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Angela and Life Hurdles

Angela went to all my appointments,she has been an absolute rock, not only my appointments , but she had her own agenda too, our kids which are adults,really for the news of Angela and myself must have been alot to take in. Angela had a mammogram Feb 2018 and was called to the Parapet at King Edward Windsor Hospital, cutting a long story short, she was told that she was to have a mastectomy on her Left breast with a re-construction. Angela was so brave and accepted it, no problem, it was organised really quickly and the operation was to take place at Heatherwood Hospital Ascot May 2018 all done within a 6 – 8 week period from start to finish.Angela and I were so relieved  all had gone well and all was ok, atleast that is what we thought ,we had only jumped the first hurdle more to come !

Out-Patients Appt

29th June 2018                                                                                                                                                                                                                                                                                       I had an appointment to see Dr Mac, I waited in reception to be called and after 10 mins of sitting there with Angela I was called in by a women , whom I thought at first was a nurse, Angela and I proceeded to the office and the woman as we now know is Dr A.D. I said to her why am I not seeing Dr Mac as he is my consultant, not to be insulting, but I find dealing with numerous doctors is not what I would like,that he was the person the appointment was made for. She said that if I wanted then I could go back to reception waiting room and wait for him, but she would answer any questions I may have so I asked why when seeing a collegue of hers in 2014 taking so much acid reflux meds, did the consultant not think, to further investigate, seeing as I was struggling with my breathing then, she answered with showing me the x-ray of my lungs and all was ok then. I asked,  being diagnosed with Asbestosis  (Mesothelioma) now that I was being checked for something else, then it had took away the chance of me, to make a claim for compensation, Dr A.D said there would be no medication, no more appointments, as there would be nothing more they could do, if this was the case of Asbestosis. The question was asked to me about having a lung transplant,I would be all for it is what I said, but asked what are the facts on having the operation and survival rates, her answer was not good as it put me off the fact of having a transplant as the stats were very low in survival rates.

letter from Dr A D

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Visit by ILD nurse at home

R.D. came to my house, we had got the news from the Brompton and R.D. was the ILD nurse, he was very good and put me to rest with the knowledge he had,he also said he worked in the transplant ward went prompted me to to tell him what I had been told from Dr A.D and R.D. assured me this was not the case and give me the true rates for survival, which made me feel alot more comfortable about having a lung transplant.

Critical Illness insurance

I was still being diagnosed ,Angela had the mastectomy on one breast , so I applied for claim forms from the critical illness insurance I had, which by the way I had been paying into from 14/11/2000.By the time claim forms arrived I had my diagnosis too, they said they would send out one form and that was for Angela’s problem only and that my diagnosis was not listed on their definitions of diseases, instantly I got the file out and threatened them with the insurance ombudsman, as it clearly stated that I had a terminal illness with a life expectancy, so they sent another form. We got my consultant to fill my form in at the Brompton ,Angela had hers done at the Parapet Windsor. We got a shock as they paid out for me , but, because Angela’s surgery was non evasive, what they said was Angela did not have Breast cancer, as it was repaired or taken away before it reached the stage of cancer, they would not pay, I was surprised and disappointed.Beleive this or not they did decide however to pay for my claim, I did not receive a massive amount, but it gave us enough to pay the mortgage lender.I also felt like I had paid alot into this policy and felt cheated for Angela’s claim, but I continued to pay Angela’s policy, just incase there was a problem in the future.

Work Called

4th July 2018                                                                                                                                                                                                                                                                                 Lewis engineering called me to start another site, this was to be in Bridgwater Somerset.I was pleased that they asked me to return. I met with Breffni and he gave me the files and necessary information associated with the work at Bridgwater,plus a hand over to another Project Manager Matt. I told the guys about my disease in my lungs, that I had IPF idiopathic pulmonary fibrosis, instantly asked “what is that ?”so I explained. Breffni asked why I wanted to come back to work with a illness with a life expectancy, simple answer was insurance have not paid out yet ,I have a mortgage and my daughter is getting married. the main issue was I was still fit enough to work as I managed my breathing when walking at my own pace, not to be keeping up with people, plus I did not need oxygen when sitting, as my stats were the same as his when sitting at the desk , not physically working but doing paperwork was ok. 4th July I got the news from the Brompton Hospital

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Dr R Letter Brompton
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Letter Dr Mac Frimley

Stayed At My Daughters House

My Daughter Gina lives near Bristol, with Dean and at the time two Daughters Ivy 3 & Etta 1,they had enough room to put me up, so I could commute from their place to Bridgwater daily roughly 50-60mins, 5 days a week working, 4 days at Gina’s as I travelled home Friday, usually passing Stonehenge slowly as everyone always rubber necking travelling by it.                                                                                                                                                                                                                                             What a great time I had at our Gina & Deans, when I got back to the house I was in time to see my grandaughters, Ivy taught me a new thing, as when I took my medication she called them “ambulance sweets” which made me laugh.

