In January of 2012 I had a terrible cough for 7 or 8 weeks and being a smoker it was taking longer to get rid of the cough. When I was well again I decided I was going to stop smoking, so in June I got Nicotine patches and 8 weeks later I was a non-smoker and nearly 4 years on I am proud to say I ‘don’t smoke’.
In October I was feeling exhausted every day and also had started experiencing night sweats then I started wheezing and had difficulty breathing, and not thinking ‘cancer’ but maybe something to do with my stopping smoking and all the rubbish clearing out of my airways. I did go to my GP on Monday 19th November 2012 as a precaution more than anything and he sent me the next day for a chest x-ray. My GP phoned me on the Wednesday to tell me he was sending me for a CT scan as he was not too happy with the X-ray.
A day or two later I got an appointment for 5th December for a scan at 9.30am and an appointment to see the Consultant at 10am (this sent warning bells out as you don’t usually get back to back appointments unless it was something serious). On 5th December I went for the CT scan and then my husband and I had the short slow walk up to the Consultants Clinic and sat trying to be as normal as we could in this situation. I did have a feeling that I was getting bad news. The Consultant I saw was in the Respiratory Department and they deal with lung cancer as well as other illnesses. Our turn came and we meekly went into the room where the doctor was and also a nurse. He was very pleasant and asked me questions about my past health etc. which has always been very good. Unfortunately that did change. He showed me my first Chest X-ray on his monitor and there we saw a large white fuzzy blob about the size of an apple. This was situated on my right lung at the airway entrance and this is what was causing my wheezing. He told me it was really bad news that I had lung cancer and there would be no operation as there was a touch of cancer in my liver as well. We were both devastated to hear this and then everything just seemed to be a blur and difficult to take in anymore information. He kept saying how bad it was etc. and I thought I won’t see Christmas. It is like your whole life flashes by and you are being told this terrible news argghhh it is so difficult to explain the feeling. After the initial shock he said he wanted to send me for a Bronchoscope and I have a fear about this type of test and at first said no but was talked into it.
On 11th December I had the Bronchoscope procedure done and unfortunately no results could be given as the tumour was outside my airway leading into my right lung and the camera was inside my airway and could not get into my right lung as the tumour was pressing on my airway and closing the opening into my lung so this lung had stopped working a while ago. The next step was to try and get a liver biopsy done. All this was taking time and I could only think that each day that is passing the cancer is getting worse and nothing is being done to help me get better. It was so frustrating. It was after all just a couple of weeks till Christmas so everyone was starting to wind down for the festive season. My appointment for the Liver biopsy came and it was for the 28th December 2012, and I had a follow-up appointment as well for the Tuesday 8th January 2013 to get the results of the biopsy. Well that is that, nothing else to do now but to try and get through Christmas with the family. That was the hardest Christmas I have ever had to endure. We had Christmas dinner at my house with my husband, son, daughter and son in law, my grandson (age 14) my brother in law and a family friend. In a way I was kept busy (fatigue taking its toll at times) and that was the best thing as I didn’t have time to ponder about what was lying ahead for me.
I got to the hospital nice and sharp to get my liver biopsy done as a day patient. I was a bit apprehensive as I didn’t know what was going to happen, but I was not scared. This had to be done; the doctors had to find out what type of cancer they were dealing with before they could start any chemo treatment. The biopsy was practically painless, and did not take too long then I had to lie flat and very still for a few hours as the liver can bleed and I could haemorrhage so I just had wee cat naps until they said I could sit up a bit then another hour or so I got to come home.
New Year’s Day came and went much like Christmas had. Such a weight to be carrying around and the tiredness and wheezing was terrible. Everything I did had to be done in stages. Changing the bed, first strip cover off duvet then sit down to recover, go back and take pillowslips off – go sit down to recover, back to take sheet off – and so it went on. I had no energy at all. My family did help a great deal but I wanted to continue to do things if I could.
I went back to my work (I have worked in the Blood Transfusion Service Research and Development since I was 16, obviously I like my job, I am now 58) on the 7th January 2013 and met our new boss for the first time and I said it is lovely to meet you and explained I am back at the hospital tomorrow so everything depends on what happens there whether I am back in to work on Wednesday or not???
We arrived at the hospital on Tuesday 8th January 2013 to go to see the Respiratory Consultant to get the results of the liver biopsy. When we entered the room we were met by a very happy lady consultant (not the original doctor I saw) and I said to myself “why is she so happy, I am dying here” but then she started to tell me the good news ‘you don’t have lung cancer, you have non Hodgkin’s Lymphoma’ and out of the 2 types of cancer the NHL is the better one to have as it is far more treatable and curable. Well we were so happy to be hearing this, I still had cancer but there was a good chance that they can get rid of it. Downside was I had to see another Consultant, a Haematologist this time. More waiting arggh. Then the doctor said she was going to phone Dr Scott who would be my haematologist and give her my contact phone numbers and she will phone me back as soon as possible with an appointment. Well that sounds Ok I thought, might not have to wait too long after all. We thanked the consultant and left to head for home. We were only 15 mins into our journey home when my mobile rang and it was Dr Scott from the Western General asking me if I could come into her Ward in the afternoon as she had a bed available and to bring clothes etc. for up to 5 days. What a great day, I was so excited to be going into hospital to get started on whatever treatment I needed. We continued home and had a cup of tea while I phoned my family and close friends to let them know the good news and that I was going into the Western to get started on treatment. I gathered up toiletries and clothes etc. and iPad, phone and chargers and the likes and off we went back to the hospital.
