The Frank Diary of Anne

I am into my fourth cycle of chemotherapy now, and have felt ok since the last ‘infusion’ which was last Wednesday. The new anti sickness drugs are working well and I have only had a few queasy moments! Still have to be in bed by 8.30 each night, but apart from that, no major problems. 

Strangely, I noticed a couple of days after chemo that my hair is growing back. This is quite odd as I didnt think that this would happen until a while after I have finished my treatment so I posted a question about it on this cancer forum I am on, and a few people said that it is not uncommon for hair to grow back before the end of treatment. I still look bald, but there is definately growth there! I wondered if it was just because my last chemo was two weeks late and my body thought that it had finished treatment. So it may fall out again, but hopefully not. 

Feeling pretty happy most of the time at the moment, still avoiding people and public places, which means a lot of time at home, but I am quite happy reading, playing on the computer and watching TV etc. Have bought myself a “yoga for beginners” dvd because since losing my hair I felt a bit self conscious about going to classes so I will be having a go at that this week. 

Now that the end is in sight with this treatment (I worked out that if all goes to plan I only have five and a half weeks left until end of chemotherapy), I feel really happy and that there are lots of things to look forward to but also very worried sometimes that the cancer will come back. I get a lot of information and support from my cancer forum, and talk to some interesting people on there, but I have also seen lots of people who have been well for a while and then the damn thing comes back. Not only Non-Hodgkins, but all types of cancers.  People talk of being depressed and scared even though they are in remission and I can understand this. The most frightening thing is that it will come back, but as Chris always tells me, you shouldn’t worry about something that may never happen. So hopefully, when all this is over, I won’t spend time worrying about it. You see a lot of people a heck of a lot worse off than yourself when you are in hospital and having treatment, and sometimes I feel that really I have got off lightly. 

At the moment, I am feeling ok about things, but other than all the physical problems that you have when you have this horrible disease, it is sometimes easy to underestimate the emotional side of it too. I have learnt that not only do you have to summon as much physical strength as you can, you also have to find emotional strength, which is much harder to do sometimes.

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Well, chemotherapy number four is out of the way now. It was ok, apart from more problems with the veins in my hands. It was very painful when the nurse tried to put some of the drugs in, so much so that they had to take the canular out of the back of my hand and put it in further up my arm. Having large amounts of drugs put straight into your veins ruins them, which is what has happened to mine. I think the final straw was the huge amount of ultra strong antibiotics that I had put in  when I was in hospital.  The nurse tells me that veins take quite a while to heal, so I hope they can just use the ones higher up my arm for the last couple of treatments. Poor veins!! 

I felt very tired and sleepy afterwards and so me and Dad (who came to the hospital with me) came home and had a cup of tea. I just rested on the sofa dozing for the rest of the day. Felt a bit sick but had one of my tablets and was ok again. They have put me on a new anti sickness drug which I had straight into my vein in hospital. It is quite a good one apparently and lasts three days. I feel much better today than I have done following previous sessions. 

However, (there is always a complication!) when I went to get ready for bed last night I noticed that my face, fingers and knees had swelled up quite a lot, and my knees were hurting, so I rang the hospital who wanted me to come in to check me over. We were at the hospital until 11pm and I was so tired I just lay across some chairs and went to sleep a couple of times. I saw the doctor, who spoke to the on call haemotology doctor on the phone, and they decided that it was water retention as a result of the steroids that I have to take as part of the chemotherapy. I was not showing any signs of infection and so they were not too worried. They said that it would go down in a few days. They said that I could stay the night at the hospital if I wanted too, but I have had enough of that place! Also, higher risk of infection staying there, so I came home and went straight to bed. Still a bit swollen today, but not as bad. 

Only two more sessions to go!

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Today I met with my consultant at the hospital. My blood is looking good, and I am now booked in for my fourth chemotherapy next Wednesday. I told her that I feel better than I have felt for quite a while, and wondered if the PCP (pneumonia) had been brewing for some time. She said that that was quite possible. I said that I had been feeling quite sick taking 16 antibiotic tablets a day but this sickness feeling seemed to have gone when I changed to two antibiotics a day, and she said that these particular antibiotics are very strong and quite an agressive drug and they do make people feel quite ill. 

I asked to have a look at the CT scan that I had done when I was in hospital. I saw the two scans together, the one before I started the chemotherapy treatment and the one I had done recently, and the difference is amazing. The tumour was MASSIVE! It went from the top of my chest right down the middle to my heart. On the recent scan picture, you can hardly see anything, it has almost completely disappeared. The consultant said that there is a small amount left. When I have finished all my treatment, they will send me for a PET scan, which detects whether there is any of the tumour left at all. I think this is a bit more precise than the CT scan. 

