http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-kiss.gif We can see that fat lady but she ain't singing yet !
second attempt ...
The last 10 weeks out of 52 have been a journey of some sadness, a little pain, some awkward conversations and through it all some very touching and funny moments. Mick now knows that he is literally on borrowed time but it does not stop him having some fun. On Sunday when it was a glorious day here, his fellow roomie at the posh digs (Eddie) invited his buddies over for an impromptu concert on the patio. 2 hours of old blues and singalong music led by our retired music teacher Eddie. All the staff joined in and everyone had ice cream cornets at half time. Mick was wheeled out in his bed sporting his neck ice pack and laughing at everyone that was dressed and sweating in the sunshine as he was totally commando and enjoying every moment of it. What goes on under those sheets stays under the sheets!
Monday morning Mick was still getting a lot of pain in his neck from the undiagnosed problem, he was also very fed up that he had felt the need to abandon ship on the cruise plans. I was relieved , although I would have moved heaven and earth to make it happen for him I was terrified that some silly thing that I had not got a plan for might crop up. TG if you are reading this I hope I have saved you and Karen from waving at a bunch of total strangers as the ships cross in the channel on Saturday night!
Mick told the team at Drs rounds on Monday afternoon that he wanted to go through his advance wishes with the palliative care consultant and hopefully that would give him some clarity so that he could decide if he should go for the MRI scan and possible RT on his neck.
Tuesday morning the consultant asked Mick if he wanted to have this chat now and with me present or not… Mick wanted me there to ensure that there would be no ambiguity going forwards. He also wanted me to hear first hand what he had been mulling through over the last 24 hours. So I pulled up a chair and a box of tissues and placed myself just behind his line of sight so that he would not see if I was leaking .. Mick hates to see anyone cry and he himself has probably only cried twice in his life once after the ManUtd Munich air disaster and the second time when his beloved Nan died age 99.
So the questions started ..what can I expect going forward? Are there treatments I can refuse if I want to? Can I go home soon? Why is it that I feel Ok but everyone tells me I am very poorly indeed? Will you make sure I get back in here when the time comes? Etc. etc. This was clearly going to be one of those elephant in the room days.
Some of the questions I expected, the answers we got were also mostly expected but some were not. It seems cancer has many endings and in Prostate cancer much depends on its progression path, extensive mets, brain lesions, soft tissue secondary disease etc. In Mick’s case he has been told that he can expect to get progressively weaker less interested in food, more sleepy and that at some point he will start to hear that fat lady singing (metaphorically speaking) the hospice will make sure that he is pain free and comfortable. At this point I think I was actually pinching myself so hard I was in danger of crying from self inflicted pain. The reason they are concerned for him right now is that his albumin (protein ) level is critically low so I whispered to him that he needs to eat more meat, eggs, cheese and fish ..so sorry Jane P but at this stage lettuce is probably not going to cut it.
Getting back to the original purpose of the session is it worth the MRI and RT?, absolutely not, the transfer would be painful and difficult the MRI would be very uncomfortable and the RT may not fix the neck problem and could leave Mick unable to swallow at all …F..k that as Mr Connolly would say.
So Mick has elected to have anti biotics as long as he can take them himself for any future infection. A DNR is in place and he does not want to be given anything through a tube other than possible blood transfusions if they continue to help a bit.
Large elephant duly evicted.
Wednesday morning comes and I arrive at the posh digs to find Mick in a very lively and cheerful mood, he is bantering with the nurses and looking better than he has in days. The new system of giving him a very strong but short lived pain killer is making moving him pain free. He is using an experimental bed pad which allows a slide sheet to be in place under it so moving him about the bed is a piece of cake. He knows that Si superman is coming in this morning so he wants to get washed, shaved and in fine fettle asap. He has eaten a large fried egg on toast (sorry JP again) The doctors come to see him and he reports that the new pain management system is working well and that he feels good.
I tell Mick and the Drs/nurses about my plans for Mick’s sailaway party on Saturday, we will use the conservatory, have bunting, streamers and Mick can be taken in there either in his bed or in his wheelie (minus the back brace YAY) Karen, Mark and the mad hound will be there and we will ‘face time’ the gang on the ship. I am taking in Canapes and some fizz and we will all toast them off on the cruise. The gang will keep a live blog right through the week so that Mick can still feel involved.
Si Superman arrives and after 30 minutes of lively banter the therapist arrives and asks Mick if he would like any complimentary therapies, he opted for a manicure (not his scene at all) and an oily massage ..TMI for Si and I so we nip out for coffee. 45 minutes later a smiling and perfectly groomed Mick is waiting for us to re- enter his boudoir he seems to have enjoyed the pampering. A much better and far more cheery day.
Thursday morning and Cruise Plan B is activated. Leda and Stephanie flew in from Miami this morning and came straight up to see Mick so they could have a few hours with him and say goodbye to their lovely friend .. a lot of tears and laughter Mick did not flinch too much!! His neck pain has gone completely so clearly not another compression. All in all a good call not to go for the MRI and RT. He has felt good all day and has eaten loads more today. I went to see Si, Ness and the girls after dropping the ladies off at Newark rail station and stayed to have tea with them, Nice Pizza Si xxx Nees and the girls.
Next Saturday the Californian contingency Chris, Anita and Gary will come up to say their goodbyes. This means Mick will still get to see all our American cruising buddies.
So many visitors lined up for the next 3 weeks we are going to be very busy .. Mick is looking forward to 2 new goals, being home end of next week and Leicester in 3.5 weeks time.
I am so very proud of my laughing, smiling and very loving Husband. And thrilled to have all of you as our friends