The Last Post

Sadly Mum died early this morning soon after 5am, Christmas Day 2011. There are a lot of very upset people around because she touched the hearts of so many. She was a great woman who will be sadly missed. The hospital staff have continued to be absolutely brilliant and arrangements are in hand to thank them properly. Mum was very clear about her funeral arrangements and the plan is to cremate her and then have a private scattering of the ashes at a specific place on the Brecon Beacons, Wales. People will say that Christmas is the worst time to lose someone so very dear but we will think about her all through the year and mourn this terrible loss. God bless you Mum xx

Early morning call

Got a phone call from the hospital early this morning and went down to Wales, very near the end now. X

Still nothing to report...

Mum is still hanging in there with very little change. She remains a formidable lady and is clearly not ready to leave us just yet! This is the first year ever that we will not be able to taste her delicious Christmas Cake with beautiful marzipan and icing. So many memories of Christmas...

Wednesday evening

Some family have been to see Mum today and she drank quite a bit of offered water which is a good thing. She drank some yesterday whilst I was there but it wasn't much. Oh - and she drank some Cola as well!

I have just telephoned the hospital and there is no change. Sleep tight Mum xx

A visit from the Chaplain.

The Chaplain came to visit Mum this afternoon: all part of the palliative care I suppose...

Anyway, his opening line was, "Hello Sylvia, you are lucky to catch me today..."

An odd thing for a Vicar to say to a hospital patient with only days to live??@!

And who the hell is Sylvia?

An Epiphany.

Mum was wide awake this morning and after a teeth clean we chatted about a few things and showed her some black and white pictures from the old days. She smiled. Mum listened to a new Cd of her favourite songs and declared that 'Little things mean a lot' by Cliff Richard is her all time favourite!

Mum's Consultant came in for a chat and then we went outside for an update. There is no real change except a small tweak in the Syringe Driver to ease Mum's agitation.

Then came the epiphany. Mum has done well to out last all expectations and the Consultant asked if we had said goodbye and given Mum permission to go. Wow. This might well be the reason Mum is still with us.

How on earth does one decide what to do? Keep Mum in our lives as long as possible but prolong her suffering or say goodbye and let her go?

No change

There isn't anything to report today really. No change in Mum's condition but she is sleeping a lot. I guess this will be the way of it now.

Headed down to Wales early tomorrow morning so please god Mum, hang on. xxx

Mum's favourite songs

We have been playing CDs of Mum's favourite songs to her. It is lovely to see her tapping her feet and singing along. I thought I would share some with you. The videos will play through 5 songs automatically for you but you can click the little next button if you wish to move through:

How to brush your teeth...

We brushed Mum's teeth and after a few failed attempts to swill her mouth, Mum spat into the bowl but over shot half way across the bed. It was hysterical!

Saturday lunchtime

Come down to see Mum and I wouldn't have thought she could have lost anymore weight but she has! She is drinking though even though she hasn't eaten anything for ages.

She is in good spirit though and is laughing and telling us stories about the old days x

No change

Just telephoned the hospital and there is no change today. I am seeing that as a good thing! Off down to see Mum in the morning and can't wait to see here :-)

If any of you are visiting Mum please try and get her to drink lots of water or even Tesco Cola - she loves that!

Tesco Cola mind you!

A bit of a drip

Last night it was agreed that Mum should have a drip installed. She hasn't been eating or drinking so it was decided this was the best way to keep her fluids up. However, she had a cup of tea this morning! She always loves a morning cup of tea. :-) xx

Nothing to eat

Mum has declined any food today but she is drinking. I can't wait to get back down there again so hopefully she will hang on for a few days.

Night, night.

Just called the ward and Mum is sleeping soundly.
Sleep tight Mum, we all love you and are thinking about you all the time xx

Perky?

I am not at the hospital now for a few days but Mum is apparently quite bright today. She is currently on an End of Life Care Pathway. This policy deals with the care of a patient in the last days of their life. There are definitely pros and cons to this.

