Looking for Hope!: Hi this is my first... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Looking for Hope!

Elaine80
Elaine80

Hi this is my first post, looking for a bit of hope!! my partner was diagnosed in june with stage 4 lung cancer, he's only 42, he had had pain in his neck for a few months gradually getting worse, went A&E 5 weeks before diagnoses as he was in so much pain, doctor just felt his neck while he still had his coat on! said it looks like nerve damage/slipped disk sent him home with pain killers, they didn't work, took 4 more weeks of constantly phoning doctors to up pain relief. They then sent him for an MRI we panicked after as they passed him a disc said it was an emergency and told him if the pain gets worse to go hospital! waited 3 days then our GP phoned and told him to lie on floor and wait for ambulance which was on its way!! they said he had a large mass on his neck. When he was in hospital they told him it looked like a tumour and it must be from somewhere else! he had to go through this alone as i wasn't allowed with him due to covid, 2 days later they removed a tumour the size of a golf ball from his neck he's had bolts etc fitted to stabilize. He has since had 4 cycles of chemo and immunotherapy which shrunk the tumours in his lung but he has a tumour in the middle of his back which has grown, he had radiotherapy on it last Thursday and he's waiting to see his consultant to start new treatment plan. He is in a lot of pain which they are not controlling it's horrendous as i am now his carer but i had 2 stents fitted last year as i found out i have heart disease! i was only 38! never smoked. i am really struggling mentally and was hoping for a bit of support.

12 Replies
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Hi Elaine, so sorry you are both going through serious health issues. Your partners pain really needs to be managed. What is he taking?

My dad has stage 4 NSLC and he’s on slow release morphine tablets (you take one every 12 hours) and if he needs pain relief in between he has paracetamol or Oramorph.

I have Spina Bifida and a split and tethered spinal cord, spinal stenosis and more which has left me with constant pain including permanent nerve pain so I know what this kind of pain is like and it can be horrendous.

I hope the radiotherapy does the job and your partners cancer in the spine goes away and the pain goes with it.

Sending big hugs to you both xxx

Elaine80
Elaine80 in reply to simlut

Thankyou for your reply, my partner was on morphine slow release and the liquid his macmillan nurse changed them to oxycodone which he has had to up to 120mg a day and he has the liquid, he also takes 600mg pregabalin a day, he is anaemic at the moment waiting to hear from christies for a blood transfusion, he has previously had 2 and did feel better after them, the operation he had to his neck was very painful after radiotherapy, i think he has damaged nerves, at one point (my 40th birthday) we both ended up in the same hospital and ward! i had terrible chest pain, i was in a bad way told the nurses etc that i was struggling they didn't do anything, my GP has put me on diazepam which help a little bit and im waiting to hear about some counselling, think the pregabalin are helping my partner with his anxiety, sorry to hear about your dad and your own health problems it's so hard isn't it we have two children one 20 and the other 11 im having to keep our 11year old off school due to a high rate of covid in our area, bloody virus is making things even harder!

sending hugs back to you and your dad xxx

simlut
simlut in reply to Elaine80

It sounds like he is really struggling even on the new medication. I would call his lung nurse or palliative care team if he’s in touch with them. He can’t be left suffering like this.

Hopefully the radiotherapy will help reduce the tumour and therefore stop the compression on his spinal cord if there was any, but if not, they can possibly do nerve ablation where they kill some of the nerves to stop pain. Where is his pain is it where the surgery was? or where the tumour in his spine is?or is it referred pain?

Be aware that Pregablin can cause brain fog and confusion and he’s on the maximum dose allowed. I came off Pregablin a couple of years ago as I didn’t want the side effects and mine is permanent so it was a life decision for me.

My parents live with us and my children are 16 and 12 and both going to school it’s such a worry that they might bring Covid in the house but my daughters about to start her mock GCSES so I can’t keep her home.

I’ve gone on Citalopram anti-depressants because my anxiety was really bad dealing with my dads diagnosis and all his appointments, then my dad broke his femur and we had to call an ambulance and I thought I was going to end up in hospital with him! I must say I feel better since being on them and have been able to come off the sleeping tablets.

Sending you big hugs, take care of yourself in all this as well xxx

Elaine80
Elaine80 in reply to simlut

Glad your feeling better, I can only take sertraline because of my heart and the medication I'm on but it doesn't work for me, he said his pain is all over really could be down to the immunotherapy we have no idea, his pain was in the bottom of his spine and down one leg but he said that has eased off since upping his medication it could all be a mixture of things, he's not to bad at the moment with the pregabalin it's really frustrating, hope you and your family especially your dad are OK it really is horrendous what we are going through and i struggle to get through the day sometimes but we have no choice!

