Sorry for jumping ahead but I felt I was always trying to keep up, I will however keep writing so I can catch up and get upto date
29th May — 6th June Cornwall
Saturday we spent most of the day packing the motorhome and left 3pm, thinking it would be best time to leave this bank holiday, we were wrong just over 6 hours to get to Dinham,it was bumper to bumper from Bristol M5 to Exeter, then the same for atleast another 80mins, never mind we were there and the man Steve met us and showed us our pitch, Angela must of said something ,as I waited for Angela to return he asked about what stats I was on when not using oxygen , I told him between 86%-88% when sitting, if i was walking or doing something it drops to 65%–75%, he must have some knowledge as he said it was low.We got to our pitch and it was perfect ,close to the amenities showers and toilets, so I did not have far to walk. I put my ambulatory cylinder on my back and started to set up the van.I ran out of oxygen with my first cylinder,with working putting the waste tank out, topping water up, putting the canopy out, water for toilet and Electric hook up, time flys.I must admit a week earlier, I had an inspection by Dolby for me to take the concentrator with me, best thing I took was that machine, as I found out later that the hose tubing and the water tap etc were accessible wearing my concentrator.We had a great nights sleep. Sunday Angela and I still had a bit more work to do, I built up a 2 man tent, which was great for putting bits and peices in for storage, plus if our son Connor and his partner wanted to stay a night they can.Luke my eldest and his partner Nikki with our new grandaughter Henni have a static caravan which is Nikki’s Mums.I walked Vinny and walked to where they were staying, with my oxygen and conserver unit as I don’t want to run out of Air. I explained where we were pitched, as I went back to the van to wait for them, as we decided to take a trip into Padstow. We left I was told to get in the front and the girls went into the back. When we got there we passed Rick Steins school of cooking near the harbour ,Angela has got me that for a birthday gift, we parked up using my disabled badge. There were lots of people there and it made me alittle worried about keeping a social distance, 1% of people wore their masks outside and 100% of people wore their masks when going into shops 2 at a time, so regulations were still applied but more persons about very busy. The oxygen I was wearing with the conserver unit was not giving me ample oxygen, I had to keep stopping for air, so I checked the unit again to find it had been turned down to 6 litres , where I usually have it on 8 litres this was much better, but again I do prefer the constant air flow.What a great day and really hot and sunny ,it was like being abroad, we finished off in Luke and Nikkis place with a meal. Monday we were waiting for the arrival of Connor and his partner Jess, Gina & Dean and our 3 grandaughters, as they had stayed at Connors at Plymouth Sunday night.They arrived roughly at 10-30am Gina & Dean had to unpack while Connor and Jess had decided to travel back as it is only an hour each way, but to stay Tuesday night. When everybody was ready the decision was made to go to the local beach at Rock, I declined and said I would stay at the van,my silent thoughts were I wanted Angela to have a good time with the kids, I told everyone that I was ok the weather was great, but I need to have the terrain sussed out.3 hours later they returned, it was a good job I stayed Angela said there was inclines , which I wouldn’t of wanted to go and would of found it difficult. I was pleased I did that at the beginning, so as to get everyone with the thought process of Dad,in future decisions, as I said to them there is nothing worse than going somewhere , which I would find hard and difficult, for me to say, turn round and take me back , as it spoils their and my enjoyment. Angela cried and said that she wanted me to come aswell,as we both had travelled a long way , but did not want to leave me at the van. The decision I made to stay, paid off, for the rest of the holiday. Tuesday was all planned Nikki had looked on her phone for suitable places which were not difficult for me Mawgan Porth Beach near Newquay. They dropped me off at beach then they parked the cars, while I waited for them to come an accident happened just before we arrived , police turned up and I sat there watching. when everyone came we made our way to the beach, I enjoyed the whole day,I never felt like a burden and I also got time to play with my grandchildren which I think they enjoyed as much as me
Tuesday 8th June Rehab
I Started Rehab again today, I arrived there dead on time , normally I am 10 mins earlier.10am start and there were only three of us, I asked ,as there was supposed to be 8 ,when I walked in the door, Ian one of our support group members recognised me and I didn’t register straight away, who he was, then it came to me, so I am sorry Ian. The other gentleman was Michael ,it was for him, his third time at rehab, so the girls must be doing the right things as I have always recommended the rehab , THE FITTER YOU ARE , THE LESS OXYGEN YOU NEED.The session went on till 12 roughly 60-70 mins exercising , then Melenna gives us a lesson, which today was about the illness of Pulmonary Fibrosis.Melenna had two girls with her, I forget there names, but everyone was friendly and helpful
