Mental Health and Long-Term Effects

Hi, and welcome though not for the reasons you describe! 

Sadly emotional and mental health following a fairly brutal chemo regime for cancer is mostly ignored apart from those who ask early on. PTSD and in fact, survivors guilt, can attack folk even years on.

I’m glad you are getting counselling help and this seems it should continue. Have you broached the ‘ I can’t touch my neck’ scenario with them at any length? As I suspect the longer this continues, the larger a burden and obstacle it becomes. A bit like myself, I knew I had to look at my breast cancer mastectomy scar immediately as I just knew the longer I left it, the worse the shock it would be. 

I’m a retired Occupational Therapist so do know a little about the psychology of our lives, I really think you should continue with all the help you are getting and open up to your counsellor, medical staff and indeed your family, about all these worries, not hide them away. It’s hard, I know, but really worth doing.

Keep posting here too, we are here for you! 

Hugs xxx

Oh, and please do fill in a bit about yourself on your profile, it doesn’t have to be much. Mine is long as our daughter had refractory HL for years, then I went and got breast cancer!

to do it, click on your user name, go to where it says ‘edit my profile’, type away and then when you’ve done, click ‘save’. All our profiles can be seen by just clicking on user names.

hugs xxx

Hi love,

I was diagnosed with Hodgkin’s lymphoma at the end of last year at the age of 29 and now in remission, so I’m in awe at someone your age going through this same experience as I am. Ive only been in remission for three months so I understand the difficulties of what your going through. Ive really struggled with remission as I’ve lost my self-esteem and ( like you) are dealing with depression. I understand your feelings as I was the youngest person when I was getting treatment (and that’s at 29!) so I had no one to talk to, I just basically learnt from my own experiences. None of my family or friends understood how I felt, only because they hadn’t gone through it themselves. I understand also the feeling of being in remission when some people are nowhere there yet. My last treatment felt like that. If you need someone to talk to, don’t hesitate to speak to me x

Hi Morrissey

I am so sorry to hear of your struggles. I was diagnosed with HL in Aug 2016 age 28 and am currently still in remission. 

I have also seen several councellours and feel sometimes the anxiety is utterly overwhelming. When I was confirmed as in remission I had a node in my neck that didn't (and still hasnt) gone back to normal. Even after 3 years I cant help but check it, and check again and oh is that a new one?! Along with aches, pains and  any itching, so the cycle continues. 

I'm told this is normal but it still keeps me awake. I hope although it may not offer any solutions, you can know you are not alone in how you feel and always happy to talk if you would like.

Xx

Hi Moomy,

Apologies for not engaging here straight away. I find it difficult to have the right words to say about everything when im not in a negative patch- this message finds you at a time where i am struggling. 

I am due for hypnotherapy that was unfortunately scheduled for lockdown and has since been postponed, and it will be a while until i can receive that help. Lockdown exacerbates these feelings as i have nothing else to be thinking about, and so its easier to reach one of those unbreakable cycles. This goes for feelings about my neck too. Hopefully i can get access to hypnotherapy sooner rather than later.

Sorry to read that about yourself. I can definitely see the benefit of throwing yourself in to that ‘new normal’ for your body; all throughout my treatment, i touched and pushed and squeezed my lumps and could feel them shrinking. There is dead scar tissue left, and when i was touching that even after being put in to remission  i would become obsessed with it, unhealthily so, and it would stop me living my life just as much as not touching it does. Im glad you found a way to address that initial shock, and i suspect my solution lies in being able to touch and see my neck too, without falling in to an obsession.

X

Hi emmad,

Thank you for your kind words. I was thankfully put in a Teenage Cancer Trust ward and so was around people close to my age as well as people trained to deal with younger people. However i did not make any friendships or connections there and i am struggling with having nobody who understands now, so thank you for getting in touch.

Your experience is far fresher than mine, and yet i understand that these feelings can cut deep. For someone suffering from depression, having such proximity to death and the often not talked about physical and psychological impact of treatment is difficult to truly accept and move on from. The impact of the experience evolves in your head over time. I wish i was able to offer advice, but i can say i understand what it is to struggle with this and typing out replies here has already made me feel better.

x

Hi Daytime-dreamer,

Sorry to hear of your experience too. The obsession with checking is something i have all too much knowledge of, and has been a constant feature of my life since i first found lumps all those years ago. All through diagnosis, treatment, and for a while afterwards i would touch my lumps (the biggest in particular) and i could feel them shrink, which gave me faith during treatment. After treatment, the biggest lump became a lump of scar tissue and i would obsess with touching it, obviously aggravating other lymph nodes and fuelling my anxiety. At the other end of this obsession, when im not touching it all the time (i havent for years) Im anxious about the fact im not checking, and theres no way i can find the balance. The key to moving forward surely lies in that balance, but that is easier said than done, and i am hoping hypnotherapy can go some way to helping with that. 

What happened to me still keeps me awake too. The aches and pains associated with health anxiety can derail my whole day, whether im too tired from being awake the night before or im to distracted in the day to do anything. Lets hope that talking to eachother about this can lead to some restful sleep and a better life.

x

Hi Morrissey,

I think you are right about balance, but as you say, easier said than done sometimes. I prod my nodes multiple times a day and recently have found several more appear. Although I'm told this is normal, they will come and go, I have recently also started having night sweat (something I have never experienced before) and this has sent my anxiety through the roof. I just keep ask myself, is it back, can it come back. I cant even bring myself to research the condition to check on the chance of relapse incase the details send me spiralling. 

I'm due to see my consultant next week and can completely relate to the anxiety de railing your whole day. It's amazing how it can affect you and take over. 

I hope your hypnotherapy gets rebooked soon, it would be great to hear how you get on.

Xx

Hi to you both, and .

poking at nodes is understandable but when they are scar tissue all you’re doing is causing inflammation? And nodes do still respond to infections, even though you’ve had chemo to stop the lymphoma. So poking often isn’t a good idea; check now and then, by all means but not even every day, perhaps once a week? Or maybe this is a time to seek opinions from your team.

I'm glad you’ve a clinic coming up as they will hopefully be able to reassure you that all is well. 

I hope the hypnotherapy can soon be arranged for you, as I suspect that too will help.

in the meantime, please google Dr Peter Harvey’s paper on ‘after treatment finishes, what then’ as it’s a really good and helpful read. And do seek help from GP for anxiety? 

Hugs xxx