When I was in hospital, I met a lady on the same ward as me who also had Non Hodgkins, and she said that she had had it previously, and she had recovered, and a few months later, it came back again. I knew that it was possible that it could come back after being cured, but after meeting that lady, it has really been bothering me, so I asked the consultant what the chances are of it happening. She said that there are a lot more options open to younger people, because older people cant physically take the amount of drugs that younger people can and so more agressive drugs can be used on younger people, or in the consultants words ” we can hammer young people with the drugs more”. She said that with older people, you have to allow them some quality of life, which they wouldnt have if you gave them massive amounts of aggressive drugs that their bodies could not handle. This is why, even though the tumour has nearly gone, I am still going to have another three lots of chemotherapy, to make sure it is “hammered” once and for all.  I really dont want to have to go through all this again! 

I have been feeling much happier lately, the sun shining helps a lot as it makes me look forward to the summer, when I am better and can enjoy life properly again!

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Its so nice to be back at home after the spell in hospital. Chris has been looking after me well. I also came back to work yesterday – felt like I had not been here for ages! I am feeling much better now. I am meeting with my consultant on Thursday to see about the next chemotherapy session, which I am hoping will be next week.

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They let me out of hospital on Thursday afternoon at last. There was a lot of waiting around before I could go as they lost the prescription for my pills, but finally got home about 5pm. It felt really strange being at home after two and a half weeks in hospital and I felt worried that I would get ill again. I felt sick and couldnt eat any dinner and then finally was sick. I felt much better the next day though after a proper night’s sleep and even managed to eat breakfast, lunch and a whole plate of dinner cooked by Chris. He worked from home on Friday so that I would not be on my own. Today I feel fine, still have nausea sometimes as a result of the antibiotics that I am taking (16 tablets a day) but other than that, I think I am on the mend!

Cycle 3

I managed to get a whole night of sleep last night for the first time since I have been here. As I am not on the drip anymore, they didnt need to disturb me to change it etc and so I managed to sleep the whole night which was nice!

For breakfast I got given one weetabix, no milk, just a weetabix in a bowl. Luckily, Mum and Dad had brought me some milk yesterday and put it in the little fridge in my room. They also brought me additional weetabix and bananas so I was able to have a decent breakfast. Thank goodness for parents!! They come and see me every day and Mum brings me new pyjamas and hats and Dad brings me bananas and fruit juice.

I saw one of the doctors this morning and she said they are going to see about me going home, but it is really up to my consultant who I am seeing this afternoon. It is the consultant’s ward round on Thursdays and she comes round with her team of about five other doctors and they all cram into my little room and talk about me.  So fingers crossed I won’t have to stay here too much longer…….

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I saw the Dr yesterday and today and they confirmed that I do have PCP which is a type of pneumonia. I have been on the right drugs to treat it for 7 days now, and today they are going to switch me to tablets. If I am ok on those,  I can go home soon!

I cant wait to go home to my own bed, and a proper shower and of course Chris, who tells me how quiet the house is without me there. He may complain about the noise when I am there, but I think secretly he misses it ; )

I am going to be extra careful not to pick up any more infections for the rest of my chemotherapy, I am not going to public places where lots of bugs are floating around and not going to go anywhere at all really. I cant take the risk of this happening again, its too much of a nightmare and dangerous for me to get this ill. Its not for long now and it will be worth it to get through the rest of the treatment without any problems. So, if I appear anti social, I am not being, just cautious!!

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Well, two weeks on and I am still in hospital, it feels like ages since I have been at home. The food is pretty grim but I have no appetite anyway which probably makes it seem worse than it really is. The nurses are very nice, I know all their names now and most of their life stories. I spend the nights falling asleep, only to be woken up by someone wanting to stick a needle in me or take my blood pressure. I am on massive doses of  antibiotics which are given through a drip into my hand. My veins are very small so they tell me, so often this is painful and my veins are irritated by the drugs. I have to have anti sickness tablets every day. One blessing is that I am in a room on my own. I have a TV and now my laptop and its very quiet most of the time.

I had to have a rather unpleasant procedure called a bronchoscopy on Thursday where they take a sample of some tissue or fluid in the lung. Luckily I was sedated and I dont actually remember it. The sample has gone off to Brighton to be tested and we are waiting for the results at the moment. Depending on what comes back depends on when  I will be allowed to go home and how long I have to stay on the antibiotics.

I also had a CT scan last week which showed that I have had a good response to the chemotherapy and the tumour has shrunk a lot, there is not much left of it now!

Cycle 3

I am still in hospital. The doctors now think I have PCP which is a type of pneumonia common in people with supressed immune systems. That is what they are treating me for anyway. I had to have a bronchoscopy yesterday to have a sample of lung tissue taken. The results are not likely to be here until monday though.

Cycle 3