It saddens me to say that we lost Marian at 0840 this morning.
Marian had told the nurses that she wanted to speak to me early this morning so I got a call at 0530. I got through to Elgin by 0600 and then summoned my daughter & Marians mum. All 3 of us were with her when she passed away. Marian has suffered enormously for a long time and the pain that she has been in over the past few days has been excruciating. At least her suffering is now over.
It had been Marians intention to add lots of articles to this blog about how she was feeling and the emotions that she was dealing with while fighting this cancer, but alas that is no longer possible. Right now I'm having difficulty in seeing a future without her.
Rest in peace my angel xxx
Sunday, 25 July 2010
Friday, 23 July 2010
Back in hospital
Marian started to get some severe abdominal pains on Tue afternoon (20th Jul) and the GP had her admitted very quickly suspecting an intestinal blockage, but that turned out not to be the case. A CT scan on Thu 22nd Jul revealed that Marians pancreas is inflamed.
Apparently there is no clinical treatment for pancreatitis other than treating symptoms and pushing lots of fluids. This is made difficult with Marian because her veins are resisting IV access and even although the medical staff can get a cannula inserted, it just blocks up. So they are achieving some fluid input through a drip simply inserted under the skin.
The source of the inflamed pancreas was suspected to be that her cancer had spread, but the results of the scan do not show any additional tumours so they suspect that the inflammation is due to the extremely high doses and quantities of medication that Marian takes.
She is a little more comfortable but still in a lot of pain.
Apparently there is no clinical treatment for pancreatitis other than treating symptoms and pushing lots of fluids. This is made difficult with Marian because her veins are resisting IV access and even although the medical staff can get a cannula inserted, it just blocks up. So they are achieving some fluid input through a drip simply inserted under the skin.
The source of the inflamed pancreas was suspected to be that her cancer had spread, but the results of the scan do not show any additional tumours so they suspect that the inflammation is due to the extremely high doses and quantities of medication that Marian takes.
She is a little more comfortable but still in a lot of pain.
Friday, 16 July 2010
Really bad news
Marian had her x-ray on Wed and we went to see the Oncologist today.
The cancer has resisted chemo & radiotherapy even though the chemo was the favoured combination for Sarcoma and the radiotherapy was an extremely high dose. It transpires that the majority of MPNSTs (in adults) do not respond positively to any of the cancer treatments currently available.
Marian will continue to be seen by the Oncologists fortnightly, but from here on in its palliative care only !
To say we are devastated doesn't even come close. Marian is determined to not give in without a fight though. We are all very proud of her.
The cancer has resisted chemo & radiotherapy even though the chemo was the favoured combination for Sarcoma and the radiotherapy was an extremely high dose. It transpires that the majority of MPNSTs (in adults) do not respond positively to any of the cancer treatments currently available.
Marian will continue to be seen by the Oncologists fortnightly, but from here on in its palliative care only !
To say we are devastated doesn't even come close. Marian is determined to not give in without a fight though. We are all very proud of her.
Thursday, 15 July 2010
White Egret Orchid
Marian is very proud that she managed to grow a White Egret Orchid from seed. There were 4 originally, but only 2 developed into plants. Unfortunately one of them just decided one day to dry up so then there was one !
Monday, 12 July 2010
And now some gardening
Felt like a bit of gardening today. Might as well do these things while I have the energy. Thank you to all the people that have been keeping my plants alive in the greenhouse since I was first admitted to hospital.
They have all been potted up or put into planters now and have them sitting under the front window. Butch was never too far away, wanting to investigate underneath everything I moved. He really does like chasing spiders and all sorts of other creepy crawlies; daft dog !
Felt like a bit of baking
Its been absolutely ages since I baked anything and having a bit of a sweet tooth, well a lot of a sweet tooth, I decided to do some baking while I had a bit of energy.
A recipe for Blondies caught my eye in the Peoples Friend recently so I decided to give them a go yesterday.
