Piia Pauliina
  • scissors
    October 19th, 2010

    I had my usual clinic appointment yesterday. I could not stop feeling anxious and nervous all morning. I had been putting off thinking about the biopsy results and somehow had been convincing myself that it did not matter what the result was as I would be getting radiotherapy regardless. But now that I was about to find out the result, I was worried.

    It was Dr Matutes’ registrar and my nurse Lucy who greeted me in the consultation room. I could see that the biopsy report was on the table, and could not focus on what the registrar was asking. I was thinking, is he mad, why does he want to chitchat when the result of the biopsy was right in front of him! Finally he told me. It was bad news. There it was, written in black and white on the report: ‘diffuse large B-cell lymphoma, consistent with mediastinal large B-cell lymphoma’.

    Honestly, what an unrelenting little bugger this cancer of mine is! Three lots of chemo, stem cell transplant with high dose chemo, and it still likes to grow! OK, it is not big, and it is only in one area, which are all positive things, but still!

    Like I already knew, the plan is not to give chemo at this stage, but to give me a course of radiotherapy instead. And, I would like to point out, mostly to remind my little old self that the aim of the radiation treatment is to fully get rid of this lymphoma. If this treatment cures those ‘faulty’ cells, then I will not need further treatment. Fingers and toes crossed, and positive thoughts to the universe, please.

    My team had organised my consultation with the radiotherapy team at Royal Marsden that same afternoon. I had printed out some questions I wanted to ask them. These are some questions recommended by someone at the Lymphoma Association that one should consider asking when faced with radiation treatment:

    “1) I would make sure that they were giving me a modern, more focused and targeted form such as involved field radiation (IFRT), not mantle radiation. That reduces risk of secondary cancers that can be caused by radiation.

    2) I would show my oncologist the recent German Hodgkin’s Group study that demonstrates that a lower, less harmful radiation dose of 30 Gy, not higher, has just as beneficial results with far less risk. The study results showed that ABVD + 30 Gy of rads is as effective as BEACOPP + 20 Gy for achieving a 94% survival rate.

    3) I would also discuss the recent BBC News article about the type of radiation begin given to most Britons (only 7% get the new type!), express concern and insist on the more modern form even if it meant your oncologist had to lobby to get approval for you to travel to another hospital to be treated.”

    Apparently, the radiation I will receive has a tiny risk of secondary cancer, and the dose is about 30 Gy, although sometimes they use higher if they think it is more appropriate. I will be screened for breast cancer regularly for years post this treatment. The Royal Marsden is the best cancer hospital in the UK, maybe in the whole Europe, I am sure they know what they are doing.

    After my consultation, I was sent to be ‘mapped’ for the radiotherapy. It meant, I had to lie down on a CT-machine, very still, my arms above my head whilst they marked three areas of my chest, right in the middle and just under my arm bits, both sides. After I had been through the machine (donut) a few times, the mapping was over, and the final step was to give me my ‘tattoos’. I had heard and read about this, but did not think I was going to get mine so soon! In reality, it was unexciting. The three dots that I have are so tiny you would not notice them unless I pointed them out to you. The tattoos are there to help to pinpoint where exactly the radiation should be directed. And the whole idea of this mapping is to give the team all the info they need in order to plan the treatment as accurately as possible. This can take some time, so my first actual radiotherapy session is next week Wednesday.

    I was booked for all the sessions in one go. I will go every weekday, Monday to Friday at about the same time for 3-4 weeks. They also give you your own treatment machine, and a number for the team looking after that machine. My machine is called Carlyle. I like that name.

    I went to see my GP to kindly ask him to refer me to the Royal London Hospital for Integrated Medicine (formally known as the Royal London Homeopathic Hospital) last week. This is what they say in their website: “The hospital offers an innovative, patient-cantered service integrating the best of conventional and complementary treatments for a wide range of conditions. All clinics are led by consultants, doctors and other registered healthcare professionals who have received additional training in complementary medicine.” Their clinical services include cancer care, so I am hoping I will be accepted as a patient there and will receive complimentary care to support my current treatment at the Royal Marsden. I will keep you posted. My GP said that they are quite reluctant to refer just anybody there, but he had no problem sending my referral.

    As my blood counts were good yesterday, I do not need to see my haematology team for 4 weeks!

  • scissors
    October 9th, 2010

    It is Saturday morning and I am in my own bed! I was discharged from the Royal Marsden yesterday. What a relief. I do not sleep well in hospitals, and managed to get a decent night of sleep at home last night.

    Two days in Penny Brohn did exactly what I hoped it would do. I managed to get back into mediation, and quiet my mind a little and reconnect with myself again. I was inspired by food, and I am going to eat more vegetables from now on. As I was looked after and cooked for, it felt like a proper break from everything, and allowed me to fully relax for two days. My mind and spirit were uplifted by the lovely walks in the picturesque countryside and by talking to brave and kind people who are going through their cancer journeys. I even saw a 500-year old tree. 500 years! That is a long time. I had to give this old tree a little hug. I love the nature, and really miss open plan places and proper greenery in London. I felt so sad as I arrived in Paddington after my two days in the Penny Brohn haven. I had to go straight into a fully crowded tube. I felt like I could not breath. I do sometimes wonder what an earth am I doing here!?

    As I got home, I had a little parcel waiting for me. My dear friend, and an old (original) Dream Housemate had sent me bunch of pink roses! She had sent them on Wednesday, so the poor roses were very thirsty by the time I got home on Thursday evening. They are still alive though!

    I woke up feeling horribly grumpy yesterday morning. It was a combination of hardly any sleep and not being allowed to drink or eat before this biopsy I was going for. I had to leave my house before 7am. London was covered in thick fog. It conveniently echoed the state of my mind.

