Been lurking a while thank you for this forum it helps so much From UK husband has had CLL 15 years diagnosed at just gone 48
Been through a lot he didn't want line chemo at all he just couldn't do it and I have to support his decision ..he hates it ..cant stand needles blood or sitting watching others have it also and nearly died twice in the last two years.. his spleen was the biggest they'd ever seen and measured 36 cm when they could scan it ..it grew bigger and was pronounced " enormous "on last scan ... and eventually he was given calquence .. 2x daily
Took a long time to convince him to try it he only took it as he was nearing end of life and its reduced spleen to 24 cm and blood counts normal ... spleen has stopped shrinking now though..hes been on calquence less than a year
The problem is the lung nodules are still growing baffling the consultants as the calquence is working elsewhere another top consultant is being contacted via the consultant he already has for opinions but we were told this may take some time
Hes having a break from hospitals now for 8 weeks hes a very quiet person who literally panics to the point of extreme fear over even going to hospital
The biopsy word was mentioned yesterday and he took off out of the room leaving me with the consultant again
They know me and him so its fine
Has anyone had any experience of this ?
From having to accept that someone doesn't want treatment..to the nodules.. ..and coping mechanisms when their loved one is desperately ill as he has been in the past
Theres no help just myself to deal with this
Anything would be appreciated
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Supersurfer1
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Perception is 85% reality. A therapist for you to help cope with a loved one who is stuck … may be that support you need the most.
The thought patterns your husband has developed over years will not be changed in a short time, even if his secret wish is to make that scary leap. It doesn't take away from his value and dignity one bit. Neither should it diminish yours!
There is obviously a lot of care you have for him, I personally thank you. We have some members that have just the opposite, but that's not for me to tell.
Remember, to gently highlight the successes, and resist the strong urge to go to logic. Just remind him you'll support him in anything he is willing to attempt (without any pressure, he may be motivated intrinsically to cautiously advance).
I'm no expert on this, but I suspect overcoming phobias is no small thing. To be a CLL patient is to be a human pin cushion.
I can't imagine how you've felt during those appts and at home for the past 15 yrs. I watched my own sister refuse treatment for a cancer that was treatable. After one chemo infusion, she decided it was not for her and chose death over discomfort. I've done my best to accept her choice. Life throws so many things at us, and we're taught to believe we can overcome them if the tools are available. But if the tools are available and rejected, what then? We weren't taught that and it doesn't compute. When something is beyond our control, even as we hold it in our arms, it is the stuff of Greek tragedy—a heart-wrenching story of fate, free will, and the human condition.
I wish I could offer you some comfort, to somehow dilute the pain you must feel. If your husband won't get help, I hope you're able to get help for yourself—because there will be feelings of helplessness, loss, betrayal, and a whole host of emotions. My heart goes out to you and your family. I'm so very sorry you're going thru this.
Just a big virtual hug for everything you both are going through.
My Mom had relatively easily avoidable health problems, and it was difficult with all the arguing/upset at first, then I finally had to stop. It was her life, her decision(s). I don't even know the cancer that killed her, she refused testing and my aunt had her cremated before I could arrive in state after her death. She was mad at me at the time of her last admission & told the nurses my aunt was her next of kin. Her doctor knew I existed, & questioned where I was a few days into her last, serious hospitalization. I had a broken leg, not in a walking cast, trying to cross the US during a winter storm that shut down the airport I needed to change planes (Chicago). I did not get to see her/speak to her before she died.
It's awful when an adult loved one refuses to do things regarding health, but not much you can do if they refuse. At least you are physically there, I hope that brings some comfort.
Cancer Care offer brilliant support. My partner is recovering from treatment for throat and neck cancer and is seeing a hypnotherapist, arranged by them. I think it is helping with the anxiety.
I’m also in the UK. I hope it helps you to share your experience on this forum with people from all over the world who really empathise. I think part of the problem with CLL is we feel isolated and fearful . We know no one who has this condition and each patient has such a different CLL story. I hope that something can be done soon to help him move forward
What a difficult situation you are in. Because you are so close to him the various blood cancer charities have schemes called’ buddy’ where he would get a fellow patient to talk to, sorry not used but their websites should give details. Would his CNS be able to talk to him and sit in appointments. Also McMillan and the psychological help they offer.