A recipe for Blondies caught my eye in the Peoples Friend recently so I decided to give them a go yesterday.
Saturday, 10 July 2010
What we know so far
Diagnosed with Metastatic Sarcoma (MPNST)
I have a Soft Tissue Spindle Cell Sarcoma (21 May 10). On first admission Dr Bissett (ARI) confirmed that this was in fact a Malignant Peripheral Nerve Sheath Tumour (MPNST). Basically this is a Neurofibromatosis tumour that has turned malignant. The MPNST is on my chest wall and has metatastasised (spread) to my lungs.
First attempt at chemo with Doxorubicin & Ifosfamide didnt work.
Since had 5 'fractions' of Radiotherapy, now waiting to see what effect that had.
Primary MPNST is a staggering 10cm. Not sure how many lung tumours I have but they have been described as 'several' and are 1-2cm.
I have a Soft Tissue Spindle Cell Sarcoma (21 May 10). On first admission Dr Bissett (ARI) confirmed that this was in fact a Malignant Peripheral Nerve Sheath Tumour (MPNST). Basically this is a Neurofibromatosis tumour that has turned malignant. The MPNST is on my chest wall and has metatastasised (spread) to my lungs.
First attempt at chemo with Doxorubicin & Ifosfamide didnt work.
Since had 5 'fractions' of Radiotherapy, now waiting to see what effect that had.
Primary MPNST is a staggering 10cm. Not sure how many lung tumours I have but they have been described as 'several' and are 1-2cm.
Going home after my first Radiotherapy
Final day of RT (for now) and heading home (24 Jun 10) for a while. I've been in hospital for almost 6 weeks so its going to feel a bit weird.
Got quite a collection of drugs, including the usual suspects of Paracetamol, Ibuprofen, Gabapentin and a fairly high dose of Oxycodone for breakthrough pain.
I've had lots of contact with the MacMillan team and they have been fantastic at sorting out my needs. I have a zimmer, a wheeled walker, sticks, a mattress lifter and a wheelchair.
My MacMillan nurse sorted out access to the disabled Blue Badge scheme for me very quickly and also got me a referral to The Oaks palliative care centre in Elgin.
Got quite a collection of drugs, including the usual suspects of Paracetamol, Ibuprofen, Gabapentin and a fairly high dose of Oxycodone for breakthrough pain.
I've had lots of contact with the MacMillan team and they have been fantastic at sorting out my needs. I have a zimmer, a wheeled walker, sticks, a mattress lifter and a wheelchair.
My MacMillan nurse sorted out access to the disabled Blue Badge scheme for me very quickly and also got me a referral to The Oaks palliative care centre in Elgin.
Chemo didnt work
I was transferred from Dr Grays, Elgin back to ARI on the 16th Jun 10. As far as I was concerned, this was going to be to kick off my 2nd chemo treatment. I was taken for a scan the following day and while there was 'measured/marked up' for Radiotherapy treatment (RT).
Now at this point, even though I had apparently been told by the Oncologist and the Dr that the Chemo hadn't worked, I thought I was just getting a break from it, given my bad reaction first time round.
My RT started on Fri 18th Jun and was scheduled for 5 'fractions' but the RT dept dont do weekends so this was going to be Fri, Mon, Tue, Wed, Thu ! I was quite nervous going into the first RT for my chest was covered in permanent pen with various markings which looked like 'cross-hairs' and 'X marks the spot' ! It turned out that almost all of these markings were to get me correctly aligned on the table so that the tumour would be sitting in exactly the same position every time I was treated. It takes longer to get into the treatment room and get positioned than to actually get the treatment.
I think it was on the Wed afternoon after a conversation in the hospital cafe that I finally realised that the chemo hadn't worked ! I was really upset and felt quite stupid for not having understood what had been said to me after the scan last week. I think the staff all thought that I was coping with the news admirably, but the fact of the matter was, I didn't know !
