On the 16th August 2022 Jackie messaged to say she has a large lump at the top of her right leg, near her groin, about the size of an almond. She, as I do, googled the life out of it, and of course, as it always does, looks like it’s cancer.

She was waiting for her GP to call her.

Determined it wasn’t cancer I counter googled to prove to her it could be a million different things, but sadly everything was pointing to cancer.

The next part is a catalogue of waiting and incompetence.

First a telephone consultation (really!!), 8 day wait for a GP appointment, 2 weeks for an ‘urgent’ scan, an incompetent receptionist who couldn’t tell her any results as she’s not clinical, waiting & waiting for GP to give her the scan result, having to request blood tests herself as they’re so important to help diagnose in this type of situation, then wait for a further scan with a consultant radiologist on 21st September, who took 2 biopsies and a 3 week wait for the results.

In the meantime Jackie and Rob booked a week in a beautiful hotel not far from where I live in Turkey, with my husband John.

Both were struggling with the empty nest syndrome, missing the boys terribly, Ben had just gone off to Uni. It was a rare week, just them, in a beautiful environment with fabulous weather to really talk about life and lumps. They laughed, they cried and Jackie said thank goodness Rob is her anchor and they were so grateful for sunglasses to hide red eyes.

John and I met up with them on Weds 5th October, (almost 2 months since first contacting the gp) the day that Jackie was told she could phone for her biopsy results.

We all sat around a breakfast table at the lovely Mekan beach restaurant, hardly daring to breathe, pulses racing while she made the call.

No results, try again Friday. Friday, still no results.

On Friday night they flew back to the UK and were told the GP would be in touch on Monday or Tuesday. Didn’t happen.

On Weds 12th the GP rang Jackie but wasn’t sure why she’d been asked to call, oh, was it for the scan result, no, biopsy, oh yes.. and proceeded to give her the news we’d all been dreading. Over the phone. Just shocking and totally against guidelines.

Jackie rang to tell me, we were out with our walking group, it was lunch time overlooking an amazing view, all should have been wonderful with the world, but the diagnosis has been nagging in the background for weeks.

Jackies too young, too healthy and looked fabulous last week, it can’t be cancer, but we already knew deep down that it was.

The diagnosis of Follicular Lymphoma was still a shock and despite trying to be strong and positive I did cry when she told me. I think she knew, as much as I was trying to speak normally.

The delivery of the news from the GP had really shocked her, quite rightly what a disgrace.. She had no idea what happens next as she’d simply been read the histology report.

At that moment Jackies land-line rang, something that never happens. She called me back and said she had an oncology appointment in Maidstone the following Monday. Her voice faltered, after being so strong, she said she didn’t like the word Ongology.

I can’t believe she actually apologised for spoiling my day.

Not wanting to give Rob the news over the phone she asked her boss if she could go home but then come back and finish her allocations! Quite rightly she was sent home to rest and look after herself.

Unfortunately the consultant had an accident and her oncology appointment was delayed until the following Friday 21st October.

Meanwhile Rob got covid…

Jackie really struggled with telling her nearest and dearest, especially her 2 boys. She said she felt she was throwing a hand grenade on everyones life.

They had tickets to see the Smiths, Ben was so looking forward to it and coming home for a few days. Knowing she couldn’t pretend everything was normal until after the Friday, she told the boys on the Thursday.

It’s interesting from a psychology point of view to see how people deal with emotions. Robs in bits, I’m in bits, Henry is in bits, my daughter Lauren is in bits, Ben and my son Curt are logical and pleased she’s got an oncology appointment, mum doesn’t understand why she’s not at work, half sister Mandy is in bits and unexpectedly Dad has shown emotion, he’s so upset and not been able to sleep

Our 2nd cousin Jack was getting married on the 16th October, Jackie said

Jackies friends are amazing and have all offered to help. I feel so far away but have a flight booked anyway on 22nd November and can change and go sooner or stay longer if she’d like me to.

Poor Rob ended up confined to the spare room feeling groggy with covid, while Jackie delivered trays to his door, feeling very lonely coming to terms with her diagnosis with no cuddles.

Rob felt awful, at a time that he should have been there for her, just the worst timing.

Jackies friend Caroline took her to Oncology on 21st October. She was amazing and took several pages of notes. More psychology.. I felt jealous that I wasn’t there for her. Gave myself a talking to and felt so pleased she had her lovely friend (who incidentally laced up my wedding dress) with her .

One of Jackies concerns was being in the right place with the right treatment.

With follicular lymphoma there are 3 courses of action depending on cell type. 1- watch and wait, 2 – localised radiotherapy, 3a & 3b chemotherapy. Jackies cells are 3b so a 6 month intensive chemo was prescribed. She was relieved, she just wants rid, she was dreading it being option 1.

Psychology again, I would want option 1, although I wouldn’t have even been to the GP yet in case it just disappereared!

First chemo was scheduled for 4th November. It’s amazing after the terrible initial GP incompetence, very quick especially as the media report such a backlog of treatments.

Jackie wondered if she should request referral to one of the specialist London centres, but was reassured by the very professional, extremely lovely staff and the fact that they have links with Kings Hospital, there will be a case conference regading her diagnosis and access to any clinical trials that may happen.

The hospital told her to book a flu and covid booster. To be sure she wasn’t going to overload her immune system she decided to do a lateral flow test for covid. It was positive, so no vaccines.

On the plus side she was able to be with Rob, on the minus side she had the embarrassment of telling Caroline, and it put back her chemo slightly.

Luckily she didn’t feel ill with covid and pet scan was done on Tuesday Nov 2nd with follow up pre chemo checks and chat on 4th and first chemo on Monday 7th. Sadly there was no time to have her eyebrows micro bladed due to infection risk and her shopping trip to buy comfy snuggly clothes was delayed.

Currently they can’t tell from the scans whether it is fast or slow growing lymphoma. If it’s fast then there is an 85% chance it can be stopped in its tracks.

If it’s slow then it may reoccur and mean more chemo periodically in the future.

We’re clinging tightly to the first possibility.

Jackie is determined she’s not having this long term.