Awake and up all night

I am on my 53rd round and still not learned anything!

Thanks Gill, and last night I managed zero sleep, not one minute. I usually manage a little! Never mind, inwrite 3,000 words of my autobiography (mainly for my son. I interviewed my Dad to get his story. Ot is impo 

Hi Jake.

Well done for writing your autobiography, and it is indeed important for doing so. A lot of people find it cathartic to write down their travails, so I hope you get that too.

Not so fabulous is zero sleep, so I hope you manage to catch up at some point today. I can't imagine how 53 rounds of chemo must feel - my OH had 30 RT and was whacked out, so you must possess some stamina my friend. Well done you! xxx

Hello Jake1642 and Everyone 

For your information, here's a link to a blog one of my fellow Community Champions wrote:

Chemotherapy - Side Effects - Hints and Tips.

We also have a Chemotherapy Group - link here:

 Chemotherapy forum 

Best wishes - Brian.

My name is Stephen not milley did not no what to expect from speaking to real people on a chat line but you all sound very nice and caring and you have all gone through a lot of pain i live in a little town in Wales called pontypool and i think my time is coming to an end with the company i work for for 26 years the thing with the company is thay have had bus drivers who have past away with cancer but i don't think they have had someone who is still alive from cancer and still working for them in my mind i do think they don't no what to do with someone with cancer so it's easier to disapled me which is so wrong that's all i want is a bit of help which they don't no how to do that that's the thanks for 26 years with them 

A few nights ago I fancied a coffee at 11-30pm. The inevitable result was a lack of sleep that night, followed by a day during which I may have snoozed in my armchair rather too often. Writing your autobiography is a good idea. Your son will appreciate it. My dad was very quiet and rarely volunteered information about his earlier life. I did find a little bit more when I applied for his service (RAF) records. He joined in 1939 because he did not want to be in the army like his dad. He had a full career in the RAF, reaching the retirement age of 55 in 1975. His records showed a fair bit of time in Africa during WW2, which explained an old photo of him in what looked like a mid-African location - he was riding a horse! Some writing on the back of the photo had what turned out to be a place name when the internet came along to assist, then the service records confirmed an RAF presence and gave dates. Fascinating, but he never said a word about it. I keep a diary but such is the excitement in my life, many entries are 'Got up. Wrote in diary. Went to bed at 1am.' On better days it might say 'Loaded the washing machine. Two loads today.'  Gripping stuff !!  Ray x

Hello Stephen (Milkey ) 

A cancer diagnosis is classed as a disability under the UK Equality Act 2010 and this ensures automatic protection against workplace discrimination.

If you are having issues with your employer - if you are in a trade union, have a word with your union representative. If you need specific advice you can call our Support Line on 0808 808 00 00 (9am to 5pm Monday to Friday) and ask to speak to an Information and Support Advisor. You can also put your question to one here:

Ask an Information and Support Adviser 

I hope the above helps, please do comeback to me if I can help further.

Best wishes - Brian.

I think one of the biggest things for me, and I'm just a carer is the ability to switch off and relax. Witnessing the constant rollercoaster of appointments, scans and consultations has made me hyper vigilant. Even when there's a break from all of this, I have a feeling of worry and foreboding. 

Hi Uki. Let's have less of 'just a carer' if you please I officially reached retirement age right at the start of OH's diagnosis, but have never worked as hard in my entire life. As you say, we live through all the appointments, scans, therapies, and the rest, with our 'patients'. As he can no longer speak, I need to do all the talking on OH's behalf and try to get inside his head when he can't articulate sufficiently how he feels via his writing board. It's extremely challenging and frustrating, so we don't have an easy ride at all. I've swotted up so much about his condition that I've been asked, many times, if I've trained as a nurse. I've also been asked if I'm his mother!! Probably because the whole process has made me resemble Zelda from Terrahawks, but that's another story.

Anyhow, just remember you do an important job and save the NHS a fortune in personal care. The last time OH landed up in hospital, I went in every day to do all his stoma care and even helped out with others on the ward. I was asked if I fancied a job, but that was a joke - I think!

Don't do yourself down lad, as the worry and foreboding are a constant - they don't ever go away. I'm unsure whether this post will encourage or make you run for the hills! Think Chumbawamba, as per Brian, and march foreward my friend xxx

Thanks Brian much appreciated the thing i am looking for is how or what to do now as my sick will be coming to an end with my company which is 28  weeks so the company will sack me because of my attendance from the cancer thay are only disapled me for attendance and not the cancer which is so wrong when i first got the cancer i was of sick for about 7 months then when i went back to work i had no worrnings because of the cancer but now because of my health issues they disapled me but it is the same now as before with the cancer