Well, this was to be my last night in ARI Ward 17 for now, with my final RT the following day. Bed shortages meant that I was asked to move down to Ward 16 because another patient need my bed, so reluctantly I agreed. That said, after I got settled in on Ward 16 I discovered that all the staff were just as nice and you got 2 evening hot drinks, one at 8pm and another at 10pm, both with cakes, Mmmmm !!!
I made a visit back up to Ward 17 to say goodbye to a few of the other patients and got quite a surprise to find the lady that had been opposite me for a few days and that was supposed to have been going home, was now in my old bed.
Now at this point, even though I had apparently been told by the Oncologist and the Dr that the Chemo hadn't worked, I thought I was just getting a break from it, given my bad reaction first time round.
My RT started on Fri 18th Jun and was scheduled for 5 'fractions' but the RT dept dont do weekends so this was going to be Fri, Mon, Tue, Wed, Thu ! I was quite nervous going into the first RT for my chest was covered in permanent pen with various markings which looked like 'cross-hairs' and 'X marks the spot' ! It turned out that almost all of these markings were to get me correctly aligned on the table so that the tumour would be sitting in exactly the same position every time I was treated. It takes longer to get into the treatment room and get positioned than to actually get the treatment.
I think it was on the Wed afternoon after a conversation in the hospital cafe that I finally realised that the chemo hadn't worked ! I was really upset and felt quite stupid for not having understood what had been said to me after the scan last week. I think the staff all thought that I was coping with the news admirably, but the fact of the matter was, I didn't know !
Well, this was to be my last night in ARI Ward 17 for now, with my final RT the following day. Bed shortages meant that I was asked to move down to Ward 16 because another patient need my bed, so reluctantly I agreed. That said, after I got settled in on Ward 16 I discovered that all the staff were just as nice and you got 2 evening hot drinks, one at 8pm and another at 10pm, both with cakes, Mmmmm !!!
I made a visit back up to Ward 17 to say goodbye to a few of the other patients and got quite a surprise to find the lady that had been opposite me for a few days and that was supposed to have been going home, was now in my old bed.
Sunday, 4 July 2010
After my first chemo
I arrived back in Dr Grays on the 1 Jun and was put straight into a single room. The hope was that I'd only be here a few days and then get home. Over the next few days my hair started to come out pretty quickly. A young student nurse on placement in Ward 7 showed me great kindness while my hair was falling out, by combing it through for me and discretely disposing of it. You know who you are; thank you very much :-)
I was in Dr Grays for another week having ended up running high temperatures and being treated for infection. As part of the infection control my room was placed under isolation. This meant that my daughter, who had a festering cold, could not come in to see me. Because Colin was in the same house as her, when he came in, he had to wear a mask. Part of my white cell count became unmeasurable for a time, but over a few days it picked up again fairly quickly until I finally got told that I could go home on the 9th Jun.
I was discharged on the Wed evening, with a truck load of prescriptions and really enjoyed being home in my own house and sleeping in my own bed having been in hospital for 4 weeks. I got through Wed night, albeit needing painkillers every couple of hours, reasonably well. Thu night was a different matter and I seemed to have an increased temperature with my skin being very hot to touch and suffering from some very dizzy spells. After a call to NHS 24 and a doctor coming to see me I was back in an ambulance and on my way back to Dr Grays around 2am on the Fri morning.
Initially I was admitted into the High Dependancy Unit, where I was surrounded by high tech equipment and seemed to be hooked up to all of it ! A head CT scan revealed that I did in fact have a brain !!! but there was a small swelling on the brain which would explain my dizziness. This was described as encephalopathy.
Later in the day though I was moved back to Ward 7, but into general population not a side room. Over the weekend I had a tumble while on the way to the loo in the middle of the night and fell against another patients bed with enough force to move the bed a few feet across the room. That was me now confined to bed and only allowed out of bed with assistance.
