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.
Saturday, June 13, 2020
Sunday, June 7, 2020
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.
Wednesday, April 8, 2020
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.
Tuesday, March 17, 2020
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.
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.
Saturday, March 7, 2020
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.
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.
Friday, February 28, 2020
Oesophagogastrectomy
28th.February
Yes you can see what the operation was called, alternatively the Ivor Lewis procedure. Was discharged from hospital on Monday 24th February, exactly 2 weeks after the operation. I think they were pleased with my progress and it was great to get home. However, having spent 2 weeks in hospital , the majority of the time horizontal in bed, it was quite tiring the first day or two to start moving around as 'normal'. From thereon the rest periods have become less. Bowel management continues. Food needs to be high in calories and protein, eating regularly now most of the stuff I would have previously avoided. I left hospital with 2 drains in place (stoma bags), one at the jejunostomy site and one for a drain in my chest on my bac. they seem to have dried up so looking forward to getting those removed as they are uncomfortable with regard to sleep. One thing I must say about the NHS is although people moan and groan about the service, they really did pull out the stops for me when I needed them and I am grateful to all the doctors and nurses that looked after me in hospital, I cannot praise them enough.
I am going to add onto this post a number of sections detailing my stay in hospital ie.,
a) Preparation
For anyone having to undergo this procedure, I would give one simple piece of advice - get as fit as you possibly can beforehand. If you can get 4000ml on the spiro-ball you should be OK. This is a lung function test but it does not mean you will have issues if you score below this.
b) Intensive care Unit
After the operation this is where I woke up with tubes and wires everywhere. Seems worse than it actually was. The epidural in my back was controlling and discomfort in my chest. Life in The ICU was quite good, I had virtually individual attention. The day after the operation the physios had me out of bed, I was quite weak and light headed at first but I did stand up OK with all my attachments. The next day I was walking and having a go on heir exercise bike. I passed so next day they kicked me out off to te surgical ward.
c) Surgical Ward
A smaller nurse/patient ratio here but still they looked after me well. Plenty of attention here from all the support and discharge groups in the hospital. The physios took me fo walks and up/down stairs. All feed at this point was directly intravenous with some sips of water allowed. Some of the tubes/drains were removed here to make it a bit more comfortable. Had a catheter and chest drain permanently attached so these had to be carried every time I got up. Had a small infection at my jejunostomy site so was constantly pumped with antibiotics and pain relief. I was not really in pain as such but quite sore and that was the thing being controlled. At the end of the first week I was sent to the general ward.
d) General Ward
Here I was fortunate to get a single room with its own toilet and boy did I need it! This is the bit they don't tell you much about in advance but for the first week after surgery your bowels are on strike, or kept inactive with medication, but this is the second week, getting the plumbing working again. However because the nurse/patient ratio on this ward was quite low, I was largely left to sort myself out. Initially I had 'overflow' but with laxatives, the original material in the bowels started to shift, not nice, hard lumps and painful. At this point the catheter was removed which helped mobility and I also lost one chest drain and my neck access. Thought I had got rid of all the old stools but no, one got stuck giving me grief so I had an enema. What a relief, you would not believe.
During the week I went from purely liquid food to to pureed to food with small lumps. My bowel management follows in sympathy, a long process though.
e) Problems
The only main issue that I had was canulas. Having removed my main neck canula, I was left with two in my arms for various liquid feeds, painkillers and antibiotics. Unfortunately, canulas only last a maximum of 4 days before needing replacement but not many staff seem to be able in insert them correctly. I had 10 failed attempts forma doctor and the 'official' canula staff in my arms so my veins were collapsing and bruises everywhere. Fortunately fo me, a brilliant nurse on the ward got my final one in place first time.
Yes you can see what the operation was called, alternatively the Ivor Lewis procedure. Was discharged from hospital on Monday 24th February, exactly 2 weeks after the operation. I think they were pleased with my progress and it was great to get home. However, having spent 2 weeks in hospital , the majority of the time horizontal in bed, it was quite tiring the first day or two to start moving around as 'normal'. From thereon the rest periods have become less. Bowel management continues. Food needs to be high in calories and protein, eating regularly now most of the stuff I would have previously avoided. I left hospital with 2 drains in place (stoma bags), one at the jejunostomy site and one for a drain in my chest on my bac. they seem to have dried up so looking forward to getting those removed as they are uncomfortable with regard to sleep. One thing I must say about the NHS is although people moan and groan about the service, they really did pull out the stops for me when I needed them and I am grateful to all the doctors and nurses that looked after me in hospital, I cannot praise them enough.
