Trudy jayne's blog

Not my baby too !!!! my story :O(

2009-09-12T18:04:40Z

I have come to the conclusion i really,really hate fridays . sounds silly i know but i feel like perhaps i have put a jinx on them or us ,after getting married in back in february on yep .... friday the 13th lol. we were going to get married on the saturday the 14th.... valentines day but decided we wanted to actually wake up as newly weds on valentines morning in the gorgeous little cottage we had rented up in whitby.we love it there so decided it would be the ideal location for our wedding, just us the kids and our two best friends who were to be our witnesses we then had a wonderful reception back home for family and friends which was great ,made even better by the fact i got to wear my stunning wedding dress not once but twice :O)... anyway shortly after our wedding reception i found the dreaded lump in my groin ,i felt fine so wasnt worried to much to begin with ,it was only when i started feeling poorly i thought i had better get myself off to my gp who reassured me that it was only a viral infection causing the swelling and that it would soon return to normal .... i began to feel a lot worse so went back many many times only to be told it was definatly viral related altho as a precaution my dr would take blood tests and perform a pelvic examination both these were fine but my temp was still high and i was still feeling awful so i was sent for a pelvic and renal scan, again these were normal which seemed to confirm my drs diagnosis of the viral infection.....at this point almost two months later i was beginning to doubt myself totally i thought i was going mad was a hypochodriac or just plain lazy as i struggled to get out of bed each morning .... another week later not wanting to go see my gp again i was beginning to feel a hindrance ,i decided to go to the walk in centre i felt totally dreadful my temp was 39 i was shaking hot clammy feeling sick and very faint... looking back now i dont know how i even made it there i had just dropped the kids off at school and was struggling to push the baby in the pram so was in a right state by the time i arrived the nurse at the hospital immediatly phoned my gp telling them i was really unwell and needed to be seen, this time the dr decided to do a pregnancy test by blood as i felt so sick and had not had a period for 7 weeks ,but i had already performed 5 over the counter tests so i knew that definatly was not what was causing my symptoms altho my stomach was huge and bloated and i could have easily been mistaken for being 6 months pregnant.the gps nurse had to take the bloods but wasnt convinced and thought i was showing a lot of the signs of ovarian cancer so decided to take a blood test for this too as there is a marker in the blood for this.... a week later the results were back i wasnt pregnant which i already knew and i was also clear of the marker so it wasnt ovarian cancer either .... i was baffled was it really a viral infection ???could a viral infection make me feel this bad and for so long??? was my dr right all along ......a few nights later i fell into bed totally exhaursted ,it was then i felt the swelling in my groin and thought my god its doubled in size it had gone from the size of a cadburys mini egg to the size of a caburys cream egg or a golf ball .i phoned my gp next morning and arranged yet another appointment this time when she examined me she said seen as the swelling has now increased i think you should be referred to a specialist for a biopsy.... the appointment came thro really quick and to cut a long stort short i was examined and then told by the specialist he could not rule out cancer as this is what he was looking for 6 days later i was in the operating theatre having the lymph node removed... the next bit is history ....phone call asking me to go see him ...the lymph node contained cancer cells i was diagnosed with follicular lymphoma so much for that viral infection hey....anyway what followed was 2 months of more tests numerous blood tests ,cat scans, bone marrow biopsy a referral to elm house a breast clinic as the cat scan found an enlarged aux node and inflamation of the breast ,another op to remove more nodes .luckily the aux node was cancer free which meant the lymphoma was contained to the groin so i was to have radiotherapy..... in the meantime my youngest lil boy who is only one had been poorly a few times and in between all my hospital visits had been seen at the drs and walk in centre several times himself but it was all the usual childrens ailments, coughs ,colds sore throat and teething problems so i wasnt particularly concerned even when a lump appeared in his neck ,he had been unwell so both myself and the dr thought it was just normal swollen lymph nodes....i was told to keep giving him calpol to keep his temp down and he was given antibiotics to see if they helped.....this was the end of july.... i tried not to touch the swollen node in my babies neck to much as i was told this could stop them returning to the correct size .a week or so later i had another little check to see if the swelling had gone i was shocked to find another small lump just under the first one ,so we headed back to the gp. he reassured us that it was most likely due to a throat or ear infection but if the swellings were still there in ten days i was to take him back...... i in the mean time had started my radiotherapy and was feeling pretty wiped out. i was exhausted and had been given anti nausea drugs as i felt so sick, but my little boy seemed like he was back to his normal happy giggling self which was a relief especially as i was finding starting the treatment after months of tests and ops very emotional. i was in tears for quite a few of my sessions so was referred to a physological dr .the specialist nurse thought it would help me if had somebody to talk to about all my worries concerns etc as i try to carry on as normal as i can around my children, husband and friends.i feel if im strong those around me will be strong too !!! What i thought was the final straw came last "friday" it was the last day of my treatment and i had to see my oncologist so was feeling a little anxious .altho i hated having to go the hospital every single day, it in a way it was a comfort as you kind of feel that you are atleast tackling your cancer and doing something about