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Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

Pain needs to be sorted but how ?

JSBach_addict
Posted by

My husband has small cell lung cancer: also in liver and now also just confirmed it is in bones too. We haven’t found out details yet. Radiation therapy will be fixed probably the week after next. He has dreadful dreadful back pain, also in his legs, and he can barely sleep.  We were sent an air mattress...doesn’t seem to be helping much. As fast as docs prescribe more pain relief ( this week) it never catches up with the pain.  It seems to be accelerating. My GP told me that the chemotherapy is likely to be attacking the cancer in his bones which will increase his pain too.  Is it possible for a DN or hospice nurse to come round one evening and deliver a knock out dose of morphine so he can sleep and rest at least one night ? Life expectancy is only 9-12 months if chemo is successful but given the level of pain he’s beginning to wonder why bother. Does anyone have any ideas ? 

Just trying to do the best thing 
Granny Sue
Posted by

Can he have sleeping pills might be worth asking ? Pain control does seem to be hit and miss in our case they have never got on top of Bills neuropathic pain in his rib increasing the pregablin now added to all the other pills he is fed up with it all .I suppose you might have to push a bit with the medics in my opinion not to have pain is the most important thing at this stage .Hope you get some help having to witness our loves ones in pain and just generally deteriorating is agonising to say the least .Good luck keep posting bless you xx

Granny Sue

JSBach_addict
Posted by

Thank you for understanding. Care is so fragmented. Should I press the oncologist or the lung nurse or the palliative care nurse or the GP ? So difficult to know who to ask. You are so right about the pain of witnessing.  What is neuropathic pain ? 

Just trying to do the best thing 
Granny Sue
Posted by

Palliative care nurse she should be able to liaise  with the gp .Neuropathic pain in Bill's case is due to damage to nerves in the rib area  .Bills primary  was oesphageal cancer and part of the op he had involved breaking  the rib to get access to the tumour .He had pain there ever since . He developed brain met and is now at the point where there is no more treatment and just dealing with symptoms,  He is gradually losing more brain function so it's almost like early dementia . Well we are getting on with it as best we can. This Carers forum is a godsend don't feel so alone and people on here really understand . Hope it gets sorted take care x

Granny Sue

JSBach_addict
Posted by

Dear Granny Sue thank you. You and Bill have a tough roll of the dice too.  Best wishes 

Just trying to do the best thing 
The BODACH
Posted by

HI 

I'm sorry to read that your husband is still having constant pain and so far the prescribed relief is not blocking it out.

We have a this leaflet which might be of interest to you http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Pain/Describingpain.aspx This leaflet gives all the information you need to understand about pain and how to talk to doctors and nurses about it.

Was you husband just given an air mattress or did he get a NHS hospital bed to go with it and the pump to activate the movement of the mattress, as they use in hospitals. Having a word with the OT dept at the hospital might help.

As far as pain relief goes rather that your husband being given a high dosage knock shot each evening, which I think would mean more overnight supervision by yourself on him which is not what it want as your are also trying to keep up with your sleep has anyone suggested a syringe driver that the nurses fills up with the prescribed pain relief probably in combination form, daily and the driver delivers a metered dose at regular intervals, from setting up it takes about 2 to 3 hours for the medication to take effect then the driver releases the next dose to top up which once the correct dosage and correct frequency have been established might see your husband getting a good night's sleep (and you) and relatively pain free.

It is worth having the discussion which may lead to other avenues of suggestions being available.

Ian 

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JSBach_addict
Posted by

Dear Ian , thank you. I will have a look at the leaflet.  Your comments are helpful. 

The air mattress is sort of like a lilo with holes in it. I lay on and thought it seems quite comfy, but Mark dislikes it. He’s quite weak, and finds it difficult to move once on it.  I’m going to pop it onto a different bed so he’s not so high up. Palliative are supposed to be getting us an OT visit.  I don’t know how a hospital bed could be got into our house...I think Mark would perceive that as the beginning of “the end” so that’s not going to happen for a while.  
We are seeing oncologist tomorrow so I will raise this ...if radiation increases pain I don’t know how Mark will manage.  
best regards 

Rose 

Just trying to do the best thing 
The BODACH
Posted by

Hi Rose

The lilo doesn't seem very comfortable and I can see why Mark would find it difficult to move around it on it.

I don't know if it's been suggested to you but have you arranged for a Social services Needs assessment  for Mark. This is carried out by your local authorities Adult Social Care Team who will talk to you to get an understanding of what you need to make life more comfortable for Mark now and in the future, it is essential that you look to the future for any help you may need. You don't have to accept any of the recommendations initially made, you can always go back to them in the future, but what you want to do is get on their radar as soon as possible.

See this on How to get a needs assessment 

The assessment does not only cover Mark there is a separate Carers needs assessment explained  and how to get one which is for you as a his carer and you form an important part in the care of Mark and your needs and requirements should always be part of any plan.

These assessments are free of   charge and everyone is entitled to have one and it doesnt hurt to find out exactly what is on offer and what benefits and help you both you may be entitled to and I would urge you to make the phone call as soon  as possible.

Please keep us informed how things progressed and remember to effectively look after Mark you must first of all look after and take care yourself as a priority.

Ian

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JSBach_addict
Posted by

Dear Bodach. You are a star. Thank you !

I gather that a bodach is a sort of Irish peasant ? Really ? x 

Just trying to do the best thing 
The BODACH
Posted by

Thank you

I prefer this definition

bodach (Scottish Gaelic pronunciation: [ˈpɔt̪əx]; plural bodaich "old man;!

Ian

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community ● 

Living with incurable cancer - incurable patients only / End of Life

Call Macmillan Support Team 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

The BODACH is LIVING WITH A ST● MA

JSBach_addict
Posted by

Haha v informative Gaelic thank you. 
After nagging palliative care, we’ve seen their specialist doctor who has adjusted meds ( bone pain apparently does not respond so well to morphine sulphate ) and gave helpful advice about heat pads and other drugs, and occupational therapist and physio are coming next week. Definitely worth persisting to find the right response. 

Just trying to do the best thing