Psychological issues?

[Lymetree]

Hi there, I'm not sure what's going on but I've been admitted to hospital several times for pain management, while in I've been fine and feeling a bit like a fraud. However on coming home pain has increased and Im back to square one again despite extra medication. I do realise that while I like to be home I feel safe in hospital. Also although my husband is now doing all things domestic while I'm at home I can still see it whereas in hospital I'm removed from everything. My MacMillan Nurse thinks I am very tense as I've also been sick a lot despite being 5 weeks away from my last chemo. All this has not been helped by a failure at infusion 3 with Carboplatin and Taxol, as a result the cancer has been growing while I wait for a new chemo regime to start hopefully this week. I admit I am scared 24/7 of pain, new chemo which has some bad side effects (it's for bowel cancer as I have mucinous ovarian) and of course the cancer growing and outcomes. Sorry if this sounds money but right now it's how I feel. Your thoughts will be much appreciated. Maureen

[MostlyHarmless]

Hi Maureen. I'm the other way round - always in worse pain in hospital as I do not feel safe there (my local hospital has an appalling reputation) and I'm usually better at home. My cancer had spread enough to be inoperable so I'm sort of waiting for it to make it's next move. Worry does make you feel pain more (adrenalin and tensed muscles) so I get low dose diazepam from my GP to help with the tension. I usually take it at night.

My beloved also paid for someone to come to the house to do gentle yoga (mostly seated) and relaxation for several weeks. This has helped. My local cancer help centre and local hospices also run sessions and I have been to them when feeling up to going out.

Regarding your husband doing all things domestic - I feel your pain on that one. I have had to learn to ignore the way my beloved does things - why does he think onions need to go in the fridge? And why put them next to the melons?!! He's doing his best, bless him and it would be lot worse if my mother was doing it.

[Lyndy]

Hi Maureen I can testify to pain being about more than physical symptoms. I have rheumatoid disease and I have noticed that I get a flare of my symptoms after outpatient appointments usually when they’ve said I’m fine!

Trust your instincts...if you are seeing a pattern, there probably is one. Maybe get some help from a psychologist who might be able to shed some light on your situation. Hope it works out for you xx

[Hidden]

Is there something bothering you at home, is it the way you overthink, if you do, you are certainly not alone in this. Whereas in Hospital there is so much going on you don't have time to think. I hate pain meds but have to take them and feel the consequences if I don't, Maybe at home try and get out a little bit to refocus even to the shop or for a coffee. We don't have to let this rule us, we need to take control too.

[Maus123]

Hi Maureen. I can't add anything from my own experience but it looks like the ladies have you covered.

I do however want to send you a hug, best wishes for the new chemo (it'll work, you'll see), and I'd say listen to your body and stay where you are feeling best.

But whatever you do, don't tell your man about the onions in the fridge or yours (the onions, not the man) will surely end up there as well.

Xx. Maus

[tara108]

Hi Maureen. I have been a therapist for 40 years and just want to reassure you that with this disease, it's totally normal what you are going through. We deal with so much uncertainty, physical, mental and emotional pain with the ongoing nature of this dreadful disease. It's true that anxiety, panic attacks, fear, grief and other psychological states can have impact on our pain, but I would also say, pain is pain! Also most of feel tense and scared at different times.

If you can find a good psychologist who knows something about cancer, it may help if you feel it would support you.

Sending hugs from Australia.

[Artgreen]

I agree with Tara, I’ve been a psychotherapist for 13 years and stress can increase pain as you hold tension in your body. You might like to try guided visualisation or meditation along with tai chi or very gentle yoga to help manage the body and mind together if you feel able to move.

If not, talking it through to unravel your fears may allow the emotional distress to be explored and allow it to pass. Being in the now and actually doing relaxation techniques can lower pain quite dramatically. So can writing about it in a journal.

Find a therapist on your wavelength though who is qualified and accredited.

You may find your GP or Macmillan nurse can find some free resources for you.

Good luck

Love

Alex x

[Hopefulgal1]

Dear Lymetree I understand this completely! Just had an 8 day episode in hospital however instead of my specialist hospital ( safe feelings) it was a local ( couldn’t wait to get home!) so you are not alone. I have cbd oil which relaxes me and is natural. I have a ton of pain meds too. Meditation has helped me a lot although sometimes I’m too stressed out to do it.. so really all I can say is the advice above from all the educated ladies is fantastic and I do hope things get easier for you. Much love and a gentle hug. X

[Lily-Anne]

I can’t see anything wrong in wanting to stay somewhere you feel safe. If there were any problems that needed observation they wouldn’t send you home but I think you know that? Do you feel unsupported by your palliative care team?

When I left the hospice in June they signed me off with my papers and DNR and wished me luck for the future. I felt a totally irrational wave of panic. Good luck? But what if I wanted to come back? Did this mean they weren’t going to care for me in my final days as promised? I really wanted to be discharged now I felt completely alone. I’d been discharged by Macmillan and oncology and now the hospice. It was several weeks before I met a palliative care nurse but meanwhile my palliative care doc had cut the cord too.

Your cancer whichever grade won’t change dramatically overnight my grade three still took months. The brain is a powerful tool and pain takes you to your safety net. That doesn’t mean it’s imagined it more likely means it’s managed better in hospital

I really feel for you this is a scary life to lead until you guide it back to where you want it to be. Most of us have our hands out for the safety net

LA xx

[lorraine71-Australia]

Hi Maureen. I

; sorry that you can not get your pain under control ,it's hard to feel like you can take more treatment when you are trying to control pain ,I have a palliative team who come to the house but my most helpful is my lovely GP he has me on Targin 20mg at night this can get me through the night, about 3am or4 in I try to go longer if passable.

at this time, I take my day one of Targin 15 mg and one Endone and a Panadol this will help me most of the time to get through till I take my next 20 mg Targin.

I can take a Endone if needed the Endone will kick in about 15 1/2 hour it's a fast release the targin is a slow release,

You need that pain controlled so then you will be able to get your head around treatment I hope this is soon Take care Lorraine xx💙💙

ps the 2omg of Targin is still a low dose it can go to 100 mg so there is plenty of room to move I can now feel a couple of tumors, so I don't know how long this will last but as I said my GP is great he will even come to the house if I need him to increase my dose.

[Lymetree]

Thanks for that sounds like you have a great GP, we could do with more of those! X

[scraggs]

I would also get the anti anxiety drug.This is not easy. I know when i felt really sick my husband did things around the house and I felt guilty but I honestly felt I was on my deathbed. I also have mucinous ademocarcinoma stage 1. I .I went home the day after ovaries, tubes, omemtum, appendix and lymph nodes removed.lol I feel better at home. The hospital is not too far if I need it I.hate the hospital because its so full of germs I have heard that that type of chemo dosen t work well on mucious and the bowel one could be better.When it looks so bleak and you feel so bad just make it through. You will start to feel better.Sending love,hugs and prayers.