it when having your treatment. anyway we were cruising along the motorway, me on the back of the bmw (motorbike),running a little late so going maybe a little bit faster than we should have been when the engine suddenly konks out on us. well panic sets in ....what if i dont get the last treatment will it make all the previous sessions invalid ....a total waste of time??? will the oncologist still see me??? i phone my mum to ask her to come and get me but it would take her atleast 30 mins to find us so she phones my grandad who lives not to far away to come look for us. i look in my bag but havent got a single thing with the hospitals phone number on ,so i ring my aunty asking her if she can dig out the number and ring the hospital to let them know i am on my way but have broken down on the motorway so will be there as quick as i can.i see a road sign that says clatterbridge hospital 2 miles away so start running for it . i cant believe i done that now lol i don't think i was fit enough to do it before being diagnosed with cancer let alone doing it with cancer whilst undergoing treatment...anyway as i'm runing along the motorway a lovely gentleman pulls over and tells me and my hubby (who is really struggling to keep up with me pushing the bike along )to jump in and that he had driven past us once but couldnt stop in time so had come all the way back for us .....what a lovely man.... think my hubby thinks i'm mad as i say he was really my guardian angel looking after me lol. i finally arrive at the oncology department 35 mins late and in a right state ,breathless and in floods of tears. my oncologist offers me i glass of water but i decline asking for a scotch,luckily he's really nice and sees the funny side. he says he thinks it may help if i was referred to a physcological dr .... to late the referral has already been made !!!! i was then told the radiotherapy will carry on working for 10 weeks so my follow up scan is not till december which i was quite disappointed about , means another 3 months of waiting ...god cancer really is a waiting game isnt it.after that came another blow... i thought i would have the radiotherapy and find out after the follow up scan if i was (fingers crossed) cured or in remission but i have to have 5 yrs free of cancer with no relapses before i am given the all clear .....yet more waiting, 5 yrs feels like a whole life time !!!!!! So after a rather emotional up and down kind of weekend i decided it was time to get back to the old positive Trudy and to turn the waiting and not knowing in to a positive thing rather than a negative one.... as what i dont know can't hurt me can it,as far as i was concerned i had 3 months free where i didnt have to think of cancer every waking hr,ok i still need regular checks but im not at the hospital every single day as i was and for all i know the radiotherapy could have zapped all those evil little blighters away...right ??? .i was determined to try and get a sense of normality back into mine my hubbys and childrens lives ..it was great for a few days then thursday i woke up feeling totally awful i had a temp all my bones and joints ached my head was thumping terribly and it hurt like hell when i went the loo ,also the babe seemed to be developing a cough again and the 10 day wait for his follow up check had just passed .so i phone the surgery a double appointment booked ....its *friday* again ...i'm getting the baby and myself ready for our 9.30 appointment thinking well today can't be any worse than last friday surely. we arrive at the surgery on time .i'm still feeling rough but better than i had the previous day.we have a 30 minute wait then are called by the dr,he is not the one i usually see but he seems nice and i have heard only good things about him ...he checks my temp its still high he listens to my chest takes my pulse etc he then asks if i can give a urine sample so i pop the loo and return with a little pot filled with what looks like watery treacle he dips it and says i have a nasty radiation induced water infection ...radiation cystitis .i am given strong antibiotics that look like horse pills and told to take another sample back in a week to rule out any permanent damage ......next its my gorgeous lil baby boys turn to be examined the dr feels for the swollen lymph nodes in his neck ,they are still bigger than they should be, he checks his ears and throat and listens to his chest and says there is no obvious sign of infection and given the fact that the nodes have been enlarged since july and its now september he thinks he needs to be referred to a pediatric dr for a full blood count and a fine needle biopsy ....i feel pysically sick the thought of my little angel going thro everything i have, i tell the dr i dont want my baby having these tests done unless it is absolutely vital ,to which he replies given the fact the lymph nodes havent decreased in size at all and taking my medical background in to account it definatly will need investigating..... i cant even begin to describe how i am feeling at the moment ,throw anything at me and i'll take it ....but not my lil man, i can't bare to think about him having these tests .i keep looking at his tiny arms there isn't even a vein to be seen ,the nurses are going to have to prod around so deep just to get any blood for the tests ... and as for the needles going in to his neck i shudder at the thought....then what if heaven forbid the cells removed are cancerous....i know it may sound silly but i breast fed zach right up until the day i had my scan when i had no choice but to stop as the dye they injected me with was radioactive. i was told the week before the scan when i was first diagnosed that it was perfectly safe for me to breast feed my son but i would have to wean him off asap in order to have my treatment....the drs dont know everything about cancer tho do they say they got it wrong ,what if i have some how given my baby cancer thro my breast milk ....if not why do the drs feel he needs checking for nhl at one when the average age for diagnosis is 65 yrs ....... Its a nightmare i have so many things swirling around in my head.i'm just praying that the swollen lymph nodes magically disappear before the appointment arrives ,so he is spared any suffering!!!! thank you all for reading this,i know its been a long one.... love to you all ,keep on fighting Trudy xxxxx

