2019 A husbands story. 

As I start writing this blog, I think of all the different emotions that I have been through in 2019. They say that when you are diagnosed with an illness there are several different phases of dealing with that illness and as a healthcare professional, I understand that and know it to be true. What they don’t tell you is how you will behave when the person you love, the most in the world, is diagnosed with an illness.

This is my story of our year and I hope that those reading it, who are in a similar position, will be able to draw strength from it and cope as well as we have with the adversity.

It was early in January 2019 and I was on a day course in Hull when Karen my wife rang me to say she’d been to the doctors and they were concerned about a growth in her abdomen. She said don’t worry, finish your course Daniel (our eldest son) is going to come with me and I’m sure everything will be fine. Later that day I got to the hospital to find Karen in bed, in extreme discomfort with a drip in her arm and in and out of sleep due to the medication they had given her, to control her pain.

After discussing Karen’s condition with the doctors we were informed that she had a fibroid which was causing her the symptoms that she was experiencing. The fibroid was the size of a 28 week baby and naturally was drawing blood and nutrients from Karen which was the reason she was feeling so unwell. Due to its size and position we were informed it would be best for the fibroid to be removed and Karen to have a hysterectomy as soon as possible.

We move forward to May 2019 and despite several appointments with the gynaecology department Karen still has not had the fibroid removed. Each consultant or doctor has suggested a different course of treatment before the surgery to remove the fibroid.

Whilst all of this is time-consuming and draining we understood that each doctor was trying to do the best they could for Karen to avoid extensive surgery and make the procedure as straightforward as possible. We were also aware that whilst the fibroid was very uncomfortable it was fairly common and of course not life-threatening. Therefore we were happy to continue to take advice from the specialists that we saw.

In North Yorkshire the NHS are running a pilot scheme where they are performing mammograms on ladies between the age of 47 and 49, instead of the national norm which is ladies of 50 and over. Karen had been invited to have a mammogram but due to work constraints and dealing with hospital appointments for the fibroid she had cancelled two appointments, eventually going to the third on the 13th of May.

Ten days later we received a letter to say that there was an anomaly on the screening and could we go to York hospital on the 28th of May. The letter explained that 97% of women who received this letter were absolutely fine and we should not worry.

The 28th of May was the day that our lives changed and we heard the news that nobody ever wants to hear, ‘We are sorry to say that it looks like you have got a cancerous lump in your breast. Don’t worry we will do a biopsy on the lump and if it is confirmed we will arrange an appointment for you in Harrogate to see the specialist who will explain everything to you. It is a very small lump and it is at a very early stage.’

I remember leaving that hospital with Karen thinking, I need to be strong for her, I cannot let her see the terror and fear that is running through me at this moment, I need to make sure that I am there for her every single step of the way. We got in the car sat and talked things through quite sensibly without emotion, very matter-of-fact, decided that now was the time we had to tell her mother and that now was the time we had to tell the children. We phoned her mother on the way home and explained where we had been and what had been discovered. Of course her mother had lots of questions many of which we couldn’t answer, but because I had been with Karen and was listening through a different set of ears I was able to pass on a lot of the reassurances that the Cancer Nurse had given us. Later that day we sat down with our four children and explained the situation to them. Looking at their faces I could see bewilderment and questions forming, however none of them quite knew what to say or ask.

Fast forward one week and Karen gets a phone call, on the Monday, from York hospital saying that yes it was cancerous and an appointment had been made for her to see the specialist on Wednesday in Harrogate. This was the time, when as a husband, I went through the emotion of why, why my wife and why can’t I take this from her and have it myself, so that she doesn’t have the pain and suffering. You also got through the what ifs, but at this stage I cannot share it with Karen as it is still very early in the diagnostic process. It is seven days before her 49th bIrthday.

We go and see the consultant on the Wednesday who is very understanding, very friendly, very tactile and wants to reassure both Karen and myself that this small lump will be easily removed and with the possibility of radiotherapy Karen will be fine and will have no further concerns about the cancer. We go through exactly what is going to happen and the date is set for Karen to have a lumpectomy.

We leave the hospital and go to see her parents and explain everything that has been said. At this point I become very aware that as a patient Karen has not heard an awful lot of what has been said and so my role changes, because I’ve paid attention to what the doctor has said. So I am able to explain exactly what is going to happen and the timescale to Karen’s parents and the fact that we have been reassured by the doctors that the type of cancer that Karen has is fairly common, easily treated and very rarely returns in any form. It is June 5 and surgery has been booked for the 4th of July.

That one month seem to drag by and we went through a huge emotional rollercoaster. I remember meeting friends and telling them about our situation and explaining how useless and helpless I felt because I could not do anything for Karen. I remember being strong for her mum and dad as well as her brother and sister and our four children, telling them everything will be fine and that we will all stick together to get through this, yet still feeling helpless and saying the words you believe everyone wants to hear. I remember sitting with Karen when she had her wobbles telling her that everything will be alright and that I will be beside her every single step of the way and she need not worry for anything because I will provide for her. Of course what I realised was, I needed this as much as she did, I needed to be able to share our story with our friends and family and I needed people to care and considered me as well as Karen. I only realised this much later and by talking to people and sharing my emotions it helped me cope. I was able to talk to family and friends and share my concerns without having to burden Karen further. This was really important to me and I will always remember the ones who rang me and said ‘how are you?’

