The Worst Time of my Life

I’m Afraid it’s Cancer!

Ok, so the title of this post is not the nicest of all, but I have learned not to hide from it. You see I was having a little trouble swallowing so I phoned the Medical Centre to make an appointment. The following morning I was sat chatting to Jimmy my Doctor. He thought it was an infection and prescribed some antibiotics but he also decided to refer me to the local general hospital “just to make sure”

A couple of weeks later I was being seen by a Dr at the hospital and arrangements were made for me to have an endoscope examination. I was also due to have a C.T. scan which I had the following day. (It should have been on the same day but they gave me something to eat [I’m diabetic] so as I was not starving therefore I couldn’t have the C.T. scan that morning). The Dr. told me that he had discovered a “growth” and a sample had been sent to the laboratory for analysis.

A few days later whilst driving home from a shopping trip I had the most chilling telephone call of all. “We’ve had the results of the tests and it is cancer of the oesophagus and an appointment has been made for you to see the consultant at the University Hospital Galway next Wednesday”! I was shattered. I got home and cried my eyes out. Then I decided that it was not going to beat me. I was going to be positive, I was not going to hide from it I was going to be open about it and use the word “cancer” and not dignify it with the euphemisms often used (the big C). I also made up my mind NOT EVER to ask “How long have I got?” because normally we just don’t know, so why change things? My lovely wife became my strength, my rock, and a shoulder to cry on. She never faltered and was always there for me.

To be honest I began to wonder what sort of treatment I would get over here and if it would be a good idea to return to the U.K. and the N.H.S. that I believe in. I need not have worried. I first of all was referred to a Consultant Surgeon in Galway where the whole problem was explained bluntly and unemotionally I was then sent to a private clinic for a whole body P.E.T. / C.T. scan (found out later that this scan costs €1,500) I then had to go to Dublin for an ultrasonic endoscope, I was seen by a Radiology Consultant and a Chemotherapy Consultant, had another CT scan and was tattooed for treatment and so began 6 weeks of radio therapy (daily) and weekly chemotherapy. (I was told that tests in Germany have shown that those that have the chemotherapy and radiation therapy before the surgery get a better result than doing it the other way round.)

The results of the tests showed that the cancer was only in 7 cm of oesophagus and nowhere else in the body. It was completely contained and had not invaded anywhere else. The surgeon said that it had probably been there for years and may have been the result of smoking or possibly my job (fireman) as smoke is smoke and all smoke is carcinogenic

We travelled daily to Galway for the first 2 weeks but I was advised that after 2 weeks the chemo would kick in and I would become more and more tired. They were right! We had been offered accommodation at a lodge courtesy of the Irish Cancer Society. We could have stayed for the whole 6 weeks but I decided that someone else may benefit from those first 2 weeks.

The accommodation was wonderful, beautiful twin bedded room, downstairs was a library and a sitting room and a wonderful atmosphere as everyone was in the same boat. Everyone was so open about it and it helped to accept the situation and promote a good positive attitude. To our surprise the accommodation also provided a fantastic breakfast and a good evening meal all at no cost to us.

After 4 weeks recovery from the treatment (a time that I spent sleeping and becoming very weak) I had an ultra sound examination on my heart and a lung function test. I saw the three consultants however the surgeon was reluctant to perform the surgery as I had picked up an infection in my lungs, and he wanted to get that cleared up first. I was referred to a lung specialist to get the infection cleared up as soon as possible. This was important because during the operation a lung would have to be collapsed for 1½ hours so he could get clear access to the cancerous section plus a good clear section of the oesophagus to ensure that all the cancer is removed. At this point I must say that I was very fortunate because I looked fit and well and I didn’t lose my hair. It thinned a little but it doesn’t show.

Last week (28th Feb) I went for the operation, a 6 hour job followed by a spell in Intensive Therapy Unit. I’m told that I will have pipelines to rival the layout of Clapham junction, coming out of every orifice and a few more that they make themselves.

