With a Full House and a Poker Face

It has been an eventful few weeks. It’s been an eventful few years really and not in a good way! Isn’t it funny when you think you are at your lowest point and then something else comes along and knocks you off your feet? Sometimes you get knocked so far down that you can’t even see the top of the stairs anymore. You wonder what’s the point in even trying to get back up but then you look down and there’s all these other steps leading down and down until there is nothing but the blackness and you know for sure you don’t want to go down there so you take a deep breath and you turn and start climbing again, slowly, carefully, towards the light and out of the shadows. Always trying to be ready to dodge the next smackdown… and that is where I am right now. I’m not at the bottom and I’m not at the top but I’m  sitting somewhere in between and I haven’t seen the top in almost a decade. I’m reminded of a song from my childhood, where Robin the frog from The Muppet Show sings a simple little tune about being halfway down the stairs. Do you remember it? I’ve always liked it and find myself singing it sometimes. My husband always loves when I sing it to him in character. I love how it makes him smile and I remember I probably haven’t done this for years!  It’s a simple song but boy is it loaded with meaning! It went right over my head as a child but as an adult I feel its depth. I sit here with it playing on good old YouTube and suddenly I realise I have tears on my face. I’m crying and its okay. I’ve been keeping a poker face mask on for months now and I’m glad it’s cracked.

You see I have Cancer, the big scary C word, the word that makes you flinch inside each time you hear it mentioned. I am going to have a Thyroidectomy in a little under 24 hours. The thing is I’m lucky. The large fast growing tumour on my thyroid gland is mostly benign, I was so lucky to get such an obvious tell tale sign that something fishy is going on here and to find out it’s only now turning cancerous. In fact they hope to be able to save half of the thyroid as the side where there is now tumour only showed the presence of Atypical cells from a fine needle aspiration test. Although these cells are not normal healthy cells neither are they cancerous and their presence does not mean cancer will develop there. So this small operation, all going well I will be home the same day, is likely to be all the treatment I will need. I may possibly need radiotherapy once in a few weeks time. There’s a tiny chance I may have to have the other half removed at a later date but I will be monitored over the coming months so there’s no big surprise going to drop on my head there. Neither do I have a huge medical bill to content with. The NHS, our national health service, gets a lot of trash talk but it’s an amazing fixture of our society here in the UK. Everyone I have met with has been so professional, knowledgeable and caring so I feel confident that I am in good hands. So why, when so many others are in terrible situations do I still have this kernel of fear in my gut?

I think we are hard wired to fear cancer and rightly so, it can be devastating. With all the advances in medical science there’s still a lot to fear from Cancer. My grandfathers wife has been a mother to me since they came back into my life after I left home. During the time I was cut off from them she developed breast cancer and had a mastectomy carried out on one side of her chest. She found out it had returned after an operation to replace a leaking silicone implant a few years back. It had also spread so she has secondary “metastatic” breast cancer. She is a “lifer”, meaning that she has to take constant medication and endure awful side effects to keep it at bay.  She is a wonderful lady and I’m so grateful to her for all the advice, support and care she has given me over the years and it’s painful to know she is suffering like this but has no other choice. My grandfathers health is also not great. He’s been carted off to hospital a good few times this past year and is developing dementia, combined with panic attacks he often gets, still suffering from PTSD so many years after his army days. They muddle through each looking after the other as best as they can and I can see the love they share in a hundred different ways. I don’t get to see them or help them enough because of my own poor health but they are never far from my mind. I only hope that myself and my husband make it through to our old age to be there for each other. The events of this last year make me doubtful!

