Husband having op for Chondrosarcoma

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Hi All,

I am quite new to the boards, but have read some stories, so thought would add ours. Husband has been diagnosed with Chondrosarcoma. The tumour has grown from a rib probably, but is now near the spine, so quite large.

He has had one unsuccessful surgery to remove the tumour at Southampton, and 6 weeks of proton beam therapy in Manchester, 

We live in Dorset but head up to Oxford today ahead of his surgery at the John Radcliffe tomorrow. The op is expected to take 2 days this week, with possibly another day next week. Quite a lot of boney structures need to be removed to allow access for removal of the tumour, then reconstruction afterwards. The tumour is large and in an awkward place, and will cause big problems soon if not removed, so not much choice for husband but to go ahead with the op. He is likely to be in hospital at least a month, and recovery time is expected to be a year.

But he is only 48 so we just need to get through the operation and the recovery, and then get on with the rest of our lives. Our kids are 11,14 and 20, so just starting to get some freedom back as they become more independent, and we plan on making the most of that in the years to come. 

 So, just wanted to say hi, and hopefully I will be back soon, reporting that the op went well, and we are on the road to recovery.  Sending best wishes to all living with this in their lives.

Vicky

  • Hi Vicky and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    Thanks very much for taking the time to write about your husband's diagnosis and treatment and I hope that his operations go well.

    When you have a minute it would be great if you could pop something about your husband's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi, 

    Just thought I'd check in on how things are going for your husband and how you are all coping as it can be so difficult for the whole family and friends. 

  • HI Dave,

    Thanks for checking in. 

    A bit mixed to be honest. The op went well in terms of removal of the chondrosarcoma, the spinal surgeons are happy with what they achieved, which was removal of the tumour, which was 10cm+, with clear margins.

    The op took 2 days as planned. However, Kev (me husband) was very poorly at the end of the first day, so instead of waking up and spending a week in hospital before the second day of surgery, he was kept in ICU for the duration, sedated and intubated.  A really worrying time, as he was so poorly there was a question over whether he was stable enough for them to be able to complete the operation or not,. But they did, so the tumour is out!

    In terms of recovery it is slow, as we expected. Lots of pain, waiting to see the chronic pain management team, and lots of work to rehab Kev. He had large wedges cut our of a number of vertebrae, and 2 ribs removed, and is held together with 13 screws and 2 carbon rods. One of the rods is too long, so we go back to Oxford in 2 weeks for an op to shorten one of those, as Kev can currently feel the end of the rod through his skin, and so cannot lie flat yet.

    Once this small op has been done and recovered from, it will then be back to Christies in Manchester for some more (3 weeks) proton beam therapy. Then fingers crossed the all clear! 

    The operation has had huge impacts physically as fully expected, and surgeons say recovery due to the size of the op will take 18 months ish.

    The period in ICU has had some unexpected side effects: lack of appetite, overall body weakness, muscle wastage, cognitive and psychological effects which Kev is working through.

    Despite all this he says he is glad he went ahead with the surgery, and is looking forward, over time, to making a recovery to a point we can pick up our lives again, albeit I suspect in a different way to before. 

    I am so grateful to all the medical staff who looked after, and continue to look after Kev, they were amazing., As you say it has an impact on friends and family (and finances!) this whole journey, but we are getting there slowly, that has become our motto! 

    Vicky

  • Reading that it is just astounding what the surgeons can do and how far they will go to help us 

    That week you spent while he was sedated must have been awful for you all as I'm sure all you wanted was for it to be over and get onto the next stage, hopefully all goes a little smoother now and his next opp is a lot easier. 

    As you also commented finance's can take a battering and is a big worry that you put to the back of your thoughts, I hope you've explored the gov.uk site and have looked into PIP which can be a help, a bit of a minefield but worth it, I'd never claimed anything in my life but like people told me after everything I'd been through we deserve a little help. 

    Tell kev, I can only imagine what pain he's going through, I know what it was like for me and it will get easier as time passes, wish him all the very best for the next stages of his treatment and that it all goes well, also make sure you take a little time out for yourself to relax and recharge as its so draining, keep talking to family and friends and don't be afraid to ask for help. 

    Wishing you, kev and your family all the very best 

    Dave 

  • Thank you Dave, 

    All the best to you too.