At 9 o’ clock the Ward Manager came in and told me that the pre-booked bed in I.T.U. was available, so the pre-op procedure was started and soon I was high as a kite without a care in the world.

At 10 o’clock the surgeon arrived. He was not a happy bunny! He had been to I.T.U. to make sure about the bed and none was available! He set a deadline at mid-day for a bed to become available.

12 o’clock came and there was still no bed so I was given lunch and sent home to try again the following week (7th March) third time lucky I hope. That operating theatre was dormant for the whole day. The entire operating team were there and had to be paid. The following Thursday’s operating list had to be postponed because of my lengthily operation but they do not need an I.T.U. bed so they could have been seen instead but the notice was too short. WHAT A WASTE!!! So they will have a postponement of a week so frustrating for them!

Waiting for the operation I must say that I feel fit and well much like I felt a year ago.

The following is a diary that my dear wife kept after my admission to hospital

6.3.13

Bern was admitted this afternoon. It’s all systems go for tomorrow morning. He wasn’t so emotional this time, I think he wants it over and done with.
The surgeon will ring me tomorrow afterwards.

7.3.13

Bern went down for surgery at 8.30. I rung at 3 and still no news. Then at 4 and nothing. By 5 getting really panicky now

They said they don’t rush so we’ll just have to be patient, but that’s Irish for you. I’m not worried and the surgeon was trained at St Thomas’s in London so he’s the bees knees. He told us that if we still lived in either Kent or Sussex he would have had to go to St Thomas’s to have the op anyway

7.3.13

The surgeon Mr Collins rung me at 6.30 (10 hour surgery)and it’s all over and done with. He said he’s in recovery and awake. He will be in ICU overnight and tomorrow go to HDU. The surgeon said the growth has gone away for tests and they’ll be back in about 10 days. His main concern is the healing as his blood flow is dicky due to the diabetes. Again they will know more about the healing in 10 days. His other concern was his lungs and he said the Anaesthetist did struggle at times but if he can continue to do what physios tell him re his breathing there shouldn’t be a problem.

Just rung ICU 7pm and his nurse said he’s comfortable. The epidural is in his back not his neck. He’s got drips up including insulin. She said he’s not in pain and keeps drifting in and out. She said I can ring anytime as the phone is by his bed as it’s all 1 to 1 there.

8.3.13

I have just rung the hospital and the nurse said he’d had a good night once they’d sorted his epidural out as it wasn’t working one side. They sound a lovely bunch in there. The nurse said he’s got lots of girlfriends here. I said after 48 years I’m used to it. Then I heard dulcet tones behind an oxygen mask saying not girls WOMEN, so he’s back to his normal self.

Right I’m here in the B and B. Lovely Irish couple, very friendly. Got over to ICU about 2 and went straight in. Even though I knew what to expect it’s still a shock. He looked absolutely ashen. He kept saying he felt funny. The nurse said to me go and get a cuppa and we’ll sort him out. I said is there a problem. She said his oxygen levels have really dropped low so the doctor will be to see him. They did a cardio on him whilst I was there and an x ray and everything was ok they were just concerned about the drop in oxygen levels. So I went down and had a cuppa and when I got back Olive our angel was waiting for me. She said Mr Collins wanted to have a word. I thought the worst. Mr Collins said that everything was OK now but the drain in his lung had dislodged and wasn’t draining so his lung had started to fill. He said its a horrible feeling like hes drowning but we’ve sorted it and everything is OK. Mr Collins had never seen it before and it frightened him as well. I waited about 15 min whilst they sorted him and when I went back in he was fine. His colour was back and he is fully alert and talking. He has an oxygen mask on all the time and they keep putting a nebuliser on. They are putting drugs in and taking blood all the time. He has 9 drains in. As I say he drifts but still chatty. Asking who’s been in touch, how’s the chickens etc. I left about 6 and they were going to try and get him in a chair for 10 min. They seem to think he’ll be put in HDU on Monday. In himself he is fine.

