Really really struggling today - HELP

Hi , I am now three and a half years post my second Stem Cell Transplant for my type of NHL and I have been in hospital a few times every winter over the past few years apart from this years as it look as if I will get off with just one week on the NHS DB&B ;) 

I am coming up to 20 years living with my NHL and yes it’s been full of ups and downs. But all the times I have had Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia and Sepsis a few times I don’t see this as my condition coming back but my body developing the ability to fight daily living. I know a lot of folks have been struck down with the bad bugs the past few winters but our immune system is still recovering and we are just that touch more open to them,

Regardless of the weather at the moment summer is just round the corner and the nights are getting lighter so we can look with new eyes into what is available for us to enjoy and celebrate.

Make a cup of tea and have a look at this great paper, folks will actually come back to me and say that they think that the paper had been written just about them. 

((Hugs))

Dear Morleywife

I am sorry to hear that you are having this struggles, and I know how you feel and I went the similar time just before new year, that whole of my body gone wrong with various issues here and there, even the doctor sighed and she said to me: no worry, lets deal with them one by one. 

when the pain all over my body and every other day I was seeing a doctor, I have had enough then decided to forget my body entirely, refocus on something more helpful, so I started run in the morning in last winter, and I run like mad, run in the rain, in the sun, in the fog, in the mist, run on the snow, on ice, all sorts of weather, I just got up and run out of door straight away, whilst running, my mind is clearer and heart feels better, and I kept doing so until my surgery, the more I run, the more I felt confident in deal whatever the outcome, in the end, I was really fearless and worriless. 

It is okey to feel anything you feel, is our natural reaction and who doesn't in this situation, but hope that you can find something to help you refocus your attention, at least for a period of time, that gives you a time of rest and set your mind else where. 

when we are not feeling well, it comes two things to deal with, physical and mental, without able to change the physical condition at least let hope some thing can help us at least not worry, and watching some uplifting video or do something you are passionate are the way to help, hope you find a way out of worry soon and hearing good news about your results too.

All the best

Cleo 

One month after finishing treatment.feel like all adrenalin  has worn off and I'm about to crash into depression. I am going to the gym as usual.this helps .but I miss my tribe.just lonely again.no haven or Maggie's near me.I don't want to waste this wondering  opportunity  for living.I live alone and I did all my treatment alone.very hard to endure completely  unsupported. I am too scared to go to my ontology appy because I will have to sit with all these sick women all smiling and this makes me so angry.it's all shit. I won't go.

Hi Ann louise (lovely name). I also went through treatment alone, in my case it was surgery for womb cancer. We have to be strong-minded to manage these things by ourselves don't we, and it is lonely especially if you are used to being out and about.  You say that you miss your tribe - is that colleagues, or family, or friends? Perhaps you are not currently able to see them in the usual setting but is there someone that would meet up for a coffee or at the shops or somewhere? I don't know what treatment you have had but just one month on is still early days. Do you have a CNS? If you are worried about appointments perhaps phone the CNS, tell them what you have told us here, and ask their advice. As another person who lives alone I know that I often expect that I will have to solve all my own problems, but actually sometimes you don't need to solve it all yourself and can ask someone else. For starters you could ring the macmillan helpline and see what they can suggest.  I hope you feel better soon.

Thankyou so much.I didn't expect any response from my post.i will call my nurse .just getting your reply has helped.

Hi . You’ve hit the nail on the head really - the adrenalin has gone and that’s exactly how I felt. The cancer journey ( hate that word but not found another one yet) is a year or more of scans, appointments, operations, more scans, more appointments, chemo then.......nothing! My oncologist told me I wouldn’t manage all my chemo sessions so that was my incentive - to prove her wrong - and I was counting them down. Had my last one, picc line removed, said goodbye to the nurses and then felt strangely empty - almost like I had nothing to aim for then - I almost missed going to the fortnightly chemo sessions! As I’m typing this I’m realising how ridiculous and selfish this seems but cancer totally messes with your head and once treatment ends there’s no-one left to just mention any concerns to and you’re suddenly left to stand on your own two feet.

Time is a great healer and clear follow up scans push the memory a little further back into your mind each time. I also went on a one day event called Moving on from Cancer which was quite good - there were talks by a consultant, counsellor and a fitness expert. Perhaps your Support Nurse could advise you about one of these? I also read a good book called the Cancer Survivors Companion which was interesting and not too ‘heavy’.

Please try and go to your appointment if only to reassure yourself that you’ve beaten it. Cancer is life changing and nothing prepares us for the emotional side but hopefully it’ll help knowing that you’re not alone and there’s a few of us in the same boat with you to share the paddling.

Take care

Karen x

I have just read the “paper” and yes  it is so right, describes exactly how I feel. 

Thanks I've been looking for this link.

Many thanks. I will attend my onc.appt. but I feel so angry about the way I've been spoken to and 'dealt' with throughout  the whole terrible experience that I frighten myself.my feelings are so huge and I'm honestly terrified to know that this level of fury is barely  under my control.I don't want to suppress these emotions  .however the hospital environment  will be a challange.there is no mental health either nhs or private available  here.its not been just cut,its in shreds.my heart is beating so fast as I write.I don't trust my care because I've had to chase every appt and treatment including results by quoting nice time lines and using other patients  inside knowledge. I have experienced  being at best fobbed off or at worst  lied to.including if I refuse chemo I would die a horrible painful death.

Hi again Ann louise, I hope you are feeling ok.  Does your hospital have a PALS office, where you could tell them your concerns about how you have been dealt with?