My husband started having chest pains around a year ago. Mostly when he lay down at night and it was only on his right side. When he went to the doctor he was told it was likely because he had put weight on. Into December he got the flu bug and it was a bad one. Our daughter also has Fibromyalgia like myself and she struggles with various aches and pains but had been experiencing terrible low stomach and back pain for a few years. Every time she visited a doctor she got the same old story “you have to expect pain when you have fibro” but she knew it was something else. She got food poisoning from a bad Chinese takeaway meal and needed medical treatment. Her stomach pain became unbearable and was still there after she got over the illness. This was finally when they decided she should have an ultrasound scan and low and behold there they found an ovarian cyst the size of a small football! She was booked in for emergency surgery on the 30th of December 2014. We travelled through to stay a few days so we could be there for her. She was given a full laparotomy to remove it as it had grown so large it was impossible to take out with the usual keyhole procedure so she was in a lot of pain, bedbound and was terribly sick as she had a bad reaction to several pain medications. Having to use a anti-sickness medication usually only given to those having chemotherapy!

The day after my husband woke in the morning having difficult getting his breath and with a worsening of the chest pain. As I went to see my daughter with her fiancé he went to A&E! There he was told he just had the flu and that this particular strain had symptoms presenting as a heart attack. Worried about infecting our daughter and worried about my husband we returned home. He did improve but over the weeks the breathing difficulty would return again and again. Then in March it got very bad and he made a doctors appointment. Now you know he’s worried when he actually makes an appointment! Not that he made it to the appointment, on the night before suddenly he worsened to the point he couldn’t catch a breath and with severe chest pain so he was taken to the hospital by ambulance. It was late at night I couldn’t go with him so I had to call his brother for help. The emergency doctor on the phone suspected pleurisy and thought after treatment his brother would be able to bring him home. As the time ticked by and I heard nothing my worry grew. It turned out he was extremely lucky to be alive! Not only did he have pleurisy but he had double pneumonia and pulmonary embolisms; lungs filled with many blood clots! Each single clot had to pass through his heart without getting stuck to end up in his lungs. They performed a test which my husband tells me was called the miller test; the results found that out of the 16 main arteries branching into the lungs 15 had multiple blockages. His stats were terrible; his oxygen levels plummeted when they would take the tubes out to test his breathing. During everything I have been through in my life I have never been as scared or as worried as those first few days. I am not a religious person, I was raised Christian but my faith broke when I asked for help so many times as a child in need and no help came, but I can tell you I prayed that night. I cried and I prayed not to take him from me. I prayed to God he would take me instead rather than leave me here without him. This man saved me and has loved me and treated me like his queen since the night we met I have felt safe with him. My husband has chronic high blood pressure that is not easily controlled by medication; he has had a series of mini strokes and has sleep apnea. He is my full time carer and has the larger role in caring for our son who has special needs,  then there’s the housework, shopping, gardening, diy, etc so he’s always under a heavy burden of duties. He never complains though he’s good at procrastinating but he pushes through to get things done when he needs to. I know he’s struggled to adjust to how much my ill health has affected our life and now it’s himself we have needed to make adjustments for too.

When this happened my daughters fiancé immediately took time off work and they both came through to help. Doing a massive spring clean, which we hadn’t managed to do in 5ish years ourselves, to clear the house of dust so it wouldn’t impair his breathing. Still in recovery herself she struggled to help but did what she could manage. Together they made a big difference. I did too much and paid for it later big time but I needed to be busy. Her fiancé drove us to the hospital and back every day, sometimes twice, taking various family members over for the afternoon and then evening visiting hours. We exhausted the bank account as they went around the town getting enough shopping in for a month or more, leaving my husband only to pick up fresh produce as needed, so he didn’t have any heavy loads to deal with. It was unfortunate that all this coincided with our sons 18th birthday, party plans were abandoned but he took it very well and was just glad he still had his dad around. He hasn’t coped very well when there have been previous health problems and I really think any meltdowns from him may have been the straw that broke the camels back for me! On his birthday we took all his cards, presents and cake over to the hospital with his best friend and my husbands parents so he could open them with us all, and more importantly, his dad. It was very emotional and certainly memorable, the other patients were understanding and all enjoyed a wee bit of cake too. Six months on and he is slowly getting better but there is substantial damage to his lungs. He is still in pain and struggles with getting a full breath when doing strenuous activities but he’s there with me on those steps and it makes it a lot easier to face that climb!