Mum has been reviewed by her Palliative Care Consultant today and will again on Thursday. There is no change in her care and no intervention in her condition. She is being made comfortable and I am told she is smiling. :-)

Happy Christmas

A kind of Christmas day

We have bought a small Christmas Tree and decorated it for Mum's hospital room. We bought her a television to watch for Christmas and she is very comfortable and festive.

These times are sad but beautiful and I will remember them forever.

Happy Christmas Mum x x x

Monday morning

We stayed with Mum until about 1.30 this morning; she was wide awake and we were dead on our knees. This morning, she is wide awake again and has slept well over night. She looks definitely better and I can't see anything bad happening anytime soon.

A joyful evening

Mum has been asleep a lot today but woke up around tea time when some more family came to visit. It was a joy to see Mum singing along to her CD of my piano playing.
She ate some porridge for breakfast and some ice cream for tea and she has been drinking plenty. Something tells us that she is not ready to go anywhere yet!

Sunday morning breakfast

Whilst Mum has been drinking plenty, she hasn't really eaten anything for over a week.

But this morning I fed her some porridge! And a cup of tea!! :)

1am Sunday morning

It is now in the early hours of Sunday morning and Mum has been wide awake on and off since lunch time. We are having lots of hugs and kisses.

Mum is starting to doze off again now and she seems to be dreaming a little. I hope her dreams are sweet and pleasant.

She asked us to stay until she falls asleep and then, she said, we must go and sleep ourselves.

Night, night Mum. I love you so much x x x 

The most precious days

The last week or so has seen a general decline in Mum's health. The cancer markers are still zero but the recovery from the bowel operation has been hard. She also managed to contract MRSA when she was in Prince Charles Hospital. This angers me but I am pleased she moved to Aberdare Hospital about a month ago.

Mum became a little confused on Monday and it got progressively worse over the week. Although it would be right to say that seems to have passed and she is just very weak now. We have been told that she only has a matter of days left with us. We are finding it very hard.

The current situation is that she has:
low potassium level  2.3
Creatonin 25
Urea 7.8
Gram Positive bacteria Cocci
Renal difficulties

So we are sharing our final times with her. Yesterday when I left she said, 'Ta Ra darling' like she would always have said. That will stay with me forever. And today when I kissed her, she held me in her arms and said, 'I love you.' That will never leave me. These are very precious moments.

Nikki painted Mum's toe nails like she always has them and Mum's face was a joy when she saw them; she looked so pleased.

Right now, we are sat in Mum's room listening to the Mothers' Day CD I recorded for her. Mum is dozing and tapping her feet along to the music.

The staff on Cynon Ward, Aberdare Hospital are just the very best. They are taking brilliant care of Mum. And us too!

It's been a while...

I haven't blogged for a couple of weeks mainly because not much has changed. Although now, Mum has moved to a different hospital for some rehabilitation before she starts her Chemotherapy again. We are concerned that she is staying in bed to much and the more she does that the more difficult it will be to move on. Hopefully the change of hospital will help with this. You can see from the picture that Mum has lost most of her hair now and really isn't looking her best. Fingers crossed. In fact, cross everything please!

Another week in hospital

We went to see Mum on Monday and she has now changed wards again. Her legs are quite puffy with fluid because she is largely in bed while she recovers. She has a few sores but hopefully these will go as she gets a bit more active. She gets some minor physio at the moment and I really hope the staff don't take their eye off the ball because she really does want to get up and about again.

She isn't really eating much and again this is a cause for concern. You will be able to see from the picture how much weight she has lost. But in herself, she seems quite perky. I think she was a bit down last week because she can't see an end to it all.

Post Op recovery

The operation was deemed a success. Mum's cyst was removed along with (sadly) part of her bowel. A colostomy bag has been fitted and she is likely to have to live with this now but at least she came through the whole thing. She is back on ward now and free for visitors.

She has had a major operation and sounds a little drowsy at different points in the day. But when she is wide awake she sounds almost back to normal.

Next visit is on Monday but we want to thank all the family and friends who have visited throughout this week.

The waiting game...

Mum is currently in theatre having an operation. The picture was taken in the theatre reception while we were waiting for her to go in.

Mum has a growth in her ...

