Almost a year ago my son Michael was diagnosed with Hodgkins Lymphoma. Here is our story
After a family night out Michael asked me what he should do about the lump he had recently found on his neck. I had a feel around his neck and my instinct told me this was going to be serious. I very calmly told him to make a doctors appointment. This was to be the start of our story.
Over a few weeks the doctor was visited, bloods were taken, a biopsy was performed under a local anaesthetic and the conclusion was Michael had Hodgkins Lymphoma, a more definitive diagnosis was to come later. I was at work the day I got the call. My boss told me to go off sick and take care of my son, advice I will be forever grateful for, as that was exactly what I did.
12 01 2011
Michael was gently told by his doctor that he had Hodgkins. He was reassured and was calm when we spoke on the phone, a calmness that would prevail throughout his ordeal. He was living in another city but I asked him to come home, this was to be family time and I wanted my family close. While he was travelling home I had a couple of phone calls to make. My daughter was also living in another city and I didn't want to give her the news while she was on her own, I decided to wait a couple of hours until I knew her flatmates would be in to comfort her. My husband was also away on business out of the country. I had to do the same for him; wait until he had private time to absorb the news and for his close friends and work colleagues to help him out. Michael and his girlfriend arrived a couple of hours later, his sister not far behind and we sat down as a family and made our plans. Thank goodness for the internet and social media sites, we were able to be together through technology and the godsend that is instant messaging. As texts of comfort beeped into our phones they were read out loud. As his dad received texts he messaged them to us. I mapped out what was probably going to be in store for us over the next few months. Friends and family would all react differently to the news. There would be no right way or wrong way. We were not to take this personally when our friends crossed the road rather than speak to us. Friends we thought would be incapable were fantastically supportive, and vice versa. This proved true to all of us. We could do this in two ways: we could be all doom and gloom or we could be happy and cheerful. Whichever path we chose Michael would still have Hodgkins. We chose the humour route. We started to give all the texts marks out of ten for originality, well... it made us smile. His sister won. Michael wanted life to be as normal as possible, this is what we strived for.
31 01 2011
Michael was to have another biopsy and a node removed under a general anaesthetic. This was to give a more detailed diagnosis. His dad and I went into the ward to collect him from the hospital and to take him back to his flat. I looked at Michael's newly opened skin and remarked what a good job they had done. The scar would be so faint in a few months and unnoticeable. I had to fight off the instinct to slap away the nurses hands while he was removing the cannula from Michael's hand. I thought I could do a better job. Another CT scan was scheduled on 02 02 2011.
04 02 2011
Michael was told today that he had Hodgkins Lymphoma Stage 2A. He now needed a PET scan and his bone marrow was to be checked to confirm this but the doctors were confident it was a stage 2A. While the doctor was describing to Michael what would happen during his bone marrow retrieval his dad felt faint and had to lie down on the consulting couch. This gave us some light relief in an otherwise serious situation. But this was to prove I would be the parent to do all the hospital appointments and treatments in the future. His treatment plan was mapped out. He would be treated using ABVD regime; 3-4 months of chemotherapy followed by 3-4 weeks of radiotherapy. He would lose all his hair. His fertility would be compromised. He was to give a sperm sample. This was the worst news Michael had received so far. I reassured him that this was one appointment I would have nothing to do with.
17 02 2011
First chemotherapy session. Michael was to go into hospital around 2pm. It was explained to him previously that he would have an overnight stay which was routine for his first chemo session but the ward was so busy they had no bed for him. This was good news to us, I would take him home. His session lasted approximately 3 hours, he had 3 chemotherapy drugs put into his body through a cannula in his hand, the fourth was injected. It all went without a hitch. I took him back to his flat so he could reassure his girlfriend that all was well, he spent some time with her then I took him home, an hours journey. She would arrive the following evening to spend the weekend with us as he recovered, as would his sister, all of us giving each other comfort and moral support.
On the journey home Michael felt a little nauseous, amongst the assortment of medicines he had been given were the anti sickness drugs, he just needed to take them. The following day he actually vomited. This he did not mind, he was well prepared. He vomited for two days then on the third evening he suddenly brightened and wanted chips from the chip shop. He got them. The first session was over. When Michael recovered enough he returned to his flat. I drove him to the station where he boarded the train that would take him almost to the flat. This was his preferred mode of transport; it made him feel less nauseous. I felt guilty that he was leaving my side but also immensely pleased that he was doing so, it meant I could recharge, ready myself for the next chemo weekend. This was to be our routine.
