|
My story began back in March 1998 . I was swimming before work one morning ,as I often did ,when I noticed that my tummy felt like it had a lead weight in it. I mentioned it to my work colleague who was swimming with me and she insisted that I get it checked out . I was hesitant as I am not one to bother doctors unnecessarily ,but I did make the appointment…. I sat in the waiting room after having been examined by the doctor who then said that he needed to arrange a few things, and he would call me back in. It seemed like an age waiting and wondering - just what was going on - I tried to reason that I was fit - swimming , going to the gym etc. -apart from feeling very tired at times which I put down to having a very stressful job, I was fine ! or was I???? The doctor called me in, I was shaking, he said he wanted me to go for blood tests, a scan that I had a pulsatile mass that needed further investigation. It resulted in me having a laparoscopy at R.U.H. I was in hospital for a week. The doctor said it was Lymphoma - something to do with lymph nodes but he didn’t explain - all I knew was that mum had recently been diagnosed with cancer (Malignant Melanoma ).and that it had spread to her lymph nodes. I had never heard of Lymphoma and thought that because I had my op. that things were ok. It wasn’t until the day I was going home that a nurse came to talk to me saying about further appointments in Oncology that it finally dawned on me and I said to her “is it cancer?” She replied “yes” I replied “Oh shit” - not my normal language - but what can you say??? Sooo from there on began many appointments, blood tests, scans, being told ‘watch and wait’ - how difficult is that when your life is in the balance and all you know is catch it quick and you have hope. That is just so hard to get your head round! In Aug 1998 I began my first lot of chemo - a bit daunting but ok- I didn’t lose my hair and everybody in oncology was so nice and all so cheerful and positive . I decided from then on for my family, my friends, and for me that was the way to be! …… It was difficult at times, the thought of not being here with my husband, my soul mate. We first met he was sixteen and me just thirteen (I was very mature for my age) I knew he was the one for me but it wasn’t until later and all that teenage years bring that we got together (34wonderful years). Oct 98 I was at hospital having another scan and to my delight found a message on the answer phone saying that my daughter had gone into labour. My second granddaughter was born later that day- what a wonderful end to a day full of anxieties. It was later that year that mum became worse and nothing more could be done for her - we had gone to our appointments together,- moral support for each other. We kept positive for each other. It was hard! Dec 1998 It was just before Christmas mum passed away. I sat in the hospital watching her die listening to the carol service that was going on in another part of the hospital, wondering just how I would cope without her . I felt for my dad and my sister losing a loved one and thought I must keep going for them - I MUST FIGHT THIS!!!! Jan 2000 Just so happy! my grandson was born on the 2nd - mum would have been so happy to have had a great grandson as there have been no boys born into the family for generations. Dad was over the moon - if only mum had been here. Jan 27th chemo again -scans not too good but hey ho ! keep going you have a lot to live for! Sept. 2003 Yet another course of chemo. Again it wasn’t too bad - I still managed my swimming. Nov. 2003 My second grandson was born.. I was just so happy. Oct. -Nov 2005. Testing my sister for tissue match for stem cells. ( to use at a later date if things get bad). Was a shame my wonderful sister who would go through that for me wasn’t a match so will have to have stem cells taken from me. Ok not a problem - or so I thought! Then followed 4 courses of Rituximab a monoclonal antibody that helped in many cases. Jan2006 Rituximab not worked - will do C T guided biopsy - not the most pleasant of procedures- to see if it has transformed to high grade. I was lucky ,it was still Low Grade. Had bone marrow biopsy to see if Lymphoma had spread there - It had a bit. March 28th 2006 Admitted R U H for high dose chemo prior to autologous (stem cells taken from me) stem cell harvest. I didn’t know it but it was to be the worst few weeks that I have been through! On arrival I was put in the annexe in William Budd. It was a room of my own with tv and stereo and on the brick wall outside was a lovely picture of a palm tree and the sea - not quite the Ritz but not too bad. Later that day went to try on various wigs and chose one that I thought was better than my own hair, so l didn’t worry too much about losing it-.as II was a hairdresser I was always messing around with it so it would give me a bit more time and money. I really felt my time here wouldn’t be too bad…..
