Advice needed

FormerMember
FormerMember
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My husband was diagnosed with bowel cancer after incomplete colonoscopy at end of March. Within a few days his bowel obstructed and he had emergency surgery for a illeostomy, He is due to start chemotherapy on Thursday folfox for two weeks then iriiotecan will be added to his regime 2 weeks later. Originally the plan was for 3 months with a month off then a operation to remove the cancer. On Thursday we saw the oncologist who gave us bad news after a second MRI scan and said the cancer , which we already knew was “locally aggressive sigmoid tumour with EMVI extending to the potential resection margin” has now spread to several areas of the liver . Naturally we are really upset and apart from his illeostomy which he manages well, some lower back pain and some tiredness he appears well. Last night he was in agony......I slept in the spare room as thought I was coming down with a cold. He had been awake since 1 am sat bolt upright with intense pain deep in his right shoulder. He can walk. It hurts to move or lie down. His pulse seems steady. He took to co codamol at 7 am and accepted some cereal and a drink. He has managed to lay down now and is sleeping as I expect exhausted. It could I suppose just be muscular, and naturally he is anxious as we both are. Do you think there is any connection and should I be worried?

This is the first time I have posted. I have been a distant visitor to the site. We just finding it hard to face up to the problems that keep on being put in our way.

  • FormerMember
    FormerMember

    Hi I am sorry that you are going through this. My answer to you is I just don't know if you should be worried or not and I would suggest that you either go to A & E if the pain remains as bad, or you get an emergency appointment with your GP on Monday morning so that they can make the decision as to whether you need investigations before the chemo starts on Thursday. It would be a shame if it were delayed because they decide to investigate the source of the pain when you get there. There is also an ask a nurse section on here but they can take up to two days to reply so you would be better chasing it up yourself. In your position I would err on the side of caution and get it checked out, you have nothing to loose and you will kick yourself if it is something serious.

    Nicky

  • Hi, I to am sorry that you find yourself on this forum. The only thing I can suggest is that you contact your 24 hrs helpline, if you were given one and if not then I would seek an emergency appointment or visit you A&E department. This is obviously and understandably very distressing for you both and the sooner you get some answers the better it will be for both of you.

    Please keep us informed of his progress and I hope you get some answers soon.

    Rita

  • FormerMember
    FormerMember

    Hi and welcome to the online community and I am so sorry to read your concerns and yes I certainly agree with everything the previous posters have mentioned about having your husband checked out prior to the commencement of chemo starting on Thursday

    I would like to give you a few more alternatives you could do

    1. Phone NHS 111 this afternoon and speak to one of the support line advisers and more than likely you will be able to speak to the Oncall doctor for advice.

    2. Our own telephone support line is open until 8 pm this evening, if you give them a ring ask to speak to one of the specialist nurses for advice. They can be contacted on 

    0808 808 0000

    If you can't manage this evening the lines are open every day from 8 am to 8 pm and you should be able to speak to a nurse for advice.

    3. Present your husband to your local A & E as soon as possible

    Whichever way you choose to go I would have in front of you a note of everything you want to discuss about your husband's condition, it really does make it easier if you have all the facts in front of you when you speak to them.

    But whichever way you want to play it please make a call or go to A&E as soon as possible you have nothing to lose but you stand to receive piece of mind.

    Please keep us informed, never hesitate to contact us at any time we all want to help, support and advise you when you need us to.

    Ian

  • FormerMember
    FormerMember in reply to FormerMember

    Thankyou everyone

    I phoned 111 and he was seen by a doctor.. He seemed a little better at the time and the pain didn’t seem so bad. He was checked  over and given the general advice. He has gone back to bed for this rest of the day which really isn’t like him. The pain is now down his right side and was intense but easing a little but he is having to sit bolt upright. We don know if the pain is connected to the cancer or not. 

    We have made the decision to try and see our specialist nurse tommorow however we have had little contact with her. We feel we not only need to speak to someone as so much has happened and just feel overwhelmed with everything. If we can’t see her we will contact Macmillan for some support and advice

    If his condition changes I will ring 111 again

  • FormerMember
    FormerMember

    Is the co-codamol his only pain relieving medication? If it is it might be worth asking for something stronger until you guys get to the bottom of what's going on. Some fentanyl patches and some shortec liquid can be a  big help. Just a thought and good luck getting it sorted.

  • FormerMember
    FormerMember in reply to FormerMember

    Thankyou. Yet again things changed and after a bad night we rang 111 early on Monday morning as the pain in his right side had got more intense with also some additional pain in his right foot . Also Advised to go to A and E and then to the oncology ward after a chest X-ray. He was also given some stronger co codamol which helped his pain at the time. They talked about “stretched liver” he was happy for a prescription for this and again went home. They arranged a ultrasound scan for Tuesday morning. Rested for the rest of the day and a poorer appetite. 

    Yesterday morning the pain in his side was managed but new intense pain in his right foot causing difficulty in walking. Had his scan and again seen on the ward. They have given him dexamethasone for a week and morphine. His voice is sounding more “husky” as the day has gone on so don’t know if this is anything.

    he is still asleep and had morphine during the night but appeared to sleep well. Has his PICC line put in this morning. Hopefully no more new symptoms today. With all that happened we still didn’t manage to speak to anyone as all he wanted to do was to get home. Thanks for your advice. It’s a great support

  • FormerMember
    FormerMember in reply to FormerMember

    Ugh, horrible thing to be going through. Never knowing what's causing the pain makes your mind go into overdrive asking yourself is it the cancer, is it the drugs, is it something completely unrelated??? Myself and many many others have been and are going through the same and similar, you're not alone I'm this. Good pain relief is not to be underestimated and the poor appetite can be caused by codeine and morphine. I'm on these myself and my appetite has gone to virtually nothing, but I do find eating a little and often works. I've not much to offer except for these few words. Hope you get it sorted sooner rather than later!

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks for your quick reply. Yes the mind is definitely on overdrive. I try to seem calm on the outside and inside I am totally messed up. We are not people to worry anyone or cause a fuss. We are normally the ones helping everyone out etc. I feel thought the chemo has been left to long to start as he should have been well. I guess I can’t look at the “what if” and “why” as we have to focus on the present.

    you have been through a lot yourself. Your kind words and concern mean a lot.

  • Hi ,

    I am on holiday just now but you might want to ask your nurse about referred pain in the shoulder . Some people have reported that liver tumours can sometime press on the nerve and give referred pain in that area . Always pays to get everything checked out by your team and establishing a relationship with your specialist nurse is such a good idea when you have had difficult news of a spread . 

    Hopefully the chemo will start to work quickly and shrinkage bring his pain down . In the mean time you might like to ask his consultant the best type of pain relief for nerve pain if they deem it to be coming from that area . 

    On a positive note my mum will be celebrating ten years in August of a stage four diagnosis with a substantial spread to her liver . So I wish your husband every success and significant shrinkage with chemo . 

    Hope he can bring the pain down soon .

    Court 

    Helpline Number 0808 808 0000