Advice welcome

[Cyclingpartner]

Hi everyone, I'm new here and hoping to gain some advice and strength from others in similar situations. My boyfriend has Stage IV non-small cell lung cancer (adenocarcinoma) with bone mets. The cancer has travelled into his spine causing so much damage that he had to undergo spinal surgery to replace and support the damaged vertebrea...He has several rods, plates, screws and a cage supporting his spine now... He is in constant pain , has no appetite, dealing with nausea, constipation, extreme fatigue and daily radiation treatments ... He's not eating and has just finally started drinking ensure, but can only handle it once a day...he drinks a lot of sports drinks and juice, but solids are hard for him...everything makes him nauseous... I've tried to get him to take the nausea meds, but he's afraid that he's taking too many meds already....(he has anxiety, had previous to diagnosis, but used exercise to deal with it) he's on 2 different pain meds plus Gabopentin and Baclofen... Also on miralax, and a blood thinner for a clot in his leg...This is so hard for him as he has always been active and healthy...Bike riding, hiking, running, never a smoker.. The emotional and physical toll is so overwhelming...How do you cope with all of this? He has lost 25lbs and is withering away before my eyes... I am with him every second...trying to help, to support, to guide, to listen...but it's still not enough... He will take advice if it is given directly from a doctor and sometimes a nurse...but many times his anxiety causes him to not follow through with things and then he cant understand why the nurse's advice didn't work. . It's a struggle to see as he is only making things harder for himself... I know I'm helping him in many ways, by listening, caring for him, encouraging him, letting him vent, and occassionally walking away when he gets too snarky.... I have no idea what it feels like to be in his shoes, so it's hard for me to know when or if there's a time or way to say "Hey, it's time to put our armor on and fight this monster...I can't do it alone... I need your help." Not sure if any of this makes sense, but I need to know that I'm doing everything I can to support him... I have yet to find anyone who has had to go through the trauma of spine surgery on top of the cancer diagnosis... No one should have to go through such pain...I wish cancer never existed... I wish I could take his place...it is so hard to see him hurting like this...😢💜

[Marla222]

Im so sorry you are having to go through this. My mum has stage 4 lung cancer which is terminal. So I know how it feels to feel so helpless. The hospice nurse did say to me that fluids are more important than food so you can relax a bit for now. Sometimes mum doesn't want to take her medication so I say stuff like 'do you remember when this happened, or this may happen if you don't take them'. I sort of talk a bit like shes a child. Maybe if you try to explain if he takes the anti sickness he will get stronger because he will be able to eat. My situation is very different, i know, my mum is elderly and also has dementia. The emotional pain is real though. Get yourself some help too. Its important to look after you. You are welcome to message me. Hope even a tiny bit of this helped, Marla xx

[Cyclingpartner in reply to Marla222]

Thank you Marla...I'm sorry to hear about your mom... Your advice regarding taking care of myself is appreciated.... It truly has been taking a toll on us both... Another member told me about palliative care services, so I'm going to look into that for help and support... Thank you again! Hugs, Cyclingpartner

[Marla222 in reply to Cyclingpartner]

Hugs back to you. There are so many help lines, ive spoke to Roy Castle Macmillan and alzheimers society they are brilliant. Ive been getting counselling through the local hospice too. They are not just for end of life. Wishing you both the best. Keep in touch. Marla

[Cockailschemocancer]

Hi there,

I’m so sorry to read this as it must be as hard for you as it is for him. I’m not sure if this will help or not but I was very anxious after diagnosis and I was prescribed with Mirtazapine which not only helps with the anxiety but makes me sleep and hungry in the morning. I’ve put on 25lbs now since diagnosis so it might be worth asking about it! Hope that helps and good luck xx

[Cyclingpartner in reply to Cockailschemocancer]

Thanks so much Daisy...I will read your post to him and see if he would be receptive to this... He often gets upset when I mention the anxiety and gets defensive, but perhaps hearing it from someone else will help him accept and address it...

Hugs for you, Cyclingpartner

[Bettyblue54]

I feel your pain in your post. It is incredibly painful to watch your loved one suffer. It is so hard when they were such fit, active and independent people before the disease took hold. There is no easy way through this. Take one day at a time. You are doing everything that you can to support your partner at this awful time. I hope you have some support because a cuppa with a friend can break up the day. Have you got support from the palliative care team? I have spent many days in tears when it has all got too much , I have got angry, depressed and railed at the unfairness of it all.

[Cyclingpartner in reply to Bettyblue54]

Oh thank you Betty! Yes, I have had many teary moments with a rollercoaster of emotions! I am going to ask about palliative care at our next oncology visit this week. . We've been trying to do this alone as we have no family close by and it's been so hard... so good to know we're not alone in this...thank you Betty! Hugs, Cyclingpartner

[Bettyblue54 in reply to Cyclingpartner]

How old is your partner? You sound as if you had an active lifestyle so adjusting to a different life can be overwhelming. We are very much at home as hubby is on oxygen so life is very restricted. Is your partner having any treatment at all?

