8 years on…a letter to Steve

Well, it’s come round again.  Watching Six Nations rugby matches is the first sign of its approach.  Then Valentines Day.  And now, today, the anniversary of your death.  Is it really eight years?  

So much has happened in the last 12 months, including my own health scare…now I have a better inkling of how you must have felt being told you have mesothelioma and knowing what that diagnosis meant.  My suspected bowel cancer turned out to be a false alarm, but it took major robotic laparoscopic surgery last July before the pathologists could confirm that there was no sign of cancer in the removed section of bowel and associated lymph nodes.  Nevertheless, it was worth going through all that to put my mind at rest…

And in between all the tests, waiting, meetings with GP and consultants, I did manage to continue traveling on and off around Europe with my Interrail pass - to the Cinque Terre, Italy, Istanbul, Turkey, and around Scandinavia, including Denmark, Sweden and Norway, even though the biggest planned trip had to be cancelled when it clashed with medical appointments.  

After an enforced period of eight weeks post-op rest and recuperation, I set off again to meet up with my photography friends in Amsterdam at the end of September/early October. Later in October, there was a short break in Wells for an exhibition at the Bishops Palace, a meet up with an old friend recovering from surgery and a visit to your brother Martin and Mary before heading home.  My last trip of 2023 was to Romania for a neighbour’s wedding.  How sweet of them to invite me!  

It’s a cruel irony that the preventable disease which killed you and your dad, is now making its presence felt in your brother Martin.  While immunotherapy seems to be keeping the meso under control, it’s affecting him in other ways - diabetes and arthritis so far.  That’s tough.  

One more bit of sad news, Meso Warrior Mavis (who was diagnosed around the same time as you) has finally succumbed to the disease after a long, slow and painful decline.  It feels like the end of an era.

Now to the good news:

We have a grandchild, born to daughter Katie and husband Davie in September, the day before our son Jack’s birthday. She’s gorgeous!  I am so enjoying being a granny, but also sad you’re not here to enjoy it and she will never know her grandad…

There’s another special occasion on the horizon - a wedding! Son Jack and his lady Laura are getting married in April.  I have given them your wedding band, which has now been converted into two matching rings, one each.  So a little bit of you will be there at the ceremony with them and then happily ever after.  

I’m making up for time lost last year due to health issues by doing a lot more traveling again this year, starting with a visit to Brazil in January, trips to France, UAE, Iceland and Spain already in the pipeline, and more traveling I hope to follow on in the autumn.  Camera comes with me on every trip, and I’m occasionally in the company of a travel companion, but mainly I’m enjoying the freedom of traveling solo!

I’m still enjoying photography, and getting a little more recognition with images shortlisted in some major competitions, included in exhibitions and magazine features, plus a couple of interviews about my work published or due to be published shortly.  That sort of thing massages the photography ego, but I don’t do it for that reason.  I simply love it as a creative outlet which goes hand in hand with my passion for travel and introduces me to some wonderful like-minded people.  Long may it last!  

I’m not going to speculate about how life will pan out over the next 12 months.  Just looking forward to the possibilities, and making the most of precious time.  That’s something I learned in almost 7 years of supporting you between diagnosis and end of your life.  But in some ways, you still go on - you’re now in the DNA of our grand daughter.  The Valentine card you created and gave me 8 years ago, the day before you died, has not faded away.  It’s still in pride of place on the mantelpiece in our bedroom where I see it every day when I wake up at home.  

Until next year xxx

 

No news WAS good news!

Confession:  as today’s follow up post surgery appointment with the consultant drew near, I had become increasingly nervous about what had been found when the section of bowel which had been removed was examined…did the pathology confirm that I had cancer and, if so, had it spread to the lymph system and would I need further treatment? 

Well, no news WAS good news.  No sign of cancer.  The mass identified on a CT scan was benign, as was the significant stricture which had reduced the diameter of the gut to the extent that not even a paediatric colonoscopy camera could get through the opening to take photos and samples of the mass.  

The culprits seem to be diverticula - small pockets or bulges which form in the lining of the gut as you get older - which had become inflamed or infected.  These have now gone, along with the 30-31cm section of gut they had formed in, which had been removed by robotic laparoscopic surgery five weeks ago.

I can’t begin to tell you how good it felt to hear those words! Such a relief…phew…normal life can resume, likewise travels when I’ve updated my annual travel insurance to confirm diverticula disease as an existing health condition.  

I have absolutely no regrets about having surgery.  Without it, I would have been in a constant state of fear that cancer was growing inside me, and the digestive problems - which had already started to make themselves felt in the run up to surgery - would have got worse, probably ending up as complete blockage and an emergency hospital admission. 

My mind has also been put at rest on a number of smaller matters.  Although not fully healed, the bikini line wound is getting better and will continue to improve; nothing to worry about.  I can have a bath (up to now I’ve been showering carefully post-op) and can rub the wound without fear of making it worse.  I can also do exercises which put strain on abdominal muscles…just stop if it hurts.  Some of the stitches take up to 3 months to dissolve fully (and some isolated material even longer) so I may be aware of them for a while yet.  But all perfectly normal.

