Attitudes at good news

Hi again BobbieRosie unfortunately, unless people have personally navigated their own cancer journey most people just don’t know what to say and often say the most stupid things.

Your daughter is entering the final 1/3 of the journey…. the first 1/3rd is the diagnosis period…… with the middle 1/3rd being the treatment…… now it’s the post treatment world.

You may find it helpful….. and indeed your daughter as well, to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

Hello me again (Pete) - people's reactions are varied often based on there own life experiences. I agree with your comments re - the "fighter" statement. But I would take it as a complement. As for the "grandkids" mention, then two things spring to mind- did the person say it know of the premature menapausal side effects? Secondly the person sees a long life for your daughter - I would take it in a positive manner. I bet if someone asks your daughter "How are you?" she replies "OK".

Status???? She still feels poorly - quite understandable - do her colleagues know? And there could be a long recovery period. After a bit she will be defined by who she is as a person - not "Mary who has/had cancer" but "Mary".

Mum's are entitled to be over-protective or even protective. You all have been through hell. And don't forget what I suffer from - PBS. Pimple on the Bum Syndrome. Get a pimple on your bum and you think your leg is about to fall off. Hightened awareness - wish there was a cure for it.

And  agree with Mike Thehighlander's statement re post treament discussion paper.

The best status is when you are laughing with friends and family - you are an equal and more so with a hug. Have plenty of both.

Pete + long distance hug(s)

Thank you so much for this - It's a bit scary of how much of what I said to her today, he covered in this paper. But amazing when you actually read it. I almost want to print it off and hand it out to the well-wishers. (I won't), but I will get my daughter to read it because I know she will take comfort from it.

Thanks again

I know a lot of people who have actually done that very thing in their work place…… 

You are right, when asked how she feels, she does say ok! I intend to hold a garden party for her in a few months time to celebrate her 30th that she missed due to chemo (what a way to celebrate) she can have as much or as little, even if just family come, it will be a relaxed, at home excuse to eat. "One day at a time" has been my mantra for many years, it works for me.

Thank you for taking the time to reply.

Actually Lymphoma Action run a very good Lymphoma Focused Live your Life Course that is a peer-led self-management course for navigating the post treatment world - worth having a look ((hugs))

A lot of people don't have much consideration about the stuff that comes out of their mouth, others just want to feel good with themselves, and many others can only understand black or white scenarios - you are either cured or not, you are either healthy or sick... Same as when you go through treatment, loads of people just see the end result but forget about how tough the journey is.

You will learn that there are a lot of different variables and phases during the recovery phase. I am now 11 months since I finished treatment and while physically I have been feeling 'normal' for ~3 months, mentally there are still some things that need work. It takes time, patience, empathy... Now I am 'normal' and in remission so in the eyes of most people there are not even side effects. But I just did a fertility test (male) and the results show that my sperm quality / numbers have dropped a lot compared to pre-treatment. People don't see that and most don't know that this is a very common side effect. It is a hit for me - psychologically - but I look better so I can't complain

I think what frustrates both myself and my daughter is the length of time it took to get to a diagnosis. She felt a lump in her neck in November 2023 and went to the GP who said it was nothing to worry about - that she'd probably had an infection and sent her away. In December she paid for a private ultrasound scan and presented it to the GP who months down the line denied ever having seen it. By March of 2024, she had been coughing and having night-sweats for 4/5 months. Back to the GP again who said they would refer her for an ultrasound.....but I've had one - yes, we want to send you for one. The appointment for this came through - brace yourself - December 2024 we were shocked WTF is happening?? Without realising it she was losing more weight, becoming weaker, coughing more and looked so rough - in August we insisted on having a blood test where she was asked if she was taking multi vitamins because her vitamin B was very high and told to stop taking any supplements and go back after 6 weeks. - we followed the rules and went back; another blood test obviously caused alarm bells to ring, coupled with the night-sweats and weight loss she was eventually sent to haematology and seen by one of the doctors there who asked for more blood tests and referred her for a biopsy on the lump in her neck. The next few weeks were a blur but I will never forget getting the diagnosis of stage 4 Hodgkin's Lymphoma the week before Christmas 2024 - (when her GP organised scan should have been.) 

First chemo was on New Year's Eve. She was asked if she wanted to freeze her eggs but as she is single and kids are the last thing on her mind, she said no just get started on the ABVD.

In the beginning, we had Interflora turning up every other day, gifts, cards etc from people at her work, but the novelty soon wore off until she told work her scan was clear which prompted all the comments.

We are still a bit numb and trying to process what may lie ahead but it's a comfort to hear other stories so thankyou.

Thanks for sharing. I can relate a lot to the first part. 

I started with intermittent fevers in June 2023 and got some amoxicillin after a couple of weeks, then blood test in August - 'only' reactive Protein C was high. Got more antibiotics later in August as fevers returned, then a blood test every 2 weeks and  although rProtC was still high, this wasn't deemed relevant, 'it just takes time'. The white cell count was lower than usual but it wasn't below normal. I didn't lose weight and outside the fever periods I wasn't tired, so I wasn't ticking all the boxes. 

Early December I was sent to A&E by the GP so they'd do a CT scan to check for infections or internal abscesses, no-one ever thought about lymphoma. A&E people decided it was too busy and not relevant to do the CT so sent me home after taking yet another blood and urine sample... 

Did a private CT scan in Spain on Boxing day, enlarged nodes in quite a few places.... So came back to UK and gave everything to my GP who finally decided to refer me to Haematology... but he forgot to add attachments and results to the referral so we wasted another 2 weeks as the referral was rejected due to lack of evidence and what not.

PET scan done late Feb and biopsy in late Jan. Full diagnosis mid March, to start chemo end of March. So, 9 months of f*** around. I understand June was probably too early to tell but I do feel I lost 4-5 months. If GPs were more aware of demographics and symptoms for lymphoma we would probably get there earlier. 

Because the treatment worked I can live with this. But I was Stage 4 too at diagnosis and I don't know what I'd do if the treatment didn't work and someone told me 'we didn't catch it on time'.

I have retrospectively blogged my journey, if you want to check my profile I've done a few entries.

I wonder how many people never get a diagnosis? To be honest she was on the verge of giving up, but her first pet scan revealed a tumour the size of a fist in her right lung which was close to collapse and the rest of her body lit up like a Christmas tree, I truly believe that without immediate treatment, we would have lost her - a thought that I refuse to dwell on.