Oooh she has just come out of the operation as I type. She is being taken straight into Intensive Care as a precautionary measure because it was a major operation.

More news in a while when I get the very latest information.

A phone call from the Consultant

Mum's Consultant has just telephoned me with some good news and some bad news: they have definitely kicked the cancer into touch for the time being and Mum has responded well to the Chemo. He wants to finish off the treatment but at a later date.

In the meantime, this lump they found is a benign diverticulitis growth that is on or near her bowel. They have had a meeting and plan to operate sometime next week and remove it. The operation is semi-major but hopefully it will lead to a good recovery.

Diverticulitis is a common digestive disease particularly found in the large intestine. Diverticulitis develops from diverticulosis, which involves the formation of pouches (diverticula) on the outside of the colon. Diverticulitis results if one of these diverticula becomes inflamed.

Source = Wikipedia

Nursing homes and more

We went to see Mum on Monday in hospital and she is looking much more comfortable. She has had an MRI scan and they have found a large lump on one of her ovaries. It is rather too close to her bowel.

It seems that an operation is now in the offing and whilst the Chemo has been put on hold, there always seems to be something new to worry about.

We also went to see three Nursing Homes and whilst one of them was a bit of a dive, the other two are both very good and suitable. They both have places so at least there is somewhere safe for Mum to go if she is released from hospital and is still unable to cope alone at home.

A turn for the worse

On Monday I took Mum for a CT scan and then we had a Consultant appointment. Her bloods were fine and although she is weak, they decided to press ahead with her Chemo on Thursday.

But then on Wednesday her Consultant received the negative results of Mum's CT scan and ordered her straight into hospital. The scan showed some pelvic abnormality and we don't know what this is as yet but it is possible that it is a secondary source of cancer. As a result of this, all Chemo treatment has stopped and she has been admitted to hospital for a full medical assessment.

In the meantime, her time has come to an end at her current Residential Care Home as they have a full house from next week. So Mum would have had to leave there in any event. That leaves us with locating a new home possibly with Nursing Care for when she leaves hospital. She is currently unable to cope alone at home.

N has been a massive support over all this time and has done a tremendous job is identifying new homes in the area suitable for Mum. She has made appointments for us to go and see three of them on Monday.

Calcium levels and Tourism

I am writing this whilst travelling to Tunisia.

I took Mum for a hospital appointment on Tuesday. It had been made for her because of a high calcium count.

The doctor was rather bemused by our presence though: it seems that everyone on Chemotherapy has a high calcium count. So it was a bit of a wasted trip but at least I learned stuff about calcium counts I didn't know before.

A normal calcium count would be 2.3 - 2.4 and Mum's is 2.68 so not massively high. A dangerous level would be 3.

I am abroad now until Thursday 22nd. Mum has a Consultation on Monday 19th and Cycle 4 of her Chemotherapy on Thursday 22nd.

So I am keeping everything crossed while I am away. Please do the same. X

Feeling a little better

Just spoke with Mum and she is feeling a little better now. She sounds much clearer in her speech and we think maybe the blood transfusion has helped. She still has a high calcium count though and we are seeing the Doctor on Tuesday about this.

A Frail Day

Mum is feeling a bit under the weather today. It is the middle part of the cycle so this is to be expected. But at least it isn't as bad as it might have been without the blood transfusion.

I feel so helpless being as far away as I am but I will be there on Tuesday to take Mum to her next appointment.

The picture is a view we could see from our old family house. We used to call it the full circle. It reminds me of home.

Blood transfusion

I went to see Mum on Sunday and Monday. We did some banking and sorted a few bits and bobs out. Mum is obviously very happy at the respite home and she is being well looked after. She is able to stay for six weeks and then we have to start paying. Social Services have been to see her and we are awaiting the costs. None of this matters though because the most important thing is that she is safe and happy.

Mum went for a blood transfusion yesterday and it seems her Calcium is still low. We have an appointment on Tuesday to find out more about this.

The picture was taken in a Tesco cafe where we dined heartily on Monday. It is good to see Mum eaten better now.