So that’s it.  I have been discharged.  They don’t need to see me again.  All clear!  

A celebration with family and friends is in order I think.  Woo hoo!!!  

Last minute nerves

Tomorrow, Thursday 24 August, is the follow up meeting with the consultant who carried out surgical resection of part of my bowel on 19 July.  Since then, I’ve had one phone call from the Enhanced Recovery After Surgery (ERAS) team a few days after I returned home, but nothing since.  

I was told that it would be a couple of weeks until the pathology results for the removed section of bowel would be available, and the results would be discussed with the Multi Disciplinary Team (MDT) before being passed on to me.  Over the last week or so, I have been expecting to hear from the hospital but no one has been in touch.

I’m hoping that no news is good news, on the basis that if further treatment is required, I’d have heard sooner rather than later.  Now I’ve got last minute nerves…what if they haven’t been in touch because it’s bad news and they would prefer to tell me in person, rather than over the phone?  Mind games in action…

There are only three possible outcomes, as far as I can see:

1.  The mass on the CT scan was benign, rather than cancer so nothing to worry about after all (not that I was going to take that chance!)

2.  The mass was cancer, but had not spread to lymph nodes, so the surgery was curative - no further treatment required 

3.  The mass was cancer and has spread to the lymph system, in which case I assume that further treatment will be recommended and we’ll be discussing options.

I dearly hope that it’s outcome 1 or 2.  I’ll keep you posted.  You keep your fingers crossed for me, please! 

28 days post surgery and passing milestones on the road to recovery

Today marks the end of four weeks since having surgery to remove part of my bowel and cut out a mass suspected of being cancer and a stricture which had reduced the size of the gut diameter so significantly that a complete bowel blockage was waiting to happen in the not too distant future.  

At the time of writing, I still haven’t heard whether the mass visible on a CT scan was malignant or benign.  I guess I’ll find out next week when I see the consultant again.  But I’m working on the assumption that no news is good news.  If it was cancer and had spread to the lymph system, I’m pretty sure I’d have been informed by now and be discussing further treatment options.

As I’m is, I’m pleased to say that several milestones have now been passed on the road to recovery.  

All the bruising on my abdomen has faded away completely.  

I’ve stopped taking pain relief four times a day, safe in the knowledge that it’s there if I need it (haven’t so far).  

The last blood thinning med injection was self-administered yesterday, and the full sharps bin will be returned to my local pharmacy shortly.  The tiny punctures on my thighs and little bit of bruising due to my inexperienced injecting will disappear soon, I hope.  I’m not afraid of needles, but I found that sticking one in myself wasn’t that easy.  Major respect for those who have no choice but to do this several times a day, every day, forever…

The four small “stab” wounds where the laparoscopic instruments were inserted have healed beautifully, and when the stitches blow the surface have fully dissolved (it takes 6-8 weeks post op for this to happen, I’m told) the wounds should be a bit flatter compared to the small bumps below the skin I can feel at the moment.  The “disembowelment” cut along the bikini line is taking longer to heal partly because it became infected and partly because it’s where my body bends when I’m sitting down and the wound opens up and closes a little with each “creasing” movement.  

A short course of antibiotics seems to have sorted out the infection and the GP’s practice nurse says that although the wound is still weeping a little and the healing is taking longer than usual, it’s still going in the right direction.  I can discuss with the consultant next week, if it’s still a problem. In the meantime, I’ll just have to be patient and let nature take its course.  And maybe spend less time sitting down!  

I’m still in the period when lifting anything heavier than a full kettle of water is banned, but I did spend several hours walking around with my big camera at the weekend without any problems, so I’m getting there.  

Next big event on the road to recovery will be a follow up meeting on 24 August with the consultant who did the operation. Unless, of course, I get a phone call in the meantime to tell me the biopsy results…Ever the optimist, I’ve started making plans to travel and meet up with friends once I’m OK to do some heavy lifting again, and assuming that no further treatment is necessary.  And there’s a first grandchild who is due to arrive in about a months time.  Something very special to look forward to!  

Hiccup in the otherwise good progress

One of the things they warn you about after surgery is the risk of wounds getting infected.  Four out of five of mine are clearing up nicely.  However one wound - the biggest along the bikini line - is playing up.  

Last week (31 July) I was sufficiently concerned to ask the GP’s practice nurse to take a look, as a small amount of puss had come out when a patch of surgical glue detached itself. She took a good look and advised that the wound didn’t appear to be infected, but I should keep an eye on it and let them know if it got worse.  She suggested taking a photo of it on my phone, so I would have a base line to compare its appearance over time. 