9.3.13

Today he looks much better. They didn’t get him out of bed yesterday after he scared them, plus he was too shattered.
Today he stood this morning. He is still on all the drains and drips and insulin. I went in at 2 and they said that they wanted to try and get him in a chair for a little while. They got him in his chair about 3.30 and he stuck it an hour before asking to go back to bed. When they got him back I left as I could see he’d had enough. He’s so tired. He had a bad night as they were busy in ICU and a helicopter coming in and 3 dying didn’t help. As I say he looks so much better. He’s got some colour back now. Mr Collins his surgeon came in to see him at 7.30 this morning. He has put him on a nebuliser every 2 hours which is really clearing and he’s able to bring up yuk with that. Also he’s allowed 2 sips of water every half hour.

10.3.13

Went in at 2 and left at 6. All in all I saw him for about an hour and a half as I kept being banished to the relatives’ room whilst they moved him into a chair and then did dressings. Then they couldn’t get blood from him so had to put a new line in. He is much better in colour but as the afternoon went on he was exhausted. They stood him and a few steps this morning. Then he had to do exercises. Then this afternoon they sat him in a chair for 2 hours. I know they have to do it but personally I thought it was to much seeing what he did this morning. I left at 6 and they was just going to put him back to bed. He looked shattered. Oh he sends his love to everybody.

11.3.13

After breakfast I went over to the lodge. It was quite like old times. Even though it was all new people it was still all so friendly. Stayed there till lunchtime and then had some lunch in cafe that’s run by the handicapped. Went over to see him at 2 and he looks much better. He’d asked me to get some cordial. He can now drink when he feels like it. They’ve said he can have a cup of tea tomorrow. They have taken one of his chest drains out and stopped the epidural and replaced it with Panadol and Morphine. The physio’s walked him a few steps this morning and he sat in the chair this afternoon for 2 hours. Martin his Anaesthetist came and had a good chat. I said that Mr Collins had said that Martin had had a struggle. He said it was the way Bern’s jaw is and it was difficult to get the usual airway in. He said also they had a bit of a struggle when the lung was deflated, but everything is OK now which is all that matters. He still has an oxygen mask on all the time. I am going home tomorrow.

12.3.13

Short and sweet tonight as I’m tired, but I’m home. Went to see him and Olive (Angel) met me at ICU door. My heart went in my mouth. She said don’t worry I’ve been waiting for you as he has just been transferred to HDU. She said she saw him this morning walking and doing very well. She said he will be in at least another week. When he comes out he will still have his feeding tube in and I will be taught how to change it. By the time he leaves hospital he will be on more solid food like soup etc but this tube is a food supplement. I tried to get into HDU but they were changing his dressings so I had to wait another half hour before I could get in. He’s got his own room. He looks much better and he was pleased to see Pete and Julie even though we got a slight ticking off as its only 2 visitors, so we didn’t stay long. He hasn’t had a cuppa tea yet still on water. He has just text me to say he’s having another drain removed. I’ll find out which one tomorrow.

13.3.13

I tried phoning HDU 3 times before I got any info which wasn’t much. My landline is now down so got to rely on mobile. Bern phoned me at 12 to say he may be shifted to another ward but doesn’t know where or when. He said he walked to the HDU outside door but he’d had enough. He had a chest drain removed yesterday. His medication for pain will more than likely be changed to being self administered. His nurse last night / morning he said she was like a nun, so gentle and kind even when she washed him. He’s going to ring me tonight. He hasn’t rung me tonight so I expect he’s too tired. He must be still in HDU or else they would have rung me.

14.3.13

Bern phoned me from St Gerard’s ward which he was transferred to last night. He’s in with another bloke. He had quite a disturbed night as they came to take blood tests twice. They are still washing and shaving him. Mr Collins came and saw him this morning and he may have another drain removed. He is still very wheezy and coughing.

