Well, thought it was time to tell you all about my continuing experiences at the hospital out of my area.
Operation day came and set off to be there by 8am as requested (an hour in the car so a really early wake-up call!). Was walked down to Nuclear medicine dept with my legs shaking because I knew how painful these injections were going to be. Ended up having 8. They didn't lie, it was VERY painful! Went down for Op at 2pm and finally back up on ward by 6pm. Surgeon told me they had removed the Sentinal Node plus two more that were showing 'hotspots' from my groin. I had a back slab of plastercast on my foot to keep my ankle immobile for the skin graft to take and told on bedrest for 48 hours (oh, the indignity of the bedpan lol).
Surgeon came back later and said I could go home the next day, but the nurse standing behind him was shaking her head no. When he had gone she came over and said that there seemed to be some confusion as they had me down for 48hrs bed rest and if I went home it would be less than 24!! I was happy to go but they persuaded me to stay another night so I did. On the Friday morning the surgeon came around again and said to me "why are you still here? I told you to go home 2 days ago". I said come off it, I only had the op two days ago and he admitted then that would have been too early.
I told him the nurses had said no and he wanted to know who was in charge of his patients, him or the nurse? I said obviously the nurse as I was still there! I then asked him if I could go trick or treating (as it was Halloween) and he looked at me in shock. I said I thought I would continue the bandage theme and go as the Mummy lol! Luckily he laughed and told me to give it a miss this year. That afternoon the physio came and showed me how to use the crutches properly and then my friends came to get me and take me home.
I realised a few days later that no one had told me how to take care of the groin wound so I rang the ward but was told that skin glue would have been used so to just keep the area clean when washing and it was ok to use Aloe Vera gel. I then returned a few days later to the Plastics Dressings clinic. The nurse was horrible, tutting when I was taking so long to get into the treatment room on my crutches. She then started to cut away the bandages and plaster but was using her scissors right over the site and it was getting painful so I had to ask her to approach from the opposite side so I assumed she hadn't actually read my notes to see where the wound was.
Then to my astonishment the melanoma Nurse made an appearance! I asked her if she had got my message to ring me but she said she had but by that time I had already had my Pre-Op clinic appt so didn't think it worth while ringing me back (I had left the message over a week before my appt). She looked at the site and was pleased with the graft and said to come back in a week but she wouldn't be there then and not sure if her colleague would be either (so consistant with her behaviour towards me all the way through!). Well, when we went to make the appt my friend asked if the follow-up with the Consultant could be made at my local hospital as he has clinics there you would have thought we had asked for the Earth. The receptionist got all irate and said it would have to be "sent upstairs" as if this was a big deal. My friend quietly informed her she didn't care where it had to be sent as long as we could get an appt convenient for US for a change!
I had to go back for a further dressing this week and both my daughters came with us. My eldest insisted on coming in with me because she wanted to take a photo on her phone so she could show her sister what I had done. I had the same nurse as before and she muttered "I don't know why you people want to keep memento's of this sort of stuff" as my daughter took it. She then dressed it again but with a dressing that was a bit smaller than it should have been because she didn't have any of the right size. Then she went off to write the letter for my further dressings. When she came back she said "here you are, take that to your Practice Nurse". I explained that I would not be able to get to my GP as it was too far to go on crutches and I couldn't drive for 6 weeks. She didn't believe me when I said there was no one available to take me then said "oh well, YOU will have to arrange a District Nurse". She then checked my donor site, left off the dressing and squirted some E45 cream on and said to me "you can do this, go on then do it". It was said as if she expected me to refuse! My daughter was fuming when we came out from there and when she told my friend how the nurse had been towards me she said she was glad that my daughter had also been a witness to the way I was being treated by staff at this hospital as she was beginning to think that maybe she was imaginning it lol.
The girls took my letter to my GP's on Thursday and I phoned the District Nurse who arranged to come and see me Friday. When she arrived I had to show her that the dressing was wet and I had fluid seeping out from it. She asked for the dressings pack from the hopsital and was not happy when I said I wasn't given one. She did the best she could with what she had on her but when I told her what had gone on at the dressing clinic she made a note of it because she said the nurse should have given me a proper discharge letter with instructions and packs for what was needed and I SHOULDN'T have been the one to organise ,it should have been that nurse. She came back later with a treatment plan and other info and said that she had phoned the clinic at the hospital but this nurse had refused to speak to her so the District Nurse made a complaint to that nurse's manager about how badly she had managed my discharge! Let's hope I don't have to go back there again in a hurry lol.
So, here I am with an oozing skin graft sore groin and trying to get about with my crutches but at least I can now put my foot down to the floor! Oh, and in the post today I have had a letter from Housing Benefit to say that they are stopping my benefit as I no longer have a dependant living with me and I have an interest in the marital home in Essex. Not sure how I'm supposed to pay my rent now as that interest is in bricks and mortar and my estranged husband still living there and refusing to sell. AND a letter from Council Tax Dept and Court Summons for non-payment of Council tax demand for 4th Dec.