It was about now that my hair was really coming out in clumps and I decided that it was time for what was left to go ! Colin came in that evening with his clippers and the remaining few tufts were gone. The nurses said that they could probably organise a queue at the bathroom door for haircuts, but Colin declined ;-) I was now the proud owner of several styles of head gear thanks to gifts from friends & family.
I was hoping to maybe get a day back home before my next visit to ARI, but that was not to be. On the 16th Jun I was transferred back to ARI.
I was in Dr Grays for another week having ended up running high temperatures and being treated for infection. As part of the infection control my room was placed under isolation. This meant that my daughter, who had a festering cold, could not come in to see me. Because Colin was in the same house as her, when he came in, he had to wear a mask. Part of my white cell count became unmeasurable for a time, but over a few days it picked up again fairly quickly until I finally got told that I could go home on the 9th Jun.
I was discharged on the Wed evening, with a truck load of prescriptions and really enjoyed being home in my own house and sleeping in my own bed having been in hospital for 4 weeks. I got through Wed night, albeit needing painkillers every couple of hours, reasonably well. Thu night was a different matter and I seemed to have an increased temperature with my skin being very hot to touch and suffering from some very dizzy spells. After a call to NHS 24 and a doctor coming to see me I was back in an ambulance and on my way back to Dr Grays around 2am on the Fri morning.
Initially I was admitted into the High Dependancy Unit, where I was surrounded by high tech equipment and seemed to be hooked up to all of it ! A head CT scan revealed that I did in fact have a brain !!! but there was a small swelling on the brain which would explain my dizziness. This was described as encephalopathy.
Later in the day though I was moved back to Ward 7, but into general population not a side room. Over the weekend I had a tumble while on the way to the loo in the middle of the night and fell against another patients bed with enough force to move the bed a few feet across the room. That was me now confined to bed and only allowed out of bed with assistance.
It was about now that my hair was really coming out in clumps and I decided that it was time for what was left to go ! Colin came in that evening with his clippers and the remaining few tufts were gone. The nurses said that they could probably organise a queue at the bathroom door for haircuts, but Colin declined ;-) I was now the proud owner of several styles of head gear thanks to gifts from friends & family.
I was hoping to maybe get a day back home before my next visit to ARI, but that was not to be. On the 16th Jun I was transferred back to ARI.
Move to ARI & first chemotherapy
My consultant at Dr Grays broke the news of the biopsy findings. He explained that the results showed that this was 'most likely' a Spindle Cell Sarcoma and that there were also evidence of tumours on both lungs, that at this stage could not be confirmed as cancerous.
Within a matter of days I was transferred to Aberdeen ARI Oncology (The ANCHOR unit). I was admitted on the 25th May (my 42nd birthday) and was scheduled to start a combination treatment of Chemotherapy the following day. As a surprise, during the admission process the staff realising it was my birthday, placed a request with the kitchen and a small birthday cake appeared that evening. To my horror, the other patients in the ward and all of their visitors insisted on singing me Happy Birthday !
So, the following morning on the 26th May (our 20th wedding anniversary) I started my chemotherapy on a combination of Doxorubicin and ifosfamide which was administered through a cannula in my arm. This was carried out over a 48hr period and followed by another drug called Mesna which helps protect the bladder and kidneys from the effects of the Ifosfamide.
On the evening of the 2nd day of treatment (Thu 27th May) I must have slept through the entire evening visiting session. I found out later that my husband, mother and brother had all been sat with me for a couple of hours but I had no recollection of them being there.
The events of the following 24 hrs are from what I've been told as I have absolutely no recollection of anything until late Fri afternoon. At some point in the late evening or maybe very early morning I took a turn for the worse. Another patient in the ward alerted the staff (by buzzer) that I was in distress and very quickly a team of doctors and nurses rallied to my bedside. I'm told that I had multiple neurological seizures that looked like a severe epileptic fit. At this point contact was made with my husband and my mother (around 0230-0300) and it was suggested that they should make their way to the hospital as a matter of urgency because my condition was described as critical but stable. The doctors were unsure at this stage if I was going to last the night !