Cycle three

Well today is the third cycle of Chemotherapy. Mum is having between six and eight cycles so potentially this means we are half way through. We didn't get the blood test results because they were sent straight to the Chemo unit so presumably they are ok because the appointment hasn't been cancelled.

Fingers crossed.

Bloods

My brother has taken Mum to her pre-chemo blood test today. Hopefully that will be fine and the Chemo will go ahead as planned on Thursday. If it does and the Chemo lasts just six cycles instead of eight, then we are nearly half way through :-)

I am just saying all that because it makes me feel better to think the end is in sight....

Vincristine

** FANTASTIC NEWS ** The numbness from the Vincristine has gone in Mum's fingers! She just sent me a text demonstrating how well her fingers are feeling now!

I am so pleased :-))))

The Nursing Home

I went down to see Mum in the nursing home yesterday. It really is a nice place and she is very happy there. She is confined to her room because of the current infection risk but she should be able to go into the lounge today. It is a lovely place and the staff all seem very nice. The food looks great and I am pleased she is able to be provided with a good square meal that she doesn't have to worry about making.

She has found a place that does meals on wheels for when she gets home and it is just £2 a day. Bargain!

The plan now is for her to recover a bit in the nursing home before her 3rd cycle of Chemo which starts on Thursday next week.

Intermediate Care

Sadly Mum's dizzy spells got worse yesterday and she had a fall in the bathroom. Thank god she wasn't hurt but the Doctor has decided to admit her for Intermediate Care. He reckons Mum isn't coping as well as she thinks. She has gone for a few days rest at a Nursing Home nearby and she seems very happy there. She has her own room and nursing care to hand so hopefully she will feel better from it.

I can't remember who told Mum this but she believes that she is not allowed to eat chocolate and hasn't done so for a couple of months. I mentioned this to my Consultant friend today who thinks that is a load of tosh. So I think Mum needs some of her favourite chocolate to hand, this will obviously increase her blood sugar and may even stop her feeling dizzy!

More G-CSF

Just spoke to Mum and she is a bit shaky again but the District Nurse should be along shortly with the second G-CSF injection. One more tomorrow and then hopefully Mum's Bloods will be back up and running properly.

The blood count has to be close to normal or they won't do the Chemo, so hopefully by next week everything will be ready to go for Cycle 3.

Friday's Consultancy

We met with Mum's Consultant again on Friday for the mid-point between cycles. They did another blood test as follows:

Haemoglobin 11.5 (previous 12.6)
Whites 0.4 (previous 11.5)
Platelets 188 (previous 308)
Neutrophils 0.1 (previous 8.5)

So you can see a marked drop in the count. This is predictable at the mid-way point between cycles and is why Mum becomes at risk of infection. They have prescribed more G-CSF injections to get the blood count back up.

The good news however is that all the lumps have gone and even have two Chemo cycles, Mum has obviously responded well.

An over-night stay

Driving down to Wales again later for an over-night stay and then an appointment first thing tomorrow with the Consultant.

From the sounds of things, Mum is feeling a little worse for away again but as we are mid-cycle, it is to be expected. Hopefully the bloods will show nothing out of the ordinary tomorrow.

Fingers crossed.

Ciprofloxacin starts again today

Mum has started to feel dizzy again and we are not sure if that is just the Chemo or whether starting the Ciprofloxacin today has that effect.

In any event, she is taking it easy and staying in. I get ever so worried when she feels dizzy like this.

After the second Chemo cycle

Everything seemed to go well yesterday and Mum says she is feeling ok. She is probably rattling with all the tablets she is taking but apart from feeling dizzy and unsteady on her feet, they seem to be working.

The antibiotics start again on Monday and then we mark time again for three weeks. But at least now we know what to expect and hopefully there will be no more surprises.

Another Consultancy Meeting

Yesterday we went back to see the Consultant before the second Chemo cycle starts. The results of the blood test were as follows:

Hemoglobin 12.6
Whites 11.5
Platelets 308
Neutrophils 8.5

Apparently Mum's blood is healthier than mine!

One of the side effects of Mum's particular Chemotherapy is numbness and she has experienced some on the tips on her fingers. This is caused by Vincristine. As a result of that, the next cycle will be a different mix but again a side effect will be bone marrow suppression. It is like a game of Kerplunk!

