Becoming increasingly useless

Hi Jkg I am so sorry to read this as it sounds similar to what I went through some years ago. I had a groin dissection and it caused nerve damage. My left leg slowly got worse and because I was diagnosed Stage4 my GP referred me to our local Marie Curie Hospice. They were fantastic and when I told the Occupational Therapist how worried I was that we might have to move house because of the stairs, she arranged for me to see the Social Worker for our Council who told me there was no need to move, that they would supply a stair lift! It was installed four weeks later! We had already extended to the side of the house and installed a toilet and walk-in shower. Then we were told because it was a necessity we qualified for a one band reduction in our Council Tax! We couldn’t believe it.

I am now struggling with the other leg due to osteoarthritis and can hardly put weight on it. I use double crutches or a wheelchair.

I am in Scotland, I don’t know what part of the country you are in but some councils will help if you are referred by a Hospice! I know someone down south who rented a Stairlift via their Local Council, so maybe that is a possibility! Have you been referred to a Hospice yet and if not, ask your GP for one. It can’t hurt and they can usually help in some way. I know exactly what you mean by feeling useless but to be honest our 3 grandchildren don’t seem to mind that I can’t run about but I can play board games etc with them and we have fun. I just take it a day at a time!

Hi

That is really good advice. I have an appointment in mid December but have asked for that to brought forward. I will then ask about our local hospice. I might give my GP surgery a ring as I have a nurse that has visited me once but we agreed she didn't need to come again until I asked because I was doing so well. The worrying thing is once this cancer decides to crack on it is fast. At this rate will I last long. If the iliac bone is completely taken over by tumour then what next. I don't mind living with a wheelchair etc just as long as I can spend more time here. I have 4 grandchildren under 4 who are changing so fast. This sleeping pill hasn't worked well, woke up after 3 hours. Old fashioned hot chocolate, paracetamol, probably a little cry then hopefully sleep again.

JG 

Hi JG, I hope you are now asleep, unlike me! I have sent you a Private Message on the site, please let me know if you get it. Next to your avatar once you sign in, there should be a number 1 it is next to the left box that tells you about posts!

Thats great, you contact whoever you need to. Take care.

Hi

I just can't see any private message. Had the most awful night and now having had all my medication I have just sat and dozed waiting for the pain to dull. I had got stuff planned and though I feel very tired and drowsy my husband is with me and I am off out after having something to eat 

 I know sometimes the pain is worse when I panic about it and I'm not relaxed. Let's hope I can get a better sleep tonight. I shall get my husband researching re help as you suggested x

Hi Jkg

I think if you contact your GP, they will organise for a palliative care team to visit. This I think can also include an assessment of your needs, eg stair lift and other 'aids'. 

I hope you are able to get some help so you are more comfortable.

Sorry to read you are struggling at the moment, and sending a virtual 'hug' and best wishes.

xxx Kate

Hi Jkg, In actual fact I also had a horrendous night due to pain. It always seems worse during the night doesn’t it. Makes the night so very long. I tried everything but nothing worked. It was my husband’s birthday yesterday and we had booked a table for lunch. Then our children and grandchildren came late afternoon with cards and gifts and our eldest granddaughter aged 12 actually made his cake, it was lovely. I came to bed earlier than usual thinking I would fall asleep right away, but it didn’t happen.

If you scroll to the top of the page, there is a Green Band. On the left it says

McMillan Cancer Support……then Info and support. If you go all the way to the right side of the green band you should see A lightening Bolt, an envelope and a bookmark. If you see a number on the envelope (not the Lightening strike as that is the number of recent posts) but if there is a number 1 on the envelope, then click onto it. You should see a dropdown and at the bottom left it says “view all” click that and you should see my message!

It is not the easiest site to negotiate so any problems, maybe contact Admin!

I hope you get it this time! Anyone else with advice could you please contact Jkg, thanks!

Hi

I still can't seem to find this private message but I am on phone at the minute 

 I will see if it becomes clearer on main computer in the morning 

 Jg

Hi Jkg 

I'm very sorry to read of all that's been happening for you lately. I sympathise and empathise with you as I was in similar pain trying to climb stairs at one point. I can see that you have had great advice from anndanv and once you get sorted with aids, it should help you. I bought a shower stool and eventually a walking stick from the well known online retailer. The limp was doing my back in and i coudnt stand on that leg to wash my feet. Unbeknown to me, my pelvic bone had fractured due to the cancer. It was so frustrating and painful even trying to make the bed and I remember getting upset and feeling useless. I was scared of the position I was then in as I didn't know if the forthcoming treatment would work.

I realise that at the moment I am fortunate that my cancer is currently stable after treatment but I just wanted to you to know that I have some idea of how you feel and that you are not alone. 

A x

Thanks, I have a stick, a wheelchair and a scooter so quite fortunate really 

 Just bought a fold up chair commode just to use in the evening when I don't want to be up and down stairs all the time as it is at night when my pain is worse. Not having to bad a day today so think I'm coming to terms with this situation.

JG