Here it Is

OK OK, I know it’s been a while. I’m up at stupid o’clock to write this. It’s not the lack of things to write about, my mind has been working overtime in that department, it’s the lack of will to write at all. I’ve no idea what’s been stopping me, but far too many times I’ve looked at the laptop and turned away in another direction. It’s part lethargy and part fear. As the last dregs of chemotherapy work it’s way through my body I’m beginning to sense a return to some sort or normality. Maybe that’s what I fear, a return to normality. It seems such a long time ago since chemo began, half way through June, and here we are 4 months later and we’re now entering a period of post chemo, it’s over 2 weeks since my last chemo pump was disconnected and my body should start to clean up, although I was told last week that the effects of chemo should continue for some time, and that’s how we’ve reached this new period of uncertainty and a little apprehension on my part.

A lot has happened in the past few weeks, I’ve not been sitting around. My diary has been full of appointments, and even the odd social occasion. I’ve seen the bowel surgeon, the liver surgeon, the dental surgeon. I’ve had my flu jab, my pneumonia jab, and my line still requires flushing even though it’s redundant, for the time being. I saw Mr. S for my six month post surgery check up. No examination, just a chat about how things have been since we last met, a few weeks after surgery. Things have obviously improved as I recovered from surgery, but I still have concerns over the effects of surgery and the elusive ‘hot spot’ that was previously identified in my upper colon. It was first identified in a PET scan, looked for via a colonoscopy and a thorough search during surgery. The latest scans still don’t show any abnormalities, yet I’m still concerned that there could be something inside me, waiting to get to work on my cells. I’ll continue to have regular scans to monitor the situation, but for the time being, “What’s a hot spot got ?” Not a lot apparently. Mr. S reminded me how lucky I am that he was able to remove the cancer in my bowel, in an almost apologetic way he explained how difficult the surgery had been, and how close he was to just removing what he could and sewing me up again leaving the remains of the cancer in situ. I’m glad he persevered. We discussed the imminent liver surgery, Mr. S’s voice descending to a sympathetic and concerning depth. In effect, The Christie are handing me over now, not knowing how I will return after liver surgery.

The meeting with Mr L (liver surgeon) was very informative. As the detail  of information became clearer, so did the level of concern. I saw the scans for the first time, and he pointed out the position of the tumours as we discussed each stage of the surgery and the risks involved at every level. 4 tumours on the right side which will necessitate the removal of the entire right side, I’ll be losing over two thirds of my liver. The single tumour on my left side will be re-sected, hopefully removed in it’s entirety. The liver will re-generate, the right side will be replaced with a new liver, in as little as 4 weeks to be able to work and eight weeks to revert to it’s original volume, if not it’s original shape. What an amazing organ ! However, the risk of liver failure at almost any stage of the operation and recovery period is high. Mr L made this perfectly clear to me, many times. There are other complications that may arise, each of which could be life threatening on their own and I was left in no doubt as to the risks involved in agreeing to surgery. The alternative of doing nothing makes surgery a no brainer. I want rid of these tumours. I still don’t have a date, other than it will be in November. The thoracic surgeon has still not responded. How difficult can it be to view a scan that’s instantly available on his PC? Debbie, the specialist nurse will be chasing him up so we can set a date, that is of course as long as he agrees to surgery proceeding. Mr L also wants me to be free of Avastin ( the monoclonal antibody) for at least 8 weeks before he will operate. He would prefer 10 weeks. The longer the better in his eyes, it poses a risk of complications during and after surgery. I’ve been off 4 weeks already. Mr L left Debbie to discuss all the other issues with me. Intensive care, recovery, physiotherapy and all the other details involved in preparing for and recovering from major surgery.  Debbie thinks she can get me in for surgery sooner rather than later, she’ll be doing all the chasing up and booking appointments and arranging dates. I’ve already received the pre-op appointment for next Tuesday, which at least shows things are moving.

The maxillofacial surgeon (dentist to you & me) was understanding and sweet. She thinks she can save one of the two teeth causing me problems, but not yet ! My white blood cell count is still too low and the risk of infection still too high. We’ll wait another two weeks and check blood count again, if OK she’ll proceed and rip the bugger out. It’s not going to take long, it’s barely held in place now. This, combined with a mouth full of ulcers and sores has been making life pretty miserable. The two hourly mouth washes makes it just about bearable, numbing my mouth to remove all sensation of pain, but leaving no sense of taste. Not such a loss when everything tastes of complete blandness anyway. I’m glad to say the ulcers are receding and I think things are getting better now I’m off chemo.

There, I’ve done it. I’ve reached my target word count already. This is why I didn’t want to wrote this blog. It’s just a medical update. As with almost every other area of my life, cancer has taken over. I’ll update the social side in a couple of days, see if I can find some humour in my life.

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11 Responses to Here it Is

  1. niece nikki says:

    Love you xx

  2. Sandy L says:

    Just praying that all goes well for you. I have just been informed after PET Scan that it might not be “beneficial to me” for them to operate as it has now spread to my adrenal gland as well as lung and ack to my bowel. I don’t knowwhat the next step is, they even asked me what I wanted to do, but I need to know my options before making any decision. Best of luck to you and I do so look forward to reading your blogs. Best wishes, Sandy L.