I am going to add onto this post a number of sections detailing my stay in hospital ie.,
a) Preparation
For anyone having to undergo this procedure, I would give one simple piece of advice - get as fit as you possibly can beforehand. If you can get 4000ml on the spiro-ball you should be OK. This is a lung function test but it does not mean you will have issues if you score below this.
b) Intensive care Unit
After the operation this is where I woke up with tubes and wires everywhere. Seems worse than it actually was. The epidural in my back was controlling and discomfort in my chest. Life in The ICU was quite good, I had virtually individual attention. The day after the operation the physios had me out of bed, I was quite weak and light headed at first but I did stand up OK with all my attachments. The next day I was walking and having a go on heir exercise bike. I passed so next day they kicked me out off to te surgical ward.
c) Surgical Ward
A smaller nurse/patient ratio here but still they looked after me well. Plenty of attention here from all the support and discharge groups in the hospital. The physios took me fo walks and up/down stairs. All feed at this point was directly intravenous with some sips of water allowed. Some of the tubes/drains were removed here to make it a bit more comfortable. Had a catheter and chest drain permanently attached so these had to be carried every time I got up. Had a small infection at my jejunostomy site so was constantly pumped with antibiotics and pain relief. I was not really in pain as such but quite sore and that was the thing being controlled. At the end of the first week I was sent to the general ward.
d) General Ward
Here I was fortunate to get a single room with its own toilet and boy did I need it! This is the bit they don't tell you much about in advance but for the first week after surgery your bowels are on strike, or kept inactive with medication, but this is the second week, getting the plumbing working again. However because the nurse/patient ratio on this ward was quite low, I was largely left to sort myself out. Initially I had 'overflow' but with laxatives, the original material in the bowels started to shift, not nice, hard lumps and painful. At this point the catheter was removed which helped mobility and I also lost one chest drain and my neck access. Thought I had got rid of all the old stools but no, one got stuck giving me grief so I had an enema. What a relief, you would not believe.
During the week I went from purely liquid food to to pureed to food with small lumps. My bowel management follows in sympathy, a long process though.
e) Problems
The only main issue that I had was canulas. Having removed my main neck canula, I was left with two in my arms for various liquid feeds, painkillers and antibiotics. Unfortunately, canulas only last a maximum of 4 days before needing replacement but not many staff seem to be able in insert them correctly. I had 10 failed attempts forma doctor and the 'official' canula staff in my arms so my veins were collapsing and bruises everywhere. Fortunately fo me, a brilliant nurse on the ward got my final one in place first time.
Friday, February 7, 2020
Surgery
Well I may have gotten the wrong end of the stick. Despite having an endoscopy report in writing which says there was no cancer, that was on the inside of the esophagus. A previous CT scan showed that there was some cancer on the other side of the wall but no check was made at this point to see if it had also disappeared. However I questioned this with Mr.Knight who said he had never heard of one dose of chemo getting rid of cancer so he was not prepared to do another CT scan. So I am told I still need surgery. It is scheduled for next Monday and it is an all-day affair with 2 surgeons involved. So there we have it. I have no choice, I am booked into the system. Not looking forward to it. My eating right now is fine, no problems at all with volume or swallowing. Could be 6 months before I can eat a normal meal again assuming everything goes well. However the team of 4 surgeons at the hospital do this operation all the time so they have plenty of practise at it which should be the good news. The downside is that it's a all day affair but it at least is all keyhole so recovery time should be better. Further updates when I get out of hospital
Wednesday, January 29, 2020
Endoscopy
Today I had an endoscopy, not my favourite procedure. Bearing in mind that 10 days ago I had a CT scan but I thought they were gathering as much information as possible before surgery. However, bearing in mind that I had a 3cm long cancer growth in the bottom third of my esophagus last November and had trouble eating and swallowing, today's endoscopy couldn't find the cancer. It would appear that my single dose of chemotherapy did it's job and got rid of the cancer. This I didn't expect but it does explain why I have been back to normal eating anything with no swallowing difficulties. When the supervising endoscopist told me this it was quite an emotional moment for me. He showed me the pictures form inside my esophagus and indeed it was clear. The initial theory is that I was probably very sensitive to the cancer drugs which is why I felt so ill and at the same time so was the cancer which helped enormously to get rid of it. I am now waiting for my care team to let me know now what the next stage is likely to be. No surgery now, I am a very lucky man. However ther is no such thing as a free lunch and there are a couple of residual issues I am still sorting out with my GP.
Friday, January 24, 2020
Update
Friday 24th.January
Last Friday I had a meeting with the surgeon who is one of the team who undertake the oesophagalectomy. He ran through the procedure, a whole day operation in which one surgeon re-configures my stomach and another who works above he diaphragm and once the tumour is removed, attached my stomach back to the food pipe. Probably 2 weeks in hospital. I have also met the anaesthetist who wants me to do a fitness test on an exercise bike next Friday. On Sunday 19th I had a CT scan and on Monday last I attended surgery school. This was a general meeting telling us what to expect after surgery. We tried out a spirometry test kit which basically is a piece of equipment to measure the inhaling lung function. I had no problem with that but a lot of the old crocs there did. One thing mentioned was the importance of exercise before the operation to improve fitness so I am trying to do 10K steps a day now. There were a few smokers and drinkers there who just didn't get it.
