I wish you joy and happiness but above all this, I wish you love

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The last time I wrote I was in the middle of a blood transfusion and was concerned that my festive plan was going wrong. The good news is that the new blood did it’s job and after a few days I began to feel better. I had another blood test and sure enough the whites, reds and platelets had all picked up. My rubbish immunity due to low white blood cells had put pay to some of the festive fun I had planned, but when you need to stay in and avoid all germs in order to be well at actual Christmas, then so be it. The whole of November and December had been scheduled to make sure I was fighting fit and out of the chemo fog by Christmas. Whilst I can control appointments, tests, etc, I am yet to be able to control what goes on inside my body, so those first few weeks of December were quite a concern that I might not be well enough to travel. Or well enough to get out of bed for Christmas. I can’t begin to explain how angry I would have been with chemo if that had been the case. Fortunately, all was well and I set off to my parents’ home in west Wales in mid December. Normally I am very happy to set off on a six hour journey by myself, but this time I was a bit worried about what would happen if my energy fell off a cliff half way there. My lovely Dad agreed to get the train and we met half way so he could chauffeur me home for the last leg.

Another little notch of my independence and freedom taken, thanks to stage 4 cancer. Despite that, I was so pleased and grateful to finally make it to Wales and let the celebrations begin. And so they did. Where they live is a beautiful, historic and tiny village but full of life and community and wonderful people. We had a good few Christmas parties and celebrations that were just so joyful and fun. I spoke to a number of people in those weeks running up to Christmas that were so very kind about what they read here. I am truly flattered that anybody bothers to read it at all, but when I am told that people really value my writing, then I am somewhat taken aback. It’s very nice to hear and I am humbled to know that you are here with me. Over the last few weeks this blog went over 15,000 views. Thank you.

Of course, the problem with parties and socialising, is it is not practical to ask people to bathe in anti-bacterial before they attend. And so, as sure as night follows day, three days before Christmas I started sneezing. Since the transfusion I had tried everything I know to boost my immunity: berocca, echinacea, actimel, regular dosings in anti-bacterial, but it wasn’t enough. Of course normally a Christmas cold would not be anything to worry about, but would at worst be massively irritating. When your body is chemo wrecked, a cold can fast become a serious battle. I took my temperature on Christmas Eve Eve and sure enough, it was too high. I called the cancer centre to check I was OK to take Lemsip (?!) and they told me to go straight to A&E. It felt like a massive over-reaction at the time but, being the good patient I am, off we went. I won’t bore you with every detail of the 6 hours I spent at Withybush Hospital, but I will tell you I was ultimately very impressed with the care and attention I received there. In summary; I had a blood test and the Doctor then told me the medical team had had a meeting and decided I probably had the beginnings of an infection and that I should be admitted. At that point I shed a few tears for sympathy and very quickly had to come up with a negotiation strategy. There was absolutely no way, that after everything I had been through to get me in to a fit state for Christmas, that I was going to spend it in a hospital. Absolutely not. I went in to a high level of detail with the Doctor about why they thought I had an infection, and, once again, it came down to my crappy white blood cells. Fortunately my detail freakery allowed me to demonstrate that whilst they were rubbish, they were not as rubbish as they had been. Every time I have a blood test, I always ask for a full print out and I carry the last few with me. Taking those with me to hospital that morning was the only reason I was not put on a ward. After more begging, and crying, they agreed to let me have a chest x-ray, urine test and a few more bits and pieces to check they weren’t missing anything major. Everything was clear, and so with a double dose of penicillin for a week, I was sent on my way under strict instructions to call an ambulance if I deteriorated. All a bit stressful.

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You may remember I refused IV chemo last summer after two regimes of oral chemo failed to halt the spread. My reasons were not wanting to be made more ill, not wanting to risk infections, not wanting to spend too much time in hospitals and above all, not wanting to spend time being paranoid and full of anxiety about what my body is doing. Well guess what, sometimes being right is shit.

Finally, after all the planning, prepping and waiting, Christmas Eve arrived.  There was really only one thing for it and that was to throw myself in to it and celebrate in true GozFam style. And so we did.  On Christmas Eve my sister and I created our GozGirl Christmas video. We had less time this year so kept it simple. About a month earlier I had sent her a link to KT Tunstall’s Mele Kalikimaka expecting her to tell me it was a very bad idea, but she agreed and we went for it. It’s always such a hilarious few hours and a highlight of our time together.  Christmas dawned and as always the day was full of love, laughter, prosecco and on this occasion a trip to the beach in the morning in the sunshine for a paddle. Yes really! I’m not sure if paddling in a very cold Irish sea on the Welsh coast is a good cure for rubbish white cells, cancer, festive lurgy and a chemo blasted body, but I don’t actually care and I didn’t let it stop me. Christmas day with GozFam was just ruddy marvellous.  I would say perfect, but MaGoz burnt the pigs in blankets for probably about the 10th year in a row.

