Extreme Muscle pain in back

Since leaving the hospital a couple of weeks ago (and since the change of pain medication), I've been suffering with a really painful back (yet again). It is on the right hand side and appears to be muscle pain which I think is made worse when I drive, especially changing gears. I have tried to avoid driving for the last week or two because of the pain in my back but there are times when this is difficult and needs must.

The pain has reached unbearable heights in the last few days and I just don't know what to do. The pain medication I'm currently taking is helping with any bone pain but it is not touching the muscle pain in my back. I suppose the pain level is slightly better in the late afternoon but once I've slept I can barely move in bed. I worried Ellie and Freddie this morning because I asked Ellie to help me get up out of bed and I screamed out in pain and started crying. Freddie said he felt sick last night and this morning and it would be so easy to let him stay off school but fortunately Annie was picking him up for me. It's not fair on the kids to see me suffering like this as it really does upset them. I'm not sure what to do about it at the moment but I'm seeing the District Nurse this morning as usual for my dressing change on my armpit which seems to be healing very slowly but going in the right direction. I've also got to speak with Sue Ryder this morning about arranging transport for tomorrow so hopefully I'll get some attention to the pain.

Wound still weeping during the night

Although I'm having the dressings changed twice a day at the moment the wound is still managing to leak out during the night which means I'm constantly changing my clothes which is a nuisance. My back is still hurting a great deal, especially over night. When I spoke to the MacMillan Nurse yesterday she said it was probably because we had stopped the Diclofenec. The new pain medications are really helping with the hip pain, of which I haven't really got any but they are not doing anything for the back ache and they are also giving me constipation so I'm not having a good time with it at the moment. I'm also feeling quite sick so have to take the anti-sickness tablets regularly too.


The District Nurse came to clean my wound and reapply new dressing. She said she noticed that the wound had started hardening a little. This afternoon she rang to say that she had spoken to the Doctor and they had advised to start me on a course of antibiotics just in case anything is brewing. The only pain is that they do give me a very bad stomach but I need to keep the wound clean and free of infection otherwise it really won't heal very quickly.

Onc appointment with Dr Barrett

Saw Dr Barrett today so that she could keep an eye on me after my admission to hospital last week. She said that we wouldn't be considering any chemo until the infection in my armpit had settled if not totally healed. She did however say that there is a slim chance that it may not heal if it is not definitely an infection and is related to the cancer spreading in the nodes. Although this cannot be ruled out at this stage she said that she wouldn't get any biopsy's done as she needs to give the wound time to heal. If it is cancer related then there may be some radiotherapy in the pipeline.


My platelets were very low today at 60 and my white blood count is very high at 11.23 which is expected and a good thing as my body is fighting the infection.

Discharged from Adelaide

My temperature behaved itself over the weekend so I rang to completely discharge myself from Adelaide Ward today.


Apart from not feeling very well last week my stay on Adelaide Ward was a really pleasant experience. Certainly much nicer than 4 years ago when I was on the old Adelaide Ward. The new Adelaide had plenty of nurses and the ward was clean and bright.


I had an appointment with Dr Maeve McKeogh at Sue Ryder today and we discussed my change of pain medication. Dr Maeve was a little concerned that they'd stopped the diclofenec especially as I said that my back was really hurting. It is more muscular than bone pain but since stopping the diclofenec it has got really bad, especially when I've been sleeping. I'm now taking Oxycontin and Oxynorm which are helping with the bone pain but not doing much for my muscle problems.

Semi-Discharge from Adelaide Ward

I've had a high temperature in the last 24 hours so although the Dr on Adelaide Ward said I could go home, he said he wasn't happy to completely discharge me as he wanted to save my bed until Monday in case my temperature was not settling, then at least I would be able to come straight back to the Ward rather than going through the GP and CDU (Critical Decision Unit) route.


Dr Draczynski called from the Leonardis Klinik, I had informed them earlier in the week that I was being admitted due to the boils under my armpit. It was comforting to speak with him and it made me feel reassured that everything that could be done had been done. He had some advice on what extra supplements to take to help with the healing process.


Like the Berks, Dr D said there could have been a number of reasons why I got the infection but first and foremost is because my immune system is compromised due to all the treatments I've had and my body obviously couldn't cope. As the Dr's have said at the Berks the wound will heal from the inside out and will take quite a long time, anything from 6-8 weeks (if not more!!!).



So, I've come home feeling really tired and weak with a bad back (too much lying around in bed!).

Not allowed home just yet

I thought I might be going home today but in light of the hallucinations and not being able to form sentences properly they decided to keep me in a little longer plus more importantly they're concerned about my kidney function and high calcium levels.


