I think I have lymphoma

[audikentman]

C0ffin D0dger said:

So after being diagnosed with the Sarcoidosis I got put on steroids to control it + the omprazole (also 20mg) as the steroids can be quite hard on the stomach. I'm like a new man, no indigestion, bowels back to normal, can eat foods that would have normally had me reaching for the Gaviscon during the night without any bother. Not sure if it's any good to you staying on it long term but as and when I come off the steroids I might ask the docs about whether I can keep taking the Omprazole.

Yeap, almost life changing, I stopped taking them for 1 day, just to see if I needed them, instantly the acid came back, also have to keep taking Co-Trimoxazole to stop infections for at least 6 months so may keep them both going. I was told last week that you can take up to 40mg per day with no problems.

I have a friend who has been on them for 4+ years and has no bad side effects.

[audikentman]

Another update, still heard nothing on the radiotherapy, I've now had about 5 months off (my T&C's are 6 months full pay per year then down to 1/2 pay for 6 months) so I want to keep 3 - 4 weeks back for when I have my radiotherapy, so I keep any reduction in pay to a minimum. Called work and asked for a return to light duties until the treatment starts, told I need a resumption medical due to the time I've had off.

Went to the doctors on Monday, had a chat with the Doctor, asked for her to say its ok for me to return to work on light duties, wrote the fit note out with, phased return to work, amended duties altered hours all ticked. Then phoned work to see if they had booked me an appointment with our company doctor, after a bit of faffing about met with the company doctor today, told him about feeling fatigue etc, he wrote a nice letter saying no more than 2-3 hours per day and light duties only with a further meeting with him in 1 month.

Does anyone know roughly how long I will have to wait for the radiotherapy to start?

[fridaypassion]

Sounds excellent. Name and praise on the employer there I think. Plenty out there like my old A holes that need to learn how to look after employees!

[audikentman]

Been an 'interesting' few days at work, walk in 20 minutes, drink some tea and chat, walk home 20 minutes, then feel completely shattered sit on the sofa and fall asleep for 2 - 3 hours.

Only on 1 tablet a day for anti-acid and 1 on Monday, Wednesday and Friday as an anti-bacterial, 1 month ago I would have been taking 11 tablets for breakfast post chemo.

Meeting at St Thomas Hospital on Friday about the radiotherapy. Feels like I can almost see the finishing line now.

[audikentman]

Thanks, I guess I thought 'Chemo over thats it everything will be fine' Turns out I was wrong.

[Axionknight]

How did the meeting go, chap, all well I hope?

[audikentman]

Appointment at St Thomas went ok, yet another blood test, another CT/PET scan to come, then 17 sessions of radiotherapy to come, for some reason it put me on bit of a downer, mentally I geared myself up for 15 sessions, (3 weeks), I was hoping they would say 10 sessions (2 weeks) now 17 sessions seems like 4 weeks which is a month, I know its only 2 more days but it seems like the finish line has been moved further away.

Have a good weekend everyone

[Moominho]

Just checking in, hope you're not feeling too down. I know it's hard, but in the grand scheme of things you have come so so far, you have done brilliantly. And the end is in sight, even if it has been put back a week. All the best and have a brilliant weekend!

[audikentman]

Just back from a week convalescence away in Turkey, not much fitter physically, but a lot stronger mentally paid for my a benevolent fund I belong to

Still on 2 hours a day at work.

Today a CT scan and a mask made at St Thomas ready for my 17 sessions of radiotherapy that starts on 13th October at Guys in London.

Freebie flu jab at the doctors tomorrow, along with a repeat prescription for Omeprazole, and something for the water retention I now seem to be suffering, (swollen ankles and skin on my hands that feel too tight).

[audikentman]

Short notice hospital appointment yesterday, due to a tight chest and being out of breath, a few climbs of the wards stairs, heart rate, oxygen levels, blood test (surprise surprise) chest X-ray and something for the weekend in the form of Clarithromycin, funnily thats what my Dr prescribed for my cough and shortness of breath way back in February when this all started

[hondafreek]

I'm sure this is just a blip, may even be stress induced. Keep us informed mate. We are rooting for you.

[audikentman]

Thanks, yes maybe stressing myself the more I try not to think about it, the more I end up thinking about it also thinking about the radio now I've had the mask made up and the 4 marker tattoos are done.
Back to Kings tomorrow, check up, probably another blood test along with running up and down the stairs. Hopefully they will confirm it is just a chest infection.

[audikentman]

Follow up trip to Kings today, another cannula, blood test (natch) CT scan, and a prescription for steroids just as the chemo steroids were going out my system and the previous bloating started going down.
Another appointment on Friday and then a periodical medical for work, that should be fun 'Please list any medication you have taken in the past 4 weeks'

[Moominho]

audikentman said:

periodical medical for work, that should be fun 'Please list any medication you have taken in the past 4 weeks'

Haha, that will take a few hours by itself!

More steroids is a pain, it's the thing my dad dislikes the most, as it affects his appetite and sleeping. Best of luck for Friday

[audikentman]

See Doctor Tom at Kings, about shortness of breath and cough, blood pressure, heart rate, oxygen levels, temperature, blood sugar levels. Steroids reducing. then off to the MediCenter for my periodical medical.
Nurse checks blood pressure etc then wait to see the Doctor.
Doctor at the MediCenter ''Have you finished your treatment?''
Me ''No''
Dr ''So why are you here?''
Me ''I don't know''
Dr ''Come back and see me again in 6 weeks after your radiotherapy.

Get home, Kings Doctor phones, radiotherapy is going to be delayed until I've had an ECG and they find out whats wrong with my chest. Hopefully its not bleomycin toxicity

[audikentman]

Radiotherapy should have started on Monday, currently on hold.

Today was 9 hours at Kings. A heart Echo scan, a blood test from my artery, a lung function test, a chest X-Ray and a lung scan which involved inhaling radioactive gas and another injection of trace in my arm.

I can almost hear Jeremy Hunt crying

Back to Kings on Friday to discuss the tests at Haematology and cardiology departments.

[Moominho]

Sounds like you're going through a rough time of things at the moment, hope you feel better soon

I would say try not to be too frustrated as you're so close to the end but I'm sure I'd be exactly the same.

All the best mate

[audikentman]

Another update, got a phone call at 3pm on Thursday, was then having my 1st Radiotherapy at 6pm @Guys the problem was my mask was at St. Thomas.

Friday was meeting the head of radiology @10am St.Thomas, then a meeting with the haematology Doctors @12 a meeting with cardiology @2pm at Kings. Then back to radiology @4.15 at ST.Thomas.

Saturday was my 3rd session of radio at 9.15

Today (Monday) is number 4 of 17, what can possibly go wrong?

[Moominho]

Wow, no rest for the wicked, eh? It'sa hardcore timetable, you must be knackered from all the travelling about, let alone the treatment itself. At least this way it will be over soon though. Hope it goes nice and quickly for you mate.

[audikentman]

Finished my 17th session of radiotherapy.
Some side effects that will probably be around for the next couple of weeks.
Plenty more consultant and doctors appointments still to come.
The finishing line is in sight