On the scale of response, from Fully Alert, Alert to Voice, Alert to Pain and unresponsive I was at the bottom of the scale being totally unresponsive. Colin & my mum left the hospital a little before 0700 and set off for their accommodation seeing that I was now stable and a little more responsive.
Amazingly by afternoon visiting, I was more alert and had been moved to a single room. When Colin & my mum came in they were pretty surprised to see me quite so alert given the events of the early hours. I felt very confused of why I'd had a change of room and why I had many additional 'fixtures' on me, especially a cannula on my foot and ECG sensors over my chest.
I felt a bit alienated in a single room at the end of a corridor but the staff did make more frequent checks and it meant that I now had my own fridge that I could stash my supply of ice lollies in ! I spent the weekend in the single room before being moved back to my original bed space on the Mon and then was discharged back to Dr Grays in Elgin on Wed 1 Jun 2010.
Within a matter of days I was transferred to Aberdeen ARI Oncology (The ANCHOR unit). I was admitted on the 25th May (my 42nd birthday) and was scheduled to start a combination treatment of Chemotherapy the following day. As a surprise, during the admission process the staff realising it was my birthday, placed a request with the kitchen and a small birthday cake appeared that evening. To my horror, the other patients in the ward and all of their visitors insisted on singing me Happy Birthday !So, the following morning on the 26th May (our 20th wedding anniversary) I started my chemotherapy on a combination of Doxorubicin and ifosfamide which was administered through a cannula in my arm. This was carried out over a 48hr period and followed by another drug called Mesna which helps protect the bladder and kidneys from the effects of the Ifosfamide.
On the evening of the 2nd day of treatment (Thu 27th May) I must have slept through the entire evening visiting session. I found out later that my husband, mother and brother had all been sat with me for a couple of hours but I had no recollection of them being there.
The events of the following 24 hrs are from what I've been told as I have absolutely no recollection of anything until late Fri afternoon. At some point in the late evening or maybe very early morning I took a turn for the worse. Another patient in the ward alerted the staff (by buzzer) that I was in distress and very quickly a team of doctors and nurses rallied to my bedside. I'm told that I had multiple neurological seizures that looked like a severe epileptic fit. At this point contact was made with my husband and my mother (around 0230-0300) and it was suggested that they should make their way to the hospital as a matter of urgency because my condition was described as critical but stable. The doctors were unsure at this stage if I was going to last the night !
On the scale of response, from Fully Alert, Alert to Voice, Alert to Pain and unresponsive I was at the bottom of the scale being totally unresponsive. Colin & my mum left the hospital a little before 0700 and set off for their accommodation seeing that I was now stable and a little more responsive.
Amazingly by afternoon visiting, I was more alert and had been moved to a single room. When Colin & my mum came in they were pretty surprised to see me quite so alert given the events of the early hours. I felt very confused of why I'd had a change of room and why I had many additional 'fixtures' on me, especially a cannula on my foot and ECG sensors over my chest.
I felt a bit alienated in a single room at the end of a corridor but the staff did make more frequent checks and it meant that I now had my own fridge that I could stash my supply of ice lollies in ! I spent the weekend in the single room before being moved back to my original bed space on the Mon and then was discharged back to Dr Grays in Elgin on Wed 1 Jun 2010.
First Signs of Cancer
In early May 2010 I had a combination of CT & MRI Scans and a chest X-Ray which I thought was fairly routine; well for me anyway ! These had all been arranged to be carried out on the same day to avoid lots of travel. Any thoughts I then had of all this lot being 'routine' were dashed when on the 7th May 2010, within 24hrs, my GP was knocking at the door and invited my husband to follow him up, because he had some news. The startling thing was, that my husband had only just come off the phone to him a few minutes earlier on a different topic and having established that we were both at home, came straight round.