Dr Barrett did her rounds on the Ward today and thought I looked a lot better than the last time I saw her on Monday. She said we can stop the IV antibiotics which is a relief as my stomach is in need of a break! They've been running blood tests everyday and the results have indicated deterioration of my renal function so diclofenec has been stopped as has Tramadol which they think is the reason for the high calcium levels and also the recent hallucinations.


My Haemoglobin levels have dropped to 8.9 since being admitted so I'm having 2 units of blood, Pamidronate to help with the Calcium levels and now they're also giving me saline by the bag. Loads of it.

Hallucinations

I started off with a fairly good nights sleep but soon got woken by the wound leaking, so I had another dressing. Unfortunately I hadn't brought many clothes into the hospital as I didn't know what to expect and that I would be getting in a bit of a mess! In the end I had to start wearing the hospital gown which was better than keep spoiling my clothes but someone pointed out that I looked like a dinner lady!!

Following the start of the IV antibiotics by stomach has gone mad (if you know what I mean). It's horrible.

The wound leaked again at lunchtime, so another dressing change. The doctors have also changed my medication slightly as I was complaining that my back was beginning to hurt more. I thought maybe from lying in the bed the majority of the day. They've upped the Tramadol at night.

During the afternoon and evening I started having funny visions and slurring my words. I was seeing images in front of me that actually weren't there. A balloon had been left from a previous patient and I kept seeing things on it when it was a plain balloon. Something obviously wasn't right. I tried sending people txt messages and it was a nightmare. If I did manage to send one, it was either one word because somehow I'd lost the rest of it or I was sending out old messages. I was all over the place and couldn't understand it. I'd had quite a few visitors and I think they must have thought I was going mad (or maybe it's just normal for me!!).

Admitted to Adelaide Ward

I rang up the RBH this morning and a bed is available. I decided to email the Leonardis before going in just to let them know what was going on. Christine rang me from the Leonardis to check that I was okay and she said that Dr Draczynski would be in touch to chat over what is going on at the moment.

Went in around midday and was booked in by a doctor and a nurse. I had a bed by a window so it was nice and bright. Such a difference to the old Adelaide Ward. The doctor took a look at the boils and said that they would start me on IV antibiotics straightaway and that a surgeon would probably come and see me later on to discuss the surgery tomorrow. They said that I would have to have a general aneasthetic so it was going to be nil by mouth from midnight. No midnight feasts for me then!! Actually, appetite completely out the window anyway.

Around 6pm a surgeon came to see me and check over the boils. He felt he didn't want to make the decision himself as to whether I should be taken down for surgery tomorrow morning or attempt to withdraw the fluid using a needle and syringe as they did on Friday in Ultrasound. He decided to call upon his senior colleague who would be doing the minor operation. They came back an hour or so later and decided to do it all at my bedside. No anaesthetic!! Well, as I said on Friday, it is very numb in my armpit so I said I'd let them try.

They managed to get more of the fluid out using the needle aspiration method but not very much so with my permission they asked if they could cut the hole open more with scissors where the needle went in. I just said carry on as it still wasn't really hurting and they did say that this would save me having the aneasthetic which was a positive move (I know I'm always sick with anaesthetics so I was quite relieved). A closed pair of scissors were put in the hole and twisted around to make the hole bigger and then the fluid just started gushing out. There was loads of it. Chocolate milkshake coloured. It was still fairly painless at this point. It did start getting a little more painful when the surgeon was putting pressure from left to right of the armpit to encourage as much of the fluid/pus to come out. As there were two boils (one either side of the armpit) it does look like they were connected as all the fluid came out of the first incision.

The surgeons then packed the deep hole with some kind of seaweed gauze (which helps the healing process), covered it with more gauze and then a massive plaster. Job done. Unfortunately they did say that it could take 6-8 weeks to heal! NOOOO!!! What about my swimming and showering. Pain in the you know what!!

Finally have an appointment with Dr Barrett

Saw Dr Barrett this afternoon and was finally able to show her the boils under my armpit. She initially said that she wanted me to continue on the antibiotics (which I had been taking for the last 10 days and hadn't really done anything) and she would like to see me on Wednesday before making a decision on whether to admit me and start me on IV antibiotics before considering surgery if the antibiotics hadn't done anything. I started feeling quite dizzy and sick at this point and had to sit down. Steve said that I hadn't been feeling well for weeks and was very lethargic and tired. Dr Barrett said that I could be admitted today but if a bed wasn't available on Adelaide ward, I would have to wait in the CDU unit (clinical decision unit) or I could go home and wait for a bed to be available, hopefully tomorrow. This was the better option. Dr Barrett felt that it could either be an infection or more disease spread which was a bit of a surprise.

