We are getting up to one year since my husbands problems started, he had what we thought sciatica down his left leg and that was so painful for him. He then had shortness of breath and spoke to a doctor and was sent for a chest x/r, the GP rang the day after telling us it was either pneumonia or lung cancer, talk about putting the seed in our brains. It turned out it was lung cancer and at stage 4. Still he continued with this pain down his left side, they kept saying it hasn’t spread but after I knew there was something more to it they eventually did a CT scan and our world fell apart for the second time as now he had mets in his spine and left pelvis. They tried radiotherapy but that didn’t work, he had chemotherapy x 3 and then he couldn’t handle anymore so they stopped but a scan showed it had reduced the tumour in his lung and also in his spine. Things seemed fine for a while then he fell in the hospice and he then started with pain down his right side. We asked the oncologist if he could have a scan to see if the cancer had gone to the right side but he said no. I find it so difficult to understand why if someone is in lots of pain they won’t scan them to find out what is the cause. He is in awful pain and all they are doing is messing about with his tablets to see what might take the pain away. The problem there is so many side effects, he is sleepy, confused, hallucinating and it is breaking my heart to see time like this and in so much pain. Then the last time he went in the hospice he came out with covid and is still positive a week later. I can see he is getting weaker. I am upset, angry, heartbroken, unsure how much longer I will have him. My head is all over the place, I am having to be his career now and miss being his wife. I am trying my best but some days it doesn’t feel enough. Are my feeling natural lot am I over reacting, sorry for moaning on but I feel so lonely
Hi hope you are both doing OK. I totally understand where you are coming from my husband was diagnosed with cancer in his back extending to his spine also lung mets, he started pain in his right leg after scans and biopsy 18months ago said it was bowel cancer mets from 10yrs ago which had reoccurred. He also had radiotherapy with no improvement and 2sessions of chemo which made him so poorly he decided to stop as couldn't stand pain. I cared for him at home until last October he went into hospital breathing problem then went to care home November. What I'm trying to say is I felt awful I couldn't look after him any longer but I did my best and I also felt alone I still do even though my adults kids have been very supportive. Keep pushing for help if you need it I think I had to break down crying upset before I was listened too alot of it was anger as no one appeared to be listening. Getting your husbands pain under control is one of the hardest things to do as people are so different to what pain they feel, have to try different combinations of pain relief. I hope things get sorted for you it's not a weakness saying you need help. Look after yourselves x
Hi, Thank you for your reply, I understand your pain, it’s like mine and it doesn’t go away. Yesterday was a really bad day, he was in so much pain and feeling sick, I rang the helpline and a doctor rang me. This morning again the same pain, I have put a Tens machine on his back to see if that will help him, I have now tested positive for covid, it was only a matter of time before I got it, We just have to take things one day at a time, take care xxx
Hope you are feeling alright yourself, your husbands pain eased with tens machine.Like you said take one day at a time that's all you can do. Thinking of you x
Thank you, it’s been a bit of a rough week, doctor and nurses called out during the night, injections given and not touched the pain, hopefully next week we see the consultant anaesthetist about a nerve block xxx
I would keep pushing for medication reviews, I used to hate going on at Dr s but husband needs to be pain free as possible also upsetting for you aswell. Pain relief is one of the hardest things to get right because everybody different. If not happy with pain he's in get back in touch with Dr's, hope you will be OK and things little less stressful x
Hi, Thor biggest problem is it’s nerve pain and all the medication they have given him is not working. When they increase it he is confused and hallucinating and spaced out so hopefully the nerve block will help but the consultant said yesterday that she can prescribe a drug but he would have to go in the hospice to be monitored, so if the nerve block doesn’t work then at least there is a backup. He also needs fluid draining off his lung and because he came out the hospice the other week with covid, the hospice closed down and now I have it. I have kept him safe all this time and the one place I thought he would be safe and ends up with the virus. But we are looking on the positive side and trying not to get us down xxx
Hi husband was on medication for nerve pain, which worked for so long he used to get like electric shocks from nerves until had tablets pregablin he also had direct injection nerve blockers when he fractured his hip, they started giving medication on top of this and pain management for nerve damage also anxious. But this was all sorted out by nursing staff in care home, does help but makes him sleepy. He often refuses it and his oxygen as breathing effected with cancer also nebuliser to clear mucus build up.Hope consultant comes up with medication to help. Thinking of you x
Thank you, thinking of you and your husband. Life sucks when you see your loved one in so much pain. My husband is on a cocktail of tablets including pregabalin, oxycodone and Amitriptyline to name a few. I know we aren’t at the end of the road as far as medication is concerned but the nerve block is the last hope. We are waiting for a chest x-Ray to see how much fluid he has in his lung and then that can be drained. The amount of drugs he is on makes him very sleepy and it’s no quality of life for him or me come to think of it xxx
Those are medication husband on plus oxygen nebuliser and also when gets very anxious Midazalan injection, get anxious agitated then struggles to breath. Your right the whole thing sucks, I hate watching husband in pain etc weight loss, saying that he is still fighting on, do get smile or he touches my hand face at times, but not man I fell in love with over 30yrs ago. I'm sure we will both get through this but take whatever support or help you need, don't burn yourself out, I got to that point trying to do everything. Not that I like being alone but husband is being looked after as well as the staff can, especially when he refuses meds he should have x
My husband isn’t at that point yet where he needs a nebuliser but the doctor was talking about it this week so don’t think he is far off, he is still at home and family are helping but the thought of him going into a nursing home scares me, I want him home and he wants to be at home for as long as we can, xxx
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