My husband came up to the ward with me and then I told him just to go as I would probably be sitting around for awhile before anyone would see me. I was just happy to be sitting in the Ward. My Consultant came after a short while and introduced herself and she was just so lovely and reassuring. She explained that I had non-Hodgkin’s Lymphoma (Diffuse Large B-Cell stage 4) and told me what treatment I would be having and possible side effects etc. She wanted to get a few tests out of the road before the chemo just to make sure everything was ok with my heart etc. I got settled into my bed and let the process begin. The following couple of days I had various tests and scans and a bone marrow biopsy carried out and the Friday I was getting started with my chemo regime. Thankfully my bone marrow was clear of any cancer cells. My consultant did say that I would maybe get a surprise how quickly the chemo would start to work – and boy was she right 3 days after my first chemotherapy session my wheeze had disappeared and I could breath normally again. This was an added boost because I knew and could feel that the chemo has started to work.
I was not looking forward to getting the chemo at all but it was not as bad as I had expected. The nurse started about 11am giving me monoclonal antibodies via drip first and then when that bag was finished she injected all the chemo via 6 large syringes into the cannula. It was administered over a period of about 7 hours as they wanted to keep an eye on me for the first time as there can be a lot of severe side effects – so now I was waiting for something horrible to happen – thankfully it never did.
I had 6 RCHOP chemotherapy cycles and each cycle was over 3 weeks
Friday go into out patients for chemotherapy – takes most of the day
The next 5 days I was on steroids, along with tablets to help with sickness, tablets for my kidneys etc. I think I had to take about 26 pills every morning for 5 or 6 days. I felt not too bad the days I had steroids as they give you a wee extra boost.
The following week (middle of cycle) was always the roughest as I had stopped taking the steroids so I tended to go very lethargic and lose appetite and generally felt terrible.
The last week of the cycle I perked up again and managed to get out with friends for coffee etc. Back to the Friday and it starts all over again.
Each time you have chemo you get more tired than the last time as it is cumulative and the chemo builds up and the more chemo you get the worse you can feel. I did ask after the 2nd treatment if I could be weaned off the steroids as I felt absolutely terrible and couldn’t eat or do anything for the whole week, so they weaned me off the steroids for the rest of the treatments and that made an enormous difference to my energy levels and eating.
3 weeks after my 1st chemo I noticed that my hair was falling out, and not only the odd hair, you just needed to touch my hair and a handful would come away. It was falling out with even the slightest movement of my head and I was constantly covered in white hair. So I decided to get it all shaved off. My son is a barber so he came round that night and shaved it off for me. I was upset at first and didn’t want to look in the mirror and had a wee cry and my son just gave me a hug and said ‘you are still my mum and you are still beautiful with the bald head’ so he made me laugh. A day or two went by and then I thought well this is the new me for a while so don’t let it get you down and I didn’t. I had previously been to get a wig, but I really didn’t like wearing it so I opted mostly to wear a scarf and I watched a few short videos on u-tube to see what different ways there are to wearing them. I also had quite bad pain on the top of my head when my hair first started to fall out and had to take pain killers. It was something to do with the hair follicles but it only lasted a couple of days.
Photo of me with my scarf wrapped like a turban and my grandson kissing my bald head after getting my hair shaved off.
End of April now and my chemo has finished and now I need time to build my strength back up and let my hair grow back in.
I had to get another CT scan and a PET scan to see how things had progressed. I was told at the very beginning that I would possibly need some radiotherapy treatment as well so it was not a surprise when my consultant said I did and booked me in for radiotherapy treatment.
After having a few months’ treatment free to build my strength up again I started Radiotherapy in July and had to go every weekday for 3 weeks. The first appointment was about 40 minutes and that was to get me all measured up so they blast the radiotherapy in the exact spot needed and this takes a wee bit time for the radiographers to do and then they tattoo a tiny blue dot onto the area needed zapped so each time I get zapped they use the marker so it hits the spot it should. The RT takes its toll on you as well and I just felt really lethargic again. Even after the 15 sessions and a good few weeks after I was more exhausted than the week before. My Consultant said nothing to worry about as the Radiotherapy can still be working away inside my body for 12 weeks or more after treatment has finished. It did ease up a lot, but when I get overtired I still get a tight feeling but I just rest as I know I have been doing too much. Do what your body tells you is a good place to start.
Gradually getting stronger as the days go in and my hair is coming back in nicely. I wondered if it will be curly. Heard that you can have chemo curl after treatment and hair grows back. It did oame back wavy but after about a year and a couple of hair cuts it has gone back to how it was before – poker straight.
This is a photo of me on my 60th Birthday, and at one point I didn’t think I was going to see 60.
I have been in remission since October 2013 and gradually started going back to my work phasing in slowly. The 10 months or so of treatment went in very quickly and looking back now I can’t believe it was nearly 3 years ago.
I can’t explain the feeling you get when you are first told you have cancer. It is like being smacked with a concrete block and knocks the wind out of you. You are all mixed up with different emotions going on and the dread of the word ‘cancer’ but wonders can be done these days, look at me. I had loads of support from my family and friends who kept my spirits up when I got a bit down.
Life is nearly back to how it was, but I still get very anxious before clinic appointments and praying that the results will be clear, but I think that is a natural thing that most people go through.
Help and advice is out there so don’t be scared to asked if you need it and Bloodwise has helped not only myself but thousands of people who are either going through, have been through or are a loved one caring for a blood cancer patient and they do a great job so thank you all, and thank you for reading my story.