Stag Night & A Dummy Spat

Dean didn’t know, but his two best men,organised the stag do in Newcastle, there were about 8 of them including Dean supported Newcastle FC, so it was a dash to go up North on Friday with my sons Luke & Connor, My Mum still lives in the North East roughly 15 miles from Newcastle so I had organised to stay at my Mums for Friday night, so I dropped the lads off at the hotel had one drink and left to take mum out for a meal. In the morning the lads had a clay pidgeon shoot on at 10-30am in Durham,so I met them there, Connor won the shoot, the lads asked if we would like to go to the game, considering I am a Sunderland supporter, I said no, so the lads went to watch Newcastle v Tottenham. My two sons and I decided to go back to Mums,Luke came with me and I called to see my brother to ask him to join us on the night. My brother was not in, so I phoned him,I was cut off, thinking it was a bad line,I phoned again, this time he responded quite agitated and was not happy. He had seen that I had put on Facebook, photos of the lads doing the shoot,he was thinking I was not going to ask him to join us,so he through his dummie out the pram, to be brutally honest he said he would not join us in his words “Ne stag do ,Ne wedding”.So I was sad and disappointed with his attitude,as I feel he misunderstood that whole weekend ,so sorry to say a close family member of mine did not come to the wedding of my only daughter. Dean and Gina also feel very let down as they feel to blame and should not be. My brother and I have never spoken since, sad really,  as the eldest of 3 brothers, I felt we were close and brought up to be that way — Hurdle number two                                                                                                                                                                       Gina and Dean were getting married in October so I had to save and it was going ok, writing a speech, really Gina organised it all, a great day had by all, every one enjoyed themselves.                                                                                                                                                                                                                                                                             As a gift Angela and I were presented with tickets for Disney Paris which the whole family joined us– thats another story!

Disney Paris Special Time

24th October 2018                                                                                                                                                                                                                                                                   Wedding finished Sunday and Wednesday we were leaving for Disney, the whole family came including my Mum. It was a rush to catch the train and we just made it 2 minutes to spare, so I was gasping for breath, but nevertheless we got there, Gina had a house booked 10 mins bus ride to Disney and all of us had a room, it was wonderful having my family altogether in one place.                                                                                                                                                                                        Thursday we went to Disney, Gina had organised a letter from my Doctor about my illness, so I had to que up to hand it over to Disney staff, so I could have a Fast track Pass , this allowed 4 persons and myself to not wait in the que’s, to take the fast track route and they put us on the ride first, well, I was absolutely exhausted, as I went on those rides twice, as my family all wanted the quick route round. Bearing in mind at this time I was over weight nearly 18 stone, there is alot of walking to do , so my sons acquired a wheelchair for me as I was knackered.I also had my ambulatory oxygen with a conserver unit to make it last longer.The other thing I did was to turn the unit off as to save and make the cylinder last longer. Sunday was the travel back, we had one change to do in France, this was no problem as the trains were exactly on time, we got to England then all was chaos, the train we had to change, it made it full, we were all crammed in, as other trains had been cancelled plus we had to go to another station, then get a taxi home. When getting the Taxi the driver did not put the meter on, I asked him how much it would be, he quoted me a price above of what it should have been, saying it was special because with my family,we had to have a mini bus, to carry us all, I reported the driver to the council, as the meter needs to be on always, unless, you agree to a price before.                                                                       However what a wonderful time had by all, we really enjoyed it.

Back to Work

At this moment I was able to, what I call, manage my breathing, not needing oxygen to walk as long as I did not hurry. Matt (Project Manager)asked to put my coat on and we would walk together to the job, I said that I would take him in the van as I would not keep up and would not be fast enough for him , he had forgot about my illness.Sept we also started the Scout Hut meetings for this support group.

Christmas then off to Isle of Arran

 

Angela and I had a wonderful Christmas and we were asked by friends of ours to come to Arran to see in the New Year, with the year we had, we thought it would be really nice to get away.