The day of surgery loomed close. I read a lot and rested a lot, I threw out all my expensive skin care products that were full of chemicals I didn’t need, this spleen seemed to be getting larger and I was worried it was going to burst. If only I had known then what it looked like I think I would’ve still cycled everyday. I had asked Dr Archer to take a photo of this spleen for me during the suregery. There was so much to think about – so much worrying to do – so much time to fill and I just wanted to concentrate on getting my blood matched and my butt on that table so I could have this damn thing removed. I resented it for growing. Everything seemed too hard to do. Everything felt heavy every thought was deep. It wasn’t a good time.
I went on the Thursday before to have my bloods done. Back to the Mount I went. I was scared of driving and Scared to the absolute death they wouldn’t be able to cross match. I sat waiting and a young girl called me in. Are we up to 10/11 bloods now? She sat me down on the chair and flumped herself down on one next to me “I feel like shit – look at my eyes they are hanging out of my head – don’t know what’s wrong with me – they wont stop streaming” all the while she is taking my blood. Im asking her “Is it hay fever, are they itchy?” “Don’t know but look at them how am I supposed to look at patients with these damn red things?” She made me laugh. I wished I’d been with her the night before, from the story she was telling me it seemed like she’d had a heap of fun. To be young to be free to not have this disease. How wonderful would that be. The good thing for me, is that I was out of there without even noticing the blood test, and she had also reassured me that my blood would be fine “Go home – stop worrying” Easy to say. She walked out to the pharmacy to get something to fix her eyes and we parted ways. Me smiling and laughing and her. I went to get my hair done. I still didn’t believe I’d be having this surgery till I knew the bloods were matched. Even though I was booked in and everything was in place – I didn’t want to get too excited. Excited? Wrong word – what is the word I don’t know. Confident perhaps. I didn’t want to get too confident that this would go ahead till I was in the hospital. I had a number to ring the blood bank on Saturday to make sure my blood was matched. Yes it was. YES IT WAS !!! ( I cant explain the exhileration I felt here – looking back now I can see I was over worrying but it is just something that happens and if you could take a good look at yourself and give yourself a good slap then perhaps the worry wouldn’t be so bad)
I was too scared to tell any one incase I jinxed myself. Monday came we got to hospital. I sent a few text and I was in that operating room before I could say anything. I cried to theatre. I didn’t have a pre med – so I climbed onto the table. The anaethatist had wanted me to have a pre med – think it makes their life a bit easier and calms the patient – but it took ages to work last time and I only had half an hour from pre med to surgery. So I climbed onto the theatre bed. Noticed all the many many instruments proudly displayed in their green linen lined cubicles. The anaethatist said “What do you do for a crust?” “I’m a real estate agent I said?” the Nurse piped up “ A real estate agent?””Yes” I said “but that doesn’t mean you can’t look after me properly while im asleep” Last thing I heard was her giggle. I woke up with a mask, a catheter, a wonderful feelling of drugs and my lovely family smiling. Hooray I’ve lived. Hooray I’ve come through. The male nurse was great. He kept laughing at me with my questions and Leana was reading all about my morphine pump telling me when I could pump next. Bernie had a straw cup to feed me water and all I wanted was to go home. Tim Elle and Ben came in at night. Leana stayed most of the day from memory, as did Bernie. Those first few days were a blurr, but I remember Dr Archer coming to see me later in the night with the aneathatist to make sure I was ok. He also came the next morning. We have you on “Liquids for a few days – gives things time to settle down”. “Whats all this pain I have in my tummy?” “Well, we had to move things around takes time for them to settle – you’ll be ok soon.” I got brave to look at my dressing a large plastic soft dressing stretched across my wound. I noticed it was made to look like skin. It had pore like things in it. Weird. Anyhow it was dark for my skin tone I noticed that.
Liquids, I can tell you, is not your favourite meal. It does not fill you up. When I was cycling I ate good meals. Now I was hungry. Dr Archer came in the next morning – another day of surgery for him – “How are you feeling?” “Hungry” he then moved the food level up to “nourishing liquids” nourishing liquids – stewed apple, yoghurt juice? Oh man I’m hungry. My stomach was growling. “Im hungry “ – the next day – “ I have pain. My stomachs growling” “Ok you can eat light meals now – the pain is wind it will go.” He came the next day and I had had a shower my catheter was gone, but I had my friendly drain. That was my new best friend. I could walk i could sit I could get out of bed my morphine pump was gone but man this wind pain was a whole new experience. “Why are my ribs so sore?” “Well we had to use the retracter to move them out of the way. They will be sore for a few weeks till they settle back down and heal”. The retractor to move my ribs OUT OF THE WAY? My friend said “They really had you open didn’t they? ” Dr Crawford came to see me – couldn’t believe how well I looked 4 days after surgery and said “Come see me at the end of June we will have the full biopsy back then.”
I had so many flowers, chocolates, cards etc I felt really spoilt. Bernie bought me the prettiest bunch of 16 roses as he said that’s when we met. When I was 16. I cried. I was so full of emotion it is hard to explain.
It has taken me 6 weeks to get my strength back. If you ever have to have any open surgery expect to sit still for 4 weeks at least. Because I think I’m Super Woman, I always tend to try and do to much. Trust in your Doctors. Doctor Archer told me 6 – 8 weeks and he was right. The pain in my ribs did go thank god – most painful – my tummy that had been moved around did settle down and after 4 weeks I could eat normally again. We had kept wanting to go out to dinner just to change the scenery but I couldn’t eat, it would’ve been a waste of money. I’ve lost 9 kg. I feel absolutely tremendous. I feel full of energy, I feel like a new person. I started driving after 4 weeks and this week I’ve done my first hills cycle I feel amazing. Everyone tells me you have never looked so well. My eyes are bright my skin is good and I’m starting to smile again. I did get a photo of my spleen a most awful looking thing. 2.2 kg same shape as a 2kg bag of sugar creamy and bloody hard and full. Could’ve ridden there was no way in hell that was rupturing.