At my Wits End

Having seen Dr George twice this week about the lumps/boils under my armpit and her attempts to communicate/speak with Dr Barrett's secretary, I made one more attempt to speak with Dr B's secretary myself this morning and again had to leave a voicemail message, so under my own initiative I went up to the Berkshire Cancer Unit at midday and asked to see someone about my lumps. Luckily as it was the end of clinic it wasn't very busy and I managed to see a new Consultant called Dr Fong. He was really nice, chatted about my history and then examined the lumps. He firstly decided to change the antibiotics I was on and gave me a card to send me for an ultrasound to see what was going on. Then he asked Barbara Gray (the clinical nurse in clinic) to contact Dr B's secretary to get me seen in Dr B's clinic on Monday.


Amazingly, Dr B's secretary answers her internal phone calls! When asked if I could be added to the end of the list she said that it was already full and that this wasn't possible. At this point Dr Fong piped up that this woman must be seen on Monday and that if there was any problems with adding me to the end of the list then he would speak with Dr Barrett. Yippee. At last, some action. I was happy with that because my next clinic appointment with Dr B was on Monday 15th and I didn't want to wait another week before my armpit was thoroughly looked at.


I went off to the ultrasound dept and was lucky to be seen within an hour (everything just seemed to go perfectly once Dr Fong had got involved). The radiologist said she could see a lot of fluid and decided to try and draw some off with a needle and syringe. It didn't hurt when the needle went in because the area is already numb. Unfortunately the fluid was very thick and so the radiologist only managed withdraw 15ml. It looked like chocolate milkshake! She said the images would be sent off to Dr Barrett and she would be able to discuss more with me on Monday.


When I got home there was a message on my ansaphone from Dr B's secretary saying that she had received the fax and two voicemail messages from my GP, Dr George and my voicemail message this morning. She went on to say that Dr Barrett felt it wasn't necessary to move my appointment forward and would see me on the 15th!! Unbelievable. Luckily this has been superceded by Dr Fong's request but what am I supposed to do to be seen and get some action. Today has only happened because I went up to the cancer clinic.

Pamidronate and blood transfusion

I managed to organise the blood transfusion to be administered at Sue Ryder this week rather than waiting for the Berks possibly next week. I stayed over night on Wednesday so that they could continue to administer the 4 units over the two days.

I came home yesterday but I'm not feeling the benefits yet. I still feel quite tired today and a little sick. Let's hope I pick up over the weekend.

Appointment with Dr Barrett

I did finally organise an appointment with Dr Barrett for Monday afternoon although they had to squeeze me in at 1pm. We arrived early for the appointment and only had to wait 5 mins before we were called in.

Dr Barrett's first words were "what have I been up to since I last saw her because my haemoglobin had dropped considerably again". I've not really done a lot although I wasn't surprised when she said this because over the last few days I have been feeling really tired and lethargic again but couldn't quite pinpoint it to a low blood count. Dr B suggested another blood transfusion so this was left to me to organise either at Sue Ryder this week if poss or at the Berks which would probably be next week. I don't really want to wait until next week because it is school half term.

She then went onto say that there was an inevitability about chemo but it was a matter of when was the right time, especially as my bloods had dropped so dramatically again. She suggested that we wait another 4 weeks before making a decision and hoped that my body would recover more before embarking on the chemo. Dr B went through my notes (which was a bit disappointing as I thought she might have done this before our meeting and had a treatment plan in mind!). Anyway, she said that we were running out of chemo options as I had had so many and asked if I'd had certain chemos which I knew I had. She then suggested that we should recycle a couple which I'd had quite a few years ago. I know for a fact that they will make my hair fall out again, which she confirmed. I asked about Herceptin. I haven't had this for a few years and when it was stopped, the theory was that we would save it for a later date when I might need it as it was doing some good at the time. Dr B agreed that we could try this again.

Dr B wants to see me again in 4 weeks and would like to keep to a Monday appointment again. She did however apologise for the fact that my original appointment time got cancelled. She would like to keep continuity for my treatment between herself and Dr Dallas which I'm more than happy with as I've met Dr Dallas on a number of occasions and she is very nice and very capable.

Now all I need to do is speak to Sue Ryder and see if we can organise the blood transfusions over there. Unfortunately Dr B wants 4 units which may mean an overnight stay at Sue Ryder.

Farrah Fawcet's documentary

"Farrah's Story" - http://www.msnbc.msn.com/id/30749929/

Follow the above link to see Farrah Fawcett's cancer journey. For me it was so interesting because I've done so much of what she has done with Prof Vogl and Dr Jacob who was originally at the Leonardis Klinik.

If you watch the documentary, especially the treatment she had with Prof Vogl you will understand the pain I went through last year with the chemoembolisation and laser treatment to my liver. It was very painful and I was very sick after it.

I think Alana Stewart did a fantastic job putting this together.

I don't bl**dy believe it!