Surgery came on the 4th of July and 10 days later we went back to receive the news that they have not yet got a clear margin and the cancer which had originally been diagnosed as nodular was actually lobular, which meant they were going to have to repeat the surgery to remove some more cancerous cells. Another date was booked for the 25th of July but this would not be as long a procedure nor as invasive as they would not need to remove any lymph glands. We were also told that the cancer had not got into her blood system or lymphatic system and therefore was only contained in a small area of the breast.

In many ways Karen almost seem prepared for this news whereas I believed that having had this first procedure everything would be fine and we would be able to move on. I was so confident that we had actually started planning a party to celebrate Karen’s good health which would now have to be put on hold.

Karen had her second procedure on the 25th of July and a further 10 days later we went back to see the consultant. This time I was more prepared for the news that we received which was that they still did not have a clear margin and therefore the only course of action was a full mastectomy. We were told that an appointment would be made for us to see the consultant to discuss the reconstruction. This appointment came through in early August and the date was set for the 30th of August for the surgery.

At this point relaying this information to Karen’s parents was very difficult, as they had all the concerns that any parent would have, but was not getting the information firsthand from the doctors. As I’ve already said Karen being the patient didn’t always come away with the correct information or the full story and so my role was to ensure that the family got a true picture of what was happening. I also had to make sure that I attended every appointment with Karen, which meant juggling my work and business around her almost weekly visits to the hospital.

Karen and I had spent many times discussing what if, and realised that discussing what if, is not productive but it is inevitable. She said she had the easy job because all she had to do was go through the procedures and get better where as I had to ensure that everybody was okay and if she didn’t survive I would be left picking up the pieces. Of course this may be true in reality, but, it doesn’t make her job any easier and again I found being by her side was more important than anything else in the world.

Karen’s third and final breast surgery was done at the end of August and again we found ourselves going through the recuperation process. We went back to the hospital ten days later to be told they have now got all the cancer and she is fine, no chemotherapy and no radiotherapy. She would still need to have regular appointments until the reconstruction process was complete.

At the same time ironically she was still seeing gynaecology about the fibroid and our son broke his nose playing football so I was a permanent fixture in the outpatient corridors of Harrogate Hospital. The nurses knew us not only by sight but now by name and one particular nurse knew a lot about our family because we’ve seen her so many times, she just laughed every time she saw us because she knew we were there for yet another appointment. It was like a game, can you guess which department we are here to see today. We joked that not only will we now going to be invited to the Staff Christmas party but we also had our own parking space at the hospital.

The next eight weeks we visited the hospital on almost a weekly basis because Karen didn’t heal as well as they had hoped and they were concerned about infection and the condition of the wound. Every appointment Karen said to me you don’t need to come to the next, but I did, not only for her but for me, so that I was reassured that everything was okay. Our final appointment for 2019 with the oncology department was in the second week of November when they told us, ‘we will see you in three months.’ We both sat there a little bit in disbelief because for the last 4 1/2 months we had been at the hospital almost every single week and so to be told they wouldn’t see us now for another three months was a shock. What was I going to do with my Wednesday afternoons if not see the specialists.

In the meantime gynaecology had booked Karen in for the 18th of December for her hysterectomy. This date soon came round, especially as we had Christmas to plan for before Karen had surgery. We went to the hospital for 12 o’clock as planned and at 2 o’clock they took her down to surgery, by 6 o’clock it was all over and Karen was back on the ward safe and sound. I went to see her that evening and as expected she was in a lot of discomfort and pain and was very sleepy but she had survived her fourth operation this year and was now starting the road to recovery and the road to 2020.

I went home that night and sat watching television receiving lots of messages asking how Karen was and with each message felt myself welling up because of the relief that almost overwhelmed me, knowing that she had finally made this last hurdle and would now be able to recover, get stronger and be back to my Karen.

What this journey has taught me is a spouse can never take away any illness from their partner despite wanting to do so, so wasting emotion thinking that, is not productive.

It has taught me that any little thing you can do for your partner means so much to them, whether it is attending an appointment, dealing with family and friends or as simple as making a cup of tea in bed (I am very good at that now).

The patient, the person with the illness  appreciates every small detail, but also reacts to every small detail and often a minor challenging situation that would not normally phase them, becomes a major crisis, so dealing with those challenges for them can be a tremendous relief for them.

It has taught me that talking about your emotions and feelings and sharing them with family and friends is really important and it is okay to say you are worried, it is okay to say you are scared and it is okay to cry if that is what you need.

It has also taught me to appreciate what we have, we have each other, we have four beautiful talented children and we have a wonderful circle of family and friends who are as much there for us, as I have been for Karen.

It has taught me not to be pigheaded and think I can do it all, to ask for help from these people, because when they offer it, they really do mean it.

The final thing 2019 has taught me is, if I didn’t already know it, I love my wife more than I realised you could love anything and life without her wouldn’t be life at all.

Thank you to all our patients for being understanding and we look forward to 2020 a year of vision.

Garrey