Does this mean that my cancer has metastases?
Is there just cancerous cells in the lymph nodes or is it an actual tumour growing as the nodes are getting bigger?
Does this mean (depending on those answers) that I am now at stage 4?

There is a lot of information on metastases cancers in organs but not about the lymph nodes, it’s all so confusing.
I know that you don’t have access to my medical file and therefore I understand any advice given is general but please can you help me?

Sorry to trouble you again and confused,

Wendy Guy

I pressed send and an automated reply came through that they would respond within 4 days. Then my phone rang, it’s Steve “I’m on my way home” why I asked “because you are right: it’s now stage 4 and I’m not leaving you on your own, I’m on my way”. Whilst Steve was on his way home I received this email from Holly.

Hello Wendy.

It was good to speak to you earlier, I hope you have had time to look at the links I advised and take some time to digest all the information found within them. There is a lot to take on board.

Cancer that has spread to other areas of the body is often known as Stage 3 or 4. Nearby lymph nodes to the bowel would be described as Stage 3 definitely but I think as the lymph nodes in your neck are some distance away you will need to discuss this in further detail with your consultant to be accurately staged. Staging in done using a combinations of things, such as scans and blood results to help build up a picture disease progression.

Here is a little more information on this type of spread. It talks about secondaries in the lymph nodes and metastases.

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphnodessecondary/Secondarycancerlymphnodes.aspx

At this point I would suggest (with the information you have given us) that this swelling indicates cancer cells are present in the lymph nodes, causing the inflammation and swelling, but questions about cancer growing in the lymph nodes are best placed with your consultant, as only he/she would have access to this information, from related scans.

I hope the link above answers some of your other questions.

Best wishes,

Many kind regards
Holly Rolfe

I had been texting Karen whilst this was going on as she was due to see Dr Weaver today. I told her that I had just discovered I’m stage 4 and her reply was ‘Oh fuck, do you want me to call?’ I called her as my head was all over the place. We had a brief chat, thanks for being there my chemo bud. I texted Mary at High  Wycombe who thought I was going into the store today to say I wouldn’t be in and I waited for Steve to come home.

Steve had read the leaflet and also followed the link. He said that stage 4 had two stages, stage 4a and 4b. there are no more stages to cancer. What the bloody hell did all this mean? Has the chance of remission been taken away from me? My head was all over the place and more importantly ‘oh my god my poor mom, she is on holiday and when she returns I have to break her heart again.’ Richard has just flown to Canada, how am I going to tell him?

The post on that Monday was all true apart from the above was all left out. On Tuesday again I did go into Staines, all true but when I mentioned the text from Alison, I cried because I knew she was telling Emma and Linda. I did go to lunch with Leanne but again I had to tell her the truth. We sat and cried over lunch and Leanne gave me a big hug. I also had to call my best mate and tell her as I was unable to the previous night due to Ian coming round. Nicky already knew as she had spoken to her cancer nurse mate Mandy but didn’t know how or when to tell me. My walk with Rebecca and Molly on Monday was when I had to tell Rebecca, my poor daughter.

I messaged Dawn, Lauren’s mom on the Tuesday morning but Lauren saw it and thought I was going to talk about girlie stuff we had shared and she was upset with me. Poor Dawn had to sit Lauren and Chris down that night and tell them, thanks Dawn for doing this for me, for them. My mom calls from her holiday every morning and evening. I had to pretend everything was fine knowing that it wasn’t, sorry mom.

So we decided the best course of action was to call Dr Weaver. I just needed the answers to my questions. I called him at 9.10 on Tuesday morning, I was told he would call me back but he didn’t.

This morning at 9 o’clock on the dot I phone Dr Weaver. His secretary says that he did try to phone me yesterday but the land line just rang out but she would put me straight through. I had already prepared a list of questions this time so armed with my list and a pen, I went through the following list:

1 – Am I now at stage 4?  – Two scales are used to grade cancer and yes if you use the simple scale of 1-4, I’m now at stage 4

2 – Are the swollen lymph nodes in my neck just full of cancer cells or is it actually a tumour? – Yes and also there are tumours on my front and back of my abdominal wall plus broken through the perennial wall ( I don’t know what this is)

3 – Like my bowel cancer broke through the bowel wall, will the lymph nodes get so big that they will burst? – No

4 – Has this effected my prognosis? – Yes it’s reduced due to the spreading. I wasn’t ready to ask the question of how long I had got left.

5 – Is the pain in my tummy due to cancer, bowel surgery or chemo? Probably chemo.

I thanked Dr Weaver for his time and ended the call. Steve and I chatted over a coffee and a fag for about 1/2 hour. I cleared away the breakfast things, swept and mopped the floor. Steve said that I should go into work as there was no point in me sitting here all day with it going around my mind. I called Louise to help me out with how to contact Richard. I got changed and after another fag together I went to work. I think that Steve just wanted me out of the way, maybe he needed to be alone. I have been asking him for weeks to consider writing something for my blog and out of the blue he said “maybe it’s time I wrote a post for you about how this shit feels.” Wow, okay so no promises but he may just appear on here as he has all my log in details, well he set it up for me after all, my Mr Wonderful.

At work, thankfully Mary was there as it would have been awful without her, thanks Mary. I type a text to those who knew what was going on, Leanne, chemo bud Karen, Nicky, Dawn, Emma and Alison. I copied and pasted the message and hit send as I had promised them that I’d tell them as soon as I knew anything. I am so sorry to you all as I never thought about where you would be when you got my text, I just knew that I had to tell you all. I couldn’t break that promise, your hearts yes, but not my promise to you. At work and Guy (my boss) calls me, he was in Kingston when I sent the text into Emma. I talked him through what I found out 4 hours earlier, he was lovely and said that he just wanted to give me a hug. That started the tears, sorry Guy again, I always seem to cry on you.

Earlier I had sent Richard a message to contact me urgently, whilst on the phone to Leanne, Richard’s call came in. Yet again I had to tell my son bad news over the phone, this time however he wasn’t a few hours drive away he was a 10 hour flight away in Canada. He listened and told me to contact Parker to get the welfare number to call them. Thanks for your help today Parker. The Army are flying Richard back from Canada tomorrow.

As all this is going on my thoughts continually go back to my poor mom, returning from her holiday with no idea of the phone call I’m going to have to have with her. My poor mom, I think she has been through enough, I worry about that call tonight.

So that was my day in the wonderful world of cancer, how was yours? Lol. I told Leanne that at least I still had my health, she laughed as normal and said that I needed to change my usual saying to at least I’ve still got my sense of humour, now I laughed.

So if you are reading this then I’ve told my mom. Just like my first ever post on Facebook where I announced that I had cancer, it’s not about me, it never has been. If you know my children, my mom or my husband please help them through this journey with me. We are only alone if no one asks how we are, offers a friendly ear or a shoulder to cry on. They are my world and I love them with all my heart. I can’t cope with their pain and suffering so I need you all to help me, to help them to feel loved.