A Minor Set Back

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A Minor Set Back

Its been a while since my last post as I have been keeping busy, and I’ve also had an eventful couple of weeks….I think I start every post off with that line. I didn’t want to post anything until I had my results which I got yesterday. It definitely was not the news I wanted. The tumours on my lungs, liver and pancreas have started to grow again. I didn’t know what to say. I was so angry about it after all I have been doing and everything has been looking up. However I’m used to this by now and got over it pretty fast. Its just a minor set back. There is no point holding onto negative emotions, that won’t help, so onwards and upwards. Im starting a new course of chemo on Monday which will hopefully get rid of these little fuckers. The Dr told me it should be similar to the last type of chemo, which I tolerated pretty well. Fingers crossed my hair sticks around. Although its a lot thinner than before, it still makes such a difference having hair. The plan is still to have a check up scan after 2 rounds of chemo and keep going until its gone or we need to change the plan of attack. The two drugs I will be having are Topotecan and Cyclophosphamide and they will be administered daily for 5 days, with 2 weeks recovery in between.

Some of you will know how extremely happy I was to get rid of the Hickman line that has been hanging out my chest for the last 20 months. The registrar at southampton hospital that was surgically removing the line was only doing it for the second time. I’m happy to report she did a good job. Its amazing how much better I felt mentally when that was removed. It was a constant annoyance and a visual reminder that anybody would be insecure about. I celebrated a little too hard that weekend and in my excitement I forgot I hadn’t boozed in a very long time so my tolerance was weak. The hangover lingered around for about a week! A day later I spent another day in Southampton hospital having the new Portacath inserted (see images below). As this was a day case I had to be there for 9am and no food from 7am. This was on day 2 of the hangover that was worse than cancer… I can say that 😉 . I didn’t go into the theatre until mid day so I was running on empty and feeling pretty ropey. The procedure involved cutting a pocket in my chest for the port to sit in. Its then sewn in place onto my pec. A line is than attached that runs up over my collar bone and into my jugular, just like the Hickman did, and down to just above my heart. Im starting to tally up so many scars on my chest and shoulders. As the saying goes….chicks dig Hickamn and portacath scars. After the new port was inserted I went back to my room to eat, watch some olympics and eat some more. I then had a CT scan which I wouldn’t get the results from for a very stressful and anxious 9 days later (which was this Thursday). For a week I was getting chest and stomach pains and I don’t know if they were caused from me worrying or the savage hangover but I was assured it wasn’t related to the cancer.

LEFT: Hickman line, RIGHT: Portacath just after insertion.

LEFT: Hickman line, RIGHT: Portacath before stitches were removed.

On the same day that I had my port inserted and the scans done there was also a charity for young people facing cancer meeting up in Southampton. I thought it would be silly not to go and I’m glad I went along. The charity is called Trekstock and they are based in London. They do loads of fundraising events and provide a network for young adults facing cancer. Its perfect as I don’t ever get to talk to anyone else going through this, especially anyone in my age group. So if you’re interested, check them out!

In my last post I mentioned the bone around my prosthetic shoulder had weakened due to the radiotherapy and constant hammering from chemo. My body is trying to heal itself and form new bone, at the same time the chemo is causing cell death. Unfortunately its got a lot worse since that last post. Its now loose, very weak, painful and I can feel my arm clunking around. I need it operated on asap but cant have an operation while I am on chemo as the risk of infection is too high as the chemo decreases my blood cells. The priority is to kill the cancer so the arm will have to wait for now. I saw my surgeon this Tuesday at The RNOH in London. As well as having a shoulder scan they also took a biopsy from the bone to test for any infection. Fingers crossed there is no infection as that would throw a massive spanner in the works. Im not showing any signs but it cant be ignored, especially as my immune system has been suppressed.


Im back seeing my physio again regularly as my shoulder and arm were getting very painful and weak. The whole biomechanics of my shoulder have been drastically changed due to the nature of the prosthetic and because they removed some muscles. Its tender just to touch in some areas and my shoulder blade has moved a lot, so I am trying to rectify this issue with a lot of rehab.

I want to use this opportunity to thank everyone for the ongoing support. Its been fantastic and very humbling to know so many people are rooting for me. Also I want to thank the great company I work for, H&R Healthcare. They have been truly amazing and so kind over this past 20 months. Now and again Ill speak to a friend I haven’t spoken to in ages and everyone always says the same thing; “sorry I haven’t been in touch, I didn’t know what to say”. I don’t blame anyone for that response, but don’t be one of those people! However if you are, I wont love you any less 😉 .

Looking at the positives, I can have this chemo administered with the new port. Im still ecstatic about not having the Hickman hanging out of me. I can finally go swimming and showering is so much better now! So for now I’m going to carry on doing what I have been doing. Apart from the obvious and the odd bad day I feel great and look well so all the hard work must be benefiting me. This is just another hurdle along the way.

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  • Ken Hunter

    Hey Julian thought I hadn’t seen you and your french beauty down the sea front recently now I understand why stay strong bud beat it and I’ll see you on the beach soon Ken and his black pugs

    September 3, 2016 at 9:03 pm Reply
    • Julian

      Hi Ken!

      Been walking around the nothe and the fleet a lot. Both me and Archie are looking forward to the beach opening again! Hope all is well with you mate.

      September 7, 2016 at 6:03 pm Reply
  • Anne Huntley

    I’m full of admiration for you are an inspiration you’ll beat it !

    September 4, 2016 at 4:50 pm Reply
    • Julian

      Thank you Anne! Yes I will!

      September 7, 2016 at 6:04 pm Reply
  • Lynda

    Good to see you and Archie and Will back at the club today

    September 10, 2016 at 7:25 pm Reply
    • Julian

      Thank you! Was great to be back down there. x

      September 28, 2016 at 3:12 pm Reply
  • Don J Whistance

    You liked my birthday cake!

    I’m in the new Bridget Jones’s Baby film so please find time and watch The Don on film…

    Every time we’ve ever met you’ve always called me a ‘legend’ so from one legend to another keeping fighting!!


    September 14, 2016 at 4:00 pm Reply
    • Julian

      The Don! I’ll make sure I see that! Thank you so much, J.

      September 28, 2016 at 3:13 pm Reply
  • Ash

    I think your positivity is class keep getting better

    September 26, 2016 at 7:42 pm Reply
    • Julian

      Thank you ash!

      September 28, 2016 at 3:13 pm Reply
  • Mary scholz

    Hi Julian You are so informative as to what is going on & what will need to be done ,do you take a note book in with you when you’re in with the doctors Haha .
    I know a girl from Weymouth, studying Research Into Edwings Sarcoma @ Plymouth uni ,she’s finding it hard to get information on it ,because it’s so rare .
    Keep up the walking with that dog of yours , @ least you know living in Weymouth you won’t have snow & ice to contend with through the winter ,which is fast approaching .
    I’m going to look for more of your blogs ,so I guess I’ll be back .
    Take care Mary .

    October 7, 2016 at 8:14 pm Reply
  • Mary scholz

    Hey how are you doing ,!!

    October 8, 2016 at 2:51 pm Reply
  • Mary scholz

    I can understand your anger,what a sh.t thing to be going on ,but you will fight back .
    Mary .

    October 8, 2016 at 9:24 pm Reply
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