I think I have lymphoma

[audikentman]

Good to hear you sounding positive, thats part of the battle, also eating healthy. I bought a nutri ninja thingy, during the treatment when I could face food it meant I could sip on a blend of fruits that helped me get my 5 a day, also I made up a nice batch of minestrone soup with is another good booster, cut down on friend food, I was just going pescatarian (started off my N.Y.Resolution) and I've just kept it going.

I was really surprised how good the NHS were, this was my 1st dealings with them on this level in 50 years and I think they are great, from my Gp who 1st saw there was something wrong, to the specialists who treated me.

I forgot to mention the sperm banking. I was asked and said 'No thanks' I've dodged the bullet for almost 50 years I don't want to start now'. Then at a follow up appointment last Thursday I was warned that I may still be fertile and if I didn't want children I still need to take precautions.

It all seems bit of a blur looking back, as others warned me at the start, I think I was told what I had and then within 2 weeks I was having my 1st session of ABVD chemo. The expression you will hear (if you do have H.L) is 'tough but doable'.

1 good thing about cancer, not that there are many, are free prescriptions and cancer is a disability so it helps from the perspective of employment law. My company at a local level were great, I get 6 months full sick pay which really helped, although I don't think I could have done my job on all the drugs I was taking, also by being at home it helped to keep me away from anyone who was ill.

[audikentman]

mclwanB said:

Thanks for the advice.

Nutrimatics were on offer last week and have been eating a helluva lot more fruit and veg. Hopefully it will help balance the codeine.

I also lost the taste for certain foods and drinks. No more builders tea used to have 10+ cups a day, green tea now.

mclwanB said:

Second the hurrah for the NHS- they've been brilliant over this. A bit scarily so!

Yeap the really step up when you need them, take all the drugs, advice and phone numbers that are offered to you.

mclwanB said:

Fortunately I have been paying a fortune for income protection since I qualified so we just need to get over this month- which we can- & then we're ok. Very flexible in coming back assuming work can be.

You will get over this month and the next year, and come out the other side thinking Wtf was that!

mclwanB said:

Thanks for the advice re work and disability- I'm actually married to an ex lawyer so she'd found out all the relevant info. Are you back at work full time now?

Could be handy with your wife, you never know what will happen. Yes I'm back at work, been on light duties since my chemo finished, I then went away to Turkey for some convalescence (paid for by a benevolent fund I pay into) then came back, pretty much did nothing except book on and go home, then during my radiotherapy work let me come in book on and go for treatment. December I was away in South Africa for a month (which was booked up before I even go ill) then this year so far the company doctor has kept me on light duties, with 2 other drivers (1 had throat cancer and 1 had Non Hodgkins Lymphoma) training other staff up.

[audikentman]

mclwanB said:

In terms of being positive supportive wife and six month old are great reasons, have a supportive family- miles away, unfortunately- and some great friends. I haven't actually had much of the "why me" except for that night I thought I had primary lung cancer and I was looking at my daughter and thinking that she'd never know me. After the realisation that it's lymphoma I've been very relieved and stayed that way. It's just random chance and I thank God I was born now and not 40 years ago when the outlook was grim.

Sounds a good enough reason to me to stay positive. Same situation as you was almost a relief to be told I had Hodgkins Lymphoma and not mesothelioma which I feared.
The outlook is good now, and improving all the time, with plenty of different drug combinations if the 1st 1 doesn't work. My 1st blood test was 16th Febuary 2015 was told I was in remission 12th Febuary 2016, my last day at work properly was March 28th 2015, I'm away from 11th March for 2 weeks and strangely I have a company medical on March 28th 1 year to the day where I think I will be put on a phased return to work.

If I can give you 1 piece of advice it will be, don't worry (too much) its going to be ok.

Daytime Tv, Ebooks will be your friend and I started doing Lego and Airfix models when I had the energy.

[audikentman]

Welcome to the exclusive club of only 1,700 new UK members a year.

Glad you finally got the result you was strangely hoping for.

Try not to dwell on it too much and enjoy the weekend, you have a tough few months ahead but remember its going to be all-right and you wont die.

I will be in touch

[audikentman]

mclwanB, at least you now know what it is now. Is your chemo going to be ABVD?

I was lucky mine was so aggressive and obvious that the lymph nodes on my neck and under my arm were literally coming up between needle biopsy and full biopsy (which was a fairly easy removal of a node on my neck) but until I looked at the PET scan I had no idea I had a tumour the size of a fist pushing on my lungs that was giving me the cough that started my trips to the doctor.

You should (if you haven't already) be assigned a specialist nurse now you are in the system, they are a great point of contact if you have any questions or worries.

Try to get your house as clean as possible, dettol surface wipe on door handles etc, some alcohol hand wash in the house for anyone who visits, you will be more susceptible to any coughs, colds etc now and these can set your chemo back.

fridaypassion I have a friend whose mother had Non Hodgkins Lymphoma and is currently having no treatment just regular blood tests, tbh I'm not sure why, I will try to find out.

Edited by audikentman on Sunday 10th April 12:17

[audikentman]

chilistrucker said:

^^^^^^^^^^
Top advice, I remember when mum was going through Chemo, we were all so aware how dangerous even a cold could be. If any of us even got so much as a sniffle we would stay away.
Also mum bought one of those juicers you were on about, mum and dad made loads of wierd and wonderful drinks from all sorts of fruit and veg. Seemed to really help.

