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.

WTS.

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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.
NO COMMENT.

Thursday

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.

An update

I  finally got the results of my Pet scan yesterday. Its confirmed the Lymphoma is present in at least 2 other areas  as in each side of my Diaphram.. As its a slow growing cancer  I am  going to see the  Dr in early February. I am getting   a drug called Rituximab.

If successful it should reduce or at least  hold it  for a while. But at my age I am not to concerned. As long as it  keeps it at bay long enough  for me to continue as Mavis`s carer thats good enough for me.

I will update this again  when I start the treatment.

Beacon

Well  what a day we have had. We were invited to a Tour of  Beacon`s Factory. We were collected by Car at 7.30 am by A really  nice guy Louis. The journey was 3 Hours through  M25. Rain Fog and Traffic . We were  greeted on arrival By the Directors Andy, and Ray. A hot  Coffee and tea was instantly  in front of us, most welcome.

After a Chat and a welcome so warm we were  given a Tour of the factory and introduced to  manny of the staff. Really most interesting. What they do is amazing.  With the tour over we were  taken to the Room  with heaps of food laid out  Hot tea ,coffee, soft drinks. And set up was a screen and projector. After an  embarrassing  welcome to all the room full of staff I was introduced as the first Guest to speak. I stumbled a bit at first because  the presentation that loaded was not  my latest and I was thrown a bit because  the slides and order was not  what I was expecting but I caught up and soon I was in flow.. With a few more blips I  completed   A another  good  response. Now after another  introduction it was Mavis s turn to follow. She likewise was thrown by the presentation it was not  what she expected. But despite having a heavy cold she did her usual amazing talk. Then it was time to  get stuck into the buffet . As usual people were gathering around her with congratulations and questions. Then after  all that we were escorted back to the MDs office . Most  unexpectedly Ray the Tech,Directors wife came in with a big bunch of flowers for Mavis and a nice bottle  for me. a lovely gesture. The surprise announcement  was that In May 2019 they are organising a Rickshaw style cycle ride  in order to  support  The Charity.. To say we were treated like Royalty  was an understatement. Soon it was time to leave and we were escorted to  our drivers car for the journey home. We even received a call  on his phone to check how far we were and to check that his honoured guests were  doing OK.

The End of a fantastic Day as we shook hands and said our goodbyes  at our front door.

Tuesday

Up early again another anxious day ahead. we took park and ride and  a bus to the hospital as parking can be a nightmare. Arrived early as usual  booked in and waited and waited and waited.

nearly 40 mins late I was called in. Well a better day today ,even though they were still confused. I asked what went wrong yesterday and it was explained to me. Its the system .
So today I actually had an Ultrasound and bi op on my lump. Not to painful ,but at least its done now.
Just wait for results Hey Ho

I dont know how Mavis does it. She is much braver than I am.

Thank you  for your  kind posts yesterday. Me and hospitals are not exactly top of my list..

Monday

After the  Hospital Fiasco  this morning. I was there for  a Scan and a Bi op on my Throat . Well thats what my letter said.. As I said this morning that I was in and out in  less than 5 mins getting an Ultra sound. on my throat All done she said . I said what thats it all done nothing else no needles? She reapeated all done. So after wasting  nearly 4 hours we came home This afternoon  we had to go to the Royal Marsden for Mavis`s scan. I was  sitting  waiting for Mavis to come our from the scan when my phone rang. Hello  This is the Hospital. There was an error  with your appointment . Can you come back in the morning. for  a biop on your throat and groin. So I was due  2 bi ops that wasnt in my letter. You didnt get all the procedure. We can do it  for you in the morning. Strange Ive had to wait weeks untill a specialist was available. But  because they cocked up  I can see him in less than 12 hours notice.

So now its another 4 hours tomorrow. So watch this space for  follow up tomorrow.