Steph n Paul

Mum passed away

2010-10-08T09:24:51Z

Our fantastic mum passed away on Thursday 30th Sep it was a hard 6 month fight but mum and all of the family fought it bravely , We are all so proud of mum for how she dealt with everything that this cruel decease threw at her .

We are sorry to people who had replied or commented on our post's but we really didnt have time what with being mum's main carers and constantly looking for advice and information on Glioblastoma multiforme grade 4 .

We were always on The Brain Hospice site checking symptom timeline etc but as good as the site was we found that the the symptoms where there but they came earlier or lasted longer , mum's medication changed almost weekly we had to constantly monitor the medication and the side effects as these can be damaging than the cancer sometimes .

If anyone else is going through this or have just been told the sad news that they have a Glioblastoma or any form of cancer and would like any advice or guidance please feel free to get in touch , we will come back on at some point and go into more detail of mum's and our 6 month battle and even though mum is now at peace the fight goes on as we live on and remember mum every day and talk about her as we all ways will mum is still with us so the cancer never did and never will win .

Love and miss you so much mum xxx

How quick things change .

2010-07-29T20:42:19Z

Hi.

Not been on for 3 weeks due too so much going on ,Where do you start.

Since this all began we have had to keep a very close watch on medication , times its to be taken and how etc and also you watch for changes that can sometimes be missed by a consultant or gp , There have been so many mess ups with mums med's and we have even had to ask for blood test's and had to ask about mum's Phenytoin level and request that as her levels were low should it be increased and they said yes it did seem low lets raise it , and what with the speedy steroid reduction previous and the problems mum had it goes to show how observant you have to be and never be afraid to question your consultants judgment and seek advice and information from any where you can ,which is why the Macmillan site is important and anyone who can add any information on even the slightest thing can be what someone else is experiencing .

Mum has become more and more unsteady on her feet and the left side has become much weaker , so mum was doing well until last Saturday when mum had a fall and was in a lot of pain so we attended A n E where amongst the usual A n E flapping mum had an a chest xray that thankfully came back clear so we were ready to leave with advice and a leaflet on chest injuries .

Once home mum and all the family agreed that it would be best for mum to attend our local hospice ward in a small town hospital ,again another mess up . The second day of mum's stay i checked the medication record and noticed that they had administered mum's Phenytoin at 9 am and not 9 pm which is when mum has always taken it and whilst we were sitting there at 2.45 pm the nurse placed mum's steroid's down for her to take , the thing is mum has always taken her steroids at noon and no later due to medical advice and effecting sleep but any change of time with some meds can have a knock on effect ,once we voiced our concerns surprisingly we were told that mum was having too many visitors , the final straw for mum was last night when she was taken to the toilet by a male , i know that they are nursing staff etc etc but mum is a 68 yr old lady who has found it hard for us to have to toilet and shower her let alone a strange man who also stood there while she was on toilet . To cut it short mum wanted to come home and we wanted her home as we have been caring for mum for 4 months now , we were offered fast track care but it has been rejected as mum does not need care and has been offered a bed at home .

Sorry to rant on its just that until you actually experience the NHS you dont realise how bad it really is and i know that they are all doing a job but thats it , its a job if you cant do the job with some compasion then change career .

But on the other side of the NHS coin we feel that we should say how great everyone at The Oncology / Radiotherapy unit were , they always had a smile and mum got to know them well and would always have a nice chat with them . Thankyou so much to them all .

Mum has now finished her radiotherapy and is relaxing well under the circumstances , not really sleeping much its now hard to see what is the tumor or the side effects of a medication as mum'm steroids are being reduced weekly now .

We will try and get on more regular with anything that may help others .

Till next time .

3 Months in

2010-07-10T14:21:13Z

On the 21st of March 2010 our Mum went to the doctors with concern that she had limited use of her left arm and hand the doctor adviced mum to go to the medical assesment unit for a scan for a suspected stroke , Once there mum was MRI and CT scanned what they found was to change all our lives overnight .

We were taken to a small room and mum was told she had a shadow on her right side and straight away was refered to The Wessex Nuerological unit at Southampton Hospital for further tests and scans .

