NCLC

Hi sims thank you. I’ve heard the 2nd cycle side effects are less so hopefully she won’t suffer as bad

Hi Hamhat. I’ve been messaging you but got no reply then I realised I’ve been sending the messages to myself (such an idiot ). You can probs see my message in the chat line addressed to myself!  My hubby will have radiotherapy next Monday and will start chemo/immuno next Thursday so things are moving fast now. I hope youon’t mind me asking but how many cycles did u have? And if successful what happens after it? Would really appreciate a response (if of course I get this and I’ve not done something wrong again 

Hi Mym I was in a right state of flux so havent answered anything for a while.  I didnt know about the mouthwash or the pastilles so that was really helpful.  I can honestly say hand on heart that I truly believe it is far worse for the carers than it is being the patient.  You worry so much and honestly most of us are way tougher than you think.  I had seen so much suffering I was in a constant state.  But when it was me, although of course i didnt want it to be anyone including me I was more at peace than even I thought I would be.  Far harder for carers xx

Hi Tessa, I looked for the best v pillow i could find.  Turned out to Aviator £24 free p and p and put it into google search and you will find it.  I have found it amazing and wouldnt be without mine.  Would highly reccomment.  Hope this is helpful Jill x

Hi Tessa I am being treated the same.  for me it is 4 sessions in total - currently.  Remember so many things could change and frequently do.  Took me by huge surprise.  unfortunately I was too weak at the end of the testing and my chemo had to be postponed for 3 weeks so my first one is not till this monday and will be happy to update.  I have had 2 radio already.  I sailed through the first with no side effects.  I assumed stupid me the second would be the same and it wasnt, I felt like I had every side effect going.  But everyone is different so in no way base my experience on what he may or may not be like.  Regarding pain, it is different for everyone.  But in my experience it is totally different to anything I have experienced you know the difference between the pains. Testing after 1 3 and 4 and I have also been told it should drive it back quickly.  I only see that as a huge positive.  Hope this is helpful x

Hi Jill,

Glad to have helped with the advice for mouth care .. like many medications it's a case of trial and error to find what works for the individual.

How are you feeling this week? But, maybe the answer to that lies in the fact that you are awake at silly o'clock. Hopefully you are not in too much discomfort both physically or emotionally. 

Sending you a big virtual hug of positivity... Stay strong.

Mym x

In a much better place than I was, totally upbeat and ok.  Getting sorted through some things I feel I need to do and then normality beckons - roll on XX

Also in a recliner chair by choice x

I have a lasting memory of buying my husband's recliner chair which was a source of comfort for his remaining months, both daytime and night 

He really wasn't well but needed to try them for comfort in a shop before purchase. The rigmarole of lockdown meant booking an appointment, wiping chairs down, gloves, mask etc. My husband, (like Goldilocks) finally found one that was 'just right'. The pompous salesman smirked as he saw the £ signs, smugly telling us that he'll put the order in and it will be a 16 weeks delivery!!  To which my husband replied "that's no bloody good... I've not got that long left to live!"

It may sound awful... But for some reason we were both laughing as we left the shop at the deflated look on the face of the Mr money-bags salesman. It was priceless.

We went next door to a different shop, explained the situation and bought one which was delivered in a couple of days.

Even  when things are bleak, laughing together is the best medicine. 

Mym x

Hi Tessa.

Sorry for the delay responding. I had 4 cycles of chemotherapy and immunotherapy given on the same day, I completed this part of the plan at the begining of may 2022 since then I have continued with immunotherapy every 3 weeks. I ave about another year on this. My first cycle of chemotherapy was ok but i did  develop sepsis this is a rear side effect of chemotherapy, however I must say there was no indication of sepsis until it was to late. I was very poorly however I did recover with the help of my MDT.  Cycles 2, 3 and 4 went very well and didn't cause me any more issues. I continue with immunotherapy every 3 weeks with minor effects such as dry skin patches.   I would invest I a good moisturiser. it's a good idea to have plenty of snacks and small meals available as he might not feel like eating full meals. If they have said he's ok to drive that will be correct. the side effect I suffer with most now is fatigue so. Would advise to make sure he has plenty to drink and rest when he needs to 

One more bit f advise for you. Make sure you take care of yourself. If you need help ask for it. The macmillion helpline is always a good place to start if you need anything.

Have a good weekend and if you need more information please message me xxx