“How are you?” “I’m good thank you” “So it’s all gone? So you are all better, back to normal now?” “Yep, I’m all good”
Well that is a big fat lie – normal… I literally have no idea what normal is now!
But what else could I have said?
“No, nowhere near better and normal. Yes the cancer has gone (and trust me I am soooooo happy and grateful for that) but….
- I’m still in a lot of pain from the operation
- I’m still in a lot of pain from the radiotherapy
- My body does not look like mine. I may have ‘better’ boobs, but they are scarred and I have different shaped nipples. I’ve also got scars from the chemo burns, the shingles and the lymph node clearance
- I still have to go for injections – one every 3 weeks, and another sort every 3 months
- Because of one of the injections, I have to go for heart scans every 3 months which entails 2 injections of radioactive stuff into my veins, as although the Herceptin is helping to prevent the cancer coming back, it may severely affect the function of my heart
- I have to be careful not to develop lymphedema which is a lifelong, painful, and debilitating condition – so no blood pressure tests, blood tests, injections in my right arm (the side where the lymph nodes were removed), and I also have to be very wary of bites, scratches and any sort of injury to that arm
- Most of the time I can hardly move, and I look like I’m 97, because my joints hurt so much due the hormone treatment which I have to take for 10 years
- Along with the pain, the hot flushes brought on by the medically induced menopause mean that I am hardly sleeping
- Exhaustion hits me like a bus sometimes and although I want to be able to do everything I did before, I know I can’t
- My hair may be growing back but it doesn’t stop people staring. I feel like holding up a sign to say that I’ve had cancer, I really don’t think I’m young and edgy!
- Chemo brain is still affecting me – I can’t find the words I’m looking for, find it difficult to make sense of certain things, I’m very forgetful. And yes, I was like that a bit before, as most of us are, but nothing quite like this!
- Although I can now go on holiday, I have to avoid the sun and am limited where I can go due to still having a low immune system (not to mention the fact that flipping travel insurance is higher!)
- I’m trying to live without the constant fear that the cancer may come back. I can’t live in blissful ignorance anymore that it won’t happen to me – it bloody has, and may again
… so no, I’m not really back to normal yet – and to be honest, I’m not sure if I ever will be”.
Not sure that is the answer anyone would want to hear so “Yep, I’m all good” is the response I will continue to give. But then I didn’t understand about all of the after affects either. I also assumed that once chemotherapy, surgery, and radiotherapy were over, then you would be back to ‘normal’ however slow that process may take.
That all being said, ‘normal’ is a funny idea – do I actually want to be back to normal. Surely I should want to live each day likes it’s my last because I can really vouch for the fact that we don’t know what is around the corner. But then that’s not normal life, so should I want to go back to worrying about the simple things like cleaning the house, what to have for dinner etc.? But then if I don’t make the most of every second, am I throwing away the good fortune of getting shot of this bastard disease? So I have to find a happy medium – anyone got any suggestions how you do that?
So many buts… and what ifs… if we could see into the future, would we want to?
Many people have commented on my positivity through out this ordeal. I’m not sure about positivity, but I’ve tried to find the humour in each situation, looked on the bright side, made a joke about everything – but in all honesty it’s been the only way I could handle it. But there have been moments…
Last week I sent Big G a text:
“What do I do if the cancer comes back?” “It won’t” “You don’t know that” “But they do” (the doctors – well they don’t actually!) “But what do I do if I just get cancer again then?”
I’m not sure he knew how to answer, there was no right answer. Trying to placate me and tell me everything would be fine was not what I wanted, nor would it have been the truth because we simply don’t know that. I realise he, and everyone else who loves me, also has to learn to live with the fear. To be honest, I’m not living with it, the fear, all the time as part of me has gone back to ‘blissful ignorance’ that it won’t happen to me – but part of me has it in the back of my mind constantly. I knew these feelings were likely to come as others, who have been through it, have told me that it is after treatment that somehow the whole thing seems harder – who knew?! During active treatment, the cancer was all consuming with trips to the hospital, side effects of the treatment, medication… but now the hospital visits are less frequent (although I feel ‘lucky’ that I still have contact with the oncology team because of the injections) and I am starting to go back to work, and therefore, some how, have to adapt to this new normal.
I feel this has been a ‘moany’ blog post, sorry – not much humour in it I’m afraid! But I also feel it’s important to share the bad with the good because how do we know about the aftermath if no one talks about it?
Please believe that I am very happy to be the right side of this ‘story’ and I plan to stay well, and I am excited to be able to start getting back to real life. But I’m a bit worried that people will expect me to be completely ‘Mel’ again… I’ll get there, just bear with me!