Wednesday 8th June, Angela and her last Chemo
I was working alot on the computor today North SG leaders meeting, we talked alot on the NICE decision on allowing the drugs to be given as soon as diagnosis is made. We did a focus meeting on coughing how it affects us , how it starts, reasons for it, remedies, and the problems for people with the cough. I must admit it was bought to my attention by a couple, who said when having a coughing fit,people have been asked to leave the room , as it has got on someones nerves, which I would never have thought of. Steve Jones mentioned when he had IPF he coughed up clear mucus a cup full as it was always a problem with IPF .In my group I told all that Acid reflux ,eating dried food such as toast and breathing in, for a particle of dried bread goes down the wrong pipe. The major instrument to ease the build up of mucus was me purchasing a Dyson fan which also purifies the air, it makes my nose and throat much cleaner when I wake up in the morning. Angela had an appointment a Wexham Park Hospital for her last Chemo, which she has had every 3 weeks for a year, I kept myself busy most of the day doing this blog,Angela landed back in the house 5pm, she was pleased with today, she had even rung the bell at hospital as it was her last treatment, she had also given them a load of cakes, doughnuts etc.I personally feel she has been very brave, amazing,inspiring and such a strong women to face up to all of the operation and treatment without a moan and she has been still looking after me.Hopefully it is the last of the hurdles for Angela . 8pm we watched a webinar for Caring for a loved one with PF
Thursday 9th June
Another meeting Southern Region leader meeting, plus Steve had invited me to his support group meeting.Leaders meeting was the same as the Northern Natalie from APF told me she had got in touch with Dyson to see if they would give them a fan for the draw in PF week, after asking me to write a testamonial on the machine. I asked for the upto date version of the GP surgeries an altogether Link so I could hand it in to the local surgery so here it is :-Template letter to GP on this page https://www.actionpf.org/get-involved/diagnosing-pulmonary-fibrosis/tell-your-gp
I also asked that APF draw up a template,I told them the webinar was fantastic last night and it touched upon a matter, that when getting first diagnosed patient get absolutely nothing, go home and Google the condition up, I asked them that a information pack should be made , for all areas including what we call our family which includes Doctors, ILD nurses Rehab, Oxygen, all associated with NHS right down to the local support group where really we can advise them and point them in the right direction, giving first diagnosed patients knowledge they are not alone
Friday 11th June
Today went to Rehab again only 3 of us were there, I improved on my last stats as I feel, what is the purpose of going, to not make an improvement, plus I need to lose weight.Exercises are
- Step Ups
- Wall push ups
- Sideway leg
- Arm Curls
- Bike
- Air Punching
- Leg Back
- Up & Over Arms
- Sit to Stand
- Marching on the Spot ( walking )
Saturday 12th June
My eldest Son and I arranged to build my shed and mancave today in the garden, we actually worked till 9pm, my son of course does all the work,I try but as you all know ,we get breathless. I was wearing the Liquid oxygen Hi-Flow flask, as it is supposed to last 2 hours, I started to have problems as this flask freezes up and little comes through the tubes,I felt to give it another try so I tried to fill it up again and would not take it. I phoned Dolby ,they said Tuesday would be the earliest, I told them that the flask has a problem and needs replacing, they said they would took my order and we said our goodbyes .I then had to pull my concentrator unit closer to the garden ,so that I had a contant flow of oxygen, only trouble was the tube gets in the way, so I had to make sure it was wrapped and not a trip hazard.
Tuesday 15th June
Rehab day, when I got there , there was alot of cars, I did nor recognise in the car park, we had new starters, but Ian was not there either and Michael turned up late.The other was the Marlene was also missing and a Maxine a collegue of Marlenes was there with Orla and a another Man, The new patients also seemed to know all the staff, so I felt a little alone and the new comer although I had the previous week, so I just got on with it.Orla asked me if I would like to stay for the talk, although it was not related to myself or desease and I said that I had a oxygen deliverery and needed to get back home, which was ok by the staff. They actually said at the beginning of rehab that if some subjects were not related to yourself you can leave early.
