The Time Between Chemo

• Thursday I had my first introduction to sickness, woke up at 5am feeling nauseous and swiftly put my travel bands on, managed to get back to sleep for a few hours before I woke up again, this time it was nothing ginger nuts couldn't cure (a Jill tip!). Spent the afternoon making a drugs chart, to try and keep up with all the tablets I have to take and when, I have a basket of pills!!! Appetite has certainly been better, being on the steroids.


• Friday had to go back to the hospital to have some bloods taken just to see how my body was responding to chemotherapy, its just this time I have to go back to the hospital as its the first treatment, after that I can just go to the GP for bloods which is closer. The run down to the hospital was OK dispute the snowfall the night before. Got perscribed more medication, more sickness tablets, stuff in case I got mouth ulcers because my mouth was starting to get tingly and constipation sachets! (some of the tablets bung you up!) Bit more of a disappointing day as I had to sleep again in the afternoon, but I did feel better in the evening (Leanne popped around and we pigged out on chocs!). My temperature although it rose a bit. wasn’t nearly as bad as it has been. Thank god the temperatures have seemed to have stopped.


• Saturday (Valentine's day) I went down to the pub in the evening to see friends, felt like ages since I have been out, was nice to be out and about, they all made me laugh! Didn't stay out too long as got very tired...and everyone was getting too drunk, hehe, its hard being sober when everyone else isn't!


• Sunday my back started to get very stiff again. I not suppose to take Diclofenic anymore with the chemotherapy drugs so I think that is why my back pain has returned! Rang my consultant about my back pain as the GP wasn't very sympathetic and arranged an appointment for Tuesday. A gentleman in the village popped around in the afternoon to give me a genealogy lesson, mum was hooked instantly and starter her family tree on ancestry.com, it is quite addictive, haven't quite got the concentration for it yet though.


• Monday night was another restless night, was in quite a bit of pain with my back and stomach cramps. Went over to the hospital Tuesday morning, and saw my consultant. Felt very emotional in the car, its seems I can't wake up without something being wrong, felt sick in the car too which wasn't nice. Saw my consultant, he said the lump on my thigh had gone down already which was amazing, he thought the back pain was the lymphoma flaring up as the chemo was fighting it and prescribed me some pain killers. The rash on my skin could be a reaction to the Bleomycin or because my immune systems was low, so antibiotics for that, going to have to redo the drug chart! Also got some tablets for my stomach cramps! I asked about my bone marrow results and he thought he would get them later that day, but he suspected it would be in my marrow. Came away with mixed feeling, yet more drugs and wondering what the implications were if it was in my bone marrow.

The day ended better though, finally got my new camera out to play with it, its awesome and my Dr rang while I was asleep to say my bone marrow was clear, yippee one bit of good news!

Spent the rest of the week playing with my camera, and had a photography lesson, doing the family tree and shopping (even out shopped Leanne, a sign of more energy)!



Monday I had made an appointment to have my hair cut short at the hairdressers, I thought it was the best thing to do as I know I couldn't bare pulling long strands out...Can't say I like it but people have said it suits me...We will see it probably wont last long.

So that was the two weeks between first chemotherapy and the second, hopefully we will be able to get the sickness undercontrol so I don't feel sick pretty much the whole time!

Waiting for Chemo to Begin

The consultant had said that whatever type of lymphoma it was found I had, chemotherapy would start next week.

The days in between the first consultation and first chemotherapy session have been spent gathering as much information as possible and trying to read as much as possible in order to get my head around it all. The lymphoma association are a really good source of information.

The other battle going on is trying to keep my temperature under control, every night without fail I suffer high temperatures, ironic as it is one of the coldest February's outside and snow is on the ground. The temperatures seem to hit around dinner time and as a result I have no appetite and usually pass on dinner. Cold flannels, cold baths, ice creams nothing seemed to work! What with the temperatures and itchy skin I am finding it difficult to sleep at night and that is meaning I am sleeping more in the day.

Since my meeting with the consultant I have started having Clexane injections everyday to thin my blood because there is a risk the tumours can cause blood clots, which they obviously want to avoid. My consultant thought I could do them myself but I opted for a district nurse to come and give them to me. When the GP surgery is open I will go down there to have them everyday and on the weekends a district nurse will come to give them to me. There is a variety of techniques in giving them, I thought Mel described it well in her book, there is the dart player or the dancer (the nurse either stabs it in or punctures the skin slowly) and the firm squeeze or the gentle squeeze of the skin. They are unpleasant as they have to be given them in your stomach and the Clexane stings.

