I think I have lymphoma

[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

[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

[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'

[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.

[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?

[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

[audikentman]

Thanks for the kind words.

Certainly does put things into perspective, I think I will take a different outlook on life now.

I was at work the other day, someone moaning about work, I had to walk away, was tempted to say 'Shall I tell you about my year'

Having a course of jabs at my doctors to help build up my immune system.

Just have a load of hospital/consultant appointments lined up now.

[audikentman]

Take a minute and read this
http://www.cancerresearchuk.org/about-cancer/cance...
I was Numbers
1, Breathlessness
10, Heavy night sweats.
17, Persistent cough
20, Unusual lump or swelling.

[audikentman]

Hi yes, sorry I was away in South Africa from 28th November. Catching up with everything. Still on light duties at work. They have me training people up for 2 - 3 hours a day

Had a follow up with the radiotherapy people at St. Thomas Hospital on the 8th. Got quite emotional walking there from the station.
Consultant had a chat, feel of my lymph nodes. Said there was no need to come back

Appointment with company doctor tomorrow.

Then the biggie 12th February Kings for Blood tests and a PET scan. Funny thing was 16th February 2015 was when I had my 1st blood test.

[audikentman]

Yes almost 1 year to the day of getting my 1st blood test.

No date apart from the 12th, no doubt I will hear the phrase 'sharp scratch' though

[audikentman]

1 year ago I went to the doctor because I had a cough, she referred me for a blood test.

Today was a Blood test at Kings. Thyroid baseline and bloods. Meeting with the haematology oncologist Results from a PET scan. Heard the 1 word anyone with cancer wants to hear 'Remission. Boom!

As I walked back through the waiting room smiling I realised some of the people there are about to receive the hammer blow that I had last April 'You have cancer' I also realised that some may not survive the fight.
I also know I'm not the same person as I was before but thanks to a great team at ?Kings collage hospital and the ?NHS? I'm still here. 4 months then another appointment with another blood test.

Survivors keep smiling. Fighters keep fighting.

Edited by audikentman on Tuesday 16th February 23:32

[audikentman]

Thanks all, certainly a roller coaster year, don't remember chunks of it myself until I read this back.

Hopefully it will make someone go to their doctor when somethings 'not quite right' and give hope to anyone in a similar situation.

[audikentman]

8Ace said:

Really pleased for you. I've been following this thread with interest as a close family member was diagnosed with Grade II Hodgkins at about the same time. They were given the happy news of remission just before Christmas and I'm so glad you're there too.

Really pleased for them, hope they got through it ok, its a cancer I had never really heard of before last year.

[audikentman]

j4ckos mate said:

Thats bloody great news get yourself on holiday and get some fundraising done for the hospital, pay it forward mate,

Thanks. Yeap 100% agreed as soon as I'm back on my bike will do.

Also its amazing how much money a company can raise by doing a Macmillan coffee morning, where I work we do it once a year and always send a nice cheque off.

Ironic thing is 3 years ago I did Ride24 Newcastle to London in 24 hours for Cancer Research.

[audikentman]

If you have 5 minutes there is a video to watch. It can apply for any cancer

http://www.huffingtonpost.com/outspeak/cancer-pati...

Quote ''Cancer sucks. We all know it. But trying to understand the fear and pain of a cancer diagnosis is impossible unless you have personally experienced the shock.

Radiant Racheli, was diagnosed with Hodgkin's Lymphoma in May 2015. She refused to let the cancer take away her positivity, and chose to share her journey of acceptance through her vlog. Racheli has been cancer free for 2 weeks, but has found a new purpose through her struggle with the disease.''

[audikentman]

mclwanB, if you want a chat let me know and I will give you my phone number. There is also a group on Facebook for it.

I hope this post hasn't scared you too much

Like you I never smoked in my life and before this was cycling 150 - 200 miles a week. I think the trigger for mine was a really heavy cold in October 2014, sent my white blood cells haywire.

Mine started with a cough, sounds exactly like yours, the cause was a tumour the size of a fist in my lungs. But after 1 session of ABVD chemo the cough had stopped.

Quote '' ultrasound to find a lymph node then stick a smallish needle into it'' sounds like a needle biopsy on a lymph node, you will probably need a full biopsy, ie remove a lymph node to check if you have Hodgkins or Non Hodgkins, as you said its under full anaesthetic, but doesn't really hurt, just kept in overnight for observation, its all to do with the cell type, as I'm sure you know from Googling.

What hospital are you at? Kings have been great for me, its just been a year of free drugs and hospital visits.

Edited by audikentman on Sunday 6th March 15:07

[audikentman]

mclwanB said:

Thanks Audikentman, much appreciated. I actually have found the thread to be very reassuring in general. When you initially think you've been diagnosed with primary lung cancer you feel like celebrating anything else!

To be honest the whole smoking thing probably results from the query over primary lung cancer and is probably nothing new- just the severe chronic lack of sleep has reduced my patience!

I've had 2 biopsies so far- fine needle of a lymphnode and a core biopsy of the mass in the lung. Booked in for a keyhole biopsy of the mass itself in the mediastinum next week Didn't realise that you had a chest mass- you didn't have any chest pain, did you?

I'm in Shropshire so Telford/ Shrewsbury and now Stoke, for keyhole biopsy as so specialist, quite likely trips into Birmingham soon too for PET amd possibly chemo. Going to get very familiar with the local hospital facilities!

Really mean it if you want to talk at anytime let me know or if you are on Facebook look here
https://www.facebook.com/groups/22423098653/

I thought I may have had mesothelioma. before I worked on the railway I worked in garage workshops when there was asbestos in brake linings and clutches, my uncle died of it so was actually relived to have H.L although its not the best thing to get the outlook is better than mesothelioma.

Also had terrible night sweats, at the time I thought it was either the cough/cold or I was having nightmares, I know it sounds weird, lol.

I had needle biopsy, and a full biopsy, both in my neck and a lot of blood tests, didn't need a bone marrow sample, although I know some people who have. I've seen the results and my white cell count was mental, no doubt being a vet you know far more about blood tests than me.

The PET scan showed far more tumours than I thought I had (I was certain I had 3, under my ear, top of my shoulder and armpit, all L.H.S) never knew a thing about the mass in my chest, no chest pain at all, although when I went for a bike ride I kept saying to friends I couldn't breath, felt like a belt was being tightened on my chest, not surprising really, the PET scan also showed the lymph glands on my R.H.S were also 'active'

Don't Google too much though you will scare yourself, and Google says everything is cancer, although with me it was 100% accurate

Edited by audikentman on Sunday 6th March 16:55