I’ve been back to see my gorgeous Dr Crawford, waiting yet another month as they were biopsing my large spleen, and my diagnosis is pretty much the same. He said there is nothing “nasty” in there and you have Lo Grade Spleenic B Cell Non Hodgkins Lymphoma”. I can now say that without crying. The new part is the “Spleen” part. Dr Crawford explained that this disease is very slow growing and mostly affects older people. Generally they don’t even realise they have the disease and something else usually ends up taking their life. Very few of them need treatment.
So for me this is all good. Except I’m youngish and will need some treatment. I feel now I can talk to people because I know what I’m dealing with. Dr Crawford suggested some mabthera treatment and – if I wanted – chemotherapy. I asked him what would he do in my instance. If it was his family member what woud he do. He said “ if it was my dear family member I would suggest mabthera”, so this is what we decided. I was booked to have the treatment the following Thursday. 2 days after my visit with my Dr. We arrived at the hospital at 4pm as required. Bernie and Me, and Leana came along soon after. Next time I will take bed socks and my own cup and some green tea and a little eski of some good healthy food. Spelt bread avocado and tomato cut up. I got hungry during the night and all that was there to eat was sweet biscuits. Didn’t want to feed these cancer cells or give them energy while my precious life saver worked – I wanted to destroy them. The Nurses booked me first into a shared room. I wasn’t keen for that. I wasn’t sure how this would affect me and I needed to be able to read all night if I wanted to . Not disturb another patient. Anyhow after I’d settled in on the bed the Nurse came and said “don’t get comfortable we’ve got a room for you a single one we just needed to clean if after the last patient”. So off I went to my single room. Room 222. All the rooms around me were full of people having chemotherapy or mabthera or both. Its a weird feeling. Here I was belonging. Another great view over the river and Mounts Bay Road.
I like these rooms as there is a verandah and it reminds me of sitting at home on my verandah in the mornings – when I take my tea out there. They came and took my blood pressure and placed a canulla in the back of my hand – I thought that would hurt more than it did – and then started a saline drip. The “Mabthera” arrived and honestly it could have been another saline drip except for the writing on the side “Rituximab” – so here was my saviour. All this time wondering what it would be like and there it was. Where was the orchestra announcing its arrival – No secret container nothing. The Nurse placed the Litre bag up on the drip stand and it started its silent journey into my veins, seeking out these lymphoma cells in my body. Dr Crawford popped in to say hello and make sure I was ok, and left us to it. I had heaps of questions but my mind was busy expecting …. What would I feel? Would it be hot or “Zap” “Kabang” “Boom”? Nope nothing. Just silently – like this disease has silently crept up on me.
Lymphoma has many many different types under the name of Lymphoma there is Hodgkins, Non Hodkins and under Non Hodgkins there is an umbrella of all different types. MALT, Cutaneous, T CeLL, B Cell, low grade, medium grade, aggressive. I can not imagine how clever the patholoigists are at diagnosing each and every one, and spotting the difference. As each body, is so different and responds so differently to these diseases. Take me, all I really had was a large spleen that I found by accident. I was a bit clammy during the day but I’d really put that down to the hot summer Perth had just had and the fact that I’m 48. I know the dreaded hot flushes must’ve been coming soon. The only other symptom I now know that I had was a type of “Smokers cough”. That’s all I can explain it as. It was a deep throaty cough – another symptom. No dramatic weight loss and no extreme tiredness. My blood count showed a low number of white blood cells and my red cells were normal. I’d been cycling 140 – 180 kpw, So actually anything could’ve been going on and I would not have known. I did notice in the last few rides I was starting to drop off the back – couldn’t quite keep up, as well I was bruising ever so easily. That’s because I had very low platlets. So my silent saviour continued to feed into my canulla. Bernie stayed till 10 Leana left at about 7.30ish and I spent the whole night worrying. What if this didn’t work. What if the government funding cut me off – even though I pay my private insurance. What if they said well thats it your treatments done no more for you Missy! I felt so scared but so safe in the hospital. The Nurses are lovely but I will say you need to listen to your Doctor. The drip finished its job by around 10.30 and then it was removed. Canulla has to stay in till the morning. Apparently with mabthera there is a chance of a reaction and they may need the canulla to put other drugs into. Reactions such as wheezing, heart paplatations, fevers, chills etc. You see the drug stimulates your immune response so you can have an analeptic shock. Dr Crawford popped his head into my room at 8am. “You did well,” he said “No reaction and as 95% of the disease was removed with your spleen you hardly have any disease left in your body.” I asked him if they would ever cut off the treatment and he said no so I felt better. I’m still not sure how this drug works and I wasn’t sure if it had killed all the lymphoma cells and then they grow again or if it kills most on the first infusion. I’ve still got to find this out, but I do know that on the first infusion the half life of the drug is 60 hours and it becomes longer each time. The dosage is worked out on body mass weight by height. I tell you when I woke up I was scared to Wee in case I weed this precious liquid out!! I wanted to hold it in, re cycle it and keep it doing its job! Dr Crawford explained I will need 7 more of these and each time I have to stay in over night. Small price to pay. Then we will rescan as I have no physical sign of the disease – no lymph nodes to check the progress of this drug so I will have to be rescanned in February or March 2012. My Dr is very optimistic. Lets hope and trust that he is right ☺