My consultant rang on Friday evening to say that the pathologist had got back to him and my Lymphoma was Hodgkin's which is what we wanted, he said I would start ABVD chemotherapy on Tuesday. Sally and Verity came to visit at the weekend which took my mind of worrying so much. Next week is the start of me getting better.

Unanswered Questions and More Waiting

Wednesday was the day I was to meet my consultant. Had the last appointment of the day so the morning was spent trying to keep busy. All too soon it was 3pm and we were leaving for the hospital. Had my bloods taken before I met my consultant, obviously by an amateur because my arm went blue he was taking so long!


After another bit of waiting I met my consultant. It was explained that I did have lymphoma which is a type of cancer that originates in lymphocytes of the immune system. Lymphoma is cancer of the lymphatic system. The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels. The lymphatic system is part of your immune system. It carries lymph around your body. Lymph is a fluid full of infection-fighting white blood cells known as lymphocytes.

When a person has lymphoma, some of their lymphocytes are 'out of control'. They divide in an abnormal way, or do not die off when they should. These abnormal lymphocytes can collect in the lymph nodes, which then enlarge as the lymphocytes form tumours. Lymphoma can also affect other organs in the body such as the liver, as in my case. The affected lymphocytes begin to lose their infection-fighting properties, making you more vulnerable to infection. The causes of lymphoma are still unknown.

There are two main types of lymphoma:
i) Hodgkin lymphoma - if the Reed-Sternberg cell is seen under the microscope. Hodgkin lymphoma can occur at any age, although most people diagnosed are between the ages of 15 and 35 or 55 and over. Around 1500 people are diagnosed with Hodgkin lymphoma each year in the UK. Hodgkin lymphoma affects more men than women. Hodgkin lymphoma is now very successfully treated, and the majority of people with it will be completely cured.
ii) Non Hodgkin lymphoma - any lymphoma that is not Hodgkin lymphoma. Around 9500 cases of non-Hodgkin lymphoma are diagnosed each year in the UK. It is more common in those aged over 55, and is one of the most common cancers in those aged 75 and over. There are many different types of non-Hodgkin lymphoma. Some types grow very slowly and others grow very quickly.


The pathologist had been unable to identify my type of lymphoma, but he had narrowed it down to two types, one being Hodgkin's and one being non Hodgkin's. Alarm bells then started ringing because I had read that non Hodgkin's lymphoma is less curable. My consultant explained that depending on what type of lymphoma I had, would determine the type of chemotherapy I had.

My consultant explained that whatever type of cancer I have it was fast growing and aggressive due to the masses evident on my scans, which I was allowed to look at. At the bottom of my scans it said suspected grade IV lymphoma, there it was in black and white, grade IV is as high as it goes. He didn't think I had had the cancer all that long, probably dating back to the end of my travelling trip, October/November time. We discussed the severity of the situation, the fact of it being cancer, and with that there are no guarantees but he did say that usually with these fast growing aggressive types they respond well to chemotherapy. Discussed the option of freezing my eggs, but he said that we didn't really have time, he said it was a gamble but if the lymphoma turned out to be Hodgkin's the type of chemo I would be having had a good rate of fertility with it. We also discussed the option of going privately and the next steps.

Had an examination and the doctor noted my extended abdomen which he suspected was because of the liver being full of lymphoma. He looked at my sores and scars on my feet from my itchy skin, which is a symptom of lymphoma and one he said would soon diminish with chemotherapy. Also went through my other symptoms - the night sweats, at around evening time everyday I would become uncomfortable hot and my temperature would rise to very high levels, back pain - which I was know taking pain killers for, me said he would leave me on them for now but want to take me off them, he suspected the back pain was due to my extended liver pressing on nerves, tiredness - another 'normal' symptom of lymphoma.

Came away feeling disappointed that I still didn't know what type of lymphoma I had and would have to wait for these results before I could get my head around what chemo I would be having and with that we still had lots of unanswered questions because many of them related to chemotherapy and the answers are chemo specific. Draining day, physically and emotionally.