Last Friday I had a meeting with the surgeon who is one of the team who undertake the oesophagalectomy. He ran through the procedure, a whole day operation in which one surgeon re-configures my stomach and another who works above he diaphragm and once the tumour is removed, attached my stomach back to the food pipe. Probably 2 weeks in hospital. I have also met the anaesthetist who wants me to do a fitness test on an exercise bike next Friday. On Sunday 19th I had a CT scan and on Monday last I attended surgery school. This was a general meeting telling us what to expect after surgery. We tried out a spirometry test kit which basically is a piece of equipment to measure the inhaling lung function. I had no problem with that but a lot of the old crocs there did. One thing mentioned was the importance of exercise before the operation to improve fitness so I am trying to do 10K steps a day now. There were a few smokers and drinkers there who just didn't get it.
Monday, January 13, 2020
Looking back with Capecitabine
The Mayo Clinic in NY publish a very detailed summary of Capecitabine (Xeloda). It would appear that there are 9 common unwanted side effects reported, 90 less common effects and 57 other miscellaneous effects. So the chances are that you will get some of them, some of them can be lived with during the treatment but others are more serious. For me I had abdominal and stomach pain, diarrhea, nausea, tiredness, weakness, vomiting, chest pain, chills, cold, confusion, dark urine, decreased volume of urine, dry mouth, a low temperature, dry eyes, a crusty scalp, irritability, hot calves, red spots on the skin, sore throat, weight loss, fatigue, heartburn, trouble sleeping, muscle pain, lack of appetite and runny nose. However, looking back on it it is easy to forget how unpleasant it was at the time BUT the bonus is that I can now eat normally. Surgery is next!
Wednesday, January 8, 2020
After Effects
Once you stop taking chemotherapy drugs, what I hadn't realised was the side effects that come along simple because the immune system has been compromised. So apart from the rampant diarrhoea for 2 weeks, I have also got thrush, dry eyes and a constantly runny nose. According to my GP, these will get better in time. However, having got all theses issues I never bargained for, the chemo does appear to have some effect in shrinking the tumour in that I can now eat more or less anything but some of the tastes are still weird.
Sunday, January 5, 2020
I've been Poisoned
Friday 3rd January
In he early hours of Friday morning I had a couple of episodes of really bad diarrhoea so I remembered what the nurse at QA had said that I should try Loparimide and since I had not been issued with any of these pills I decided to get a GP appointment that day. However, it tuns out that Loparamide is the same thing as Immodium so I took a couple before I saw the GP. Now our surgery does not have a very high rating, there are 4 male GP's, 2 of them are reasonable, one is brilliant and the other is just plain awkward to deal with, no sympathy whatsoever and has a bad attitude problem. Unfortunately the surgery only had one appointment left and that was with him. When I eventually got to see him, he was running very late and I was feeling grim, we sat down and for 10 seconds he just stared at me, I thought what on earth is the problem but I just stared straight back at him until he finally spoke to ask me what I wanted. I told him of my problems coming off capacitabine and that I needed some Loparamide but I hadn't realised it was the same as Immodium. He said 'that's up to me to decide, I am the doctor, you've been poisoned' which I thought quite rude. Told me I could take as many as I like which I have done and the diarrhoea seems a lot better today so far. Codiene phosphate is apparently used to seal up the gut, rather than just pain relief so it does work with Loparamide in cases like mine.
In he early hours of Friday morning I had a couple of episodes of really bad diarrhoea so I remembered what the nurse at QA had said that I should try Loparimide and since I had not been issued with any of these pills I decided to get a GP appointment that day. However, it tuns out that Loparamide is the same thing as Immodium so I took a couple before I saw the GP. Now our surgery does not have a very high rating, there are 4 male GP's, 2 of them are reasonable, one is brilliant and the other is just plain awkward to deal with, no sympathy whatsoever and has a bad attitude problem. Unfortunately the surgery only had one appointment left and that was with him. When I eventually got to see him, he was running very late and I was feeling grim, we sat down and for 10 seconds he just stared at me, I thought what on earth is the problem but I just stared straight back at him until he finally spoke to ask me what I wanted. I told him of my problems coming off capacitabine and that I needed some Loparamide but I hadn't realised it was the same as Immodium. He said 'that's up to me to decide, I am the doctor, you've been poisoned' which I thought quite rude. Told me I could take as many as I like which I have done and the diarrhoea seems a lot better today so far. Codiene phosphate is apparently used to seal up the gut, rather than just pain relief so it does work with Loparamide in cases like mine.
Thursday, January 2, 2020
Oncologist
Had an emergency appointment with oncologist today. He said that because I was so intolerant of the chemo drugs, he did not see any point in giving me more chemo so he is recommending I go straight to surgery. However, I have to get fit first and back to normal, that's not proving as easy as it sounds.
Cold Turkey
Went to my second chemo session on the 30th.December but no let up in stomach pain and diarrhoea over the weekend so on the Monday morning didn't feel great but went along to the session but realised when I got there that I was really running on empty, I was emotionally and physically very low indeed, quite exhausted. Any way they told me there was a problem with my blood that were taken the previous Friday so naturally I assumed that was my problem. The bloods were retaken and were OK surprisingly. Because I felt so bad, they would not give me any chemo. The problem has been the high level of capecitabine, 2600mg a day and it was mentioned by the nurses that not many elderly people can tolerate this drug. Since then I have been trying to get it out of my system, diarrhoea and stomach pain being the main problems. However, I am eating better now.
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