He’s just rung me. He absolutely shattered. His sugars are very high at the moment. He’s been walking this morning and sat out all afternoon so he’s shattered. He was going to ring me later but was afraid he might fall asleep. He’s had a cup of tea and a cup of coffee, but didn’t like the coffee (first one since before Christmas) He’s had quite a few of the team come to see him including 2 medical students ( he’s an experience for them with the amount and severity of his op) He has had a foot of the oesophagus’ and the top half of his stomach removed. He hasn’t had any more drains or tubes removed

He’s just phoned and he’s had his nose tube out. He said its lovely as it was starting to hurt. Hopefully another drain out tomorrow and Mr Collins said if he continues to do as well as he is he will be allowed home early next week. Hopefully he will be allowed to have jelly and ice cream tomorrow.

15.3.13

He’s phoned twice this morning so I think he must be missing me. He’s been walking around and sitting out all morning. He’s had the team round and Olive (Angel) who is off till Tuesday. She seems to say that she wants me to learn how to change his food tube, but another nurse said some people don’t bother with it but I’d rather go with Olive (Angel) He’s also been told that physio’s will be brought in over the weekend even though its Bank Holiday.  Mr Collins is adamant that he wants Bern to walk out of the hospital when discharged rather than be brought home in an ambulance.

Phoned my friend Anne this afternoon. We got friendly whilst staying in The Lodge as she had cancer in the same place as Bern. I only spoke to her 2 weeks ago. Her husband told me she’d died 12 days ago. Absolutely gobsmacked such a lovely lady only young in her 40’s with 3 kids. Berns just rung me and he’s had the last drain removed. Only the catheter to go now. He had jelly and ice cream at lunchtime and he’s got custard for tea.

16.3.13

He phoned me lunchtime and said the Professor (part of Mr Collins team) had been to see him. His Catheter has been removed, he didn’t like that. Good job he was with it as one of the dinner ladies tried to give him a dinner (that’s how accidents happen) He said he preferred the other places as this ward is quite lapsed. He asked for jelly and ice cream. He had been walking and waiting for the physio’s. He phoned me again at 2 and if all things go to plan he will be coming home Monday.

He phoned me tonight to say as he can’t wee they have put him back on the drip.

17.3.13

He phoned this morning and he is off the drip as he’s weeing now. He’s had a Weetabix for his breakfast so it’s getting more solid. He’s waiting for Mr Collins and team come around today so hopefully he will hear the news he wants and be able to come home tomorrow.

He is not a happy bunny. Mr Collins came round and won’t let him go home until he has seen the dietician. His blood sugars are very high 15 so Mr Collins said he wants the dieticians to sort it out. He is supposed to be on soft diabetic meals. His dinner consisted of mash potato and cabbage and jelly and ice cream. He told Mr Collins the food was dire and he agreed. They are given him that sort of food and then food supplement which is piled with sugar and then putting him on an insulin drip overnight. So I don’t think the dietician will be there tomorrow as its Bank Holiday so it’s going to be Wednesday before they will let him home. As I say he’s not a happy bunny.

18.3.13

He’s just rung me, very down. He had a Weetabix but wanted to bring it back up again. He hadn’t had his lunch. The professor came round and Bern mentioned it and apparently it’s a common thing. He’s had the top half of his stomach removed so along with the foot of oesophagus, it’s stretched the stomach up. Something he’ll have to get used to. He said the Dietician won’t be around today as its Bank Holiday so it will be at least Wednesday before he comes home.

When I was nursing and meals were ordered you’d put down Diabetic, Veggie, Hindu, Jewish and the canteens would respect that. Even though its all changed and you have menu’s come round he’s written diabetic soft but they’ve not taken any notice.

Well I’ve been home now for 2 weeks and I am on the long road to recovery.

Thanks to those people who have prayed for me and wished me well and especially to my rock – Maggie

4 years later update

Well 4 months after the Operation I was told that it was a success (Dr Chris said “It’s all in the bin”) cancer all gone. I admit I did cry but tears of relief. I now spend my time at home with the chickens and two morning at the community radio as a presenter and as a co presenter. I still worry about every ache and pain as every cancer survivor does but life is good and we go on enjoying it. we have now found – Cruses wonderful.