5 years all clear... so why am I so sad?!

Hi Ruby and welcome to this corner of the Mac Community. First congratulations in being 5 years out from treatment, this is a massive achievement - well done.

I was diagnosed back in 1999, yes a long time ago, with a rather rare type of skin Non Hodgkin's Lymphoma and was told "Mike this is incurable but treatable but sorry, you will never be in remission"........ fast forward through 17 years of treatment (hit my community name to see my story Thehighlander) I was told Remission in Sep 2016. So for me this was a massive result.

Unknown said:

I know that I'm right- that there are no guarantees- so it's not that I want to change that. But how do I live with that, and not feel so negative and sad all the time?

Yes there are no guarantees and indeed I am right at the top of the 'waiting list' that one day I will be told I have skin cancer due to the treatments used...... But I refuse to let this and the years of treatment and disappointment define me.

I worked damed hard to get to this point and I and not going to let anything rob me of living my 'new' life.

Late 2013 I was given a few years to live........ I am 5 years past that date and doing great with 2 more granddaughters I should have never have seen.

....... see that put a smile on your face.

Are we doomed to suffer life after treatment or celebrate life?..........which one are you going to aim for?

Lets keep talking as this helps unpack the massive invisible rucksack of stuff you have collected and are carrying around with you. Its good to take the rucksack off and empty it on the floor..... rummage through the stuff but when you repack it...... you have to throes some stuff in the bin.

It’s always good to talk with someone, so can I also highlight the Macmillan Support Line on 0808 808 00 00 This service covers Emotional Support mostly open 8.00 to 8.00.

Mike

Hi, 

I saw this thread and I feel the same.

I have been given the all clear (yay and thank you) and earlier this year I was discharged from the cancer hospital (yay and thank you).  However, I am very depressed and I worry over every ache and pain.

I have a terrible pain in my right side groin area and I can hardly walk. I rang the GP earlier this week and he told me I have strained my groin and has referred me for physio. Which is great but the pain is terrible.

I look things up online and I know it is wrong but no one helps.

I tried to tell the GP I have had problems in my pelvic area intermittently after treatment but he didn't want to know.

While it is great to be given the all clear and discharged, I am thinking "typical, this happens after I have been discharged:.

I l suppose it doesn't help as earlier this year I was diagnosed with PTSD and I haven't had any support from the psychiatrist team and they phoned me early May and haven't bothered since.

Anyway, sorry to go on

Hope you all have a lovelyweekend and stay safe.

Hi again Lisa LisaCardiff and sorry to see you are having pain issues, it’s hard to navigate the system at the moment. I thankfully was able to deal with a bad kid infection quickly a few weeks back as my GP records have an ‘Immediate Action’ tag on them so got a call with my GP that morning and had antibiotics in the afternoon.

Navigation the post treatment journey can be challenging, I don’t know if you have seen this great paper...... tell me what you think?

Hi Mike,

Lovely to hear from you again and I hope you are good and the kidney infection has gone. Thank you for your reply and the attached paper.

The paper was great and very interesting and informative. I thought it would be easier years after treatment and being given the all clear. The paper made sense.

The pain is a bit better today. I can walk without screaming. 

I hope you are having a lovely weekend and stay safe.

Sending you love and good vibes 

Yes Lisa, infection is all clear now and we are doing great. I do hope you make headways forward with the pain issues and you get Physio quickly.

Staying 'safe' is an interesting mindset at the moment but we are being wise, enjoying the freedom the Highlands allows without seeing many people and not being in one of our high COVID levels.

Take care.

PS - This was our view on the way home yesterday.

Hi Mike,

Thank you for the beautiful photograph. It is really lovely.

Sorry for the delay in replying but I had to go to A&E as I had a partial bowel obstruction. I am okay now and back home thankfully.

I am very down and depressed.

The doctor did a blood test and had to do another one because it showed an infection in my white blood count which was exactly same as when I was in hospital in September, 2019. The second blood test was the same and I was told with "everything going on" they expected that and then told me I can go home.

Since I have been home I have been worrying as to why I have had an infection for a year? And I feel okay. I looked it up on the Internet but that just frightens me. I am really fed up.

Anyway, thank you for reading and your help, it means a lot.

Have a lovely weekend,

Hi Lisa, as my oldest granddaughter would say “pants grandad” but good that you can go home and fingers crossed that life levels out.

I was looking back and I am sitting at 30+ days in hospital over the first few winters post treatment and a number of infections that I did not need to be hospitalised including the RSV Virus, Pneumonia, Sepsis and a few ‘unknown’ infections.

I am doing great although it’s been manic as my 91 year old mum died yesterday afternoon so it was a mad dash from Inverness to to Aberdeen getting there with 30 mins to spare - unfortunately I could not go into see her as I am still classed as COVID Very Vulnerable but my wife was able to see her pass away peacefully.

Now in the throws of ‘organisation’ but that is my safe place

Do have a great weekend xx

Thehighlander, really sorry to hear about your mum, sending a big (((hug))) take care of yourself.