As if that wasn’t enough troubles for us all the next thing was my daughter fell pregnant. She has a coil fitted so it was most unexpected. She was “late” but wasn’t worried at first then other signs developed. A home pregnancy test confirmed her suspicions. The problem was that her surgeon had asked her when she intended to start a family and she said in a few years. He said that’s good as it would be dangerous to carry a baby to term within a year of her surgery and this was just a few months down the road. A few days later she then began to bleed heavily and her partner took her to A&E where they advised her she had most likely miscarried. She called her doctor who gave her an appointment at the prenatal clinic. Tests done at that appointment confirmed the pregnancy.  The hormone levels were higher than expected if she had miscarried a few days ago. So she had to go back to be tested three days in a row. They told her the hormone levels were still rising but not as much as they would do with a normal pregnancy. She was then sent for a scan which could not detect a foetus in her womb. She was admitted into hospital for emergency surgery. It was 3 days later she finally had her surgery. For 2 days she had lost her place on the surgery list to emergencies but it was too dangerous to let her go home. The surgery should have taken 20 minutes but took almost 4 hours. Using Keyhole surgery through her belly button they would insert a camera to see what was going on. The pregnancy was ectopic and her fallopian tube had to be removed on that side but the procedure was hampered by extensive problems from her first surgery. Her womb and muscles had become fused along the laparotomy scar line and a significant amount of lipomas (fibrous fatty benign lumps) had grown around the area. It was an awful shock for her and her partner but it did answer why she had such a difficult recovery and was still experiencing issues with intense pain, not being able to lie on her front or able to sit or stand with a straight back without a lot of pain. She had been to see a doctor about her ongoing issues and was again told hey it’s your fibro and you’ve put a lot of weight on while you haven’t been able to be active so lose the weight and you’ll be fine. She fell pregnant because the coil had moved out of place by the movement and stretching of her womb.

Along with fibro my daughter has many traits similar to her younger brother but to a lesser extent. There are elements of tourette’s along with sensory issues, anxiety,  ocd and aspergers behaviours though we have never pushed for diagnosis as she copes well. She had a difficult time with anxiety and depression as a teenager but had worked hard to secure a place in university and things were going so well for her. Now she has spent most of this year isolated at home, in pain, old anxieties have crept back in and she has suffered panic attacks and low mood. If it wasn’t for her fiancé living with her I’m sure she would have had to move back home. Her university tutors were very understanding and allowed her a lot of leeway to work at home and extensions on her essays and projects but at one point it seemed she would lose her place there. It’s only through her determination to get better and with the support of her partner and family that she is finally on the way to a full recovery. So she’s on that step right beside me too.
There have been many other smaller issues that have plagued us this year and I know there will be more blows to come, it’s life, but I do hope there are no more for a while! I am utterly bone weary. The dreary drab summer has been such a let down after last year. My health is usually worse in the winter and I get an upswing during the summer but not this year. I have felt an insidious deterioration that I’m unable to halt. I’ve felt scared I’m returning to the bad old days where I was mostly bedridden from fatigue and pain. What little “living” I have I do not want to lose. When I stop to count my blessings there are many and it surprises me!

This life is such a hard slog at times but there are moments that make everything worth it.. Like my full house. My daughter and her partner came home for a few days. Nothing makes me feel happier than having my kids home! We chat and laugh, watch movies and eat, we cuddle up on sofas and just be together and my heart feels like bursting! I always thought I would miss my children being children immeasurably and I do miss that but I find seeing them find out who they are as an adult is wonderful and I treasure this new stage of our relationships. I know we are all getting together next weekend and even better it’s my birthday that weekend so I know there will be cake! Right now I’m going sit down on my step for a rest.  I feel we have all been waiting for the other shoe to drop (we’ve gone through a few pairs now) but through it all I still feel lucky because we are all still here. We got through it all and while what doesn’t kill you certainly does not make you stronger it does make you realise how sweet life can be even when it’s a bit crappy!

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