However I was given high dose chemo and had a rough 24hrs. but the next day I felt much better and was discharged . It was unfortunate that I developed one of the bad side effects of the chemo and was readmitted the next day with haemorrhagic cystitis. The next 12 days were spent mostly hooked up to a drip (not easy when you need to get to the loo a bit quick) so at times I had to succumb to incontinence pads and a commode- not very dignified but needs must! I had to start a course of G.C.S.F. injections -to mobilise my stem cells into the blood - and hopefully harvest them after 4 or 5 days. I was taught how to inject myself into either my stomach or thigh. Just pinch an inch or so they said - that was no problem, I could pinch an inch or three! After plucking up courage to ‘stab’ myself the first time, it wasn’t so bad and I felt quite proud that I had done it. - it just added to one of life’s many experiences. My worst time was when in isolation ( being Neutropenic) My husband Pete could not visit as he had a cold - we had never been apart that long and it was now that I needed him. I gradually got better ,I had blood tests every day to see how the stem cells were doing ,then my nurse came to tell me that it had been unsuccessful and that I would need to have them taken from my bone marrow at a later date. Oh Joy! The good news was that I could go home ! Pete, my family and friends were a wonderful support to me over the following weeks. I was feeling rather fragile and getting used to my ‘new look’ without hair. Pete loved to stroke my smooth bald head, my grandkids got used to me either with a hat, wig, or just me - bald or not I loved them to bits and that was the main thing. I was still Nan. May 3rd 06 Back in R.U.H. for stem cells to be taken from my bone marrow. I came round in theatre with difficulty breathing and tachycardia . I was given a nebuliser and oxygen, the blood transfusion stopped as I had had a reaction to it. I was ok afterwards. My stem cells are now in deep freeze for a later date if need be. June 2006 I was feeling much better and together with my two daughters, my granddaughter (11yrs old) and my sister did the ‘Race for Life’ raising £800. It was an awesome experience - reading the messages pinned to the backs of peoples t shirts-- who people were running for - some in memory of a loved one , some still fighting the battle. It was a very emotional occasion and on reaching the finishing line to be greeted by my husband and family , I just threw my cap in the air and poured cold water over my bald head. It was a moment I will never forget! Just brilliant!!! Sept 06 - Feb 07 more chemo. Wasn’t too bad as it was a lower dose than the last lot so I was able to lead a fairly normal life - or at least normal for me! My hair started to grow back - it was quite a surprise to see the natural colour as I had coloured it since my teens I was always changing the colour, style etc. but not having hair did have plus side - more time, more money and swimming was easier with no hair to worry about. It took a bit of getting used to having my straight blonde hair replaced with very curly grey hair.- it looked as though I had just had a very tight perm! - if I was an old lady I might have been pleased with but I was only in my 50’s ! But never mind several months later and many compliments regarding my ‘new look’ I got used to it . I thought “what the hell !it’s a small price to pay for the chance of life”. Another year and I was feeling well and I was back to normal with the hair, it had gone back straight and I eventually achieved the desired colour. - Oh to be so vane when more important things are at stake! Aug 08 Result of scan shows minor increase in para-aortic lymphadenopathy - meaning possible recurrence of abdominal lymphoma. As I have a low grade lymphoma and feel well there is no treatment planned at the moment. We are back to ‘watch and wait’. I go back for appt. in Dec. I go swimming most weekdays as I want to be as fit as possible for whatever the future may hold. I was really pleased to be able to enter a sponsored swim with my two granddaughters ( aged 9yrs and 13yrs) and we managed 3 ½ miles between us raising £260 for Cancer Research . Thanks to family , friends and Alan for sponsoring us. I know I am one of the more fortunate to have survived so long with cancer, I am lucky to have
wonderful family and friends that have gone through the good times and the bad with me. I also have a Macmillan nurse who has been such a help whether it be needing advice, information ,or just have a worry no matter how small, she is at the end of a phone or I can email her. Though we have raised money for Cancer Research. Macmillan nurses really do make all the difference to cancer sufferers and their family Alan and his team are doing a great job with their new website and all their fundraising events. We have attended The Lady in Red Ball on both occasions and hope to do so again next year God willing. it’s a brilliant night and I don’t want to miss it! Never give up HOPE I say! |