Mum has now got a new batch of drugs to take:

Prednisolone - steroids (Start am Thurs 11th August)
14 tablets five days

Fluconazole - to prevent thrush (Start am Thurs 11th August)
1 tablet fourteen days

Ondansetron - anti sickness (Start pm Weds 10th August)
1 tablet twice a day for five days

Omeprazole - to reduce stomach acid and diarrhoea (Start am Thurs 11th August)
1 tablet 7 days

Ciprofloxacin - antibiotics (Start am Mon 15th August)
1 tablet 14 days

We have decided to let the Consultant go on holiday for a few days as he has been such a good chap. So the next appointment with him is Friday 19th August 2011 10am. But the next Chemo is Thursday 11th August 2011.

Another mobile phone post!

Mum has just gone in for her blood test before we see the Consultant. So fingers crossed that all is well and nothing prevents her second cycle of Chemotherapy on Thursday.

We are going to the local Wetherspoons (if that is how you spell it?) for luncheon. We have tried the one where Mum lives and it is fine but the local one here is all on the flat. Much easier for us as Mum is still a bit shaky on her feet.

A bit more upbeat

Mum sounds much happier today. Hopefully the white blood cell count has risen and she is on the up again; we will find out on Monday when we see the Consultant again. Then, the Chemo regime starts again on Thursday with cycle two.

Fingers crossed!

Hair today and gone tomorrow

Mum woke up this morning and left a lot of hair on the pillow. She said that it is coming out by the clump now when she brushes. She seems quite pragmatic about the whole thing though and whilst there is the offer of a posh wig, she seems happy to stay as she is and wear a head scarf.

Mum says she wants to grow back a red head!

Chemotherapy often causes hair loss otherwise known as alopecia. This is because the cells in the hair follicles grow fast and chemotherapy damages fast growing cells. (see what is chemotherapy). Hair loss is not permanent and it will grow back once your treatment has ended. Not all drugs cause hair loss - Some just cause thinning and others cause dramatic hair loss including the body hair and eye brows. Furthermore, different people have different tolerances to the drugs. Occasionally, some people loose their hair when it is not expected and sometimes in other cases no hair loss occurs when it is expected. (See table below for a list of chemotherapy drugs likely to cause hair loss)

Hair loss can start any time from after the first few days after chemotherapy to within a few weeks. However, your hair will grow back once treatment is complete although to start with your hair will grow back very fine, very like a baby's hair. Your clinic nurse can arrange for you to have a wig before your treatment starts. After three to six months you should have regained a full head of hair although it may be slightly different to before your treatment in terms of colour and texture.

Source: Cancer net

One week before cycle two

All the G-CSF injections are done now and the word is that by the weekend Mum should start feeling a bit better. Then we are into the second cycle of Chemo and we start over.

It is a tough thing but there is no avoiding it. But the end result will be worth the struggle.

I love you so much Mum xx

G-CSF Injections

The District Nurse came yesterday as promised and is due today to give the final injection. Hopefully this will bring the white blood cell count back up ready for the Chemo next week.

We have an appointment with the Consultant again on Monday for a blood test etc and I guess will we know then if things are proceeding as planned for Chemo cycle 2.

Mum says she is still feeling a bit frail but she is taking it easy.

Another Consultancy

We went to the hospital yesterday for another blood test and meeting with the Consultant. He really is an excellent chap and highly recommendable.

Mum started with three lumps: one on her neck and two under each armpit. The neck lump has gone, one armpit lump has gone and the remaining lump has reduced by 50%. Excellent news!!

As predicted, the white blood cell count is very low. This was expected in the middle week of the cycle which is why Mum is susceptible to infection. The consultant has given her a G-CSF injection and the District Nurse will give her another today and again tomorrow. This will raise the white blood cell count in time for Chemo next Thursday.

G-CSF means granulocyte-colony stimulating factor

G-CSF is a special type of protein called a growth factor. It stimulates the bone marrow to make white blood cells. The bone marrow is a spongy material inside the bones where all our blood cells are made.

