9th.June Oncologist Visit

So after my cancer shock on the 26th.May, I was promised an urgent referral to an oncologist. So two weeks later I actually got the appointment. I'm afraid he didn't give me a lot of choice, either do nothing or undertake a further 3 or 4 rounds of chemotherapy. In either case we are not talking about a cure, it is only a matter of a few months here or there. In my first round of pre-op chemotherapy I was very ill and the hospital stopped it after one round only. Then I was very fit and healthy and I was still ill, now I am not so healthy or fit so the idea of more chemotherapy is really a non-starter.

Recall to QA Hospital Portsmouth

26th.May

I was informed that the CT scan on the 19th.May showed that I had fluid on my lungs and that I should go back to hospital for this to be removed, possibly with an overnight stay. However, there were a number of other issues bothering me so I prepared a list of these issues as follows:-

Main Problems

• Near constant stomach pain/discomfort
• Painful to urinate
• Cough and breathlessness
• Lumps at surgical incisions

Urination

• Painful, worse at night. Have to sit down sometimes to get the flow going
• Flow is weak and intermittent
• Felling I can't empty my bladder, often have to go again 5 minutes later
• Saw GP on the 29th.April and tested for UTI
• Results came back as 'abnormal'
• Given 2 doses of Monuril (fosfomycin). Didn't help
• GP did internal examination on tth 3th.May. I had bowel problems also at the time/. Prostate/Urethra painful when probed.
• GP suspected prostatis. Currently on a 4 week course of antibiotics, Ciprofloxacin. 
• Not noticed much effect so far
• Why am I on a powerful antibiotic when I don't have UTI
• GP would not do a PSA
• Slight side effects, feet swelling, numb toes and headaches 

Stomach

• Painful first thing in the morning and late in evening. Generally improves during day
• If pain persists, I take 2x30/500 effervescent cocodamol
• Hot water bottle seems to help a bit
• Can be easier to sleep in chair rather than bed sometimes
• Need to force myself to eat
• Get full very easily
• Suspect oesophagus has narrowed a bit

Bowel Movement

• Can be painful and uncomfortable
• Totally different to pre-operation

Chest, Cough, Breathing

• After oesophagegtomy on 10th.February, had a sore throat
• After hospital discharge this developed into a cough which over the weeks has got progressively worse
• Initially after hospital discharge, I started going for walks, increasing the distance and doing DIY jobs.
• GP tested my lungs/breathing on 29th.April and did not detect a problem
• 3 weeks of so ago my chest really started to hurt when coughing/sneezing/blowing my nose. Painful. Felt as if the whole of my ribcage and stomach were involved. Ribs are sore.
• Got more and more breathless. Exercise curtailed.
• Couldn't take a deep breath without a coughing fit. Not coughing up phlegm
• Sometimes at night an detect a slight gurgling sound
• Oximeter 92-94

General

• Felt much better after hospital discharge following oesophagegtomy
• Current status is poor, can't do much
• Some surgical sites have become hard lumps
• Dumping syndrome during April
• One night had acid reflux in bed, very unpleasant, burning in throat. Coughed for an hour.

So I was called into the SAU on the 26th.May to have the fluid on my lungs drained. The surgeon Mr.Carter tried the left hand lung as it was safer but could find no fluid. He suggested I would have to come back and have the drains done using ultrasound to locate the fluid. When I went to hospital I was fine walking up 4 flights of stairs but after his failed attempts he left me quite breathless. Anyway, he decided to have another look at the CT scan and I was quite shocked when he came back and said the lumps at the surgical sites were in fact cancer, esophageal cancer and aggressive. How can this be, well it turns out that the surgeons must have stirred up the cancer during the operation and pulled out cancer cells when when withdrawing their instruments to 'seed' all the sites. In effect they had re-infected me. I should ave been offered post-operative chemo to deal with all that, I was never advised of this risk.

CT Scan

19th.May

After a couple of weeks and my condition not getting any better, I finally get a CT scan to see what is going on. One of the continuous issues since the operation has been my bowels, they were in shock for a while and certainly have not settled down at all so I was hoping that the scan would cover the chest, stomach and as far down in the bowels as possible. 

