Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

What to expect.

Janeejanjan
Posted by

Hi

I haven't finished my treatment yet but will be finished at the end of May. 

I have no idea how to cope after treatment is over. Because I still feel so I'll after the Chemo side effects I wonder if I will ever be "normal " again?

Thanks 

Janeejanjan 

Janeejanjan 
Thehighlander
Posted by

Hi  and welcome to the Online Community and congratulations for getting through your treatment. Treatment is like a marathon and you are entering the final 1/3 so this will take time.

A good place to start is making a cup of tea and having a look through this great paper Dr Peter Harvey - Life after Treatment

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Janeejanjan
Posted by

Thank you Highlander I will. 

Janeejanjan 
Jmas
Posted by

I personally found most of my chemo induced side effects to have pretty much gone. I finished five months ago. For me it’s the consequences of surgery that I’m having to deal with. I’m also having to deal with an immune system that isn’t probably back to normal yet; I keep getting sore, inflamed throats. This leads to overthinking things and analysing every aspect of said sore throats. It’s mentally draining at times! I also think as well, emotionally, it’s hard. You’ve just gone through something huge, scary, hard; and all of a sudden treatment stops and it feels a bit like, well what now... Friends and family were wonderful during treatment, and they still are, but I don’t think they really know that I’m now going through the aftermath of it all, both mentally and physically. It takes time. I now don’t have cancer in my head every hour of every day, which is nice, but when I think about it, I feel sad, worried, scared again. It’s normal. But I also feel glad that treatment has finally finished, I’m going to enjoy life and be grateful. Well, when I’m not being moody because I’m tired! 

Come May, give yourself something to look forward to, however big or small it may be. You’re almost there... x

Janeejanjan
Posted by

Thank you Jmas for your kind words. What I am currently finding scary is that some of my closest family have moved on as it were now that the Chemo and most of the pain has gone. They feel I should now be setting goals to get myself fit and get back to work but I am far from ready for that.  I find myself withdrawing and not talking about how I am feeling.  I still have 20 radiotherapy sessions to start and get through with no idea of how it will affect me.

I'm really glad I joined this group, it's good to chat to people with similar problems and hopes and fears and not have to be talking to someone and watch their eyes glaze over lol.

Janeejanjan 
OneTooManyBiscuits
Posted by

Hi Janeejanjan,

My wife was hit for six with chemo, but she's recovered well from that. Similarly, the surgery (double mastectomy w/ immediate reconstruction) took its toll, followed by 15 rounds of radiotherapy. She became more fatigued as the radiotherapy went on but I'd say that was the worst side effect (of radiotherapy). The nerves in the target breast haven't finished 'knitting' (if that's the right word) - they may never - but it's a small mercy because I suspect there would have been some burning pain otherwise.

I imagine your friends and family are trying to put a positive, upbeat spin on things with all the best intentions, but it's vital that you listen to what your body's telling you and take the time you need to heal properly. Rest when you need to rest. Move when you need to move. Be kind to yourself - don't push yourself too hard too soon and rebuild your strength steadily.

The effects of radiotherapy are cumulative and they do continue for a couple or three weeks after the final dose so it's worth keeping that in mind. It's been a little under 6 weeks since Jen had her last radiotherapy session and she's almost back to the 'new normal' but she's still rebuilding, so to speak. She's having a phased return to work the first week of May. Of course, your situation may be entirely different and you will almost certainly respond differently to the treatment (for better or worse), but I hope this is useful as a general rule of thumb. Jen is an otherwise fit and healthy lady in her mid 40s.

Do you have any post-treatment physical therapy lined up? Physiotherapy, perhaps? If not, speak to your breast care nurse as they should be able to offer guidance. Alternatively, yoga can be very beneficial for building strength. It may be worth looking for groups in your area that specialise in post-breast cancer exercises, though it's definitely worth checking with your key medical professionals first as they are best placed to assess your specific needs.

I hope this helps you move forward.

Janeejanjan
Posted by

Hi Onetoomanybiscuits. Love the name by the way...

Thank you for your kind words. I certainly hope your wife makes a full recovery. 

I know my family mean well and they are probably just in a hurry to put the whole experience behind them. I on the other hand know I have a ways to go yet and after listening to what people on here are saying from experience and after a long chat with my breast care nurse I have to put myself first and take each day as it comes. 

Thanks again.

Janeejanjan 
Thehighlander
Posted by

Good morning , I do hope you had a restful nights sleep....... I had as good a sleep as I have had in my four and half years post treatment. I did say the cancer treatment is like a Marathon so I am now near the end of the final 1/3rd

Some great reply's and some great advise - helps to talk doesn't it.

As you still have your Radiotherapy to do you are still in the middle 1/3rd so it is important to be kind to yourself both physical and mentally but at the same time remember you are making progress.

I think a lot of folks on this very big Community can totally understand the challenges treatment brings……. but the issues of what your family, friends and work mates say and do is just as big a challenge.

At best you will get a few who have first hand experience with or knowing someone who has been through cancer……. But most will have no understanding and often this turns into well meaning ”You are looking great”........ “Now you can leave all this behind and get on with living”…….. “You have been such a strong person”

But in your mind you are saying “If you could look inside me you would not say that”

But a lot of folks can not come to terms with a cancer diagnosis and can not find the words or actions that can actually help so some folks will say nothing and other will break contact completely.......... their loss I say.

I remember after my first 5 day cycle of chemo, my hair was all gone but I did not focus on it and my wife and I went out for a coffee in a cafe just round the corner from the house. It was January, winter in the Highlands so I had a warm hat on. A friend came in to get a coffee and his reaction I will never forget. 

“….oh hi Mike, looks like you have lost your hair……take off the hat so I can see…… cool....... 'laugh'....” he then turned, picked up his take away coffee and left without another word. 

The ones that understand will actually ask “….how you are doing?”……. “is there anything I can help you with? “….you fancy a trip out and have a coffee?” These are the practical people who see see a need meet a need.

As I said I am now coming up to four and a half years post my last treatment, but have had lots of issues during these years with a number of NHS DB&Bs (does not have good TripAdviser ratings) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis and three months of low blood counts so regular blood transfusions every second week.

Why did I tell you this little part of my story - not for sympathy as I am doing great and in remission.

I think this is encapsulated in what my head Stem Cell Consultant told me at the start of my treatment. “……. Mike you are doing a boxing match and a marathon every day you are in hospital and this is done without any training. There is no quick fix but slowly and persistently you will get through the recover stage”

You have been posting in the Breast Cancer Forum - great place to meet folks who are on the road and even encourage some of those who are standing looking down the dark tunnel.

When you have time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you....... and it helps you unpack some of the stuff you are carrying around.

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page. You can see my story at ..... but my one is rather long lol

All the best. 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Janeejanjan
Posted by

Good evening Highlander.

Thank you for your response.  It really is helpful to hear other people's stories and their advice.

My one regret is that I didn't join earlier, some of my family think that now the nasty chemo is over radiotherapy will be a doddle and I will be back to my old self and working in no time at all. How wrong they are.....

Janeejanjan 
Janeejanjan
Posted by

Me again Highlander, I have updated my profile as suggested. 

Janeejanjan 
Thehighlander
Posted by

Hi again, yes the Mac Community is a great place where you can talk with people who understand.

I actually had a total of 45 radiotherapy sessions over my treatment with a 5 zap, 10 zap and 30 zap sessions spread over two years.

I have to say that they were all ok and the only issues was some increasing fatigue and dry skin and even now three and a half years on from my final 30 zaps I still have some problems with one area that is in a rather unfortunate place 

Always around to help out and listen.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela