Living with Bone Cancer

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Hello,

Thought I would take the plunge and join the group.

I have been living with bone cancer now for over two years. It took approximately 6 months to really get to the bottom of what was going on and I was so debilitated it was very difficult to remain positive. I have had lots of ups and downs a real rollercoaster ride of emotions but I have been fortunate to have great support around me a brilliant clinical team a great GP and the Macmillan nurses are absolute angels. I have used the cancer careline on a several occassions and what a brilliant service they provide in times of dyer need, especially when things are going wrong It will be interesting to find out if anyone wants to share their experiences and what they have found works for them.

My daughter always said when we were first informed of this horrible disease. Mum try and see this is as a new journey, there will be struggles and hurdles along the way but try and get some positives from it. You will meet some amazing people and learn so much about yourself try to adapt and listen to your body, when your tired, rest. This will change our lives we will make memories and we will laugh. I did not believe her at the time but she was so right.    

  • Hi and a very warm welcome to the online community

    I wasn't diagnosed with the same type of cancer as you but I know what a difficult thing having a cancer diagnosis can be. It sounds like you and your daughter have a great attitude Slight smile

    When you have a minute it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. 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 miss bee please can you hell.me. I have just read your journey that you are on.  I have bee. In agony since about August last year mainly with my bones. I have just been told I have breast cancer that has gone to my ribs collar bone & spine the pain has been so pain I kept being given painkillers but was not helping.  I have got a bone scan today   but it would be lovely to speak to someone who is on this journey now. And cab hopefully give me some encouraging news. I can't walk my children and partner are fantastic I also have a wheelchair.  My family keep trying to remain positive and  move on with this journey.  I have not been sleeping have been giving a weekly patch and sleeping tablets.  Hope you are getting there all in an see is a black hole things have changed so quick.  Sending positive hugs. Look forward to your reply xx

  • Hi there, I am sorry I have not got back to you before but just recently my husbands friends wife was diagnosed with advanced bone cancer she had undetected breast cancer possibly for a year or more and was due to go for a routine mammogram but to Covid it was delayed. It is scary.

    It took several months before I was diagnosed and it is a roller coaster ride. But when I was first given the news I was in agony extremely tired and would wake up all times in the night. I can only forward my own personal experience. But things compared to what I was like two and a half years ago have improved - pain is under control, I have learnt to live with this disease and except support and not struggle with things that I just can no longer do. I have to pace myself and find hobbies I can do like jigsaws, listening to audio books, I have recently started watercolour painting - which I am still rubbish at but who cares! The first thing I had done was radiotherapy to areas of pain - I did not believe it would work but it did. I fought with medication too as I have never liked taking tablets, I often missed tablets thinking I feel alright at the moment I do not need them so struggled continuously for 6 mths fighting but after talking to my GP she explained "we are trying to get the pain under control, then we will alter it as required try and look at it a week at a time', so I would say just try and have faith in what your clinicians are doing. My Macmillan nurse sat with me and we worked out what tablets to take at what time - find an anti sickness drug that suits you if you need them. My daughter also sent me to a dietitian who was full of advise and it that gave me something I could control - I changed some eating habits and my daughter also gave me a meditation book (something I always thought as hippy rubbish) - I have to say it has changed my life so much.I have never suffered with anxiety but pre scan dates I do so 10 mins a day is worth its weight in gold. But experiment and find something that suits you. I contacted the Maggie centre and they also do relaxation sessions and a whole variety of things coffee mornings etc. If you have not got a Maggie centre near you check them out online. And your Macmillan nurses will be of great support to you and your family, don't be afraid to use the resources available to you. I hope this helps. Good luck, take things a day at a time. Best wishes.     

  • Hello Miss Bee 157

    I do hope you are continuing to get better and managing to retain your sunny disposition.

    This is my first time on here and your posts have really lifted my spirits.

    It's my partner who is undergoing treatment for this horrid disease. He is so frightened of catching the Covid virus that  we virtually live separate lives and only see each other in passing - never without face masks.

    You sound really lovely and so does your daughter. You are lucky to have great support. My partner won't accept any. He's become like a recluse, staying in his room and hardly venturing out unless he needs the loo or to visit the hospital.

    He's just coming to the end of his fourth cycle of chemotherapy. We had thought that the worst was nearly over. Today, he saw the doctor about the next phase: stem cell treatment. It sounds absolutely horrendous and came as a huge shock which neither of us were expecting. Maybe we were too naive not to look into it more deeply.

    He has bone MARROW cancer ... is that the same as bone cancer? Please forgive my ignorance.

    If it IS the same, did you have to undergo stem cell treatment?

    If so, I hope that you managed to cope with it and are now at the stage where you are feeling the benefits of all that pain and suffering.

    I would really appreciate a reply from you to let me know what to expect. I hope this all makes sense.

    In the meantime, take great care and God bless.

    XXX

  • Hi there Penny,

    I have not had stem cell treatment and my cancer is in the bones, it has unfortunately now affected the liver so I have been undergoing further chemo treatment. This is weekly infusions so fingers once again are crossed. I am no expert in the field of cancer but I do not believe bone marrow is the same as my bone cancer. It would be advisable to speak with your oncologist to get a clear definitive diagnosis or ask for a copy of the report your oncologist has sent to your GP and your Macmillan nurse would also be able to advise you.

    I have found over time you look for anything that would help the condition. But stick to the well known websites like Macmillan and the NHS - I never google my condition and advise your friends and family to do the same. If they want to support you then they need to use the correct sites to gather information to support you.

    I must admit I never thought I would improve and thought it was a downhill spiral even though my condition has deteriorated. When I have been off the chemo after a month or so I start to feel huge improvements and feel like a normal person again and back to my old self. How is that possible ? I don't know. The clinical staff and my Macmillan nurse has been nothing but supportive and I feel I can discuss absolutely anything with them. 

    Never forget even when times feel rough and you feel things are not improving quite often they can improve and certainly regarding pain your clinical team can do so much now. I will be honest and would say I was very reluctant to take my medication at the beginning, I was scared and I would suffer as a consequence, my GP said 'Just take a week at a time and if you feel you are not coping come and see me again' she was marvellous and it was crucial in those first few weeks. I took alot of coaxing but now fully understand why I was put on certain medication at that time. I was terrified that once I started taking morphine I would be hooked, but this was to deal with the initial pain I was having and once I had undergone all the relevant tests, had radiotherapy to deal with certain areas of pain in my bones my medication was changed. The pain is well controlled and I know the signs should I need to see my GP about any additional pain or concerns. I could hardly walk at the beginning, I struggled to get out of bed, I could not stand for any length of time, my ribs, back, neck and pelvis were all affected. But now 3 years on I am able to potter around the house, do chores, I bake, and all the general things I enjoyed doing. I am not able to stand for any length of time or run a marathon but I can do far more than I could intially. So I am grateful for having that. I hope that helps. Good luck.

    Best wishes

    Miss Bee