When I arrived back home Dolby Vivisol turned up 10 mins later, it was a new delivery man to us as I know all of them that come, his name was Glen, funny when they turned up I was just at that moment speaking to their office asking what time they were coming as they are supposed to ring me with an estimated time of arrival, I rung off to see Glen and asked him why he did not ring me , he said it was not on his ipad schedule, for today and showed me, he also went back on my delivery schedule and found it on earlier deliveries, this is not the delivery mansproblem ,this should be written in by the office when ordering the oxygen. Next problem was he did not have another flask, he was told by the office to come and look at it, surely if it does not work , we should know , so office again not complying with the information given at the time of call, so I complained to a manager there at Dolby. Glen did take a look at my flask and said it was faulty agreeing with all I said.I was told they would get me a new one sent out to to me as soon as possible.
Wed 16th June
I got a call from Glen at Dolby early this morning, telling me another delivery driver was going to drop off a new or reconditioned flask and would be with me within the hour, the man came like he said and we exchanged the old for the new in a plastic bag sealed, this unit is alot better , but will still not refill every 2 hours and goes on stop , so I may need to change it or get someone to put me in the right.
Fri 18th June
Another day at Rehab (sounds like a song ) this time Marlene was there, she told me off and said that I needed to do exercise in between the days off we have from rehab and we must write it down in our breif which are handed out to us in a file.She is quite right .The thing was I had worked with my son Luke on the shed from 8am till 9pm so it was a long day, but how do I put it on paper.
Sunday (Fathers Day)20th June
I was getting ready after just coming out of the bathroom, when my two grand daughters quietly sneaked in my house, creeped up the stairs and said happy Fathers day to me, giving me a lovely surprise,and a loving cuddle from both of them. My Daughter Gina was cleaning her car as my other grand daughter had been sick driving down in the car, but what a lovely surprise when all was tidied up.I spent all day, as my eldest Luke came over and we had dinner all together.What a lovely surprise.
Mon 21st – Fri 25th June Holiday
I picked up my van early and parked it outside my house to load up, it was raining hard and would not let up all day. We were off to Bridport to meet Clive & Rita , I have known Rita from the very first month of me coming down South, nearly 40 years of being friends, Clive is alot like myself, so when we arrived, they both came to meet us at our pitch.I was still plugging electric in and switching on the gas, when Angela shouted me that we were leaking, it was serious , Clive went out to get us silicone mastic to stop the leak , Angela went to Rita’s static caravan , while Clive and I sealed the leak.Eventually we stopped the leak, but decided we were to sleep at Clive and Rita’s place, as some of the cushioning had got damp, I would check it out in the morning ,I left the heater on, placed a couple of bowls where we thought drips were coming in . Angela & Clive in the car went back to the motorhome to get our clothes and food rashons Tuesday it was damp and rained most of the night,Clive took me down to the van, as walking, would use my oxygen up quickly, as I was on ambulatory, I also fitted the conserver unit on, to make them last longer.Well when I got inside,it was not as bad as I thought, there was a little water in the washing up bowls, I cleaned up , Clive emptied the water out and we put them back in place, so we could periodically check it out.We got ready and we all left to go to Westbay as we could see this town from our Holiday park,West Bay is where they filmed Broadchurch, Rita & Angela walked the dog Vinny down the cliff pathway and Clive and myself went in the car ,Angela packed our disabled badge so we could park in in a disabled bay , which was much easier for Clive. Wednesday I done the same checking the van, not so much rain during the night, glorious sunshine today, when we checked the van there was nothing and I felt better for it. Today we decided to go to Seatown beach, but after a telephone conversation organised with the Brompton Dietician, this was the 6 weeks after the first consultation with Raz. 14.30pm was the call and I had no link sent from the Brompton, I looked in my messages and found a old one from previously from Raz, so I hung on till 14.40 when a call from a 0330 number came up on my phone, by the time I cancelled the video call and accepted the call coming in ,it was too late,I phoned straight back and yes it was from the Brompton, I waited 3 mins for her to call again , but she did not, so I rang, eventually