feeling a little better todayxxx

2009-08-27T15:35:46Z

just a quick update to the blog i left yesterday.... it was a cancer advisor my radiotherapist had arranged for me to see today so after my radiotherapy i trundled off to her office a little anxious as i wasnt sure what to expect ,but she was lovely ,reassuring and very comforting she even wiped away my tears and gave me a big hug she said i'm not going mad lol but am just human ,that i need to talk and get things off my chest .....i'm attempting to carry on as normal as i can to protect my children ,family and friends then quite literally breaking down on my own which is normally during the evening when i should be sleeping,so lack of sleep isn't helping matters (my husband has recently started nights so he can be there during the day to attend my hospital appointments) the advisor is going to come see me again tomorrow for a little chat and has put me forward for councilling which i'm not a 100% convinced i need right now but thought i'ld go once see how i feel if it helps talking openly about my fears ,concerns etc without the worry of hurting those closest to me it has to be of some benefit doesn't it ???? trudy xxxxx

finally started my treatment !!!!

2009-08-26T18:56:00Z

just a quick update to let you know after 3 months of various tests and operations i finally started my treatment last week. whilst i thought i'ld be totally relieved and pleased to be doing something about ridding myself of the cancer ,i find i'm quite the opposite i'm so emotional ,say boo to me and i'll break down in floods of tears,i can't sleep and am having trouble eating anything at all .i dont think i'm depressed but am so anxious and a total emotional wreck.i broke down yesterday at the hospital and again today so my radiotherapist has arranged for me to speak to somebody tommorow not sure who or what the lady is but they felt i needed to have a chat and get things of my chest as i'm plodding on trying to act as normal as i can for the sake of my 5 children. also whilst most ppl fly thro radiotherapy with little trouble at all its really taking it out of me, i started vomitting in the early hrs of the morning following my first session then at tea time during the second lot then practically straight after the third. i saw the oncologist on friday who has prescribed anti sickness drugs which seem to be helping with the nausea but the fatique and shakes are just as unbearable,he said altho its pretty rare a few ppl are very sensitive to radiotherapy and dont tolerate it very well. i think at times fighting the cancer is the easy part, its the emotional Psychological side of it that is the most difficult part to deal with and overcome . xxxxxxx