Take care and thank you for your advice! Xx

simlut
simlut in reply to Elaine80

My dad has had atrial fibrillation for over 4 years and is on lots of medication but has to be very careful taking other stuff.

It is horrendous but as long as we all accept help in whatever form, we can get through it taking one day at a time xxx

Elaine80
Elaine80 in reply to simlut

Definitely, one day at a time

Take care xxx

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Elaine80

Welcome to the forum, and so sorry to hear of the journey you have both had so far in getting to a diagnosis but more so the pain your partner is still in.

You must both still be in a bit of shock and it is quite normal for your emotions to feel quite intense and overwhelming, but equally important for you to have support to help cope with this.

It is encouraging that the treatment he had to his lung tumour has reduced this. You mentioned that on Thursday you will know of your partners treatment plan , which initially may be to reduce the pain that he is having , however he should not have to wait until Thursday to have his pain managed. If your partner is at home, call his GP, even though he may be on pain relief medication, if this is still not easing the pain ,then he needs to be reassessed.

If your partner does not have a community Macmillan nurse you could ask this of the GP or if there is a community pain management team/ palliative care team. It may also be worth asking for referral to your local hospice, they are not just for end of life care but help to manage any life limiting illness.

A lot of pain medication can make you constipated, which can make the pain worse, ensure he has laxatives and if you are not sure you could discuss this with your local pharmacist or GP.

Do tell the GP that you are finding it difficult to cope, there are many support services available. Your local Maggie's centres are a great source of advice and support , you can book a time to visit them from this link: maggies.org/cancer-support/ and their helpline number is 0300 123 1801

There are many information booklets on our website on lung cancer from diagnosis, through to the different treatments and living with lung cancer, which can be found on this link: roycastle.org/help-and-supp...

However if it is more the pain and information on the tumour on his back you may find information on Cancer Research UK helpful: cancerresearchuk.org/about-... and their helpline number is 0300 123 1022

Macmillan support online provide a lot of useful information and can be found on this link: macmillan.org.uk/

We have a new service called 'Keep in touch' where one of our dedicated team members either telephone or email you once a week to provide support and see how you are both doing, if this is something you are interested in you can register through this link: roycastle.org/covid-19/info...

If there is anything else you would like to discuss you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Hi there what an awful time for you. The team really need to try and get the pain under control which must be so distressing. Have you been allocated an Oncology nurse who can advise you on medication. My husband is on slow release morphine tablets and oramorph 6 hourly which helps. We have an excellent palliative nurse who advises on pain relief. I am my husband's carer too and understand the stress,worry and responsibility this brings. I wasn't coping well and I have started antidepressants which have helped. Covid doesn't help because you get isolated so it is good that you have joined the forum. My thoughts are with you

Hi thank you for replying really struggling at the moment, because they have increased my partners pain relief, he is now taking 60mg oxycodone and the liquid, he also takes 600mg pregablin a day, he is hallucinating a bit so can't win as he was in really bad pain, he also started last night with pain in his chest, this could be down to the high dose of radiotherapy he had last Thursday or he could have fractured a rib, the cancer is in a couple of ribs, it's awful, and I am not well myself so really struggling mentally and physically, we have a macmillan nurse who comes every 3 weeks but other than that my partner won't accept help.

Thank you, take care

Elaine xxx

I think we must both have stubborn partners as my husband won't ask for help either which makes it very hard as it is all on us! I would definitely get in touch with Macmillan to ask for someone to call you each week. I have struggled too and am taking medication to help me cope. It's a horrible situation. No-one wants to watch their partner suffer and it is very isolating. I know you will get lots of advice from people on this forum who are in the same situation. Have you got family support, someone you can ring when you are struggling.

Elaine80
Elaine80 in reply to Bettyblue54

Had yet another awful day, had to phone ambulance as my partner had severe pain in his chest he can't even sit up! They came but said he is better off staying at home as it is the cancer or treatment that is causing it! I'm feeling really ill at the moment angina is constant, so struggling, my partner is talking to his self and hallucinating because of the pain medication the paramedic said this is normal and he will just have to get on with it basically feeling very low, got my gp phoning in the morning.

Take care xxx

Turns out the paramedic was wrong and looks like he has an infection or blood clot, just another time we have been let down by the NHS at breaking point now

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