getting a extension number for the dietician Raz, luckily I got Raz ,she apologised for me not getting the link, she asked me ,how I was getting on , I replied telling her I was now down to 102.5 kg and she was so pleased and said was proud of me , which was very kind for her to say, also with me co-operating with her methods, she said it was good policy for patients like me, wanting a transplant, as they look for patients to show a willing mind of thought, as it is a very serious thing to go through.I felt very humbled by what Raz had to say and appreciated it alot. That night we booked to go to The Station Kitchen Restaurant in West Bay, it was an old railway Carriage the food is one of the best I have had and in my top 3 places I have eaten, expensive but excellent, staff were great too, it will have a visit from us again. Thursday Angela and I walked the dog around the park and towards the cliff edge so I could see the veiws,Clive & Rita said they would join us, Angela & I got back to their van and we waited, for some time wondering, where they were,when we heard Rita say she had fallen down an old rabbit burrow, toppled over and hurt her knee, so Clive took her to the Med centre after 111 had made an appointment there. Cutting a long story short Rita broke a small bone in her knee, bless her ,she walked from where it happened to the van, she was nearly in tears. Rita and myself knew each other, when I played football, Rita used to watch the team as an old friend of mine David ,who has passed away was the manager and partner of Rita, we both reminised a few times and I told her a player friend Ed lived in Sidmouth now and is in the RNLI, I rung Ed and he instantly arranged to come and see us at the van tomorrow. That night we stayed in Clive and I took the mickey out of Rita and we all laughed. Friday we had to be off our pitch by 11am , so I moved the van to the car park area. Angela got all our stuff together and Clive & Angela ferried all our gear to the van with the car. Ed came it was so good to see Ed , he even told Rita it must be atleast 20years since seeing her the last time. We had some great laughs. David our ex football manager had a yacht masters license, but was new to it, he asked me, as he was buying a yacht from Miami, if I would come with him to get the yacht back to England, I could not as family commitments stopped me, anyway Ed went, he saved that crew twice, he was a brave lad, David commended him for what he did. Ed told me he did not get on with the person which we will call Wentworth Dave, I had heard this from David,however the light went out on the mast, this had to be replaced,Dave & David would not go up the mast,so Ed did, the rocking of the boat on deck is small ,but being winched up on a chair to the top of the mast , chair is swinging and you are moving alot at that height. He said the worst was, that every day, you had to turn on the engine, to re-charge the batteries, a rope had dropped and got tangled around the propellor, again like Ed said if either Dave or David died how would they get back , so Ed did it , he tied a rope around his waist ,dived under the boat, he said there were barnacles attached to the yacht, it was bouncing up and down, while he tried to cut the rope loose,it had to be done, eventually he cut it loose after diving a good few times. Wentworth Dave never thanked him like David did, when they reached Southhampton there were alot of people waiting , as it was an acheivement what they had accomplished,Ed got off at the docks and his parents picked him up, he wanted just to be away from Wentworth Dave never to speak or see him again.We told quite a few stories and reminised on old times, Ed is a great friend, which it is all about, it was like we only saw each other last week and that is what true friends are.Ed took me to our van as Clive and Rita had a medical appointment, we said our goodbyes to the 3 of them having a great time and we set off , back home
I would like to say, when people you know and they know how you are , they come together without embarrassing you, to help you, as best that they can do,I am a person that does not want people to feel, I am a burdon,the good people that know and surround you , will not make you feel that way ! Angela ,Rita and Clive I thank you so much
Sat 26th June Circus
We were to go to a festival called Gig on the Green at Yateley, this was with the whole family, unfortunately because of Covid-19 restrictions, it was postponed to Sept 18th 2021. Angela organised for us all to go to the Berlin Circus at Guildford, as it was supposed to rain, it didn’t and we all went including my youngest son Connor & partner Jess with Gina, Dean and my 3 granddaughters. Angela told them about me ,as a disabled person, we got VIP tickets, for all, half price, sitting at the front by the ring, the girls were memorised and loved every minute of it, we had a great time.