  3. Oh Sandy, thank you so much. Really sorry to hear your PET results were not more positive. I’m dreading being told my lung mets are inoperable, which would scupper the liver op also. Thinking of you, please keep me up to date on your treatment

    xxx

  4. Rob Meakin says:

    Hi, Stick with it and stay positive. What you’re going through sounds very familiar. I was diagnosed in Feb, started 4 courses of chemo in Mar – Oxaliplatin, Capecitabine & Avastin. Had to wait 10 weeks after before liver surgery. Had 6 mets (and 75% of my liver) removed on 19/07 @ St James’ in Leeds. Then 1/4 of my large bowel removed on 04/09.
    I’ve now just restarted chemo to “mop-up” and my CEA tumour marker’s dropped from 167 back in Feb to “less than one” yesterday.
    Keep fighting and never give up. Although they told me that the liver op was the worst, that wasn’t my experience! I was in Jimmy’s for 13 days but as I was drugged up in HDU for 6 of these and didn’t know what day it was it only seemed like a week! It took 11 days after my bowel op for it to start working well enough for me to leave and I was fully conscious for all of these.
    There is a light at the end of the tunnel!
    Good luck
    Rob Meakin

    • Hi Rob
      thanks for your comments. I had chemo & radiotherapy prior to surgery to downsize the tumour, before surgery in April 12. I was due to have liver surgery at the same time but this plan changed when I had a blocked bowel in March 12. After bowel surgery ( pretty much the same, 5 days in intensive care of which I remember little, followed by a further week on step down unit before discharge. I then started chemo, 5FU, Oxaliplatin and Avastin in an effort to reduce tumours in liver & lung. I’m now in the 10 week waiting period after Avastin before liver surgery. I went for my pre op today.

      I hope your recovery is going well 🙂

  5. Rob Meakin says:

    Feeling pretty crappy at the moment. Had my chemo on Monday and finding it difficult to drink anything and keep it down. Anti-sickness tabs not working too well this time and very little sympathy from the wife! Understandable though as she’s going through it too. She was diagnosed with breast cancer in June! Following a mastectomy she’s now on her “mop-up” course. We’ve both got 3 left each.
    Proper pair aren’t we?

    • That’s just not fair Rob. Hugs for you both. I live on my own, and whilst others worry about me, I feel I’m in the envious position of not having to think about anyone else whilst I’m dealing with this. I can just get on with feeling crap. I’m resigned to the fact that I’ve got at least 2 more courses of chemo to come, after forthcoming liver surgery, and then lung op. I know it’s going to get progressively worse, but hey ho………onwards we go

      • Rob Meakin says:

        Hi,
        Long time no speak. Just read your latest blog post, glad to see that they’re moving forward with your treatment and fingers crossed for you.
        Lisa, my wife, has now finished all her chemo etc and just has 5 years of tamoxifen tablet to go!
        In January I was sent for a CT as my tumour marker had risen. Double bad news! Not only was my cancer back and chemo resistant but I also had a blood clot on my right lung! Bummer!
        Chemo was stopped immediately and I now have to inject daily with enoxaparin to thin my blood.
        They’ve referred me to Christies, which I see you’re familiar with, under Miss Sarah O’Dwyer. My tumour is a colorectal peritoneal metasticies which will involve more surgery and chemo if its just in my abdomen. Got a PET scan tomorrow to see if its anywhere else. Hopefully it’s not and they can do something with me!
        Good luck with your ops.
        Oh and by the way, I can’t every remember school closing! I can even remember the teacher bringing in the school milk which had frozen solid and burst out the top of the bottles, putting it next to a heater to thaw it out!
        Cheers
        Rob

        Sent from my iPad

  6. Wow Rob, good to hear from you, shame it’s not with good news though. Are you having your PET at The Christie tomorrow ? As it happens I am there first thing tomorrow to see Onc for results of latest CT scan. Would have been good to meet up, but unfortunately I then have an appt with liver surgeon on the other side of Manchester just 2 hours later. As you may have seen I had liver resection just before Xmas, and I’m having lung resection on 14 Feb. Busy times.

    Sarah O’Dwyer is a top top surgeon and she heads the peritoneal team at The Christie, the same team that dealt with my primary tumour. You are in good hands, they really are the best in the UK and you couldn’t be in a better place. Wishing you all the best, and Lisa too xxx

    PS: yes I remember the milk popping out of the top too 🙂

    • Rob Meakin says:

      I’m not at the Christie, they couldn’t fit me in until early March but my Goddess of a specialist nurse down here in Mansfiled has managed to get me a scan organised in two days!!
      She really is the best. I’m having it at Nottingham City Hospital tomorrow afternoon.
      Needed it this week as Lisa, myself and our youngest (Cameron) are off to The Hilton @ Marsa Alam in Egypt on Tues for two weeks. Yes, even with a blood clot you can fly!! I wasn’t cancelling it for anything, we both need a break.
      Make sure they don’t go for your heart instead of your lungs on valentines day won’t you!
      Cheers
      Rob

      Sent from my iPad

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