better late than never post.

its been a few weeks since last post. Ive been to Edingborough and Exeter giving presentations. Ive had my cancer treatment  Ive seen my onco who is happy with me. I am getting a heart monitor fitted next Tuesday as I have a problem. They wont look at my cataract until I get heart problem sorted.

I cant believe how much Ive aged over the past 12 months. Basicly I am a mess. But I  must keep going  as I  need to keep an eye on Mavis.Other than that I am doing OK. I must try and do updates and posts more often, so WTS.

My 3rd Rituximab

Well  treatment day 3. We arrived for my 8.30  appointment at  8 am booked in and took a seat. Called to  the Chair around 9.15 Pre meds started  10 am. These will make you drowsy  she said. By 10 30  I was  gone. But they  kept waking me every 15 mins  for  checks. I vaguely remember hearing a voice  and seeing a blury face in the distance as they did BP checks but I instantly  drifted off again It was imposable to keep my eyes open..It was  12 when Mavis shook me  the sandwhich lady was here  did I want a cuppa tea. yes ,did I want a soup yes, did I want a …….. But now I was beginning to  wake up. I started my flush at 1 pm and was all done and dusted  by 20 to 2 we were now  heading home. But soon I was fast asleep on settee 2 hrs  and I am ready for a meal after strugleing through dinner I  was off again but only for an hour. Its now almost 9 pm and I am  just feeling  normal. So although out of treatment quicker today still shattered. I wonder what tomorrow will  bring.

First Long trip in New Car

It was 6 am pitch black ,spent 10  mins de iceing it as heavy frost. But  set of a bit nervous but took it easy. Prety soon  it was touching 70 . I thought  well thats enough for me. WE got through all the grotty road works. And arrived at the Marsden . The journey home in daylight was more confident . So I think  Ive sussed it  now, its always a bit nervy first time out  especially in the dark.  As mavis picked it I said well now weve been out in it  now are you still pleased . I luv it she said so thats good enough for me.

2nd Treatment DAy

Much better day on treatment. Because I had no problems last time they were able to increase the flow rate this week. Last week it was a slow infusion. Today I was done at 2 pm. Better than last weeks 1/4 to 5.. Maybe next week a bit quicker. So far I am ok. The pre meds did send me off Mavis said I was snoring..
Only thing they are not happy with is my heart. My ECG gave abnormaly low readings. 37-42 it should be aroung 80 . Advised to see my GP. We will see.
Much to my surprise a bunch of nurses came swaning up the ward singing Happy Birthday to me. They gave me a special bag of goodies. How sweet was that.

First Rituxzimab

Well it was 8 hours in  the chair.pumped and swallowed all sorts of  stuff. But then the dreaded canular is connected. checks every 15 mins for  about 6 hrs then hourly. I had  a job staying awake . But they woke me every 15 mins to  do BP  etc.

But I am home now and apart from feeling knackered I am ok. So its one down 3 to go.


BTOG 2019

Btog 19

Will not forget this in a hurry. The Journey out to Ireland began with problems. We were due to fly out at 8.08 from Luton But due to snow shutting all but one runway we were still waiting at almost 11pm. The landing at Dublin ,when we hit the runway with an almighty bang My back screamed out loud in agony. We booked in hotel  well after midnight. On Tuesday  night/Wed. Morning Then It was up at 7.30 for breakfast and first conference at 9 am. . There was no heating in our rooom ,so I had to get the plumber up to the room to sort it.

Things began to unravel on Friday morning. I was locked out of the room. At reception I was told our booking was only for Tues night Wed night. That my card had been deactivated because we should not have been in the room. So we had to sort that. We said no we are here to Saturday Morning. So we now paid for the Thursday night and said we would leave and spend time at the airport as we had an early flight Saturday morning.
We lounged about had a coffee and discussed why had the booking messed up. We had a bus booked for early Saturday to airport. I checked the ticket and discovered that It did not cover us for Saturday it expired Friday . So we decided to leave early. And Just to be on the safe side I checked flight time tickets.   Horror… We were booked to fly out at o7.30 that morning. So we had missed our flight home. Panic. We dashed to airport, Arriving at the airport we said help we missed our flight this morning how can we get home. He offered Manchester at 9.30pm No thanks we said. How about Birmingham at 9.45 pm NO thanks. Only option was 6.30 am. Saturday morning . This is at 5 pm Friday evening. What to do here for 13 hours ?  But we had no choice. That cost £240 transfer fee. Shit. So we sat about in the lounge on wooden seats My arse was in real pain. Food halls non existant,shops likeise. We found a McDonalds. But we still didn’t have a boarding pass. We had to come back at 4 am. So at 3 am we made our way to checkin. We need a boarding pass and I gave her the receipt. She said we cant do that here ,you have to down load it on line and Print it off. I said on what , MyPC is at home in England. Outcome we were eventually sorted with a pass. We went through security at 3.30 am we were the only ones there Mavis was panicking. We were due to fly out at 6.30 and its now 6 am and the desk has just opened. Eventually we got on board but were were not together.. I had a nasty incident because I was in the wrong seat I thought they went        d .e. f and not f. e .d . He was very aggressive. But because we had been awake since 7 am Friday morning and had not slept for 24 hrs I was less than my stroppy self and apologised. I fell asleep for the flight. But next My train tickets home were from Luton but we had landed at Stanstead. So I had to buy tkts. Only to find out NO TRAINS were running from Stanstead to London. We had to go by BUS. . When we got to Liverpool Street I needed underground tkts to St Pancras. No problem We got the bank card out and Mavis tapped hers and went through ok. I tapped mine Nothing I tried several times Nothing. So I moved to the next gate, nothing several more goes I am now fuming Tired hungry pissed off and I cant get on the underground. Mavis said talk to the man. What man, NO I will buy a bloody ticket. Now I see Mavis has My card and I have hers. Whats your pin I shouted over the barrier I cant remember she said. Now ! Ive lost it I stormed off. Found a ticket m/c. Never used one before. Now it starts the French inquisition. I filled in the boxes but It wouldn’t take my money and now I see NO CHANGE GIVEN I am trying to shove £20 note in it for a £3 ticket and No change. Now I am hunting for a £5 note. The que is building behind me. I asked anyone know how to use this stupid m/c before I rip it off the frigging wall. A nice young Chinese lad did it for me I got my tkt but yes NO change. Back to the barrier insert tkt. NOTHING. Next M/C Nothing. I have steam coming out my ears now.The poor young attendant standing by got my full temper what do you want me to do with this stupid bit of crap ,Ive just bought it and its not working. So She used her pass for me. At last we get on the underground to St Pancras. An Hour to wait we missed one by only minutes. We eventually got home after 1 pm now we are both so tired. We have to go and get Louis from kennels. Seeing him was the best thing we had during the past 24 hrs. Mavis said sorry about the mix ups ,did I still love her. I said of Course I still love you. Ok she said I can tell you now. Washing my hands in the toilets in London I lost my wedding ring.
So She said , I suppose Ireland next year is a NO NO then.


I am getting over xmas and New year. After all  they are only  days in a calender. And every day is special. Its something that comes with age. You place less and less on Public holidays and just enjoy each day we spend with those we love. Those days are the special days. All being well we will do exactly the same next year.