Take care
pheonix xxx
FormerMember
Oh Phoenix, talk about a rotten time. It can only get better, can't it? I'm glad your district nurse made a complaint. These people shouldn't be allowed to get away with the way they treat people. Some of them are clearly in the wrong job.
Don't know what to suggest about your houseing benefit etc. It's all a bit messy isn't it? Can your estranged husband help out while your get something sorted? If he's sitting pretty in the marital home, I reckon he owes you big time.
You could always let the council tax people and the housing benefit people take you to court - they'd probably lose the case, but you really don't need the hassle at the moment (or any moment come to that). Oh - you have to attend court on the 4th December. Are you going to be well enough? My advice is to borrow a wheelchair and a pusher, apply pale and poorly makeup and snivel into a lace hanky. Get a solicitor. You'll get legal aid. Tell them you're being treated for cancer, tell them what money you have and ask them how the bloody hell you're supposed to earn enough to pay your bills when you're poorly. Courage, my darling!
What about Citizen's Advice Bureau? Have they got one at your hospital?
Good luck. If I think of anything clever I'll get back to you. In the meantime, try to relax and concentrate on getting well.
That nurse sounds horrible, and you end up wondering if she hates people so much why is she doing that job? It's terrible when you are expected to organise things you don't even know about, and I'm so glad that you have people on your side to help at home. Hope it helps to blog, and I hope her hospital read it and recognise their faults. I've been very lucky with my nurses and never had anything but kindness, so your idea of changing hospitals to one nearer you will hopefully get you some real tlc as well as a shorter journey.
Crutches - yes, there's an art to that and it needs to be learnt. I had an ankle injury a year before I got diagnosed with the cancer, and was given crutches. I was useless and almost fell backwards getting into the taxi outside the hospital! Then there was the time the bus driver wouldn't stop the bus....
With the housing situation, I'm afraid it's going to have to be time for someone to go down to the Citizen's Advice Bureau on your behalf to see about your ex being forced to help - though heaven knows it isn't the right timing to sell a house. He surely cannot want you to be in this situation, however "amicable" the situation has been up until now? Does he know about all of your problems? If he doesn't want to sell, can he send you regular money to pay your rent? It all needs sorting by a solicitor - which is the last thing you'll feel like tackling now.
Oh Phoenix what a bloody nightmare!! The hospital you were attending sounds like someone's idea of a very bad dream. How on earth did you manage to keep your cool when you were under such attack from cold, uncaring and neglectful nursing professionals (and I use the word lightly)? Someone, somewhere should pin a medal on you, for undergoing such pain and then being able to get on your crutches and carry on your journey! I take my hat off to you, lol All joking aside, I don't know how you stood it. If there is one thing in this world that I HATE, it is cold, uncaring and unkind people - they give me the pip!! Now H.B. Dept has decided to jump on the bandwagon and beat you over the head with their paperwork, AND the Council Tax Dept - I swear you have to take a test in insensitivity before you can enter their portals lol. I can only wish you brighter, better days ahead, when everything shall be worked out in your best interests. with love from kate
The way yuu have been treated makes me wince with sympatheic pain. How very dare they treat you with such indifference and callousness!
As for the benefit situation, aren't you supposed to be having some Incapacity Benefit to go with your housing benefit. They surely can't stop all your housing benefit, only the portion for a dependant.
As for the Council Tax, words would fail me if I weren't such a gabby cow. Surely you are entitled to some reduction for being sick with cancer, and not being able to work. You could try and point out that you have been in hospital and havent been able to sort it out., but if they satrt going on about it, just tell them you get the picture and start agitatinig further up the ladder, or with the Complaints department of the local Council. Tell the Court that you can't get there on your crutches, and ask for a video link. I don't know if it will do any good, but if you don't ask, you don't get.
Going to the Money advice Centre of the CAB is a good idea. If they take up your case, they should be able to tell you what benefits you are entitled to now. The CCCS, are good at credit queies, and even if you don't need them, other people with loan and credit card debt can benefit. The Citizen's Advice Bureau -and Macmillan can help with beneifts available. I think that partners are only responsible for child maintenance, and your so called "interest" in bricks and Mortar is not available to you as your separated husband is living in the property. You cannot go back to live there because you are tied to your cancer treatment in the local area. (not sure of the validity of that argument, but it is for them to disprove, and it all takes time.)
I do hope you manage to get help to sort all this out,
I am so sorry to hear things have been so difficult for you. After all you have been through a tiny bit of compassion and proper professional care would have gone such along way to helping you feel better. Why on earth do some people chose to be in a caring profession if it is beyond them to be caring.
There must be help for you with all of these bills. I know that if it does go to court they can only make you pay as much as you can afford, even if that is £1.50 per week, so long as you are paying something, there is nothing else they can do to you. Please do get proper advice from the CAB and don't MacMillan offer financial advice?
Sending you lots of warm and positive wishes that this will work out for the best for you.
One of the inspirational quotes on Haburats forum goes along the lines of life being like a jigsaw, and even though we cannot always see the whole picture, the pieces will always fall into place.....
