Nothing salacious simply that i promised to keep this blog updated and its been weeks but the title may have attracted a wider audience.
2 September was hospital day so the children (5 and 3) stayed at my wifes friends the night before so we could get to the RVI for 7.30am. Kids love sleepovers. I wasnt looking forward to mine so much! My wife was nervous but i was calm as we waited in ward 45 and thankfully i was first on the list so i got my stockings and suspenders on (ok stockings) and gown and got ready for the show. Bizarrely the nurse then took the wrong patient down and they only realised they had the wrong man as they were about to knock him out. It did little to ease my concerns. However what seemed like 5 mnutes later i am in bed at ward 47 hearing a nurse tell me to press a button if i feel pain. The button was linked to a morphine machine. I remembered morphine from the year previous when i had my melanoma removed along with two toes. Good stuff i recalled so i had a good press. It was set up not to respond to idiots like me who pressed multiple times and only gave a "shot" once every 5 minutes. Needless to say Tuesday I felt rotten as I had sickened myself. However the ward was quiet with John who was a lovely chap in the army who had infected his arm and Bill a sharp as a tack 90 year old ex chatered acountant who was equally nice and had had a fall. Just the three of us...bliss.. we knew when to talk and when to be quiet and the nurses remembered me from last year and it was all as pleasant as can be. The drains in my legs were not unexpected but i had visions of two small syringes attached to a tube not huge plastic bottles on the end of a one metre line!! They were a pain.
The days were slow and i knew my stay would be as much psychologically wearing as it was physically, visitors came and went which helped pad the day out. The meals were hit and miss. I managed to work out how to get tv on my mobile phone which was such a bonus. Throughout the hell the nurses were the constant reassuring and calming influence, just brilliant care. The ward filled up as the week went on with drunken lunatics and ne'r do wells and the odd cumbrian who had put a hammer through their hand and with some sadness i saw John and Bill leave and also others come and go. I felt like the lifer such as Morgan Freeman in Shawshank Redemption. My wound got infected so i felt unwell for a couple of days. I was now on Tramadol for pain but actually my pain was fine and i used Tramadol to sleep and it was brilliant. It sort of sent me to an 80% sleep state where i could not move a muscle...fabulous.
Because my drains were still performing and my wound infection i did not get released on day 7 as promised but on day 10. This was tough and every day was a battle of the mind as I now felt well physically. I was allowed the odd shower now (bliss) at dressing changes and i recall looking at myself in the shower, three toes on left foot from last years op, huge scar down left side from this years op and two plastic cables hanging out of me filling up two containers from my leg. I did not know whether to laugh or cry, I felt like some sub human in a sci fi movie (like Keaunu Reeves in Matrix when he is "born" with all the tubes coming out of him) and hated cancer for eating away at me. But every night in bed i would stare at the wall opposite and i would shake my head and i would will myself not to let cancer win.
On release I could hardly say goodbye to the nurses without tears, something just came over me and they too (as they knew my predicament at now being stage 4) also could not hide their feelings. I cant speak highly enough and I have since written into the Evening Chronicle and the Journal to tell the north east how lucky we are to have them and thankfuly both papers published.
My specialist cancer nurse (Sharon) is also wonderful. My wife and I met her at my discharge point for an honest chat about what next. I meet my oncologist soon I am told and we will decide whats best, "watch and wait" (which feels uncomfortable i must say) or clinical trial or some other option. I get the impresssion that Chemotherapy is one they want to keep up their sleeve for another day. My wife is god at asking the horrible questions like "what will it be like at the end" whereas I am saying i dont insist there will be an "end". The "end" if it does come sounds horrible with talk of if it gets into my spinal area i need to get to hospital quick or else could be in a wheelchair and similarly if i have a fit or headaches etc i also need to get to hospital as melanoma goes for the brain most times but they can do things in 24 hrs.
So the elation of leaving tempered with the reality that this is just end of part 2.
Home is great isnt it... just stuff where you know stuff is. The children seem to be completely non plussed by my absence which is down to my briliant wife. However she is looking strained, gaunt and unwell, in fact i look better than her!. She is busying herself to the point of a beakdown and refuses to sit down and relax or accept she can take time out and we sadly end up arguing as she reels off a list of her responsibilities.
I am still in some difficulty and cant move well by mid September. All my friends and family and neighbours are sending great messages of support, local mums are bringing hearty dinners, People from yesteryear are in touch which is great and some unlikely people from work sent individual get well cards with lovely messages. This support is fantastic and its important to feel valued and wanted.