Yeap I locked myself away for a week after my chemo, then the day before I would spend the day cleaning my house, don't think its ever been so clean anyone who came round alcohol hand wash at the door.
I loved the nutri nija so much I still use it everyday for breakfast 3-4 different fruits to sip while I was watching Homes under the hammer in the morning

[audikentman]

I wasn't told about salad and kept eating them, was told to stop any live culture yoghurt but home made soups were my favourite

Its a strange feeling waiting for it H.L seems a hard 1 to diagnose some people seem to wait years, blood tests ok, but when you get the diagnosis you just want to crack on with it.

I remember waiting for my 1st session to start Tuesday 28th April 2015 chemo nurse said ''How are you feeling'' Me I'm looking forward to it.''

Edited by audikentman on Tuesday 12th April 12:56

[audikentman]

Good luck, stay strong and go and smash it!

If you need a chat get in touch.

[audikentman]

mclwanB, any updates on how its going?

[audikentman]

Glad you are coping Ok with it, and hope the online assessment goes well, you have far more medical knowledge than me.

Nausea wise I didn't do too bad, never puked once I just took all the drugs they prescribed. 1 of the worse things I had was constipation, and even then it wasn't as bad as I've read some have, I just maxed out on fruit and veggies, lots of olive oil on everything and an extra strong sennakot every night for 6 months.

The tiredness/fatigue got worse as my treatment went on, but being signed off sick and on full pay for 6 months let me sleep and rest as I wanted too.

How many cycles of ABVD are you having?

I'm just having some chest problems again, went for a couple of brisk 5kms walks and got back on my bike for 1 bike ride and ended up at my doctors, prescription for medication, then sent for a chest x-ray, blood test, usual story, pretty much the same story as last April and told I was suffering with with bronchitis

Edited by audikentman on Friday 10th June 07:31

[audikentman]

I'm glad its going ok for you, plenty of sleep and rest helped me.

For the constipation try lots of fresh fruit and veggies, homemade soup and smoothies helped me, and olive oil, lots and lots of olive oil.

[audikentman]

Great news you are winning, once you get to the half way line at least you can see the finishing line. Its a fantastic feeling when you finally get some good news after a scan rather than the constant bombardment of bad news.

Looking back a lot of my treatment was a drug induced blur with large amounts of sllep and intermittent doses of daytime Tv.

Why was the bleomycin dropped I assume it was the hospitals decision, have you had chest related issues?

I have my 2nd 3 month check up next week and will be thinking of you doing this next year

[audikentman]

I felt the same at my half way scan probably due to so many chemo and post chemo drugs going through your veins already, then they inject you with some nice radioactive glucose.

[audikentman]

Half way then, you can start counting down to the end, have you got a PET scan soon?

This time last year I had just had my 5th of 8.

Half way is when my side effects kicked in, how is your hair holding up, any split nails as well?

Check ups went ok 2nd 3 month one, had a tight chest and a cough again convinced myself the st had come back, the consultant said ''You would be very unlucky for it to come back so soon'' Funny I thought, I thought I was pretty unlucky to get it in the 1st place.
I walked away with an asthma pump to try to open my lungs up, apparently its a common side effect of the tumour and radiotherapy.

Keep kicking its arse the finishing line is in sight now.

[audikentman]

If you are affected in any way you may want to join this

Join and raise awareness about this disease. Register as patient, family, researcher or health professional. You can add your organization as well!

https://www.diseasemaps.org/en/hodgkin-lymphoma/

[audikentman]

Sorry its getting worse, the 4th of August last year was my final 1, the end of the chemo must be in sight now.

If its acid reflux I had it after about the 3rd cycle , get some Omeprazole from your team or your Gp.

But if its just sickness reflux then theres not much you can do apart from take all the anti-sickness drugs the hospital give you

Edited by audikentman on Wednesday 3rd August 00:33

[audikentman]

Sorry not much help, have you spoke to the hospital? I mentioned the heartburn and got put on the Omezaprole, from then I learnt not to suffer in silence.

I was the same on Chemo day, just a slice of toast for breakfast, then a bag of Marmite crisps when I finished, then on home by train and onto the sofa to feel sorry for myself.

No sleep when you want to sleep (was waking up at 4.30 most days) and when you want to sleep full on fatigue and tiredness was what I had

Also the chemo smell, I met some friends while I was going through it, 1 of them who had breast cancer and chemo said she could smell the chemo on me, I guess your dog is the same.

How many more sessions have you got left and will you need radio afterwards?

[audikentman]

Thread Resurrection

Anyone got any updates? I have a check up in July at Kings

[audikentman]

fridaypassion said:

Still watch and wait feeling very good no problems. Regular lump checks. Dropped to 6 monthly bloods.

Hope you're well matey often wonder as I'm sure a lot of us do how you are doing.

Good stuff,

I'm back at work on 3 month check ups, had a few issues, random coughs, colds etc as my body rebuilds its immune system. Realise how fragile life is and to live life to the full, because we are just a visit to the Gp away from a life changing illness. I have 2 work colleague having treatment at the moment, 1 for lung cancer and 1 for bowel cancer.

Watched this on iplayer and bought some of it back to me. Well worth a watch by anyone. I've said before. People who don;t have cancer don't realise how lucky they are.

http://www.bbc.co.uk/news/uk-scotland-40352688

[audikentman]

Good to hear its going ok for you.

I've just had a blood test all came back all ok, even back on my bike now trying to shed some of the steroid induced weight gain