In fairness I probably overdid it and come Boxing Day it was quite a struggle to get out of bed, so I didn’t.  I did eventually, but it was very clear that my energy banks were empty and I had used all the spoons.  I rested as much as I could, and there’s really nothing to complain about being wrapped in a blanket, drinking tea and reading your gifted books.

My sister had kindly agreed to help me drive back home as I had a chemo session planned on New Year’s Eve. The night before we were due to leave a neighbour called to ask if we had lost a sheep.  We hadn’t as it happened, but a ewe had got lost and was stranded in the river.  So on our last night in Wales, Emma found herself in a river trying to push the rear end of a sheep onto the bank whilst the rest of us pulled.  I really think you had to be there to appreciate this story in full, but suffice to say, the sheep appeared to really want to go back in the river, and it took us an hour of pushing and pulling to get her back to safety in a field.  By which time, it was dark, everybody was exhausted, wet through and covered in bruises. We named the sheep Esther after Esther Williams and she is currently residing in luxury in the paddock in front of my parents’ house.  It was an exciting end to a fabulous Christmas.

This is a good chance to thank all the amazingly generous people who sent flowers, gifts, beer, wine etc, etc to the family. Every delivery came as a really lovely surprise and you are all wonderful. Your support is much appreciated.

My sixth chemo was scheduled for New Years Eve – terrible I know, but I did it so as to have as much time in Wales as possible.  My sister and I packed up a very full car load and headed home.  We set off to the cancer centre and as always, bloods were taken and counts done. Quite quickly it became apparent that things were not looking great. White bloods cells were low and haemoglobin and platelets were boarder line.  The Prof was consulted and he determined I was not fit for treatment.  Thanks to the Christmas lurgy, it seemed there was a lingering infection and I hadn’t recovered enough to go ahead.  I probably should have been happy that I got another week off chemo.  I really wasn’t though.  It’s a scary place to be when your body is not doing what it is supposed to do. It’s annoying when plans are made and they fall through – everything in my life is planned around treatment so when the schedule breaks, there are knock on effects.  My sister didn’t have to give up her New Year, but she did and that proved to be unnecessary.  Anyway, we know what happens to the best laid plans.

I was prescribed my third set of anti-biotics of the month, and we set off for home. Slowly it dawned on me that I had expected to spend NYE in bed trying not to puke, and I realised that a silver lining was appearing.  We bought steak and prosecco on the way home and had a really fun evening.  We can’t even remember the last time we spent a New Years together. So there’s another small mercy to be grateful for.

I will go back to the cancer centre next week for bloods and hopefully, get chemo number six done.  Mid January is MRI time again and after that I will meet with The Prof to see how everything is going and plan next steps.  I am concerned that despite a 5 week gap (where it should be 3), a blood transfusion and three different types of anti-biotics chemo is really taking it’s toll. The effort of getting from chemo five to six has been a real test.  I am reminded of a discussion The Prof and I had a few months ago when he told me that there are only two reasons to put patients through chemo: it has to work and the patient has to be able to tolerate it. We will await The Prof’s verdict. 

Apart from all of that, I am utterly thrilled to have made it to a new decade.  2020 seemed a really long way off not very long ago and here we all  are.  Well done us.

I will start the year as I mean to go on.  Determined to do everything I can to protect my well being and continue to put up the fight.  I will not lose sight of the fact that this will be the fourth year of living with a life limiting illness.  It’s quite tiring as a concept, so I will look after myself and give myself a break every now and then. I may even stop trying to control and plan everything.  It will require a re-wiring of my DNA but it will hopefully make it easier to live in the now.

I have recently been watching Heartstrings on Netflix.  All hail Dolly Parton, if you please. At the beginning of one episode, she says that hope and love are the two greatest powers.  Perhaps you will join me in channelling Dolly this year.

I wish you and yours a very Happy New Year and a healthy, happy and decadent decade.  May it be filled with hope and love.

Big Love, AG xx

 

I will always love you / Dolly Parton

If I should stay
I would only be in your way
So I’ll go, but I know
I’ll think of you each step of the way
And I will always love you
I will always love you
Bitter-sweet memories
That’s all I am taking with me
Good-bye, please don’t cry
We both know that I’m not
What you need
I will always love you
I will always love you

I hope life, treats you kind
And I hope that you have all
That you ever dreamed of
And I wish you joy
And happiness
But above all of this
I wish you love
And I will always love you
I will always love you
I will always love you