03 03 2011
Second chemotherapy session. It went much the same as the first one. The sickness was worse. The anti sickness tablets didn't seem to be doing the job. Michael lay down on the sofa and zoned out. We went about our business around him, trying to act like this was normal... nothing to it... but inside each and every one of us, we were hurting for him. Again on the third evening Michael rallied, again chips were asked for. His sister was more than pleased to go out and get them for him.
Michael's hair is noticeably thin now. He wears a hat outdoors. This he decided upon after we went out to the car one particularly windy day, I heard him exclaim "ach, my hair is blowing away in the wind" and he made frantic efforts to protect what little he had left. We laughed about it when we both got into the car. His face is a little puffy, steroids are given with his chemotherapy drugs. His eyebrows are still intact, this is the one thing that Michael believes makes people realise you are a cancer patient and not just a baldy. He didn't want that label. For the next week or so I hoovered his pillow every day, he had such a lot of hair to lose. If he walked past when I was busy with the machine I would offer to hoover his shoulders. Eventually the eyebrows were gone too. Apart from the chemo weekends our lives went on as normal as was possible. Michael went back to his flat as and when he felt able. His sister and girlfriend went back to university and his dad carried on working, travelling abroad as was necessary. I was forcibly taken out for coffee and cake and our lives just ticked over. The chemotherapy sessions came round and were dreaded by us all.
17 03 2011
Third chemotherapy session. Known as the second cycle. Again it was much the same. This time he felt unwell as soon as we got home. He had different anti sickness tablets, they didn't work either. Another weekend lying on the sofa, I wanted him there, as close to us as possible. I offered him small portions of food regularly. We joked that he had become my toddler again. He rallied yet again and this time pizza was ordered and delivered.
31 03 2011
Fourth chemotherapy session. This time I arrived at Michael's flat and parked the car. Michael was going to take a sedative, this was to help with the sickness. We took the short walk to the hospital. The cannula was inserted and Michael was promptly sick. This was now known as association sickness. Michael's brain was telling him to be sick. He just had to deal with it. After this session he would be more than half way through, it seemed like progress. Chemotherapy has a cumulative effect on the body and this was proving to be so. Now he was being sick during his session and for 5 days after.
14 04 2011
Fifth chemotherapy session. Third cycle. We now knew Michael was to get just three cycles of chemotherapy, he was responding well to treatment. It was worth it all. This time he had a side room. He could now fill around 6 sick bowls during his session. We had it down to a fine art. I knew when to change the sick bowl for a fresh one. I knew when to wipe his nose for him and when to wipe his chin. No 23 year old should have to suffer the indignities of his mum wiping his nose but such was the nature of his cancer and his cure. I was happy to do it. This time he took almost a week to recover, but recover he did and off he went back to his other life.
The following weekend our football team were playing for promotion. Michael was fit and well enough so all four of us set off in the car for the football ground. For the past few years Michael went to the football occasionally with his dad. He was seen as the lucky mascot, apparently when Michael was there they actually managed to score rare goals, and now they were to get promoted if they were so lucky today. I was pleased to know Michael was the lucky mascot, it certainly beat his dad's lucky pants. They won. Delighted faces all round.
26 04 2011
Michael had a scheduled appointment with the radiotherapist. He was told he will have three weeks of radiotherapy. Every week day with the weekends off. Another CT scan was scheduled for the 17th May.
28 04 2011
Sixth and final chemotherapy session. We had a mild case of excitement, just one more. Again the side room. Again the sickness. After all the drugs had been delivered safely into his body Michael was asked to wait to see his oncologist doctor. He arrived in the room quietly with Michael's liaison nurse and asked him how he was feeling. Michael put on his usual bright smile and said he was doing fine. The doctor then put it to him that they were thinking that he should have three more months of chemotherapy instead of the three weeks of radiotherapy. I was momentarily stunned. I saw my son look deflated. I let the doctor explain why. It seems the radiologist had expressed concern over the large area that was to be treated. The treatment would damage his lungs and skim the top of his heart. Chemotherapy also damages his lungs and heart. This seemed like an impossible situation. It appeared that the doctors were unaware just how badly the drugs were affecting Michael. He was not one to complain. He had always managed a smile. It now transpired that they were unsure which treatment to use. Now my instinct was kicking in. It appears the outcome was the same, a cure for Michael. I let the doctor know that Michael was extremely sick after the chemotherapy session and was incapable for a week. He left us with an appointment to see the radiologist and two weeks to decide which treatment option to go for. Michael's mind was made up in an instant. He would go for the radiotherapy. I was ready and more than willing to fight for this. We left the hospital and walked the short walk to the flat with Michael christening the bushes once again with his vomit but hopefully now for the last time. Back at home I did what I had advised everyone else not to do... I went on the internet. I needed facts and figures. I was getting prepared for our meeting with the radiotherapist.