The news was hard to listen to, but although they only had a preliminary report the medical professionals were pretty confident that they were dealing with a cancerous tumour. There was really not much more information available at this point and although the GP was quite happy to answer any questions ..... what on earth do you ask ? Worst thing was, that it was a Fri afternoon and we knew that there would be nothing more until at least Mon !
So it was now a case of waiting to be called to see an Oncologist and have biopsies taken to prove the imagery findings.
Levels of pain continued to increase over the weekend and had to get NHS 24 out several times, but by Wed 12th May the GP was back and had me admitted. Now I think that an appointment for an oncology appointment had arrived for maybe the following week, but that was all little superfluous now !
I had an x-ray on admission, the following day a further pain-block and the first biopsies were taken on Fri 14th May. This led us into another weekend of waiting. News back from the lab on the Monday was that the results of the first biopsies were inconclusive, so a further set would have to be taken. This happened fairly quickly (on the Tue) but there was now a risk that we would have to wait through the weekend again. There was no need however, because news came back on Friday 21st May ........ I had cancer !!!
The news was hard to listen to, but although they only had a preliminary report the medical professionals were pretty confident that they were dealing with a cancerous tumour. There was really not much more information available at this point and although the GP was quite happy to answer any questions ..... what on earth do you ask ? Worst thing was, that it was a Fri afternoon and we knew that there would be nothing more until at least Mon !
So it was now a case of waiting to be called to see an Oncologist and have biopsies taken to prove the imagery findings.
Levels of pain continued to increase over the weekend and had to get NHS 24 out several times, but by Wed 12th May the GP was back and had me admitted. Now I think that an appointment for an oncology appointment had arrived for maybe the following week, but that was all little superfluous now !
I had an x-ray on admission, the following day a further pain-block and the first biopsies were taken on Fri 14th May. This led us into another weekend of waiting. News back from the lab on the Monday was that the results of the first biopsies were inconclusive, so a further set would have to be taken. This happened fairly quickly (on the Tue) but there was now a risk that we would have to wait through the weekend again. There was no need however, because news came back on Friday 21st May ........ I had cancer !!!
Symptoms
I have had many NF tumours removed over the years, ranging from the size of a small pea up to 5 cm. In April 09 I had 2 small tumours removed from my right side, just below breast height. This operation gave its own complications, because I then experienced a haematoma in the breast and I had 1.5 pints of blood drained off my right breast.
Subsequent to this NF tumour removal and then the draining of the haematoma I began to experience a lot of discomfort and swelling just below the site where the lump was removed.
Over the next 12 months I had many scans and check ups but still the pain continued to worsen. This was accompanied by an ever increasing dosage of pain killers which in their own right were so debilitating that my quality of life was pretty poor.
I guess that the thought was that the pain I had been experiencing was somehow related to the lump I'd had removed or maybe from the clean up of the haematoma afterwards. I was seen by a Pain Management Team on quite a few occasions and had several 'nerve block' procedures. Although the nerve blocks appeared to work at the time, their effects never lasted more than a few days.
Subsequent to this NF tumour removal and then the draining of the haematoma I began to experience a lot of discomfort and swelling just below the site where the lump was removed.
Over the next 12 months I had many scans and check ups but still the pain continued to worsen. This was accompanied by an ever increasing dosage of pain killers which in their own right were so debilitating that my quality of life was pretty poor.
I guess that the thought was that the pain I had been experiencing was somehow related to the lump I'd had removed or maybe from the clean up of the haematoma afterwards. I was seen by a Pain Management Team on quite a few occasions and had several 'nerve block' procedures. Although the nerve blocks appeared to work at the time, their effects never lasted more than a few days.
Introduction
My name is Marian and I have suffered from Neurofibromatosis (NF) for the past 30 years. While this condition only affects a minor percentage of the population, a NF tumour is normally benign. Only an even smaller percentage of those people suffering from NF end up with malignant tumours.
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