Hi Supersurfer1, I am so sorry to hear of your struggles and pain. It's not easy and can feel very isolating. For what it's worth, we are here 🤗 as the WhatsApp gif says, you can't feel the hug but know it's there.Perhaps as Spark_Plug suggested, you may like to consider talking to a therapist who could help you with this emotional rollercoaster. So often the focus is on the patient and the carer is left holding it all. You may find it helpful to have someone hold the space for you to process this pain. Implicitly it may also help your husband.
If you prefer not to talk to someone perhaps exploring something like mindfulness for cancer, which can teach you simple practices to find your feet on the floor and breath in the body when things get tough, redirecting the attention to the present moment thru the senses can help stop the full catastrophe thoughts. I particularly like the work of Trish Bartley a cancer survivor herself who offers a kindly approach for patients, carers and health professionals. You can find free resources here mindfulnessandcancer.com/pe...
It’s difficult to watch a loved one go through pain and suffering when our hands are tied. My father wanted no more treatments, doctors and hospitalizations. He had lived a good life with dignity and was ready to die. I think in his eyes he wanted to spare his family from watching him suffer. Hardest thing I’ve ever had to accept, but it was his life and his decision. I pray for you to meet each day with compassion and courage. He is so lucky to have such a wonderful wife. We’re always here for you. 🙏Sally
My husband is also very sensitive, which manifests as anxiety and panic attacks. I wouldn't choose any other man to share my life with, though.
He put off going to the doctor for a year after his symptoms started. I finally got him to do a blood test at the gp. They rang him back that same day after 6pm and told him to come in and collect a letter so he could be admitted to A&E that same night. That's how unwell he was.
After his diagnosis, he also told me he just wanted to go home and forego treatment. That discussion lasted less than an hour, though, because his doctor came into the hospital room and told him he would be very worried about him if he went home. He told us my husband would have 1-3 months with early disease detection(he had CLL as well as CNS lymphoma). At the time he was diagnosed, it would've been a few weeks before the disease ended his life. So, he agreed to undergo treatment.
He's been in remission for almost 2 years now. I still feel guilty for potentially influencing his decision to undergo treatment. I didn't say anything when he objected, just gave him the facts and the doctor took over. But I know he didn't want to disappoint me.
We are very close. We both had 'best friends' when we met, but quickly became each other's best friend almost instantly. I've been with him ever since he went to A&E, I slept in the hospital on chairs and sometimes cots for almost a year. I knew he would be very uncomfortable and he was, almost constantly for that entire year and to this day. He still hasn't regained independence.
It's such a bittersweet feeling, more bitter than sweet, still having him here. I wasn't ready to bury him 2 years ago, but now death seems like a viable alternative to the physical and psychological condition he's been left in after that experience. If he relapses, I don't know what we will do. We talk about everything except that. I think it's because we both know that there may not be a discussion next time.
He's still recovering, his counts have improved but not back in normal range. He still has to do physio for the brain injury and we're waiting to have his medication reviewed. That will hopefully alleviate the side effects of his current meds. I am hopeful that it will all have been worth it eventually.
I suppose my point is, you can't change who you love or the circumstances you find yourself in. I remind myself to be grateful for the good and to learn from the bad. My husband has to live his own life, even though he has become a significant part of mine. I will do absolutely anything I can to make his life and treatment more bearable. But ultimately, I don't think either of us will be happy if I force him to stay with me. It's like trying to catch, but not crush, a butterfly in your hands.
Hello again Supersurfer 1. I am so sorry to read about your husband's medical condition but I know you will get help and advice from others on this forum I feel so much for you with your husband's thoughts about treatment and reactions. Leaving you with the consultant must have been horrendous.
I am in a similar position supporting and coping with my husband's health issue for so many years. He has had benign brain tumours but needed much persuasion to agree to the necessary operations. Then epilepsy but refused to take medication for many years meant I was dealing with the many grand mal fits. A year or so ago diagnosed with adrenal sufficiency but refuses medication. Just as I was about to start treatment, a fall led to a long hospital stay and reduced mobility. He thinks the prescribed exercises won't help so doesn't do them.
I have support from our family but it is so hard so I really do understand where you are coming from. Message me privately if you would like to.
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