10 05 2011
Michael had an appointment with the radiotherapist. As soon as we sat down she told us that the radiotherapy had been rebooked. On reviewing his case this was the way to go. The doctors had been unaware just how much he had been suffering. Some patients have very little or no side effects to the chemotherapy drugs and this option would be ideal for them. Now preparations were made. An appointment for a CT scan and a simulation mould for the 17 05 2011. I was aware that this would be when the staff would place very small tattoo marks on Michael's skin. I didn't want them to make permanent marks. I didn't want him to be reminded of his Hodgkins every time he looked in the mirror. I was sad about this but I had to concede. I have no idea why I was fixated on this. A mother's brain can work in mysterious ways.
26 05 2011
Radiotherapy treatment starts. Michael was to do this on his own. The hospital was a few minutes walk from his flat, an hours drive for me. Michael announced it was silly to drive that every day and I wouldn't get to be with him anyway. I agreed. I made sure he called me after every session. Everything seemed to be going well. So well in fact that we booked a very isolated cottage, somewhere we could go and chill out for a week. My daughter went off for a few weeks touring Europe with the knowledge that her big brother would be fighting fit by the time she returned. Michael's last radiotherapy session was on 20 06 2011, during the week of our holiday. We planned to be there waiting for him when he came out of the hospital. He left without a backward glance and no news of when he would be seen by any of his doctors again. It didn't matter at that point. I saw him in the distance before he saw us, he was getting his phone out, firstly to phone his girlfriend and then me. He gave us a big smile and a hug, it was finally over. We went back to the flat and celebrated with chocolate cake and chocolate milkshake, heavenly.
Michael's girlfriend announced she was in training for the 'Race for life' which was to take place on 05 06 2011. Would we sponsor her? Absolutely. Whatever we could do for cancer research was a pleasure. The NHS had been criticised in the past but we had nothing but respect and thankfulness for the treatment my son received. Her training started in earnest. This wee slip of a girl was not used to running. We gave her our advice; eat lots of pasta and just run. She ran round the corner from her flat in a fit of enthusiasm only to get a stitch and a much needed rest. On the day, she finished the race. Much of it was walked. She raised a lot of money.
Michael had a final CT scan on 06 07 2011. He was finally given the "all clear" 22 days later, a long 22 days, it seems only bad news travels fast. Today he still struggles with the fatigue, the sickness continues but is getting less and less. He has gone back to his old life. Our apron strings have been cut again, as they should. He visits us as normal now, still bringing his washing home.
Michael never complained once. He showed no signs of anger, or asked the question "why me?". "It is what it is" was our motto. When Michael was first diagnosed I decided that we would all be involved in this every step of the way. We would discuss everything. If anyone had a question, a fear, a scary moment, it was to be discussed and reassurances given. No whispering behind his back. We quickly realised that things could be worse. He wouldn't lose any part of his body. Hodgkin's Lymphoma is easy to treat and has a very high percentage of a cure. It came at a time when he was having some quiet time in his job. His lovely girlfriend is a psychologist. He has a wonderful network of good friends. He is adored by his family... and he has me for his mum xx
What did I learn? All of the above. And tears are hidden very well in the shower.
Your story is touching. I'm so glad your son is doing well now. I've recently been diagnosed with Hodgkins Lymphoma stage 2. I'm right around your son's age and I'm following a similar path. I too, moved back in with my mother and I am so grateful for the care she has been giving me. You remind me a lot of her! I will have to show her your story. Thank you so much for sharing.
I'm sorry to hear of your recent diagnosis, my family and I wish you all the best with your treatment. If I can help in any way please do not be afraid to get in touch: either you or your mum. Sounding off to a complete stranger can be a good thing, especially one who understands what you all are going through.
Michael continues to gain strength, at first it was a slow process but now he seems almost back to normal. In the last 8 months he has regained his life. He is in a band! We Were Promised Jetpacks. When you are having a bad day google them and you'll get some sense of what things will be like for you when your treatment is over.