Tuesday 29th June Rehab
What a day today, I had rehab at 10am , I must say with a week off ,I could see by my stats that you must persist at doing exercises, as I could not do as many. The rehab does help you to get fit although you may think different, you are wrong, please take it from someone who used to train and was fit at one time.We had a talk of How to breath after our session, I learned a few thing one of which was square breathing, this is 4 sides to a square, 1 side breath in through the nose, the other 3 sides breath out, I will use this very good.14-00pm I was having the first meeting with the research champions organised by APF , alot of introductions was made,alot of planning by those who organised it,I also met some new players, the whole meeting went on till 16-15 pm very interesting and there will be alot more to talk about in the future.
England 2-0 win against Germany
Month of July
I was still taking my rehab, Tuesday and Friday,I finished on the 30th. A little criticism is only that , the physio’s of the NHS are there and are a great help, it is all about getting it right for you. IT IS NOT A WASTE OF TIME, so those of you who come late or don’t turn up, when they’re other persons wanting to be on the rehab course, you are just wasting NHS time and money, that was only delivered to the persons who know who they are !
Dr M from Frimley park Hospital telephoned me on the results of a sleep study test, for those of you who do not know what that is, NHS give you a monitor with sensors to monitor your breathing and oxygen levels during the night,while sleeping, if you do it wrong they ask you to do it again , so get it right first time, as it is uncomfortable to wear. My stats were low and the Dr asked me to keep my oxygen on during the night.Believe it or not I slept better.
Oxygen Test King Edward 19th July
What a laugh I had with Sally,when arriving at the hospital with my oxygen on , they have to wait 20 mins without the oxygen to do the test, which is taking blood from your ear lobe, my stats were below 6 and they require it above that, between 6 – 10.So Sally did another test with my oxygen on 4Lts, my stats went up, so when I am watching tv or sleeping I must have oxygen at 4Lts and I must be on constant oxygen for at least 15 hours a day, obviously turning it up to 10-12 when I am active. Angela and I left to go to Durham to have a few days at my mums , then bring her down South. While I was up North I had a zoom meeting with the dietician, I keep agreeing to change my diet habit of eating evening meal late 6-7pm, to making it at 15-00pm, with having something small ,late, but no later than 20-00pm. this is because my weight is fluctuating between 102 -105 kg. The other annoying habit NHS does is to change the people you see, Raz was with us before and they changed her to a Katherine, who is really nice too, but when you are used to speaking to a person , why do they have to change them because you have to go over past items all over again. 23rd July Back Home with my mum staying at our house, was a great change, so you know, we all did lateral flow tests just to make sure we were safe.
Dolby Oxygen Service
As I have written I was up North for 4 nights, Dolby organised oxygen to be delivered to my mums house, they left me a concentrator and ambulatory cylinders, whenI returned to take Mum back home, they did the same again ,but, when 2 persons came to pick up the concentrator the second time , they came in and I reminded them they should be wearing masks,with conditions we have, they profusely apologised and put them on.Dolby on a good note, Reading festival was on 27-29th Aug, a man with a stroller needed liquid oxygen and Dolby organised it to be delivered and left it in the main tent for organisers, so he could refill his stroller when required.
August & Henley Regatta (Rowing)
Really August was boring ,I haven’t done much, we took Mum out a few times and very much enjoyed her company,I think it was mutual as Mum is on her own, anyway we took her back on the 10th and we drove back down on the 13th, we had to be back as Henley Regatta was on and our nephew was racing , with something for Matt and his co-partner to prove,as they were put as spares for the Olympics.Matt was last one to race his qualifier on Saturday, so we went to Henley for 3pm, what a wonderful atmosphere , even better for Matt to win by 4-500 yards , Final tomorrow Sunday, which by the way has been in now 14 finals won 5 with the possibility of winning 6 tomorrow. 2009: Henley Royal Regatta – Winner Prince Albert challenge cup 2012: Henley Royal Regatta – Winner Visitors Challenge Cup 2013: Henley Royal Regatta – Winner Stewards Challenge Cup 2014: Henley Royal Regatta – Winner Grand Challenge Cup 2017: Henley Royal Regatta – Winner Stewards Challenge Cup We were there early as we were going to be there all day, my brother in law organised for me to be sitting in the umpires boat to watch our Matt, well he was so far ahead I needed binoculars, so he won , we were really happy.In the morning my sister in law and Angela went to the toilet, her brother telephone to find out where she was and a steward with the regatta agressively attacked Sarah with his tongue,telling her it was not allowed to have mobile phones on the go in this stwards area we were in,this upset Angela immensely later on.