fantastic news :O)

2009-08-03T15:32:51Z

Hi , Just a quick update to let you know i recieved the results of my axillury node excision biopsy on friday ......only 7 days post op, which surprised me as i was told it could take up to a fortnight..... Anyway i'm estatic to say the the node was totally cancer free " wooooo" it was enlarged due to infection .What a huge relief . The lymphoma is now isolated to my groin .I had an appointment today with the radiotherapist who explained everything regarding my treatment ,i am now just awaiting an appointment for another cat scan then i'll be marked up and ready to go ........I may sound mad but after almost 2 and a 1/2 months of various tests and ops am really excited to be having my radiotherapy ....even given the yukky side effects ,i feel like things are finally moving !!!! Stay strong and keep fighting love & hugs Trudy xxxxxxx

Sore & fed up :O(

2009-07-25T13:02:19Z

well after all the confusion during the past two weeks as to whether or not i was to have the op (right excision axillary nodes) it went ahead yesterday as planned. i was hoping it would be as quick and easy as the previous one ....i had an enlarged lymph node removed from my groin at the end of may when they found the cancer..... but i was very much mistaken i woke up from the general anaesthetic very weepy and in agony.i was given the maxium amount of morphine my consultant would allow which totally wiped me out and made me feel really spaced and groggy so the nurse gave me anti nausea pills which would you believe .....made me sick lol. i'm now home and tucked up in my own bed very sore with my side stapled together, really worrying about the results ..... i am due to start radiotherapy the beginning of august and there is a small chance that could cure my cancer but if the nodes removed yesterday contains cancer cells its back to the drawing board so to speak ......i just want to get on with my treatment now its already 2 months since they first diagnosed the cancer ...... sorry if i'm moaning i know there are a million ppl worse of than me but i just worry for my babies :O( love to you all ,keep on fighting hugs trudy xxxxxx

Confused .....do i or do i not have cancer ????

2009-07-14T11:48:51Z

hi , i am at present attending two different hospitals as i was diagnosed with follicular lymphoma 6 weeks ago,both these hospitals have told me different things regarding the enlarged auxillary nodes i have ,which is pretty confusing in its self. i earlier had an enlarged lymph node removed from my groin which is where the diagnosis of follicular lymphoma came from .how ever i received this letter yesterday morning which has really puzzled me and left me quite unsure of what is to happen next i was due to start my radiotherapy very shortly . i was just wondering if anyone had experienced a similiar thing ...... Dear mrs Jones this is a letter to inform you that further to your haematolgy clinic visits,the extra tests that were outstanding on the lymph node biopsy have come back negative. while this is unhelpful in confirming a diagnosis of follicular lymphoma,dr a***** ,a histopathologist has had a further look at the lymph node and is still convinced that it is follicular lymphoma,however,in view of the negative cytogenetictest,he has sent it for a second opinion,which hopefully should be within a week or so. i have written to dr R****** who arranges radiotherapy to let him know this,however hopefully he can still see you in clinic and get on with planning and if the second review confirms the diagnosis of follicular lymphoma then it should not delay any further. i apologise for the uncertainty at present but i think it is important that we do get the correct diagnosis to start with but hopefully it will not take too long to get the second review. if you have any queries,please do not hestiate to contact me and i will let you know as soon as i have the results of the second review yours sincerely dr R *********** MBChB MRCP MRCPath consultant Haematologist