Just when you have the best laid plans an all! On Monday 18th I was supposed to be having an Oncology appointment with Dr Barrett to discuss the way forward and I assume what treatments she thought I should be on next. The last time I saw her she asked me to make the appointment for a Monday when she would have more time to talk this over with me and therefore not a clinic day on a Wednesday when it is a rush job and you barely get 5 minutes to talk.

Well, this morning I've received a call from Dr Barrett's secretary saying that the Monday clinic has been cancelled and can I come in on Wednesday at 10.30! What!! I've had to make so many arrangements for next week this just can't be happening. Steve's booked the day off as we already have another hospital appointment on Monday morning, I was then having my Pamidronate at Sue Ryder on Wednesday on my normal Day Care Centre day so that I didn't have to return to the Berks on Thursday to have it.

So now they want to squeeze me in on clinic day on Wednesday but I thought I needed more time with Dr Barrett for a proper discussion. In the meantime, I've got to rearrange everything.

I've spoken with Barbara, Dr B's clinical nurse and she is going to see if I can be seen on Monday morning. She also asked if I could be seen in clinic on Wednesday and then go off to Sue Ryder for the Pamidronate after that but I don't really want to be trekking all over the place, if I'm already at the Berks then I may as well have the Pamidronate there! What a farce, as usual. They must think that I've got nothing better to do than sit around waiting for appointments. I've not had a great week as it is, I'm still very tired and have lots of aches and pains so I'm not in the most positive frame of mind.

Farrah Fawcet

There was a news bulletin on the 6pm news this evening regarding Farrah Fawcett and her battle with cancer. Unfortunately she is now beyond treatment which is very sad. What was very interesting to me was the video diary that she has been doing because she has been going to Germany for treatment and I saw snippets of the diary on the news and recognised two of the German Doctors that she has been treated by. Prof Vogel in Frankfurt and Dr Jacob who was my original doctor at the Leonardis Klinik when I first went there.

I would like to see her Video Diary (A Wing and a Prayer) which is being screened in America on Friday 15th. What is also sad for me is that with all her money and the fact that she has had access to the same Doctors as me in Germany, she is still not going to make it. I suppose I must remember that she has a totally different cancer to myself which I think has been very aggressive but it is a reality check all the same.

CT Scan results - not such good news

Went for my Oncology appointment today and CT scan results. Unfortunately not good news. There has been disease progression in the liver and lung although the lung met is only marginally bigger than it was in comparison to the February CT scan. There appears to be 3 tumours in the liver measuring 39x32 mm, 19mm and 16mm. I was a little surprised by this news as I was obviously hoping that there was either no progression or the tumours had shrunk. I'm certainly disappointed but what can I do? I've got to keep a brave face for the kids.


My Oncologist has said that she would like to put chemo on hold for the next 4 weeks due to a low platelet count of 89. It has been this low in the past so not sure why stopping chemo due to that although it's obvious that the chemo isn't containing the spread of the disease (although it may be slowing it down). She has also said that in light of this new spread the PCT (Primary Care Trust) will probably not agree to me continuing with Avastin so I'll be having my last one tomorrow.


The Oncologist wants to see me in 4 weeks, but not at a chemo clinic so that we can have a good chat. In the meantime, I've emailed the Leonardis Klinik with a copy of my scan results and I await to find out what their recommendations may be.

Feeling better

Since the blood tranfusions last week, I've been feeling much better. Certainly more energy so I'm able to do the housework and shopping. (How exciting!!) I should have been having chemo today but have postponed it another week which should also make me feel better.

CT Scan

Had a CT scan this evening at 7.30pm. I had to drink the white chalky liquid and then when I went in for the scan they couldn't initially get a line in for the dye to be injected but eventually did.

I won't be getting the results for a couple of weeks when it's my next clinic appointment plus it Easter Bank Holiday weekend tomorrow so there's no one around to process the results until next Tuesday anyway.

Blood Transfusions at Sue Ryder

I've just spent the last two days at Sue Ryder having a blood transfusion. Four units to be exact. Two yesterday and two today, they each take 3 hours so they wanted me to stay overnight yesterday. It's typical really because I've postponed my next chemo so that I can spend some quality time with the kids in the Easter holidays and then I end up being away for two days.

Anyway, I'm home now and feeling better for it. I hope my energy increases and lasts until the next chemo in two weeks. I see a pattern forming and that this particular chemo regime affects my haemoglobin and therefore I'm so fatigued that I find it hard even going up the stairs without being out of breath and having to take a rest before doing anything!

Feeling really bad

Everytime I walk up the stairs I'm totally out of breath and have to sit down and rest. It's a real pain. Everything hurts when I move, legs, body, arms. I suppose I'm expecting a miracle after the blood transfusion on Monday.