Totally failed to live up to my promise to blog regular. on the plus side thats mainly because i am living life and havent the time albeit that includes multiple hospital visits.
But as we end 2013 (nearly) a good time to take stock. I am sort of well and unwell. Well in that mentally i have myself in a position where i am dealing with stage 4 by effectively living as normally as possible, i dont dwell on maybes and what ifs and by being at work and with two young kids and a semblance of a social life my mind takes care of itself. Physically not as positive as with the Pacmel trial i am on the Paclitaxel chemotherapy and the Mek Inhibibitor trial drug do throw the odd side effect. The worst of these has been a rash on my face and chest which at its peak effectively hsopitalised me at the Freeman. The now daily concoction of pills etc for the side effects (currently antibiotics, steroids, antihistamine and two creams) are a constant reminder of my plight along with the three toes, two seromas, 9 inch scar on left groin and wearing a compression stocking. So physically every day i feel a bit patched up ready for battle and its such a hassle remembering which pill when and when to put that cream on or the other. However its a price to pay and i am thankful that by doing so i can live relatively normally.
[FB group] on Facebook i find to be both positive and negative. Positive in that there is so much love and support on the site, the odd insight into something useful to know, some news on trials which could prove beneficial but on the most part its a support network for all of us going through various parts of our journey. The difficulty here is those that dont make it and just lately this has included many men of a similar profile to me, often with young children and a bit of me ebbs away when i look at their pictures, here their partners sad words and think on myself selfishly. Overall though i would rather be in than out and interestingly there was a long debate on the site when a stage one member came on to the site only to be scared witless and horrified by the dialogue and stories of stage 3 and 4 members. She had my sympathy as it may not happen to her (i hope not) but its not compulsory you can unjoin.
I went back to work, boy was that tough after 9 weeks, back into my new job, one where even if i was 100% illness free i was going to be taking a huge step up. How could i cope? Truth is i am sort of coping by the fact that lifes normal pressures dont seem as huge but that said i am a committed employee and i want to do my best and if posible be the best so the constant hiccups i have with treatment, time off etc irritate me and frustrate me. I feel like i am there but not realy truly effective but everyone will feel sorry for me etc. One thing that i did do was a full presentation to my new service which was roughly 80 people at first session and about 35 at the next. At the first i had been released from hospital days earlier after my bad rash. It had calmed from hideous to ugly so i went in as it was so difficult to get a slot or 80 people. I must say i nailed it and probably gained the respect of those there. By the second session a few days later i had moved fom ugly to unusual as the various drugs and creams started to work and again i felt like i was doing my job that i was employed to do. I felt real again. That said in the time through November and December i have spent most of my time apologising to my boss for miscomings from me or the team but i was frank with him that i wanted no favours and he should treat me like the other directors, b*stard took me at my word. Haha only kidding he is actually very understanding and a good mentor but needless to say i find work very hard and even harder on those days i am 75%. I am not sure how long i can keep it going, i am on cycle 3 of 6 now, fatigue wise not too bad really i seem to have all the energy i need but that may be because of the steroids and i cant be on them much longer the doctor says as its not good for me (i have noticed massive mood swings, lots of anger at times and my wife hates it). if i do get fatigue its like one massive wave that hits me perhaps one day in four weeks and i just cant move. i am losing my hair now as well, not in clumps but individual hairs coming out every day in larger numbers and its now noticeable i am thinning. Ok not the biggest issue in the world especially in Newcastle where men with hair in their 40,s is unusual but for someone who has hair and loses it this way its not nice and i dont think i will suit being a baldy.
Christmas has been wonderful. I managed the works christmas party even and got rotten drunk but not embarrassingly so (i think) and i have also managed to see people and spend some great time with the family. Christmas day in particular was very nice, quite calm, a wonderful dinner by Victoria and just relaxing with the children and their presents. Everything i had hoped it would be. I had a bit of a blip after Boxing Day feeling very unwell with a temperature so went to the Bobby Robson centre to check my blood count was ok. I had a bad turn when they took my blood, felt very faint and thought that was me being admitted. Thankfully my bloodcount was fine and after a bit of antibiotic and saline i felt much better. But it scared me and it scared Victoria and again it makes us realise how vulnerable we are.
Today is the 29th and i am going to see Newcastle v Arsenal at St James Park and also catch up with friends. I look forward to it because i feel well today so it should be good banter etc as they are all geordie fans and i am the odd one out. Not sure if everyone will be there but hope so, my good friend Wrighty (who has myeloma) said he may not come due to having just had a cold but i hope he can make it.
On New Years Eve i have my scan for the trial to see if the Paclitaxel/Mek Inhibitor is having any positive effect. I do hope so but then weirdly the three months between my lymph node op and the trial scan my cancer did nothing much so what if that was the status quo, how would we know if it were the drugs or not? A guy at the Bobby Robson was talking to a lady who was on a trial for three years, it was blind and after three years her cancer had not progressed at all....she was taking a placebo! My results wont be known until the 6 January 2014 (good time for a blog update no doubt).
My lifestyle has slipped a bit. My diet is not as green as it once was and i have noticed a tendency for sugary things again..not good. Alcohol isnt massive but when it is....it REALLY IS....so i wont touch a drop then i will have something like todays match with friends and make an absolute pig of myself just to live in the moment, i then may not have a drink again for weeks. I know i should have a couple then be nice and social with soft drinks perhaps but its not in my DNA. We are also going round to a neighbours for NYE so that will probably be a drunken night as well but thats all and in the new year i cant see there being much booze thankfully.
I am really enjoying the children and both are now really developing. Alexandra in particular has blossomed lately and her language is just full on. James is just James and sharp as a tack. Whilst i remain optimistic Victoria did persuade me to put together some memory boxes which i have started. I didnt want to really as it was an admission of some type of end and i am not mentally there yet (where theres hope) but at the same time these things (like getting a will and sorting out financial affairs and insurances etc) are best done when you are well not when you feel you cant crawl out of bed. Anyway i have mad a start and got two identical wooden boxes each with an engraved plaque and they look quite nice. I do want to make some video recording but what do you say? I hope to live for years yet so i think i will hold off video recordings and writing future birthday cards and the like until someone in medical authority suggests its time. Again i suppose the risk is will i be well enough? I look at them both now with feelings of love and sorrow, they are close which i like because it will give them a unity and bond to help them through life. I snuggle them and hug them and kiss them as much as i can (James is more receptive than Alexandra, its got to be on her terms). Victoria has managed a few socials of her own (good for her) and when she has I have had a couple of movie nights with the kids under the blanket....just blissful.
On that warm note i end this belated blog and lets be honest the last of this year.
Happy new year....lets hope its a good one i wont be sad to say goodbye to 2013. But on the positive side...i got promoted at work, i am on a clinical trial, we had a fabulous holiday in Sorrento and so far the Christmas break has been wonderful......