On the 26th April 2010 Mum had awake brain surgery to remove what they could of the tumor and perform a biopsy , The surgery went very well mum was home the next day and walking around and seemed very well under the curcumstances , We had a week to wait to hear the results of the biopsy , mum was prescribed steroids to reduce the brain swelling that had resulted after the op .

We returned to Wessex on the 5 May 2010 ,When we went into the consultants office I expected to hear that they had removed the tumor and mum may need further observation but sadly that was not to be .Mum was diagnosed with Glioblastoma multiforme grade 4,on hearing this you suddenly become speechless,numb and so many thoughts run through your head and i'll always remember the consultant saying " so have you any questions " and Mum just asked is it terminal and the reply was we cant cure you we can only control it ,We were then informed of treatments ie Radiotherapy ,chemotherapy and a course of higher steroids .

We had a 6 week wait till the radiotherapy and chemo begun in this time mum was happy and mobile , considering her legs and feet had swollen badly from the steroids and walking became harder .

Tue 15th june Mum began her radio and chemo therapy , For some reason which we are still unsure why but the consultant began to reduce mums steroids from 8 mgs to 1 mg in the 6 week treatment .

During the 2nd week Mum had funny shaking ,jerking in her arm which she was very upset about and we didnt know what it was,On the Thursday when we saw the consultant he said it was a fit/seizure so was given 300mgs of phenytoin to control them.

3rd week into radio/chemo and the steroids reduced to 3mgs mum become more tired and was hardly eating the swelling had worsened and mums left leg was becoming red and very saw looking.We voiced our concerns to mums gp about the steroids and she advised that they should be higher and to speak to the consultant ,which would of been ok if we ever got to see the consultant we were always seen by a member of his team .

Once we had spoke to the consultant he agreed that mum should be on a higher level of steroids , so back upto 8 mg .

End of 3rd week and mum is now losing hair and unable to walk due to the swelling in feet and legs , we again raise this with our out of hours doc (not mums gp )who visited mum at her home and gave antibiotics saying mum had an infection , We were not happy with this and visited mums gp on Mon 5th July 2010 . Whilst waiting to go into the gps office mum had 2 minor fits where her hand would shake ,once in the office the gp immediately suggested mum should go to the Medical Assesment unit for a scan on feet and legs for suspected Deep Vain Thrombosis while mum was in ther she suffered 2 more minor fits so mums gp also recomended that mums Phyention should be increased .

We left the surgery and went home prior to going to the Hospital for scan .

While mum was sitting in the garden waiting to leave she suffered another minor siezure, this time it did not stop, It progressed into a full seizure, this has got to have been the most terrifying moment of my life,I held my mum while she was fitting telling her she was fine and the ambulance was on its way mum was now losing concoisness and had lay her in the recovery position once the ambulance arrived which was very quick they began work on mum to make her comfortable.Once in the ambulance mum had another major seizure which the ambulance crew and paramedic delt with very well on the way to hospital mum had another major fit ,this was the moment it hit me ,up until then i had handled everything well , been strong and had focused on learning everything we could on Cancer ,GBM ,steroids radio and chemo .

Once at hospital the A and E team were great and mum recovered well and was sent for a scan on her swollen legs and feet , Sure enough it was Deep vain thrombosis and infected so the penicillin was increased and also daily injections for 6 months clear the clots and thin the blood .We had been saying that her legs werent right and took 6 weeks to get someone to say it wasn't caused by the steriods

Mum has just completed week 4 of radiotherapy but has decided to stop the chemo and we all back her 100% with 3 different infections, she has the saw painful scalp,swollen feet , unable to walk for more than a few meters ..... well it just goes on as some of you will know only to well .

We never asked how long Mum has and she also would rather not know so we just carry on and take each day as it comes as this is such an aggressive Cancer, we always try to be up beat and positive especailly in front of mum as she is being so so brave and wish that if i ever had this terible cancer that i handle it with strength and dignity as our mum and so many others are .

We are putting our experience on here so it may help others who have learned they are starting or going through what we are going through .