[Cyclingpartner in reply to Bettyblue54]

Hi Betty, I hope your day is going well...My partner is 49 and yes, we are very active...It's difficult for him to be home and unable to do things... He could never sit for very long and was always keeping busy... I'm a teacher so our summers were spent outside, biking, kayaking, hiking and exploring...This summer we had several trips planned which he was so looking forward to... This is such a nightmare for him...for us...Its so hard to keep him positive....

[Bettyblue54 in reply to Cyclingpartner]

I really sympathise, he is also young. My husband is 59 and like your partner, never sat still for 2 minutes. So, it is a huge life change. We went to the hospital this morning and it took forever trying to make sure we had enough oxygen for the trip. How is your partner coping? Does he get depressed? I understand he is a lot of pain which must be taking it's toll. I expect, like me you have dreadful days but what can we do except carry on. We, too had lots of plans. Our cafe shut due to the virus so we were planning some trips.

Has your partner been offered any treatment?

[Cyclingpartner in reply to Bettyblue54]

My partner is getting depressed too, Betty... He just finished radiation treatments and starting chemo at the end of the week... Thank you for suggesting the ensure shakes...We've been trying them, but they often come back up...he can't keep much in his stomach... the saltines and sports drinks are the only things that he's getting down now...Is your husband able to eat? How long ago was he diagnosed? Did he have to go on oxygen right away or was it gradual? I'm asking because my partner is coughing alot more and has been short of breath these past few days...I'm so scared for him... It's so hard isnt it? Today I went to the grocers and had a good cry because I had no idea what to buy... I just wanted to buy his favorite foods, like I used to... Well, it's getting late here and it's been a long day for me...I better get some rest...Thank you for sharing and listening, Betty... Saying a prayer for both of you tonight...🙏🙂

[Bettyblue54 in reply to Cyclingpartner]

My husband was diagnosed in April when he was admitted with pneumonia and the tumour was picked up at that time. He had 2 admissions to hospital as he could not breathe. After the second admission, he was discharged home with oxygen and unfortunately he has been on it ever since. My husband is now 8 stone but eating small amounts but it is hard work. I have started buying small ready meals like a cottage pie but unfortunately food has become a necessity rather than a pleasure. Radiotherapy starts tomorrow and I am just hoping the side effects are not too awful. Hubby was a smoker I am afraid so his lungs are damaged which may account for his need for oxygen. Life has turned upside down. If you need to talk, message any time. Let me know how your partner copes with chemo, I expect you are apprehensive as I am about radiotherapy tomorrow hence the sleepless night. Try and look after yourself too but I know that is difficult when have so much to deal with.

[Bettyblue54]

Message any time. I am here trying to cope and not always succeeding!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Cyclingpartner

Welcome to the forum and so sorry to hear about your boyfriend and how extremely difficult this is for you both.

There have been some wonderful replies form those who have been there. It can be a very isolating time as only those who have truly experienced this know exactly how you are feeling and as you can see you are not alone.

The roller coaster of emotions are a big part of dealing with this and nothing seems normal anymore. Both moods and emotions can change not just daily but during the day. Macmillan support has some good information and advice on this:

macmillan.org.uk/cancer-inf...

We have some inspirational and encouraging accounts from those living with lung cancer on our website and can be found here (some of them have been fit and active like your boyfriend): roycastle.org/campaigns/

Dealing with spinal surgery on top of the cancer diagnosis must be very challenging. You do not have to wait until your Oncology appointment to ask for palliative care services (which are there for any life limiting illness and does not always mean end of life care) Your boyfriends GP can request the community palliative team to get in contact with you and they can assess what needs you both have and provide support and advice.

Your boyfriend should have a lung cancer nurse specialist, if he does not have one either the GP or specialist can refer him for one. They are a great source of advice and support. They can also make referral to the palliative care team.

It must be extremely difficult for you dealing with this on your own, the combination of your boyfriends anxiety which impacts on him not taking his anti nausea medication that would help him. It is so important that you have emotional support for yourself or if anyone could give you a break and be in the house for your boyfriend so you can get a bit of time our for yourself.

The Maggie' centres are a great place just to have a chat , these are attached to most cancer hospitals, you can either call them or arrange an appointment for you to go to the centres, details can be found on this link: maggies.org/

If there is anything else you would like to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Cyclingpartner in reply to RoyCastleHelpline]

Thank you so much for the helpful links and advice... We have just been given a nurse navigator and will be calling her tomorrow! My partner has not been very receptive to the info and research that I've shared with him regarding outside supports, but today he agreed that we both need additional help beyond one another... I am so thankful I found this site! Everyone is so kind and helpful here...It can be so difficult to reach out to others... Being here gives me hope...Thank you for that... the stories are inspirational and it feels good to connect with others going through similar situations... Cancer is a formidable adversary and one needs hope to carry on....