I spend most of my days on the Ipad rather than TV. I am busying myself with lifes burearacy so I am looking at all our household bills, I am adding Victoria to all our utilities and bills "just in case" so its easier to sort things out in the future. I have added her to my bank acount "just in case" etc etc. I am trying to recoup our deposit from Thomsons for next years Florida trip which now sems unrealistic. My insurer will no longer cover me (dont blame them really) and others are talking silly money. I havent had much work contact which can make one a bit paranoid so i drop a line from time to time and get the impression my boss is simply trying to make me forget about work ( i do need saved from myself sometimes), on good mental health days i thank him for this and on bad days I feel there is a sinister plot to get rid of me. The mind is a powerful tool. I have had some really good days where I think about what i want to do and the future and really bad days where i search the internet for the best song to play at my funeral. I assume all perfectly normal. As my nurse says "make sure the good days outweigh the bad but dont chastise yourself for the bad days".
My frustration at nothing happening is finally broken when I get my appointment for the oncologist, Ruth Plummer, on 2 October 2013. Now i wanted to meet Ruth the afternoon i was discharged from hopsital because thats me, so this wait has seemd an eternity. In the meantime i have been in and out of the RVI for wound checks (again the nurses in plastics are wonderful and i know them all from last year) and dressing changes and having a blasted seroma in my groin aspirated (posh for syringed). This seroma is actually what is making walking difficult, i am not used to walking round with a huge bulge in my groin area...hahaha. The wound is healing brilliant i am getting more movement as September draws to a close. I do get lots of fluid on my left leg throughout as well so need to keep my leg up lots, its more "leg up" than "leg over" at the moment unfortunately.
What else has happened? I have been to the pub twice with neighbours and strangely alcohol is not high up on my desires at present. I love a drink with the best of them but i am definatley a go out and have a skinful and a laugh rather than a one or two social drinks. Now every bloke i know wants to take me out for a pint and the trouble is I want t see them but i cant be bothered. The weather has turned so the nights are dark and at age 41 (i know thats young) sometimes I just want to be on the sofa with the wife. However i will need to make the effort and in truth once out I love it, i love pubs, i love people, i love to laugh and well.. its just what I do.
My good mate Wrighty took me to the cinema to see "Rush" which was brilliant. Before that we went to Nandos, I was a Nandos virgin and it was actually ok in a corporate portuguese chicken type of way. Wrighty has myeloma and was diagnosed 3 month prior to me. He gets where i am, he has been where i am now and he is in a better place mentally than me. He is a good confidant.The film was very good.
Macmillan came to see me. It was ok, I dont know how i feel about it. These people are really lovely but for me I am not ready for them yet and to be fair my nurse understood that. It just makes things feel final and I am a long way off feeling final. We talked about faith which is a thing I have thought of lately, I am not a church goer, I dont know what i believe. I went to sunday school and church as a young boy and gave it up as boring and then as i grew into an adult they were places i went for weddings and christenings and felt slightly uncomfortable and hypocritical to be in them without having a strong faith. I have found myself envying those that do have strong faith as i believe they would derive more comfort than I am at present. However I cant make it be so and I feel hypocritical caling out to God in my hour of need as i dont feel i have paid my subs over the years.
The children are wonderful, they are just as well and badly behaved just as adorable and challenging. They are what its all about for me, and my beautiful wife of course. I find myself thinking now in terms of my legacy both financial and emotional for the benefit of my children and wife. So I have this weird mental state where I am positively fighting cancer as I want to be in that small % who go beyond 5 and 10 years but then sub consciously I am making plans for my absence. In doing so I feel I am not completely fighting cancer as i am making plan B as well. I dont like that feeling.
My wife and I have sought advice to change our wills. Legally necessary, emotionally awful. leaving my half of the estate in trust with two good friends rather than my wife in case she should remarry and split from a future partner so he could not have half of my part of the estate. Just weird. Ensuring my brother will be guardian of our children should Victoria die and also ensuring he should not be trustee and he having to go to two trusted friends to request funds from our estate to help him raise our children.. weirder still.
We have bought a new car trading in the blue hearse (Ford C Max) for a Nissan Quashqai. I am pleased as this needed done and we are doing it when I can help and do all the research etc. We pick it up next Wednesday. To show the subtle changes of life wih cancer Victoria will be the owner and registered keeper. This is the first time this has hapened and reflects the shift in life cancer presents.
So whats next? Today is Sunday and I am going to crack getting my son, James, riding is bike. On Monday its off to the bank to get the money out for the new car. Tuesday is the long awaited meeting with my oncologist and Wednesday we collect new car. Life goes on even with a shadow hanging over it and we all need to get happy...
Here is something to be happy about, contrary to my prediction my beloved Arsenal FC are top of the league and looking good for it, lets hope it continues.
These blogs are just a random emptying of my mind I should really structure them more, it might help if they were weekly not monthly
Until next time..
