Plan appointment and I am shattered

Jeez

It sounds like some kind of prison sentence. Every three weeks for two years? I remember meeting a woman at the chemo unit five years ago who was on a similar kind of schedule. I must have looked horrified because she assured me it was fine. She got in with her life around treatment days. I hope you’ll find the same - although I can imagine it must feel very daunting right now. 

Are you able to book yourself a treat for each three week period? A massage, say, or afternoon tea with a friend? It can really help to have something to look forward to. 

Good iuck fot Monday. I hope the nurses are kind, the pharmacy is running on time and your veins are easy to find 

hugs xxx

 I’ve been on a similar treatment schedule for the past two years (there has been few lengthy breaks for operations) of Avastin & 5FU. I had my 31st cycle today. Two weeks ago the doctors informed me that they have found two potential growths on my peritoneal, which although small they believe are highly likely to be a recurrence of the disease. The action plan will be to continue on my current schedule until the growths hit a certain size, then switch to immunotherapy. This will be a cycle every three weeks for 12 months.

I’m 38, never smoked but have Lynch syndrome passed down by my mother. Unfortunately the original tumour was caught very late, and spread out of my bowel to the peritoneal and centennial lymph nodes. Initial assessment at my local hospital was 30 months if lucky. I was put forward for a trial at UCLH responded so well to the standard treatment of chemo that they operated and removed all visible cancer, putting me in a sort of remission all be it with  continuous chemo indefinitely.

My message to you is this. It it will be tough, you will have very dark days but don’t give up. Easy for people to say but take it from someone that’s living this type of schedule, it’s doable. 

Best of luck. Please feel free to message if you’d like to talk or vent. 

Hi Dancein the rain, I know this sounds like a massive mountain just now but I'm sure you will get into a routine very quickly and before you know it, you'll be six months into it! Good for you Royale with Cheese (? Where do people get these long usernames!!) well done with your regime! I do think anything is possible when we get our mind round it! Good luck to you both! 

Hello , I’m glad you have a plan, I remember in August due to your brother in laws experience that you thought you may only have months so perhaps immunotherapy every 3 weeks for two years looks a lot better than that original thought and not a prison sentence, although some days it might be hard not to think of it that way. I began this round of immunotherapy in June 2018 and go to the hospital twice every 3 weeks one for bloods and once for the drip, I try to go for a treat like Daloni says every three weeks, I’m lucky in that enroute to the hospital for me I have a National Trust place we have to drive past, and there’s another 20 mins away and not far out of the way, so it’s nice visiting one or the other. Last visit we explored a sign that said Byron’s Pool and had a lovely walk along a small river and found an Inn that had the best chips I had ever tasted. I can’t hate the thought of visits to the hospital because I also associate those days with lovely trips as well. I hope you find your balance for the day as well even if it’s just a coffee in the hospital or a fancy Frappuccino, or perhaps a free cup of tea and a chat if you have a Maggies at the hospital which might lead to some other ideas to make life more pleasant.

Wishing you luck for the next two years and beyond, (who knows what change in treatment there may be in 2 years)

Thank you all for your replies and support.  I knew I could rely on you!  Yes, no doubt I will get into a routine and I'll stop the looking at all things I won't be able to do.  I use to love a trip to London but just think of all the infections I'll be exposed to now.  But it's a new way of life now and I need to think of other ways to enjoy myself as you're good advise has said Thank you all xxxx

There will still be times when you need to moan and express any frustration and disappointment you feel, that is only natural (any healthy) so sometimes we might need a heads up if you want to just get things off your chest or feel in need of a pep talk or experience sort of response. 

Hi Dance in the rain,

Just to say I am doing the 3 weeks out of 4 trips to the hospital and have been since Dec 2017. When I was told that I would be doing this until the treatment stopped working, or I couldnt take the side effects, I was disbelieving and floored by it at first. However here I am having had cycle 66 today, still doing fine. It has become what I do on Fridays - just part of the routine. Week 4 is nice of course and I have built in some 2 weeks breaks every 3 months or so just to have a chance for my body to have a rest. I have a port a -cath fitted ( about 8 months ago) and that does make chemo easier ( no anxiety around canulisation). So I really hope you find it is entirely do-able as others also say. You are at the start of what seems a long journey and it is appropriate to feel sad and maybe angry and myriad other feelings. But as you say, this is living with cancer and we are all so lucky to live now when it is almost a chronic condition instead of an inevitable death sentence. Doesnt make it any easier to hear the news, but the reality is so much better than our fears. Good luck finding your spirit, and in your treatment on Monday.

Hi dance in the rain.

i had immunotherapy for 2 years every three weeks.  It’s surprising how you fall in to the routine and those 2 years absolutely fly by. I’d happily keep going for more if only I could.  

take care.x

Hi

Treatment starts in Monday? The very best of luck for tomorrow. May your waiting time be short, the nurses kind and the veins easy to find. 

I have a vague memory of you saying you’re at uclh? I’ll be there too on Monday, signing papers for another clinical trial 

love and hugs. 

Hi daloni 

Yes, treatment starts tomorrow.  Very nervous - fear of the unknown.  I'm at Royal Marsden so not where you'll be! Hope you're not kept waiting.  

Thank you xxx