Growth factors are made naturally in the body. They can also be made outside the body and used as treatments.

There are three different types of G-CSF:

lenograstim (Granocyte®)
filgrastim (Neupogen®, Nivestim®, Ratiograstim®, Zarzio®)
pegylated filgrastim (Neulasta®).

These treatments all work in similar ways.

Source - Macmillan

Ps. Pleased my Mobile phone post worked!

Sat in the waiting room

This is more of a test to see if I can post to the blog from my mobile...

Mum has gone for her blood test and then we will be able to see the consultant.

She is looking a lot less shaky now but has lost a lot of weight.

Much more later.

Ciprofloxacin

Mum thinks it is the Ciprofloxacin that is causing her dizziness and we will check this on Monday with the Consultant. She has to take one tablet twice a day and she feels that when she is in between doses, she feels better.

At this stage in the cycle, Mum is at risk of infection and this drug is prescribed to reduce that risk.

Ciprofloxacin (INN) is a synthetic chemotherapeutic antibiotic of the fluoroquinolone drug class^. It is a second-generation fluoroquinolone antibacterial. It kills bacteria by interfering with the enzymes that cause DNA to rewind after being copied, which stops synthesis of DNA and of protein.

Source - Wikipedia

Not very good today

Just spoken with Mum on the phone and she is feeling very dizzy and shaky when she gets up. It sounds like she isn't eating much either. I am worried that even what she tells me is minimised. Anyway, she is staying in bed at the moment and has some walking sticks to hand if she gets up.

I don't know if this is normal; as we are in the first cycle, everything is all still new. I will have loads of questions for the consultant on Monday!

Two of Mum's friends are visiting Sunday and I have sent her a copy of my latest CD so hopefully things will cheer up for her. Kimberly is back from is holiday tomorrow as well so hopefully he will get chance to pop in too.

Diet

Mum is still feeling a bit shaky and it sounds like she isn't eating much. This worries me a bit and I am trying to encourage her to eat and drink plenty. This was stressed at the last meeting with her consultant. She is moving into the 'high risk of infection' part of the cycle now so it is important she stays healthy.

I am going down again on Monday to take her to the next routine appointment and hopefully that will go well. I am telephoning her two or three times a day so if anything is needed I can respond quickly.

Toilet humour?

Just been on the phone with Mum and there is relief in the house... The motions are in motion again and the toilet has been used several times!

After the first Chemo cycle

Mum had her first Chemo treatment on Thursday 21st July 2011. I went with her to see her consultant haematologist Dr. W Mumar-Bashi yesterday, This was a routine appointment after her first treatment.

The news was encouraging. It was previously suggested that she also had Myeloma (which is not easily treated) and it has now been confirmed that she has High Grade Large B Cell Non-Hodgkins Lymphoma. This is much more easily treated and even after the first Chemo, her lymph nodes have reduced.

She had a bone marrow biopsy and this proved clear. Her blood count is good for now but this will probably drop over the next few days. She still has a high calcium level at 2.9 and the reason for this is currently unknown. If it doesn't reduce, she will be further referred to an Endocrinologist.

She finished her steroids yesterday and is a little constipated so she has been prescribed Senokot (a stimulant) and Magnesium Hydrozide (a softener) to help her with her bowel movements.

She is also on Ondansetron to help prevent sickness and this seems to be working as she hasn't actually been sick yet.

As her blood count starts to drop, she will be at risk of infection and so to protect her she is taking Ciprofloxacin.

The beginning

Mum has been ill for a few months and then she started to feel a bit better. We all took her for a birthday meal on 22nd June 2011 and all seemed well.

She had been referred by her GP to a consultant haematologist Dr. W Mumar-Bashi. He had received the results of her CT scan and she has the following challenges:

• Lymphoma.

• A small cyst on her liver - but this is not uncommon
   
• An ovary cyst which will be the subject of an ultrasound scan this week.

• An hiatus hernia which is currently under consideration.

The prognosis is this:

There is a 75% success rate in the Chemotherapy Treatment.
If successful, there is then a 40% chance that she will not relapse within 5 years.