Thank you again,

BikingPartner 🤗

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Cyclingpartner]

You are most welcome and it will really help the fact that he is now open for support and for both of you.

Please do not hesitate to get in contact with us if you need to talk anytime.

Our email is [e-mail]

Nurse helpline number 0800 358 7200

All the best

The Roy Castle Support Team

[Bettyblue54]

Just checking in to see how you and your partner are doing. Is he managing to eat anything. I have just collected ensure drinks which were prescribed by the consultant. They are to help with weight gain . Perhaps these might help your partner with his weight loss. We are just about managing but everything has to be micro-managed with the oxygen in tow. How is your partner's breathing? My husband has been offered radiotherapy starting next week to try and reduce the tumour and help his breathlessness. All I can do is keep my fingers crossed.

[Bow-19]

Just wondered if your partner has been tested for mutations eg ALK, EGFR. Sometimes non smokers have these and it changes the treatment options available. I was just 49 when I was diagnosed and was fortunate to have a mutation, not all people are tested for them.

As said before Maggies are a good source of support and some hold virtual lung cancer support groups. Definitely worth contacting your nearest one.

It’s definitely not an easy journey and good to tap into all the support that’s available and then decide what’s good for you both.

Very best wishes

[Cyclingpartner in reply to Bow-19]

Thanks so much for sharing! My partner was tested and unfortunately, does not have the mutations needed for the targeted treatment... He has had radiation and is starting chemo at the end of the week...The lung cancer continues to spread, bone mets (spine) and his liver as well...The back surgery had to be done first and then we had to wait three weeks before we could start the radiation...in the meantime, the cancer is taking its toll...his coughing has increased, he is becoming short of breath, and hasn't been able to keep the protein shakes down... praying for God to give him the strength to get through this... We have just been assigned a nurse navigator and will be calling her in the morning to connect us with some local supports... You mentioned that you were diagnosed at 49...how are you doing with it now? Pray that you were able to overcome this...such a difficult journey...😥 Thank you again for your help and advice...

[Bow-19]

Hope that the nurse navigator is able to give you the support that you need. Local Mac Millan Nurses are also very good. Your GP might be able to help with a referral. Hope and pray that your partner gets a good response to all of his treatments.

I am still on targeted treatment. It has been an up and down journey but I am well at the moment. Thank you.

Do ask about MacMillan as they are very supportive in helping manage day to day symptoms. Also your local hospice. I have found mine to be very supportive x

[Bettyblue54]

Hi there just checking to see how you are both doing? Has your partner started the chemotherapy?

[Bettyblue54]

How are you getting on and how is your partner? Things sounded really difficult for you and I understand your partner started chemotherapy. We have had a difficult week. Hubby started a course of radiotherapy but unfortunately it has made the coughing and breathlessness worse which we were told to expect. He is having horrible panic attacks when he struggles to breathe. We have some meds now which hopefully will help. Is your partner managing to eat at all? I have found that ice-cream is quite successful!

[Cyclingpartner]

Hi Betty...I hope you're doing okay... Im sorry to hear about the anxiety... Cancer is just awful! I hope the radiation is going better now... 🙏

We have started the Chemo and side affects have been fatigue, nausea and some diarrhea... We went for his 1 week recheck yesterday and the doctor sent him for iv fluids as he was getting dehydrated...He ordered additional meds for the nausea... It's been a rough week as we also found out that the cancer has spread to his eye... We had to go to the ER because my partner was having difficulty with his vision in one eye...It's so frustrating to hear that the cancer is spreading in the midst of doing Chemo... We have an appointment with a specialist for his eye next week...We may be able to do some radiation treatments to help his vision... Thank you for the ice cream idea! We're going to try making a light milkshake tonight! 🙂 Oh, a friend of ours made a delicious chicken soup broth, by pureeing the vegetables and broth together...My partner liked it and it stayed down... I've been at a loss of how to get nutrients in him...so it was very helpful! Please let me know how you're both doing...Saying prayers for you!🙏🙂

[Bettyblue54]

Really good to hear from you and yes soup is a good one- full of nutrients . It sounds very tough for you both. The downside of treatment are the side-effects and I expect, like me, you are in a constant state of anxiety. I am sorry there may be spread to the eye - it is frightening how quickly it can spread. How is your partner coping? My hubby completed 5 days radiotherapy and it increased the breathlessness and coughing. However, it has settled a bit and we are seeing the specialist this week. Is your partner managing to sleep at night and are you getting much sleep? It is so important as it helps you cope the following day. I expect you are having bad days too - it is difficult to stay positive all the time but I think it is healthy to have a good cry now and then! Let me know how things are going. Our appointment with the specialist is Wednesday so we will find out the next plan of action.

[Bettyblue54]

Hi there how did your appointment with the specialist go? How is your partner feeling- you both seem to be having such a hard time. Is he managing to eat. I am constantly battling to get food into him and keep it down. Emotionally things are tough. We are seeing the specialist in a weeks time but I fear we not be offered treatment if he is on oxygen