    The CT-guided biopsy procedure went something like this. I was be lying on the slide that goes in and out of the ‘donut’ of the CT machine. They, the radiologist and a consultant ‘mapped’ the exact area where the biopsy needle needed to go in by the several CT images. Once they were happy where the area was, they then marked it with some special pen. I was surrounded by several people, although I did not see any of them as I was lying facing the CT device and had my arms uncomfortably above my head. My job was to lie still and to take deep breaths in and hold it as long I was told to (this was not for very long, maybe a couple of seconds). The important thing was for me to take the exact same deep breath each time, as when you breath in the rib cage moves. If my breath was different, the site of the biopsy would have changed. Before they began the actual procedure, the area of the chest was numbed by local anaesthetics. I was awake and alert throughout process. I was not painful, just very uncomfortable.

    Afterwards, I was moved to lie flat on a bed. As I was waiting in the corridor outside the CT scan room for the porters to take me into the ward to recover, I saw the doctor that had been looking after me in Sutton when I was having my stem cell transplant. She asked what I was doing in the hospital. I explained her my PET scan results and the need for the biopsy. Something about the way she looked at me, maybe the sadness in her eyes, made me really upset. I could feel how upset we both were that the transplant had not worked like we had hope to. She was there every step of the way during the transplant and saw exactly what I went through. She knew. The porters came and our conversation was cut short. My doctor went on her way and I was pushed in my bed towards the ward. I could not stop crying all the way into the ward.

    Two hours post the biopsy they took a chest X-ray to check that I had not developed a collapsed lung. Apparently, there is a very small, about 10% risk of puncturing the lung during this process. The lovely (young) doctor that had mostly done the procedure came to see me personally to tell me the outcome of the X-ray. My lungs were fine, and I should be able to go home if I was still well in a couple of hours. All I could think, you have really lovely eyes… He was a very lovely doctor….

    After the X-ray, I was finally allowed to eat! Boy, I was hungry. Minna came to visit me later in the afternoon and brought me drinks and a salad from Prêt a Manger. We chatted, I ate and before I knew, I was told I could go home. I was at home by 8.30pm. I had a lovely drive to home in a taxi through London. The south embankment by Thames was all lit with special lights and looked almost magical.

    I am happy to be at home, in my Dream House. And the weather forecast for this weekend is sunshine and 20 degrees of Celsius. In October?! I am going to see the lovely Steph tonight. She is hosting a little flat warming soiree at her, well not so new pad anymore. London feels good again. And so do I.

    The view I had as went for a walk in the countryside near Penny Brohn on Wednesday afternoon.

    The view from Penny Brohn gardens on Thursday morning.

    The roses that Steph sent me.

  • scissors
    October 4th, 2010

    My tooth was pulled out on Friday, and I survived! It was not particularly a pleasant experience, however the dentist and the nurse were ever so lovely and caring; I felt I was in the good hands. I saw the tooth after it had been extracted, the roots were in a bad state, and definitely needed to be out! My face is a little bruised now, but that will go away, eventually. I need a false tooth/implant to replace it, as the tooth above it has nothing to bite to, which means it can start ‘moving’. Also, I need a tooth so that I can chew food on that side of the mouth. I must start a ‘new tooth fund’ programme. My birthday/Christmas present wish for this year is a new tooth!

    I went to see my medical team today. My blood counts have improved, white blood cell count was 4.1, within normal range; and I am not so neutropenic anymore! It shows that if I rest a little the body has a better chance of recovering. They will check the blood counts again on Friday when I go to the hospital for my biopsy.

    The consultant, Dr Matutes went through my PET scan results. There is some underlying cancer activity brewing in the area of my original cancer site, even though Lucy said that the area was clear. The new area of activity is in my pleural cavity of my left lung, and they do not know if that is cancer related or not. The biopsy will tell that. I am being referred to see the radiotherapy consultant who will plan my radiotherapy treatment. The planning takes about a week and the actual treatment about three weeks. I will have another PET scan after two months of the radiotherapy treatment.

    If that scan still shows any cancer activity, I may need to go through another stem cell transplant next year, but with stem cells from a donor this time.

    As I was sitting in the consultation room with Dr Matutes and Lucy, it was very clear to me the game is not over, yet. Not by any means. Since the stem cell transplant, I had been hoping the cancer was gone, and I could start planning the rest of my life. But, it is not gone, and I need to change my mindset; I need to live in the present moment, not think that my life will start once the cancer is cured.

    The cancer is under control, which is a very good thing. I do not have to have chemo, which is also great for now. Yes, I will have to have some radiotherapy, but apart from fatigue, it has not got really any nasty side effects that I know of.

    I actually left the hospital feeling a little emotional, but mostly positive. I will beat this; it is just going to take a little longer than I hoped.

    I asked Dr Matutes what was the likelihood of me being able to go to Finland for Christmas. We had a little chat about it, and in the end she said go ahead and book the flights. I am going to Finland for two weeks in December! Finally!!

  • scissors
    October 1st, 2010

    I am at home waiting for my transport to the Royal Marsden to have my not so good old tooth to be pulled out. I am wearing my new dress from Suzie, which I am calling my ‘good luck in the dentist’ dress! Boy, I do not like going to the dentist. If I was 7 years old now, I would be holding on to my chair and refuse to go in the car, and scream if I had to sit on that dentist chair. Shame I am not 7 years old.

    I had a call from Lucy to let me know that my biopsy is going to happen on Friday next week. This means I can go to the Penny Brohn on Tuesday! Finally some good news. I think a couple of days there will do me world of good, and set me on the right track again. I need to reflect what has been happening lately and digest the news.