I noticed over the weekend that the area was stinging and painful if I wore my usual jeans, so I took a photo this morning to compare with the one taken 8 days ago and changed back into my baggy trousers.  Sure enough, the wound looks redder/more inflamed than before and is weeping a little.  There is also a slight odour.  So…back to the surgery today to get it checked out.

A different nurse took a look this time.  She agreed it looks like an infection, but my body temperature is normal so the infection appears to be very localised around the bikini line. I’m now on a course of antibiotics and should notice an improvement in 48 hours or so.  If there’s no improvement, the redness spreads or become painful or if I become unwell or confused, I need to contact the surgery.  If I develop any of the features of sepsis, then I need to seek urgent advice.

Hey ho…it was all going so well up to now!  Still, I’m glad I erred on the side of caution and consulted the GP before it got any worse.  Here’s hoping that there will be a noticeable improvement in the next 2 days.  I’ll keep you posted…

Milestones on the road to recovery…

It amazes me to think that two weeks ago today, I was on the operating table having a length of bowel removed.  Recovery since then has been both rapid and dramatic.  However the rate of improvement is likely to slow down now, so I’ve been thinking about milestones for the final stretch to the finish line of full recovery - small “wins” I can celebrate knowing that it’s taking me closer to the end goal.  

Some milestones have specific dates, some are more like timescale periods, others are an unknown quantity, but I’ll know it when I get there.  

Bruising faded fully away

I’m nearly at that stage.  No more black, blue or green areas of bruising, just gently fading areas of pale yellow.  I think it will be gone completely in a week, if not sooner.

Biopsy results

The removed length of bowel and lymph nodes will be examined to see if the mass visible on the CT scan is cancer and, if so, whether its has spread as far as the lymph system (which would mean cancer cells could be circulating around the rest of the body already).  I was told that process takes a couple of weeks and the results would first be discussed at the Multi Disciplinary Team (MDT) before being conveyed to me.  If that timescale is correct, I will probably hear some time next week.  Fingers crossed for good news…

No more blood thinning injections

I’ve been injecting myself with blood thinning medication every night before bed since Day 3 post op (nurses did it before then).  The injections continue for 28 days, so the course of injections should be over by 16 August.  Then I can take the full sharps bin to my local pharmacy and give my poor punctured thighs a chance to recover!

Follow up meeting with the consultant

This meeting is booked in for 24 August.  Not sure what happens at this appointment, but I assume it’s to check progress and discuss any further treatment required.  If the mass is not cancer, or it is is cancer but not spread to lymph nodes, then the surgery will be curative.  Fingers crossed again. 

Ban on heavy lifting lifted

For six weeks after surgery, I’m not supposed to lift anything heavier than a full kettle.  That period should be over by 30 August, all being well.  I can think about resuming traveling when I feel ready to lift a hand luggage size roller case on and off trains and up and down stairs, an inevitable obstacle when traveling by public transport as I do.

Stitches dissolved

I’m told by the practice nurse at my GP surgery that I have stitches in my wounds which will dissolve in 6-8 weeks (so, 30 August-13 September).  I hope all the lumps and bumps along the sewing lines will also dissolve along with the stitches!  Judges in the Great British Sewing Bee would not be impressed by all the puckers and gathering…But although I’d rather have a flat seam, I’m actually not that bothered. However, it will be nice to get back to my normal underwear, rather than the big knickers I’ve been wearing to avoid rubbing the biggest wound along the bikini line.

Pain 

Pain is getting better, bit by bit.  But I’m still taking paracetamol 4 times day.  Looking forward to being able to cough and sneeze without having to hug my belly to stop it hurting.  Roll on the day when paracetamol no longer needed. Maybe when all the stitches have finally dissolved and nothing is catching?  

So…there are my milestones on the road to full recovery from now on.  I’m also working on a list of things to look forward to as I progress along that road.  But not holding my breath on any of these things until I know that the surgery has been curative.  Fingers crossed again!

A celebration

It’s just over 10 weeks since I took a phone call while traveling in Scandinavia and heard the news that nobody wants to hear - a CT scan has shown up a “mass” which looks like cancer.  Like many others before me (and many still to come I suspect) I wondered at the time how many more birthdays I would be able enjoy…or even if I would make it to the next one at the end of July…

Well, I’m pleased to say that I’m still here, very much alive and (gently) kicking and I enjoyed a birthday celebration yesterday with family: son, daughter, respective partners, daughter’s baby bump and dog.  It was lovely!  Cake with candles, fizz and other drinks, and good party food.  

As well as family, I was surrounded beautiful cards and messages sending love and positive vibes.  Thank you all so much. 

No news yet from the hospital about what they found when they examined the bit of bowel that was removed.  Maybe I’ll hear this coming week, or the week after.  I should know definitely by the time I see the consultant at a post-surgery follow up appointment on 24 August.  

In the meantime, my recovery is going well.  Less pain. Bruises beginning to fade.  Wounds beginning to heal. Walking a bit further every day, now up to 3.5 miles; not bad 11 days after major surgery.  Onwards and upwards!