6 Week Follow-on Appointment

1st.May

Well it didn't happen, coronavirus put paid to that. The appointment was due for the 1st.May but on the 29th.April I had a call from one of the upper GI nurses who talked over with me my current condition. I explained about my breathing difficulties although I had no such breathlessness on discharge. I developed a chesty cough after one month but now there is a bit of mucus and I needed to rest a lot, breathing deeply was painful and triggered coughing, a little bit frightening. My ribs still ached after the operation as well. I also mentioned stomach pains and  the continuing dumping syndrome, my eating was not great and it felt like the feeding tube had narrowed, worse than when I left hospital. In addition I informed the nurse that I had one episode of reflux at night, stomach acid burning my throat, horrible. At this time I was also being seen my my GP for prostatis/urine infection issues. The nurse informed me that all this would be brought up and discussed at the 'Friday staff meeting' on the 1st.May. 

Because of the coronavirus and the fact that QA in Portsmouth had virtually shut down most of their services, I would not be seen in clinic. I subsequently learned that the decision at the  'Friday staff meeting' was to wait a couple of weeks and see how I was feeling then.

2 Months On

8th.April 2020

It's now 8 weeks since the operation and I was hoping to see some significant improvement by now but not really. I am still quite sore, my ribs in particular are quite numb as well. If I sneeze or blow my nose it is painful in my ribs. Oddly enough, I occasionally get itching and hot pinprick sensations on my chest. My stomach area is a bit of a mystery since it is sore and painful at times but I have no idea if it is indigestion, IBS, or just the uncomfortable result of eating and the food not settling well. Eating was a lot better when I first came out of hospital, now eating food is not as good, swallowing can be difficult and sometimes food does get stuck which it did not used to do. Sometimes the food does seem to go straight through (dumping syndrome) although this does vary on a day to day basis. I am keeping a food diary to try and figure out if I am susceptible to any food type or ingredient......so far no obvious suspect. Although I am exercising as well as I can in the current climate, I am still a bit breathless at times which is frustrating as then I have to rest when there are other things to do. In addition, since the operation I had a sore throat which turned into an annoying cough which is guaranteed to start up everytime I take a deep breath. It's certainly turning out to be a long haul.

Outpatients

17th.March

I had an outpatients appointment with Mr.Knight, one of my surgeons last Friday, 13th.March. It was just under 5 weeks since my operation and I was very keen to get my feeding tube and drain bag removed at the jejunostomy site which was only used when I was in the ICU. It was removed OK....what a relief to get rid of that bag. The surgeon also mentioned that he removed 36 lymph nodes, none of which showed any sign of cancer so essentially it means I am now free of cancer. I was not offered any follow-up chemotherapy, the surgeon considered it unnecessary. Mr.Knight planned to see me again in 6 weeks time, 1st.May. In his report he remarked that I 'looked the picture of health'.
It turns out that there are 600-700 lymph nodes in the human body so 36 is not that great a deal. However lymph nodes do play a part in the immune system which is a little bit worrying considering the threat from the coronavirus. Not having any drains or dressings now , I have counted up the number of 'entry/exit' points on my stomach, chest and back form the keyhole surgery........there are 9 sites all healing well but some are a bit mis-shapen which hopefully in time will improve.
Today I removed the final dressing from the jej site, it was fine so I was able to have my first shower for 5 weeks.....another milestone.

At Home

Saturday 7th.March
It is now 27 days since surgery and 12 days since discharge form hospital. Despite my pessimism, I can eat pretty much what I like now, apart form steaks etc., and I have not experienced and acid reflux problems. However, food volume is reduced quite a bit since I get full very easily and of course I still need to chew very thoroughly. Spent my birthday visiting my GP and getting my chest drain bag removed. Only one drain left now at the jejunostomy site.but that has to wait 6 weeks after the operation. Have lost a few pounds as expected so getting on the exercise bike regularly now and yesterday did my first walk around the block trying to get a bit of muscle loss back. Otherwise things seem to be improving, my GP is happy for me to start driving.