Without a doubt the best team mate I could have had in this is Lisa. She has been amazing, amazing beyond comprehension really as she had only just come off the back a a spell in hospital herself where she so nearly lost her life due to the surgeons negligent error. He wrote to us to say that we needed to understand that he found such things just as difficult to deal with as Lisa did…..w@n#er.
Anyway, Lisa ended up with 8 days in intensive care, at least another week on a ward and then months and months of recovery both physical and mental as she had suffered terribly with ICU psychosis brought on by the drugs, let alone the internal injuries to recover from. The self styled brilliant surgeon had stuck a verres needle right through her stomach, through part of her bowel, then another part leaving her for around 10 hours in excruciating pain as blood, stomach acid and bowel contents leaked into her abdomen. His stance – it can’t be that bad as he never makes mistakes.
Just after this I was diagnosed with Essential Thrombocytaemia – now considered a type of blood cancer and given the option of a treatment that would stop the ET killing me but could propagate the onset of Acute Myloid Leukaemia. So as Lisa slowly recovered we were already living under something of a shadow of the ET and the possibility of AML.
In March 2017 my blood results started to change markedly and I was diagnosed in April with a very nasty form of AML. Lisa was well recovered by this time but still suffering with both physical and mental effects of what went on – the latter are so easy to overlook and we often hear about Post Traumatic Stress in soldiers and I used to think that it was the sole preserve of the armed forces and to a lesser degree the police and emergency services. Now I realise it can be any of us.
Over the coming months as we seemed to be hit by bad news after bad news from how ill I was, to damaged chromosomes making the likely survival rate being 75% against, the brutal types of chemo that could kill you quicker than the disease and so on, and yet Lisa was always a bloody rock.
She had to carry me, almost literally at times, she had Lily at home, she had to try and keep the other kids up to speed – sprinkled round the country at Uni etc, my parents, her parents, run our businesses and look after herself. Those of you who know Lisa will know who came last on that list and yet she stepped up time and time again. Beyond description and belief, she was off the scale amazing and still is. Beautiful, inside and out and of course had plenty of her own moments on the floor in bits, sobbing and crying as it all became too much but not with a hospital full of staff around her to help.
Please all remember that this is beyond tough on Lisa – she has to an extent lost her life and even her own identity; it becomes really hard work on here when people, out of concern/kindness ask her about me and what might be going on, be it health or a first speaking job. Please, please remember that she needs all the love and support that is going too. If you want to know about stuff on my side, please, ask me. With Lisa, maybe ask how she is, send her a card, a little present, a text to say she’s great. Above all, please avoid doing nothing even if you’re not sure what to say. Just say something.
Step in her mum and dad, Ian and Val. Apologies for the rubbish pic but I love this pic as it shows what they are like together, smiling and laughing so often and standing by Lisa on an almost daily basis when she needed it most, helping with shopping, washing and ironing, being there for Lily from school, cooking, hoovering, DIY jobs and so much to take the weight off Lisa and allow her to drive back and forth from the hospital to come and see me. For me that was invaluable and for Lisa it was such hard work – get Lily off the school, jump in the car for the 90 minute (if she was lucky) drive to hospital, a couple of hours with me, then back in the car to be home in time to be there for Lily home from school, cook dinner etc etc.
So I guess to sum up Lisa has basically had four years of hell and even before her surgery had months and months of fear and worry over what the issues were requiring the exploratory surgery which in medical parlance was to ‘establish if there was something sinister’ going on. Silver lining, there wasn’t anything but the surgeon nearly managed to kill her anyway through his negligence.
For the record, that was the conclusion of the NHS investigation some 18 months after the event, not just our opinion, which it vindicated.
The worry and pain for family is something I think about every day and it was a chance to say a tiny thank you to our parents and kids when we had a family party to celebrate the first birthday of ‘Jonny Canada’ the name of my stem cell transplant as all we know is that it came from a Canadian fella. I swear I have a desire to wear check shirts and cut trees down!!
My mum excelled herself with a ‘Jonny Canada’ birthday cake and Sophie and Tom even bought him a birthday card!
Of course the biggest team supporting me has been the medical team both at Nuffield Hospital and at Addenbrookes. The Nuffield team got me through the first two rounds of chemo and then it was into Addenbrookes for Chemo 3; they had said the first two would be brutal…..but they were a walk in the park compared to Chemo 3 and the prep treatments which were off the scale hideous. From the start of treatment to transplant it was 4 months – it is now a further 12 months of treatment to try and overcome the horrendous complications, infections and so on that arise from Chemo 3 and immune suppression etc.
From the start the hero for me has been Doctor Charles Crawley. When Lisa and I first met him I felt great as he was like a top coach, simple and direct (something that always helps with my small brain!). He explained where we were at, with a ‘very dangerous disease’ and where we needed to get to, cured, and how we could get there. There was no dressing it up, no messing about, and within a week of seeing him I was being admitted to Nuffield and the start of treatment. I think it’s fair to say that Lisa was at first less keen on Doc Crawley because of his direct approach but as time went by and we all go to know each other so much better she too placed him up on the podium where I had put him!
Of course the Doc is the leader and the team he leads is massive, and they’re brilliant. Jo his right hand nurse on the transplant team (I think that secretly she is Addenbrookes Chief Exec!!) and all the other nurses in the Oncology Unit, the other Doctors and nurses on Ward C10 where I was in Addenbrookes, the nurses in the Addenbrookes Haematology Day Unit and of course the oncology nurses at Nuffield and the regular nurses on the ward there.
They have all played their part in keeping me alive to date as have so many friends who have also supported Lisa when and where they can. Without them I’d be dead.
Above all that though, as Doctor Crawley said to me, the family is the really important team and Lisa is the Leader!!