Hello everyone , I really need some advice and help . As you know I've had three operations this year .. Feb removal of ovaries ,

April removal of Fallopian tubes and biopsies , may I ad massive debulking , scraping of diaphragm .. My lungs collapsed and I spent time in critical care . I have ppc stage 3 . Ime just about to have chemo number 6 . Ime at the end of my tether , I don't know which way to turn , I cannot walk any distance due to pain in abdomen ( every muscle in abdomen was cut ) I cannot stand for any time .. Feels like ime going to collapse , ime gaining weight because I can't get around . Ime breathless even doing the slightest things ..the simplest of tasks are beyond me I cannot even Hoover , I've tried to speak to oncologist she just smiles at me and says I've had a traumatic year . Is this normal ? Has anyone else felt like this ? Ime so worried Elaine x

13 Replies

oldestnewest
  • Hi Elaine

    You poor wee thing.

    I had two operations in 5 months in 2010 and they absolutely floored me just as you describe. You have had an extra one, plus the shock of the diagnosis plus chemo. I am only now in 2013 feeling myself most , but by no means all of the time.

    As to whether or not this is normal , well the key thing to establish is whether there is anything related to your disease going on ? So much depends on you and how you were beforehand etc. etc ? Is your GP any good ? You may need to break down the issues into chunks e.g. the pain to start....this can be managed . Do you need help with emotional stuff ?

    Sorry not to be much help.

    Sending you a big hug

    Charlie xxxx

  • Hi Charlie my last scan was good , before this I was active , walked every day, had a busy job sometimes working 40 to 50 hrs a week .. It's so hard to accept that this is how I am now , my muscles feel so weak , almost as if they cannot hold my body up any more ..

  • Hi there Elaine

    I can quite understand how you feel. I've had many abdominal major surgeries since my teens, the latest being five weeks go. I was diagnosed in March 2011 but have had the illness a lot longer than that having been misdiagnosed. I finished chemo in September 2011, but now it's back. The disease is also in my lung. Like Charlie, I think you should ask for pain to be managed. I've done that recently and it's led to an improvement. As regards your mobility, I think your doctor is right in that you've had a lot going on and it takes quite a while for that kind of pain to ebb. However, like you, I find getting about hard and I found that even before this latest resurgence. I found the anger about misdiagnosis (even though I wrote to the hospital saying I thought I had cancer and was dismissed) difficult to deal with and was referred for counselling. I had a lot of sessions of psychotherapy at the hospital which helped me so much because I came to a decision that I either sue for negligence or try to forgive those who were trying to help me but failed to listen. In the end, I took the latter stance and put the anger in a balloon. It resurfaces at times, especially when I visit hospitals but I recognise that for what it is now. One of the main things for me has been dealing with new realities. Once I had got my head round that, I tried to deal with 'What happens now ?' issues. I don't really know the answers but I'm adapting and enjoying life in a different but entirely in my own way. My hope for you is that you continue to heal and improve. Love Tina x x

  • Thankyou for reply Tina .. Ime just so frustrated I sit here thinking right ile do that , when I get up to do it I can't , this feeling of utter fatigue comes from the core of me .. My muscles are weak and wasted .. I feel I will never recover from this battering my body has taken ...:-(

  • Hi Elaine .. I believe you will get stronger. You've been to Hell and back .. and that's the point. I've no idea what you're oncologist has or hasn't been through in life .. (We all have our crosses to bear) but going through what you've been through probably isn't one of the experiences on the list. One of the things I try to do is to take one thing I can manage per day. At first, it was just figuring how to hold the ipad without my tummy hurting. I normally lay it on a pillow which is on my knee. I don't see how someone can know your experience more than you. Moving around does sometimes help pain post-op and since my pain medication has been adjusted, I'm doing more of that. I've been taken off Movocol so constipation is a constant worry. At the moment, I'm on 8 paracetamol daily with slow release Diclophenic though I have to take Ometrezol too. My GP says she'll prescribe Diclophenic for a few months then I could be managed by nurses specialising in pain relief. I've made myself do some walking today .. Just to the end of the road but Ill try to increase that as I start to recover from the op. I love nature so getting out lifts my spirits a lot. Love Tina x x

  • Hi Elaine - So sorry you are feeling so down. I only had 2 operations in one year with no chemo and looking back I honestly would say I did not feel 100% myself till 2 years had gone by. But each month that passed I could feel improvement. I didnt have an critical care or chemo - so I would say it is all probably a normal progression you are feeling - there does seem to be light at the end of the tunnel Elaine and your making your way there - take care xxxx

  • Hi Elaine,

    Just a thought, but how are your bloods? When I was very breathless and wobbly it was because I was quite anaemic and needed a couple of units of blood. This had to be repeated three times. It's worth asking what your blood is doing as this might be a possible cause of part of the problem.

    Hope you feel much better soon.

    Love

    Zannah x

  • Dear Zannah , thanks for your reply , I thought it might be bloods but last bloods were ok according to oncologist . I've tried to talk to oncology team about this my oncologist just said that at this time ' I was unfit ' I know that , what I wanted was some advice , some help , to know if this was normal after my procedures .. So frustrating .. Elaine

  • Dear Elaine, I can't give the good advice that other women on here can, however, it does indeed sound as if the operations and complications have given you a real battering. If you want to get some more advice there is the Ovacome helpline! staffed by nurses who have had lots of experience of treatments and recoveries. The number is 0845 371 0554 and it's staffed Mon to Fri 10 a.m. to 5p.m. I am sure that one of the nurses there will be able to give you some ideas about how to cope with all you're going through. All the best for your recovery, it will take time but you will get there :-)

    Love Wendy xx

  • Thank you Wendy .. That may be useful love Elaine xx

  • Dear Elaine, I've nothing to add that will help. As you know I stopped chemo after my second session and am only just feeling better so I think you are incredibly brave. Just want you to know that I am thinking of you and sending you my love. xxxx

  • Hi Elaine, this is my first post and when I read your description of your symptoms I could totally identify with them.I was diagnosed with stage 4 ovarian cancer and given 4weeks to live without treatment.i had no idea how sick I was so it was a terrible shock to be given such a prognosis. I was given 3 sessions of chemo and then ultra radical debulking ,this was a 9 hr op and amongst all the small tumours and cancerous cells found just about everywhere including my liver capsule they discovered a 15cm tumour which they removed.The op was a sucess all visible signs removed and then I had 3 more sessions of chemo.I can't begin to describe the tummy pain I was left with,could barely stand or walk without a frame ,mostly in a wheelchair. The fatigue was unbelievable I couldn't walk to the loo without feeling faint with exhaustion and I literally crawled up my stairs at night. I was fit and I regularly went to the gym befor all this so being so unfit was very hard to bear. But I'm in remission now after 8 months since my diagnosis and slowly but surely my ability to walk and do some housework is returning .My first trip out to the shops was tiring and couldn't walk far but real progress after feeling so frustrated for so long.I guess the message is try to stay positive ,things never stay the same and you will get better .A little everyday I think is the key, take care and my thoughts are with you.

    Zara

  • Zara .. Thank you so much for your reply .. I feel less alone ..infact everyone's msgs have helped .. I was beginning to feel so alone , isolated , so worried . You described just how I feel ..walking to the loo makes me breathless .. But like everyone has said I think I need to give myself time .( obviously more than I thought ) I have now had the last chemo ..so ime hoping things will become easier ad maybe I won't feel so low .. Thank you all

You may also like...