Part 11: Life Beyond Cancer

Part 8 was the last time that I told you about Sheila, who this is all about really, so here’s how things have gone for her and I since then.

At the end of Part 8, Sheila was still recovering from 6 months of chemotherapy and we were dealing with the sadness of her mother’s death and were looking towards her ileostomy reversal.

We held Sheila’s mum’s funeral on a fine spring day towards the end of April, at a lovely crematorium, surrounded by countryside. It couldn’t have been nicer (if these things can be nice!) and all arranged by Sheila. She did a good job.

At the beginning of May, her ileostomy was reversed; something we were both looking forward to and at the same time, not looking forward to. We knew her bowel would have to learn how to cope on its own and her bottom would have to be trained again. We also knew about the potential to become a victim of LARS (Low Anterior Resection Syndrome), which can leave a person with a very badly behaved bowel and bottom forevermore. We went forward with some trepidation.

I mentioned in Part 8, that Sheila was discharged from The Christie with an all clear, but maybe not quite. There were some indications from her CT that there might be something very small, present in various locations inside her. They were actually there before her big operation last year, but no one ever mentioned them before. When we asked why, we were told they were insignificant and not to worry about them, but we did.

Sheila’s surgeon said she would be able to access most of the areas concerned during Sheila’s reversal operation and she would take some extra time to have a good look around in there before closing her up and if she saw anything suspicious, she’d just cut it out whilst she was at it. There were also three or four speckles showing on one of her lungs and her surgeon said she would refer Sheila to the lung team for an opinion because she didn’t know what they might be, but that would be after the operation.

Sheila’s operation went ahead on time and she only spent three nights in hospital this time before being allowed home. I was a little perturbed at being given the responsibility of looking after her and her new bowel and untrained bottom so soon afterwards!

After a couple of dodgy and sometimes, painful, days at home though, Sheila settled very quickly.

After a week or so, we went back to see Sheila’s surgeon who was very pleased with how things had gone with the operation and that she hadn’t found anything of concern when she had a look inside her. She said we should forget about it. If she says we should, we can; we trust her. We said that Sheila’s recovery seemed too good to be true and asked if anything bad could still happen. With a huge smile, Sheila’s surgeon said that she has had a great result and things would just keep getting better and better. We left that day, so happy. Sheila’s surgeon and specialist nurse, got a big hug from both of us.

A week later, Sheila got her referral to the lung team, as promised and were taken through what had been seen on the CT scan. Reassuringly, their view was that they were likely just lymph nodes showing up, but that they too now, would be keeping an open interest in Sheila during her surveillance period. They would be adding additional scans into that routine. Sheila is surely being well surveilled!

Shortly after that, Sheila had her first annual colonoscopy and it too, came back all clear.

 

We are therefore able to say with confidence and glee, that Sheila is cancer free! Long may it be so.

I wrote a thank you letter to all concerned at Wythenshawe Hospital for their exceptional care and diligence in making Sheila well again. It was so lovely being able to write a nice letter instead of a nasty one for a change.

The speed and quality of her recovery since then, has been remarkable beyond words, her surgeon was quite right. It seemed that reversal was just what the doctor ordered; to be put back together again. Sheila now eats what she wants, does what she wants, has regained her zest for life and laughs a lot - and so do I. In fact, she is better now than I think she has been in a decade, if I look back on it.

I have my wife and friend back again - all of her (or at least, all of her that is left LOL). There is only one small cloud on the horizon in all of this - Sheila now also says what she is thinking, out loud, sometimes blurting out inappropriate things. I think cancer treatment has left her with Tourette’s Syndrome.  It it highly amusing though - as long as it’s not your turn to be on the receiving end of it!

Life has returned to something more normal now and never again shall we take normal for granted. We have just returned from our first holiday in the sun since Sheila has become beyond cancer and it was the last piece in the jigsaw for us both in becoming whole again together. We were able to meet my sister and my BIL in Istanbul and then we went down to the coast for some proper relaxation after a busy time in Istanbul.

Sheila has decided to retire from teaching and tend her garden just now. That’s a sure sign her interest in life has returned! Her osteoporosis is under control, her neuropathy has at last reduced to being barely noticeable to her and her bowel behaves in a very benign manner - a little differently perhaps, but it’s very well behaved and most certainly better than it was before her operation last year.

We have fallen in love all over again. Life is good.

For my part, I have gathered together all the evidence I have to support the use of TDM, which I have already published on this blog and have sent it to The Christie, NICE the NIHR, the three big cancer charities in the UK and anyone else I can think of below the level of the Chief Medical Officer.

I still badger them all regularly and after not taking no for an answer from any of them several times over, they are beginning to engage with me a bit more. In fact, I had a meeting with The Christie last week; I didn’t expect to change their minds about doing something and I wasn't disappointed in that respect - they can't without money and it needs to be a national change, not just them. BUT - the oncologist I met with agreed with everything I had to say and was very supportive of the issue. He says I am engaging with the right people who can make change happen. NICE have the money and if I can persuade them to revisit the topic, something might happen. It's nice to know from an oncologist though, that I'm not some kind of nutter, nevertheless.

I have already asked NICE and the NIHR formally, to carry out a review of the inadequacies of BSA dosing and the need to move to TDM. I’m yet to hear from NICE, but the NIHR have given me reason to be cautiously optimistic that they will review the topic again in light of the new information I have provided them since they last reviewed the topic. I have also asked each of the the three big cancer charities in the UK to lend their support in influencing those who can make a change, to make that change. All of them are now actively considering what I have said to them, I think, because they have realised that just saying no to me, doesn’t make me go away. LOL. I'm still waiting to hear back from all the others I have written to.

I will keep you all posted on my campaign progress as and when I have anything to report.